Grief While Sheltering In Place

April 14, 2020January 16, 20232 Comments

My apologies as this one bounces around a bit. I started writing in April 2020, picked it back up in July 2020, again in January 2021, and added the painful finishing touch in October 2022.

–

July 2020
The following was written mid April 2020. But for the life of me I couldn’t finish it. Each time I tried my day would inevitably be ruined. Depression. Sadness. Disinterest. It wasn’t till I went for a social-distanced walk with my best friend – which at the time felt equally illegal and immoral, that she said something profound: maybe you can’t write about it because it’s not over yet.

She was right! All my previously terrible posts about my daughter almost dying were palpable because I already knew she survived them!

I honestly don’t know if all four of my immediate family members will survive the year; till there is a vaccine; till there is herd immunity…

That being said, here is my original post from mid April 2020. Naive? Maybe not. Terrified? 100%. Lysoling every package? You bet!

–

April 2020
Coronavirus. Blah. It’s all we hear about 24/7 since the first cases appearing in late 2019. At the time I’m writing this I have been quarantined for 31 days, since the evening of March 14, 2020; two days later we were officially ordered to “shelter in place” (SIP). So ominous sounding.

The early days were the hardest. Scary, new, stressful, on edge, waiting for signs, symptoms, to appear. I thought then maybe I should start journaling or blogging again to document this time, but we were all going through the same emotions. Historians will capture this time just fine without me putting pen to pad. Last night however it hit me. I jotted down an entire page of notes in less than 5 minutes. If for nothing else, I want to remember this time. This will be our version of our grandparents’ Great Depression and the impacts it had on their psyches for the rest of their lives. Like the inspiration for this whole blog, I want to remember all the terrible things we’ve survived.

Before the SIP order was official, people had already started panicking and making runs on grocery stores and Costco. On Friday March 13th (how appropriate), I made my last shopping trip to date – I went to Costco for dog food – the one thing we had forgotten to stock up on. Most stores were already out of toilet paper and water (like WTF?! but whatever – the great facepalm action of this pandemic.) There weren’t any cleaning supplies left either, but that was understandable at least. While there I was receiving text messages of rumors the schools were closing. By the time I got through the seriously massive line, and being stuck behind a woman yelling at the cashier for not letting her buy the six packs of water she had pushed around the store (ugh), I escaped to walk the football field length to where I had finally found parking earlier.

I got in the car and saw it was official, the schools were closed. I cried. The first of many times. So much was changing so quickly. Thinking about the schools closing still makes me cry, even while writing this. We said goodbye to our friends not knowing for how long, and definitely not expecting it for as long as it has become. A few weeks later when the governor announced that school would not be resuming again this year Alex and I cried together while I told him. He loves his teacher and his school and his friends so much. This was his only year at this school – next year he will be at the school walking distance from our house, with only some of his old classmates joining him. The kids are losing so much during this time. Last night at bedtime, Alex asked if we could go for a drive the next day to see his old school, “the one I can never go back to.”

I’ve been really open with Alex about the virus and the situation we are in. He has become neurotic about washing his hands, which is great but sad. On the way home from his last baseball practice before SIP, he cried all the way home because he couldn’t eat his snacks because his dad didn’t have hand sanitizer in his truck. He told him it was OK to eat it anyways but Alex still wouldn’t.

The big asterisk on our situation is Addison. She is the vulnerable demographic for COVID-19. She has been so healthy for the last year plus (which is why I haven’t blogged in so long). Since SIP we have been giving her extra breathing treatments and her percussion vest twice a day. If she does get sick this will at least give us the head start of keeping her lungs clean and clear. I’ve seen my daughter intubated before multiple times and I don’t want to ever again. It keeps me up at night thinking about her getting sick and having to be hospitalized and only one or neither of us being allowed to be with her when she dies. This thought tortures me.

Addison has really lost the most from SIP. At school she had a teacher with a small student ratio, 1:1 nurse, 1:1 ASL interpreter, Speech & Language pathologist, physical therapist, occupational therapist, and feeding specialists. And now she has me. I cannot begin to give her a fraction of the support she was receiving at school. It fills me with so much grief and guilt. I have two children at vastly different developmental stages that both require my attention. Everything with Addison is hands on, I cannot put an assignment in front of her and do something else, or help Alex with his work. I am more busy during SIP than I was before. Even while writing this I feel guilty that I’m not using this time to work on my ASL program. Addison continues to have little to no interest in signing regardless. I fucking hate thinking and writing about this. It sends me down a deep hole of regret and frustration. We just can’t seem to unlock this girl. It’s been a long running joke that Addison does so much more at school than at home. More signing, more walking, more eating, more everything. Well it isn’t funny anymore. I can’t educate this girl on my own. And it’s not lack of resources. Her teacher is amazing and gives us endless amount of resources and support, it’s just not realistic in our days to get to even a fraction of it.

As for me, I’ve become accustomed to staying home. I was made for this. I’m an introvert – I love staying home. On a vain note, the hardest part for me at first was losing the gym. On the last day before SIP was ordered I completed my ten-week bodybuilding program. My big goal was to repeat the program and roll into 35 in the best shape of my life. I’ve honestly had to mourn the loss of this goal and my progress. It’s so hard to find motivation to workout at home. Not helping the matter is my new love of baking bread! Real life, fresh-made artisan bread out of the oven slathered in salted butter is life itself.

What I’ve found that helps me during this time, and I acknowledge probably doesn’t help most people, is the fact that I don’t expect this SIP to lift anytime soon. I expect this quarantine to be long and slow. Accepting this makes each extension expected rather than a shock. I also acknowledge how fortunate my family is to not be financially affected during this time – my husband is an essential government employee and I am my daughter’s home healthcare provider. Most of our friends have been affected and want/need this to end as soon as possible. Thankfully we can ride this out; we have to protect our daughter with co-morbid conditions.

I worry about how we will even be able to go back to “normal” after this. With contagion now a fear along with mass shootings, will large crowds ever feel safe again?

–

January 5th, 2021
Tomorrow, on the 297th day since our first lockdown began, I will receive my first dose of the Pfizer-BioNTech COVID-19 vaccine. It didn’t even cross my mind that I would be a candidate before the general public. Turns out my status as an In-Home Support Services (IHSS) Provider for Addison qualifies me. I started shaking when I found out. I wanted to cry. It felt big. Not because I was scared, I’m not. It feels like hope when we complacently hear about over 360,000 Americans dead already from the virus.

My family survived the year but there is little reason to believe 2021 will be any better. Yes, we have vaccines now but the roll out is slow. Addison was back in school and it was going amazingly before they shut it back down again for at least December and January. Oh yeah, and the new fancy virus mutation that is even more contagious!

–

October 6th, 2022
More or less the pandemic is over. Covid is just a part of our world now. I ended up getting two more vaccine shots, including a booster. We opted to not vaccinate our kids. The kids went back to school, first with masks, but now finally without. In April 2022 my son and I both got it. We had attended his schools first “normal” event – a spring fling dance which turned into a superspreader with over 100 kids out of school the following week. We still did not want Addison to get it so we isolated upstairs in the master bedroom. My husband took off work to care for all of us. He brought us every meal and anything else we needed. Placing them on a table positioned outside our bedroom door. I know it was a hard week for him doing everything but we appreciated it immensely.

I didn’t feel too sick at first, Alex mostly had a cough and upper respiratory symptoms. We watched movies and shows, and played board games. I got so tired of playing games, all I wanted to do was do puzzles and watch movies to pass the time. I did end up getting very sick. “Very” by my definition of comfort. I didn’t need to go to the hospital but if I was reclined I could not clear my airway. I cried to my husband that I was scared I was going to die in my sleep. I was dizzy and foggy, but no upper respiratory symptoms like my son; and neither of us had fevers.

Some days when my husband and daughter weren’t home, we would put on masks and go downstairs and out to the backyard using a Clorox wipe as a glove to open the doors. We would lay in the sun to soak up some vitamin D and cry. Like I’ve said before, I am a home body, but staying in one room for days on end messes with your head. I missed my husband. I missed my daughter. In retrospect it was a really special time Alex and I got to spend together. We probably won’t ever have the chance to spend an entire week together like that again. Just him and I, every meal, ever minute, every night, cuddling. We were obviously so happy when we finally tested negative and could emerge and return to life and school. Since then, Alex has mentioned with fondness that he wants to get covid again so we could spend another whole week together.

Addison escaped getting covid from us in April thankfully. In July 2022 she got sent home from school for having a runny nose… I tested her at home and she was negative. We went on a camping trip that weekend; her runny nose became the worst I’ve ever seen! Soaking through her pillow case and sheets at night. But no cough or fever, and in general acting happy. While also on the trip my son was complaining of a sore throat. When we got home I could see a huge ulcer in the back on his throat and made him an appointment. I took both kids so if it was strep they could both get medication. They swabbed them both, and also tested them for covid. Both came back negative for strep, but Addison came back positive for covid! When I got the results I tested her again at home, negative. Between being sent home from school with a runny nose, and this day at home, the PCR test picked up that she had had covid. Our high risk comorbidity child, so sure she would be on deaths doorstep if she got it, had prevailed with only a runny nose. A bad runny nose, but only that!

–

Sadly, the one thing that didn’t survive the pandemic was my marriage.

We Finally Get A Diagnosis

June 13, 2016June 23, 2016Leave a comment

Previously on “Momma Swears A Lot”: Upon learning of Baby Girl’s lack of auditory nerves, genetics got involved again to hopefully find out why they never formed. Since her early birth, doctors have been trying to determine whether her various conditions are due to errors in her DNA, or consequences of prematurity. Prior to the Craniofacial panel meeting, I spoke on the phone with our geneticist. After reviewing Baby Girl’s medical record, the geneticist believed she may have a condition called 3C syndrome. She had blood taken and we waited. Three weeks later the results were back, and like most tests done on Baby Girl, the results were inconclusive:

“The testing we ordered looked at a panel of of 16 genes: AHI1, ARL13B, B9D1, CC2D2A, CEP290, INPP5E, KIAA0196, MKS1, NPHP1, OFD1, RPGRIP1L, TCTN1, TCTN2, TMEM216, TMEM67, TTC21B. The ones most associated with 3C syndrome are KIAA0196 and CC2D2A.
We received the testing result and it was negative – No sequence abnormality was detected. In other words – no spelling error was detected in any of these genes.”

Her geneticist was surprised and the decision was made to do an entire genetic testing of Baby Girl. Four months, and 20,000+ genes later, we had an answer.

♦

Four months prior we entered our geneticists office to discuss what full genetic testing would entail. Along with Baby Girl’s blood, they would also need samples from each of us, her parents. They would not be doing genetic testing on her father and I but rather using our sample for comparison to track the line of inheritance if an error was found in her sample. Like asking a fortune teller how you’re going to die, we signed form after form agreeing to wanting to know whatever the results may be. We also had to decide whether we wanted to know any secondary results that may be found, such as if she carried abnormal BRCA1 or BRCA2 genes, the genes typically thought to be responsible for hereditary breast cancer. This choice also included possible medical and insurance consequences of knowing such information ahead of time. Since the initial seed was planted in my mind that she had suffered a mutation during development the thought of childhood-cancer has also sprung up. We only wanted to do this once, we wanted to know everything.

After an excruciating 4 month wait, and calling multiple times to check on the results, I finally got the call. The call came from the geneticist that had been with us since the beginning, since the ultrasound that initially revealed her cleft lip and palate. They had an answer. She told me that they had found a single mutation that accounted for all her conditions and they wanted us to come in to talk about the findings – in a week and a half… Ten more days of waiting. I made the appointment but I nearly begged her to give me any morsel of information she could.

“They found the gene responsibility for a condition called CHARGE Syndrome, like you ‘charge’ your cell phone. As you know I always advise not to search the internet but I know you probably will.”

She went on to tell me one more thing, that the cause of her genetic mutation was “heterozygous/de novo,” meaning it did not come from me or her father but rather was a new, random mutation that likely occurred just after fertilization. In other words, before I even knew I was pregnant. This small piece of information took so much weight off my soul. Not just that we finally had a diagnosis but that I hadn’t done this to my daughter. I had worried that the genetic testing would again come back with no answers and she would end up in the medical books as a new, never before seen case: “Alien Mystery Baby Syndrome.” But more importantly to me was that there was nothing we could have done to cause or prevent this.

After hanging up the phone, I sat back in my dining room chair and stared out the window. I searched for how this diagnosis made me feel. We had desperately wanted answers for so long and they had evaded us at every turn. Now that we had a cause, a condition, with a name, and a prognosis, the pencil sketching of what our future might look like began to look more permanent. Immediately I consciously acknowledged that I would have to let go of the thought that all her conditions were coincidental and she would one day outgrow them and be “normal.”

Initial routine pregnancy testing had said we had a very low chance of having offspring with a genetic disorder. And later when I underwent a double amniocentesis, the chromosomal results for both twins had come back normal. Our geneticist had warned us then that it didn’t rule out genetic disorders, but in our naive minds it did. Since her birth the common consensus was that the remedy for most of her conditions would be time.

“Once she gains weight she’ll be fine.”

“Once she gets a little older and bigger she’ll be fine.”

“Once they send her home she’ll start catching up.”

“By the age of two she’ll be caught up and be a normal kid.”

“When she finally gets past all this stuff she’ll be just like everyone else.”

The geneticist was right, I would Google “charge syndrome”, for hours in fact. I needed to wrap my head around what it meant before I called my husband to give him the news. He had been my rock through everything but I knew he would need me to be his on this one.

The first thing I saw was the faces of children with CHARGE syndrome. I was terrified looking at their malformed faces. At every turn our geneticist had warned us about looking online because you are likely to find the most severe cases. However, looking from those pictures to my girl, she didn’t look like them. She shared some of the facial features but her’s were softer, less profound. I remember thinking how glad I was that we hadn’t received this diagnosis during pregnancy because these photos would have been even more terrifying. In Baby Girl’s case, she didn’t have every characteristic of CHARGE Syndrome, but CHARGE Syndrome explained all of her unique characteristics.

“CHARGE syndrome is a disorder that affects many areas of the body. CHARGE stands for:
Coloboma of the eye
Heart defect
Atresia choanae (also known as choanal atresia)
Retarded growth and development
Genital abnormality
Ear abnormality
The pattern of malformations varies among individuals with this disorder, and infants often have multiple life-threatening medical conditions.”
–https://ghr.nlm.nih.gov/condition/charge-syndrome

*For additional information I have included a full chart of characteristic, descriptions, frequencies, and links to pictures at the bottom of this post.

The day finally came in late October 2015 to meet with our genetic team and discuss the findings. By then I had visited countless websites, read hours worth of articles, and started to digested her diagnosis.

When our genetic team greeted us I sensed they were trying to be very gentle with us. We showed them that was not necessary. We commented that we must be the only parents to be happy and laughing about the news of their child having a genetic disorder. Of all the countless tests our daughter had endured, this one finally gave us an answer, a solid spot to push off from, a game plan. Not to mention to keep her Medi-Cal coverage we financially needed a diagnosis. They reiterated what they had told me over the phone about her condition and went over the defining characteristics.

Coloboma of the eye: clefting in the eye, she does not have this characteristic. She has since been prescribed glasses for farsightedness, but otherwise her eyes are normal. 80-90% of “CHARGErs” (people with CHARGE Syndrome) have significant vision loss or blindness.

Heart defect: she was born with a threatening VSD which defied the doctors by closing on its own in months rather than in years, as expected. She still has a PSO heart defect – typically this hole closes at birth. She receives bi-annual echocardiograms to monitor her condition. At this time she is stable and is not in need of invasive intervention. Continuous oxygen is required to keep her blood properly oxygenated.

Atresia choanae (also known as choanal atresia): a blockage of the nasal passage(s), usually by abnormal bony or soft tissue. Typically this is discovered at birth as the child is unable to inhale through their nose. She does not have this condition; however, her cleft palate has been left open for the purpose of keeping an enlarged airway.

Retarded growth and development: normal birth weight is typically seen and then followed by inadequate growth. This is most likely due to feeding/swallowing issues in infancy, which is most likely the case with Baby Girl small stature. She is currently proportionate in weight-to-height, and her weight is now good for her age but she is markedly smaller than her twin brother. He outweighs her by 8 pounds and is 5 inches taller. It is likely she will forever be smaller than her peers due to her stunted growth in infancy.
Developmental delays are especially common as CHARGErs typically have low muscle tone (hypotonia), and multiple life threatening condition at birth requiring prolonged hospitalizations. Brain and skeletal anomalies compound these developmental delays.

Genital abnormality: visible abnormalities are more common in males, Baby Girl does not have this characteristic. However, they may experience delays in puberty, or need hormonal therapy to initiate puberty. Kidney anomalies are also common.

Ear abnormality: anomalous ear lobes, cochlear abnormalities, balance problems, hearing loss. Kind of, yes, yes, and yes.

Since the designation of the CHARGE nomenclature, additional common characteristics have been attributed to the syndrome:
– Choanal atresia or stenosis: decreased/absent sense of smell
– Cranial nerve problems: facial palsy, hearing loss, undeveloped auditory nerve(s), swallowing problems, reflux, sinus problems
– Cleft lip and/or palate
– Dental problems
– Behavioral concerns
– Brain anomalies: Dandy-Walker Variant in Baby Girl’s case
– Increased pain threshold: potential superhero

And after the geneticists explained all of that, they gave us the Secondary Findings: None.

♦

As wonderful as finally having an answer was, please don’t underestimate our grief. Learning that our daughter had a genetic disorder and would never be “normal” fucking sucked. It’s terrible to have to ask if your child’s life expectancy will be shortened. (The answer being baring complication due to her existing conditions, her life expectancy is apparently normal.) It’s fucking unfair. It is so unbelievably fucking unfair. One in every 10,000 births – not the jackpot I ever dreamed of winning. If she has children someday the odds are 50% her offspring will have CHARGE Syndrome.

I am not a believer of “Everything Happens For A Reason.” It sucks this happened to our family, it’s fucking unfair, and it hurts everyday. I don’t believe there is a reason for any of it. And please please please please please PLEASE don’t try to point one out to me. There are just no words to mend some injuries.

The diagnosis changed the way I looked at her. At first it felt like a veil of expectations had been lifted. She was free to be whatever she was going to be. At first I looked at her with pity, this poor little broken baby of mine. However I think it made me love her more. It allowed me to understand her better. I still have high expectations for her but when she actually accomplishes them it gives me an unbelievable high for days.

The prognosis for every CHARGEr is different and unforeseeable. The verdict is still out for her cognitive ability. I don’t like to skip ahead but the twins were recently assessed as part of their high-risk status of prematurity – our healthcare provider will closely follow their development till the age of three. Baby Boy scored average across the board, and above average in fine and gross motor skills. Proud mama bear over here! They admit their test does not accommodate for hearing loss, and therefore Baby Girl scored in the low average range – which is encouraging. They expect that as her communication skills improve through acquisition of sign language, as well as fine and gross motor skills/strength, that this score will increase. We will meet with a communication specialist in the near future to better assess her skills. They will be tested again in a year, before their third birthday.

I included this information to stress that my daughter is not “retarded.” Yes, she has a major, complex genetic disorder. Yes, she is extremely medically fragile. Yes, she has developmental delays. No, she can’t hear you. But she is watching, and she is learning, and she is much more intelligent than most people give her credit for. As I have mentioned before, I am hyper-aware of how people explicitly and unconsciously act around her. Most outings make me want to scream because people either won’t look at her, walk in a big circle around her, frown at her, or say something along the lines of “poor baby.” UGH!!!! I know children (and adults for that matter) with special-needs make most people uncomfortable, and my daughters medical conditions can make her especially scary at times, but she’s so fucking awesome too. My mommy wish as she gets older is for more people to be able to see that. Like every child, some days they drive you crazy, push you to the breaking point of your mental and emotional sanity, but at the end of the day you couldn’t imagine loving a tiny human any more than you love them.

I tried to keep the genetic information as laymen as possible. Please know, like most genetic conditions, it is extensively complex and cannot be completely, and fairly, explained in this one article.

♦

This post is dedicated to a tiny family in our lives going through a similar experience. It flipping sucks and it’s not fair. You may feel lonely but you are not alone. We each process this news in our own time. We love you! – G, J, A & A

*Major Features of CHARGE Syndrome (very common in CHARGE and relatively rare in other conditions)

FEATURE	INCLUDES	FREQUENCY
Coloboma of the eye	Coloboma (sort of like a cleft) of the iris, retina, choroid, macula or disc (not the eyelid); microphthalmos (small eye) or anophthalmos (missing eye): CAUSES VISION LOSS Pictures	80%-90%
Choanal atresia or stenosis	The choanae are the passages that go from the back of the nose to the throat. They can be narrow (stenosis) or blocked (atresia). It can be unilateral (one-sided) or bilateral (both sides), bony or membranous. Unilateral atresia or stenosis can be difficult to diagnose Pictures	50%-60%
Cranial nerve abnormality	I – Missing or decreased sense of smell	90-100%
	IX/X – Swallowing difficulties, aspiration – Pictures	70%-90%
	VII – Facial palsy (one side or both) – Pictures	40%
CHARGE outer ear	Short, wide ear with little or no lobe, “snipped off” helix (outer fold), prominent antihelix (inner fold) which is discontinuous with tragus, triangular concha, decreased cartilage (floppy), often stick out, usually asymmetric – Pictures	>50%
CHARGE middle ear	Malformed bones of the middle ear (ossicles): CAUSES CONDUCTIVE HEARING LOSS	Common
CHARGE inner ear	Malformed cochlea (Mondini defect); small or absent semicircular canals: CAUSE HEARING LOSS AND BALANCE PROBLEMS – Pictures	90%

Minor Characteristics of CHARGE: Significant, but more difficult to diagnose or less specific to CHARGE

FEATURE	INCLUDES	FREQUENCY
Heart defects	Can be any type, but many are complex, such as tetralogy of Fallot	75%
Cleft lip +/- cleft palate	Cleft lip with or without cleft palate, cleft palate, submucous cleft palate – Pictures	20%
TE fistula	Esophageal atresia, Trancheo-esophageal fistula (TEF), H-shaped TEF	15-20%
Kidney abnormalities	Small kidney, missing kidney, misplaced kidney, reflux	40%
Genital abnormalities	Males: small penis, undescended testes Females: small labia, small or missing uterus Both: lack of puberty without hormone intervention	50% 25% 90%
Growth deficiency	Growth hormone deficiency	15%
Growth deficiency	Other short stature	70%
Typical CHARGE Face	Square face with broad prominent forehead, arched eyebrows, large eyes, occasional ptosis (droopy lids), prominent nasal bridge with square root, thick nostrils, prominent nasal columella (between the nostrils), flat midface, small mouth, occasional small chin, larger chin with age. Facial asymmetry even without facial palsy – Pictures
Palm crease	Hockey-stick palmar crease – Pictures	50%
CHARGE Behavior	Perseverative behavior in younger individuals, obsessive compulsive behavior (OCD) in older individuals	>50%

Other Features of CHARGE: consistent with CHARGE, possibly medically significant, but less helpful in making a diagnosis

FEATURE	INCLUDES	FREQUENCY
Chronic ear problems	Lots of infections, fluid in the ears, PE tubes until teens	85%
Sloping shoulders	Underdeveloped shoulder muscles, small or missing pectoral muscles, short neck – Pictures	Common
Limb/skeletal	Absent thumb, extra fingers, vertebral abnormalities	?
CNS abnormalities	Hydrocephalus, seizures, abnormalities seen on MRI or CT	Occasional
Thymus or parathyroid abnormality	Small or missing thymus, decreased immune system	Rare
Omphalocele	Omphalocele or umbilical hernia	15%
Nipple anomalies	Extra, missing or misplaced nipples	Occasional
Hypotonia	Low muscle tone – Pictures	90%
Scoliosis	Usually due to low muscle tone	Common

No one feature is required to make a diagnosis of CHARGE. Every feature varies from severe to absent in different children.
-http://www.chargesyndrome.org/about-charge.asp

My Daughter Is Deaf

February 26, 2016February 26, 20161 Comment

A month after Baby Squirrel was discharge from the PICU after nearly succumbing to septic shock and double pneumonia, we were back at the hospital for a sedated hearing test. The goal being to keep her completely still so we could finally get reliable results.

I was rather optimistic. We figured she had some hearing loss but we knew she could hear. I told her primary NICU nurse that there was a chance Baby Girl was Deaf and she reaffirmed that she was not Deaf, that she loved her music in the NICU and always responded to her daddy’s voice. Even the audiologist that attempted to check her hearing while she was sedated in the PICU believed she could hear because Baby Girl turned towards her when she entered her room out of her line of sight.

My best evidence for her hearing was at home one night when I was putting her to bed, my husband, who was downstairs, spoke through the baby monitor and Baby Girl started looking behind her for him. Yet there were other times when she was napping in the living room and I dropped a pan loudly on the ground and she did not stir. Evidence for her lack of hearing I chopped up to her being used to so many loud noises from her long stay in the NICU.

Baby Squirrel’s procedure took place in the same department as my D & C had a year and a half prior. Everyone commented on her being the littlest patient they had in quite a while. Even the smallest infant size gown they had hung off of her. In the photo below you’ll notice she was off oxygen. Around this time she was able to come off often and use it only at night while she slept. Now a year later, this nearly never happens. She’s much bigger now and with the increase in size comes an increase in our hopes that she would be outgrowing her lung disease. If she comes off oxygen now, even for a few minutes, the oxygen in her blood desaturates and she struggles to breathe and turns mottled and blueish. At the current age of 1 1/2, they now expect her to need oxygen till the age of three. *sigh*

When the time came, we went into the procedure room and I sat with her while the nurse tried to start an IV. The attending physician was one of Baby Girl’s PICU doctors (now I jokingly call him “Uncle Ben”). When the doctor and the audiologist were ready I was sent back out to the waiting room to, ya know, wait.

The test took about an hour and then I was brought back into her room for the results. Baby Squirrel’s hearing loss was “Profound.” Meaning she can’t hear. Anything. They tested both ears up to 120 decibels, equivalent to a jet taking off – painfully loud for a person of “normal” hearing. Nothing. The test rendered no response. My heart sank a little but I remember not being surprised. The audiologist said she may have some success with hearing aids, and if we wanted additional testing, an MRI could tell us if she is a candidate for cochlear implants. Before the audiologist left she told me to keep talking and singing to her.

“A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard-of-hearing. The implant consists of an external portion that sits behind the ear and a second portion that is surgically placed under the skin.”
-National Institute on Deafness and Other Communication Disorders

How cochlear implants work

Typically, to avoid major speech and language delays in a child with hearing loss, it needs to be identified and hearing aids need to be in place by six months of age. Baby Squirrel was now over 7 months old.

A few weeks later I took her to get fitted for hearing aids. She absolutely hated the forming putty being injected into her ear, she screamed and thrashed. This audiologist was so patient and kind, considering both twins were screaming their heads off. I ordered Baby Squirrel hot pink hearing aids – if you can’t hide it, rock it! As we waited for her hearing aids to be made, we moved forward with having an MRI of Baby Girl’s brain. The MRI would look for the presence of her auditory nerves. It was scheduled for my 30th birthday. I prepared for the best birthday present, or the worst.

After MRI and a lot of attempted IVs

Baby Boy had lots of kisses for his sister when we got home

The MRI went smoothly. Our favorite doctor from the PICU, Dr. F, was the attending physician. After, when I was allowed to go back and see my daughter, she was happy and smiley, obviously still enjoying the sedatives. She was covered in tape and gauze where they had attempted multiple IVs since her veins were still so small. Unfortunately, I would have to wait for the ENT specialist to review the images before I would be informed of the results. I emailed her to make sure she saw that the MRI images were ready for her, and sat back and waited to hear from her.

Nothing that day.

Nothing that night.

Nothing the next morning.

So many hopes and dreams depended on these results!

Still nothing.

That night in the middle of my workout session, my phone finally rang. I was annoyed that she had picked this time to finally call but I was relieved it was her, the ENT.

“I had a chances to review your daughter’s scans…It looks like your family should start learning to sign…I do not see an auditory nerve on either side.”

“Okay…” I said staring out the window at our unmanicured backyard.

The ENT continued to explain that due to the absence of Baby Girl’s auditory nerves, she was no longer a candidate for cochlear implants. Without the auditory nerves there was no path for the implants to communicate sound to her brainstem. She mentioned a new alternative option called an ABI but stated Baby Girl was probably not a candidate for that either due to her Dandy-Walker Syndrome variant.

An auditory brainstem implant (ABI) is a small device that is surgically implanted in the brain of a deaf person whose auditory nerves are lacking or damaged. The auditory nerves conduct the sound signals from the ear to the brain. The implant enables otherwise deaf people to have a sensation of hearing.

The hearing sensation is limited, but the implant recipients are relieved of total sound isolation, facilitating lip-reading.

The auditory brainstem implant consists of a small electrode applied to the brainstem, a small microphone on the outer ear, and a speech processor. The electrode stimulates vital acoustic nerves by means of electrical signals and the speech processor digitally transmits the sound signals to a decoding chip placed under the skin. A small wire connects the chip to the implanted electrode attached to the brainstem. Depending on the sounds, the electrode delivers different stimuli to the brainstem making deaf people hear a variety of sounds.

Due to the brain surgery required for the implantation and the limited effectiveness of the implant, the number of implant recipients is small.

http://www.hear-it.org/auditory-brainstem-implant

So that was it. Our daughter was deaf and there was nothing we could do to change that.

I’m guessing you are wondering, as we were, then why did everyone think she could hear? Why did she respond to sounds that were out of her line of vision? Why did everyone report how much she loved her music? Welcome to the club! And that is why Baby Girl/Squirrel has another nickname: Alien Mystery Baby. Nothing about her seems to make sense, she leaves many of her doctors scratching their heads, and most tests leave us with more questions than answers. I’ve had doctors ask out of medical curiosity if they could follow her for their own education. I used to like to joke that someday her condition would end up in medical books bearing her name: [Baby Squirrel] Syndrome.

When I got off the phone with the ENT I expected to cry but I didn’t. As I try to remember what my immediate feelings were, my chest fills with weight. I had been trying to prepare myself for this possibility for weeks, months, but I was pissed. We were devastated. I know that to the Deaf community, that can be offensive, but Paul W. Ogden, author of The Silent Garden: Raising Your Deaf Child acknowledges that your child’s deafness is a crisis, at first.

“…a crisis is an occurrence that permanently alters our understanding of reality; frequently it is an event we have not anticipated or prepared for. Something happens that throws everything we know, feel, and understand about our lives and those around us into a new light. I don’t have to tell you that learning of your child’s deafness is this kind of experience… For the child who has been deaf from birth or shortly thereafter, nothing has altered. For you, life has changed permanently… Simply understanding that you are in the process of adjusting to a fundamental change in reality can be helpful.”

The best way I can describe it is, every time we get a new dire diagnosis for Baby Girl, I mourn the loss of the life I had envisioned for her. Starting with the first diagnosis of a cleft lip in utero, I mourned her perfect face, adorable newborn photos, happy smiles, a normal appearance that wouldn’t give kids an added reason to make fun of her. I had to exchange those images I had dreamed of for many painful surgeries, years of speech therapy, dental surgeries, multiple cosmetic surgeries, all in the hope that someday people won’t notice she was born imperfect. I have lost the life I envisioned for her countless times.

“Losses are…occurrences or events that shatter dreams that are core to a person’s existence… The initial diagnosis often marks the point when a cherished and significant deam has been shattered for the parent… The parent oftentimes does not understand that it is a dream that he has lost, and therefore he is frequently confused by the grief process that follows.”

-Kenneth L. Moses, psychologist

We didn’t want to tell anyone that our daughter was Deaf at first; we didn’t want it on social media. We called and told close family members and everyone was sad. Probably a month or more went by before we told ourselves our daughter is Deaf and that’s not going to change, so why hide it?

The whole time in the NICU, what got me through was the thought that someday she could tell me she was OK. I know that her inability to speak won’t keep her from being able to tell me that someday, but the vision was to hear her voice. Now it feels like everything is thrown up in the air. The twins are now a year and a half old and our hearing son is signing but Baby Girl shows very little interest. More recently she enjoys watching people sign the ABC’s, 1-10, and my made up “Good Night”song for her when I tuck her in at night. She likes holding hands and touching faces, but most of the time she won’t look at you when you want her to and will pull her hand away if you try to help her make sign shapes. It breaks my heart when I see other twins babbling back and forth. How much I wish that was A & A; I eagerly await the day they sign back and forth. Thinking about it just makes me more anxious about Squirrel’s lack of interest in communicating.

When we tell people she is Deaf, the usual response is something like, “really? Aww, I’m so sorry!” And we dive into our spiel about how the Deaf community doesn’t consider being Deaf a disability, how we’ve always wanted to learn sign language, how we’re excited to have a bilingual family, yadda yadda yadda. Sometimes I feel that way, but sometimes I hate it. Some people apologize for trying to talk to her verbally, don’t apologize, we still do too. Whenever there is tragedy or sadness people always try to say magical reassuring phrases. Don’t do that. But I’ll get into that in a future post. One that we get often is along the lines of future technologies, “Well in the future I’m sure they’ll have someway to make her hear.” Maybe, but most likely she wouldn’t benefit from it. She was born Deaf, she’s never heard a sound, ever. Her brain is being mapped for visual information. If she heard sound, in say 20 years, her brain wouldn’t know what the hell to do with it. She would need years of therapy to learn how to hear, what sounds mean. I hope that if that technology ever is available that by then she is so well adjusted she wouldn’t need to subject herself to the hassle.

I have so much to say here and nothing. My feelings regarding my daughter’s deafness is fluid and evolving. This part of our story has such a far way to go. Sometimes I truly am optimistic about it. This is the best time ever to be born Deaf; with so much of our communications digitalized already, job are limitless. But I’m still scared about where she will fit in in life. Deaf children are more likely to have other disabilities than the general population; however, the Deaf community has also worked very hard for generations to dispel the notion that Deafness in itself is a disability, and therefore some try to distance themselves from Deaf people with disabilities so as to not be perceived as a disabled person by association.*

♦

When Baby Girl was discharged from the NICU, she was enrolled in many state and federal funded programs due to her prematurity and health issues. Shortly after she was discharged from the PICU, the Early Start Program, in conjunction with the San Andreas Regional Center (SARC), sent interventionist to our home once a week to play with and observe and assess Baby Girl’s development.

The Early Start Program is California’s response to federal legislation ensuring that early intervention services to infants and toddlers with disabilities and their families are provided in a coordinated, family-centered system of services that are available statewide.

Once we learned she was Deaf, SARC transferred her from the county level Early Start program to our local school district with interventionist and teachers for children with hearing loss. An Individual Family Service Plan (IFSP) is created every 6 months to formulate developmental goals for Squirrel based on her own abilities. Now once a week her teacher/interventionist comes to “play” with her and track her development. And every other week her awesome ASL teacher comes and works with all of us. She shared with me that she gets really excited when a new Deaf child enters their program, but has to remind herself the parents might not feel the same way.

Baby Squirrel at 9 Months Old

It’s not all bad. It is fun learning ASL, I just wish it wasn’t because we HAVE to. And it’s helpful having Baby Boy be able to tell us what he wants since his verbal vocabulary is still small. It’s just one more thing on top of the mountain of other things. I am relieved she’ll never have to endure those school bus hearing tests though. From unrelated causes, I have poor hearing and the school bus tests were always humiliating for me when I was the last student let off the bus. There are definitely pros and cons to Squirrel’s deafness.

Pros
- She can sleep through anything
- We don’t have to watch what we say around her – For example…
- We can mute Caillou
- Our protective dogs don’t wake her when people fail to read our “No Solicitors” sign
- She could get a service dog someday!
Cons
- We can’t get her attention if she can’t see us
- We can’t startle her out of a bad behavior by yelling
- You can’t communicate while doing other tasks with your hands
- She won’t be properly embarrassed by our “80s on 8” renditions
- She runs the risk of not overhearing enough dysfunction to be funny

Our house is covered in Sign labels.

Aside from my friend’s stepdad in elementary school, my daughter was the only other Deaf person I had ever met. Watching my friend sign with her family had left an impression on me, and ever since I had always wanted to learn sign language. In college I tried to take American Sign Language but I couldn’t register because I was not a Special Education major.

Over the past year we have tried multiple avenues to learn sign language. We had to first decide whether to learn American Sign Language (ASL) or Signed Exact English (SEE). ASL is a fully formed true language with its own grammar and syntax, where SEE is English with a sign for every word. We ultimately decided that it was most important to give Squirrel a basis in real language and chose to learn ASL. My older sisters and one of my nephews are learning SEE at our local school for the Deaf and Hard of Hearing. My nephew tells me everytime I see him that he hopes Baby Girl learns to sign and her oxygen and feeding tube goes away so she can have a normal life. *tear* He’s 8 and he told me he was so sad when he found out she couldn’t hear. Me too, Buddy.

My husband and I tried online tutors, and watching DVDs, but being in the house with the kids is too much distraction. This spring semester I began taking an ASL course at our community college. Three hours every Monday night. It’s already been so helpful to get out of the house and immerse myself in the class without interruption. My professor is Deaf and speaking is forbidden in class. I was surprised by how much I already know.

I didn’t actually get into the class at first. I was 6th out of 13 on the waitlist, and she only ended up taking the first four. Since it was the first day of class most communication was written on the chalkboard. I got up and wrote asking if I could audit the class, just sit in the back and watch. She signed no, there was no room, nothing she could do. So I put down the chalk and I signed, “My daughter is Deaf.” She told me to sit down and handed me an add code at the end of class! The Deaf culture is collective, they take care of their community and share any information they can to help Deaf people communicate and interact with the hearing world around them. By helping me she’s helping my daughter.

♦

I’m not one to believe in fate or really anything divine, but something along the way happened that I truly am thankful for, and kind of in awe of how perfectly these people came into our life. While I was pregnant our hospital enrolled us in a prenatal group called “Centering.” It was awkward at first but we were all due around the same time so slowly we bonded over common pregnancy symptoms, and the dads bonded over how crazy all the moms were. Just kidding, they bounded over sports and other off topic subjects. There was even another couple having twins.

I was the first one to pop. But exactly a week later, while we were visiting our babies in the NICU, we ran into a couple of familiar faces. The other couple with twins delivered their boys at 32 weeks and they were also in the NICU. We got closer over time, mostly from seeing each other in the NICU all the time, and going through a similarly difficult situation. It was nice to have people we knew there.

After all the Centering group babies were born everyone met back up for a reunion, Baby Boy was home by then. We exchanged information and started meeting once a month for playdates. These families have turned into an extended family to us and our kids: aunties, uncles, best-friends growing up together since before they were born.

The coincidently perfect part is, the mother of the twin boys has many Deaf family members and was raised with ASL as her primary language. You know who you are, and it still makes my eyes misty to remember the first time we brought Baby Squirrel to your house, and as we were leaving you knelt down infront of her car seat and signed to her. I have no idea what you said, nor is that important. But I don’t think you have any idea what that meant to me. Thank you.

♦

This chapter is open ended – this part of our journey is still just beginning. Stay tuned for updates. Including upcoming posts about more things for people to stare at, and getting a genetic diagnosis!!!!!!!

*If you have a child recently diagnosed with hearing loss, I highly recommend reading The Silent Garden: Raising Your Deaf Child, by Paul W. Ogden.

Home, Surgery, PICU & Death: Part 2

January 27, 2016January 27, 20162 Comments

Welcome to Part 2.

When Baby Girl and I got up to the PICU I still didn’t know what was wrong with her or what was really happening. They got her into a room and got her comfortable. She was relatively stable now. I would have no idea that we would spend the next 29 days in that room; in retrospect so many of those days blur together.

She was admitted on Friday, February 13th, 2015. I think I am just now making the “Friday the 13th” connection but I’ve digressed. The first hypothesis was that she probably caught a virus during her surgery or subsequential time in recovery. They ran a battery of blood tests and chest and abdominal x-rays. In the mean time she was given higher oxygen support. They thought she was just really constipated from the surgery and the pain medication. They explained that all the back up was putting pressure on her diaphragm making it difficult for her to breathe. That sounded way to simple but they were the doctors: all-knowing godlike medical geniuses. They gave her laxatives and suppositories and we waited for her to, um, clear out her system.

♦

Baby girl was still tiny at this time. She had to be at least 10 pounds for the cleft lip surgery and she had just passed that requirement. A lot of the supplies in the PICU were too big for her so the nurses often had to call up to the NICU for specific items. The first time her nurse called up I told her to tell them it was for “[Baby Squirrel’s first name], she’s on a first name basis in the NICU. She’s kind of a big deal.” Her nurse didn’t get the joke and gave me a dismissive short laugh, like a, “Yeah, right. They see so many babies up there they are not going to know your daughter by just her first name.” But the nurse name dropped her like I said and it worked. The supplies were brought down right away and our old nurses and coordinators came down to see her. They would continue to come visit us for the duration of our stay.

♦

The doctor working the day she was admitted had the weekend off. I knew she was sick but I don’t think it dawned on me just how sick she was until that doctor returned the next week and told me she had actually pulled up Baby Girl’s chart on her days off to make sure she was still here. She didn’t mean if she had gone home… She honestly wasn’t sure if my daughter would have survived the weekend.

It was finally explained to me that she had been experiencing septic shock when I had brought her in. Septic shock. Our 5 month old, 10.5 pound baby daughter had septic shock. In Baby Girl’s case, the septic shock had trigger Acute Respiratory Distress Syndrome (ARDS).

Septic shock is a serious medical condition that occurs when sepsis, which is a body-wide inflammatory response to infection, leads to dangerously low blood pressure. The primary infection is most commonly by bacteria, but can also be by fungi, viruses, or parasites, and can be located in any part of the body, but most commonly in the lungs, brain, urinary tract, skin, or abdominal organs. It can cause multiple organ dysfunction syndrome (formerly known as multiple organ failure) and death. The mortality rate from septic shock is approximately 25–50%.
–https://en.wikipedia.org/wiki/Septic_shock
[Wiki again, I know, doin’ my bachelor’s degree proud.]

I think you get the point.

However, I still think I was oblivious to the severity of her situation. The intraosseous catheter in her leg was not meant for long term use. They tried again to give her a traditional IV but blew all her available veins and she was becoming dehydrated. They ended up giving her a PICC line, a long term IV more or less, in her left shoulder, and removed the IO from her leg. Like the drill to her leg, it took multiple attempts to place the PICC line. She was getting multiple x-rays a day to view her lungs. Respiratory therapists were working with her around the clock. She couldn’t control her body temperature so a rectal thermometer probe was inserted for constant monitoring. To monitor her urine output they inserted a catheter into her bladder; from our chair/bed we could watch the yellow fluid collect in a vial hung from the side of her crib. She was on such a high flow of oxygen they had to put a strap around her head and under her chin to keep oxygen from escaping out her mouth before she had a chance to inhale it all. But she was awake and responsive most of the time. And that’s kind of how the first week went.

2/15/2015 | Day 3: Strap around her head is to reduce oxygen leakage through her mouth before being inhaled.

2/16/2015 | Day 4: High Flow oxygen is being forced through her nose and coming out her mouth

2/17/2015 | Day 5: Our view of our daughter from the chair/bed

2/18/2015 | Day 6: Her lip 1 week after surgery (wow!)

We fell into a routine. My husband would stay with her at night till 6AM when he would leave for work. During the day I would find someone to watch Baby Boy, we didn’t want to risk exposing him to anything at the PICU, so I could be to the hospital before 9AM rounds and stay with her till 3:30PM. She wasn’t stable enough to be held so I spent my days there reading To Kill A Mockingbird and pumping. My husband would get off work at 4PM and head straight to the hospital to repeat the routine. We didn’t see each other at all during the week. So we started leaving funny notes and drawing for each other. One thing I will pat ourselves on the back for is our ability to keep a sense of humor even in the worst of times. Call it our coping mechanism, it’s the glue that holds us together when everything is falling apart, it works for us.

2/19/2015: I haven’t seen my husband in a week

2/20/2015: I haven’t seen my husband in a week

The scariest day of my life, Friday, February 20th, 2015, started normally, well our new normal anyways. My sister came over in the morning to watch my son and I went to the hospital. Baby Girl hadn’t been improving like they had hoped and expected to see after a week. When she was admitted, even with as sick as she was they guestimated she’d be there 10 days. The talk of pneumonia became more frequent but nothing seemed specifically worse. I had to leave a little early that day to pick up my husband’s mother from the airport. She had come to stay with us to help watch Baby Boy. Right when we got home from the airport my husband called me and sounded worried. He said they were talking about intubating her – placing a flexible plastic tube down her throat and through her windpipe to maintain an open airway. I was shocked that things seemed to have escalated so severely since I had left earlier. My husband agreed to keep me updated and call me later.

I left my office and went into the kitchen to update my sister and mother-in-law about what my husband had said. Before I could finished my husband called again.

“Get here now.”

Without questioning, and with a rapid “I gotta go, oh my god, I have to go right now, [sister] tell [MIL] what to do. Bye” I ran out the door.

I rushed to the hospital. I debated whether if a cop lit me up if I would pull over or let him chase me to the hospital. The whole way there with tears streaming down my face I screamed at the top of my lungs at my daughter. I pleaded with her. I threatened her. I begged her. I begged her not to die. At least not till I could get there. I called to any god that if this was the end at least let her go in my arms.

I ran into the hospital from the parking lot. Today for some reason I had diverted from my usual yoga pants and running shoes and was wearing heeled boots. Once inside I ripped them off and ran through the corridors in my socks. People know to get the hell out of your way when they see someone sprinting through the hospital. The elevator to the third floor felt like it was passive-aggressively taking as long as possible. I pressed the PICU doorbell continuously till someone let me in. I hurried to her room on the back wall. My husband was standing outside with a nurse in a red shirt and I could see my daughter’s bed surrounded by the attending doctor, nurses, respiratory therapists, and x-ray technicians, all wearing full length blue plastic gowns, gloves, masks, and hair covers. The light in her room felt blinding.

I demand from the nurse and my husband, “What’s happening?”

When you think your child’s life is on line and there is nothing you can do about it, you want that question answered before you finish asking it. After a one second pause I ask it again. I was a fraction of a millisecond away from screaming, “What the FUCK is happening?!” in the nurses face when she finally opened her mouth and calmly and quietly started to explain. I can’t remember what she said, only that it pissed me off she was being so calm.

When they finished intubating her and sedating her the doctor sat down with us in our room and explained everything to us. Baby Girl had double pneumonia. She was intubated and put on a ventilator and oscillator. This would allow her to stop working so hard to breathe and open her lungs up. However, and this was the hardest part for me, she had to be medically paralyzed. Movement could cause additional injury to her airways. So there our daughter laid, motionless, eyes ajar, looking like a vegetable…

My husband had called my sister and asked her to come to the hospital. He would later tell me it was because he worried if anything happened to our daughter he wouldn’t be able to handle me on his own.

I didn’t take any photos for many days. I hated looking at her. I wanted to beg them to tape her eyes shut. Instead they put thick lubricating drops in them to keep her eyes moist. If things weren’t already bad enough on their own, it was later discovered that when they intubated her they had pushed Staphylococcus bacteria into her lungs causing a staph infection on top of double pneumonia. Here are some pictures and videos because I don’t have the words.

2/21/2015 | Day 9 – notice the brick of med ports next to her running lines from the tower of medication pumps.

2/24/2015 | Day 12: Intubated and paralyzed

2/24/2015 | Day 12: Paralytic medication is reduced temporarily to see if Baby Girl is able to take breaths on her own.

2/25/2015 | Day 13: Respiratory treatment to hopefully clear mucus and fluid from the lungs – I have zero memory of this.

2/26/2015 | Day 14

2/26/2015 | Day 14: All we could do while she was paralyzed was change her bows

2/26/2015 | Day 14: All we could do while she was paralyzed was change her bows

For the month we were in the PICU my life was completely bipolar. While at the hospital with my daughter during the day, helpless to do anything but watch her motionless body and hope some numbers somewhere start to improve, at night I was at home with my son watching him learn to stand, and jump, and eat solids. I wanted to live in these moments of just the two of us forever. My favorite thing in the entire world was when he would wake up at 4AM and I would bring him into bed with me to nurse and sleep on top of me till morning. Those are the only moments since they were born that I wish I could go back to.

When I got to the hospital each morning I was angry yet numb to the fact of having to be there. I hated that our life was again back-and-forth from this hospital every single day. It was even worse for my husband. He was either busting his ass at work or at the hospital with our daughter. His body hurt from sleeping on the hard sleeper chair that was much to short for his 6’4″ stature. Every night her alarms and monitors would wake him countless times leaving him perpetually exhausted. However, I think the hardest thing for him was not seeing his son and missing his milestones.

3/2/2015: Baby Boy learning (and loving) to jump

3/5/2015: Baby Boy learning to eat

2/17/2015: Baby Boy learning to stand

3/7/2015: Baby Boy ready to socialize

3/7/2015: Baby Boy after too much tequilla

My favorite kind of moments in the whole world

For nearly a week Baby Girl battled double pneumonia and a staph infection. Her doctors were running out of options and were clearly getting worried. We were essentially holding our breath and just waiting and hoping she would turn the corner. Her doctors scheduled a “Family Meeting” for Thursday, February 26th, 2015 to discuss her situation.

The day before the meeting an amazing thing happened, apparently. She was still intubated and on the ventilator and oscillator but her stats started to improve. And they continued to improve. She had rounded the corner. I was finally feeling assured that my daughter would not die.

I remember standing at the foot of her crib talking to her and playing with her feet when a woman sobbing and screaming entered the PICU and made her way, practically carried by her partner, to the room next to ours. The doors to each patient room are glass but typically a curtain is half pulled for privacy, and unspoken etiquette is you don’t more than glance into another patient’s room. There was a lot of activity, a lot of coming and going from the nurses to the room next to ours. Two chairs were put outside our rooms so the woman could collapse into one of them rather than on the floor. She just kept screaming “No! No!” over and over. Our nurse came and closed our sliding door but it only slightly muffled her cries. Her sobs turned to retches and she threw up on the floor.

Something clearly awful has happened or was happening in the room next to ours. I didn’t see a doctor again for hours. I was able to establish that after the child was brought to the PICU he was quickly rushed into surgery. I was so acutely aware that I was on cloud 9 at the prospect of my child finally improving, while this other mother was in the pits of a hellish nightmare. Selfishly I was so relieved that Baby Girl was seemingly over the worst of it by this time because I think that mother’s cries would have been the final straw on the proverbial camel’s back that was my mental sanity.

The next day was our Family Meeting with Baby Girl’s team. We were led to a small conference room outside of the PICU. The head doctor began the meeting by expressing that he had expected this meeting to have a much different tone before her recent improvement. He had scheduled the meeting originally to discuss preparing ourselves for the end. For the possibility of her not improving after they exhausted their options. Instead we spent the time making a plan for her recovery.

Over the next couple days, while still intubated, they allowed Baby Squirrel to wake up a bit. She would take breaths on her own, establishing that she would be prepared for extubation. It was the most amazing thing to see her look around with her big blue eyes, the eyes I feared for so many days that I would never see again. Her eyes represent so much to me. They were tiny and black, alien-ish, when she was born. They made her look so sick, I hated them. But the more she grew the bigger they grew. And her eyelashes! Her eyes are lined with the most amazing long, perfectly curled lashes. Her eyes became the first thing people notice about her, the only pleasant feature of her face for so long. While still in the NICU, I would stare into her eyes trying to force my will and any energy I could possess of the universe into her to heal her. So when she was able to blink and look at me, and look into my eyes again, my heart erupted with joy.

2/28/2015 | Day 16: Baby Girl is able to wake up and look around, while hoping a nurse wouldn’t notice and sedate her again

When the decision was made that she did not need to be paralyzed anymore I shared this:

2/28/2015 | Day 16: Best day!!!

“This might look scary but to me it’s AMAZING! 3 days ago we weren’t sure if she would survive. Her doctors were clearly worried and running out of options. I thought I would never see my daughter’s big bright eyes again. Thankfully [Baby Squirrel] rounded the corner just in time and is improving everyday. Today they reduced her sedatives enough to allow her to wake up and play for 30 minutes before the nurse caught us and sedated her again. In the last 2 weeks our little fighter has battled septic shock, pneumonia, a viral infections, staph infection, and ARDS. She reminds me everyday that my faith in her is not misplaced. She is my hero.”

At the time I was not as open about my daughter as I clearly am now. I didn’t share much to anything about her on social media. I was and still am extremely hyper-aware of how uncomfortable and scared she makes people around her. I knew this photo would be hard for people to see, and harder to understand that it was actually an amazing moment for our family.

The next day the breathing tube came out and she was placed back on a high-flow cannula. She was still on a lot of opiate painkillers and kept sedated to help her continue to heal. But she wasn’t paralyzed!!!

3/1/2015 | Day 17: Extubated

As we continued to receive more good news each day, we would watch distraught family members visit the child in the room next door. We tried to give them their privacy and not make eye contact when we would pass them in the corridor; however, we would also try to catch a quick glimpse of the child as we passed. When I finally caught a glance his head was completely wrapped in white bandages.

On March 2nd, 2015, after 18 days I was finally able to hold my daughter again. I pulled a chair next to her crib and held her while we slept. She still had her PICC line and med ports which had to be carefully balance around me but she was in my arms. While we sat together I heard alarms and monitors going off in the boys room. Nurses speed walking to and fro. Quick frantic communications. A crash cart was called. The mother was sobbing unconsolably in the hallway, helpless. With pangs of guilt I hugged my daughter tighter.

3/2/2014 | Day 18 – First time holding her since she was admitted

3/2/2015 | Day 18: Lots of opiates in this little girl

And then the kid was gone. I didn’t see them take him away. All evidence of what had happened in that corner room was gone. I could feel the closeness of the morgue 3 floors below. My heart ached for the family knowing the motionless shell of their child was down there. I was overwhelmed by the complete and udder unfairness that children can die. Being a mother exacerbated that feeling. So fucking unfair. In the times since then that Baby Girl has been to the PICU we always hold our breath and pray she’s not put in that corner room. Any room but that room. As if the polarities of our adjacent situations weren’t more apparent, on March 3rd, 2015, the twins turned 6 months old and Baby Squirrel smiled for the first time.

3/3/2015 | Day 19: Baby Squirrel starts smiling for the first time! (mostly at her cute male nurse.)

Baby Boy

Baby Girl continued to improve and was started on methadone to help wean her off the opiate painkillers she had been on for so long. It felt like they were pricking her heel to check her blood-gas every hour, maybe they were. Watching a child withdrawal is so sad. She was sweaty and restless and you could tell by her movement that she was itchy. They gave her Benadryl and other non-opiate sedatives to keep her comfortable. In the meantime we thought we would take advantage of her being sedated and have the audiologist come to her bedside to redo her hearing exam. During her cleft lip surgery, they had also placed tubes in both her ears. The thought being that sometimes children with cleft palates have fluid build-up in their ears making it sound like they are hearing underwater. The tubes would help elevate that impairment.

The audiologist came and performed her test but her results were inconclusive, again. She thought it was most likely due to interference from all the equipment in Baby Girl’s room – it wasn’t the ideal location for an accurate hearing test. She said she didn’t think the results were accurate because Baby Girl had turned and looked at her when she opened her door and entered her room, which had been outside of her line of sight. Our guess was maybe she was deaf in one ear but that she definitely had some hearing because everyone saw how positively she responded when we would turn on her music or she heard her daddy’s voice. Plans were made to do another sedated hearing test once she was discharged and finally determine the condition of her hearing.

3/6/2015 |Day 22: first semi-real bath in over 3 weeks

3/9/2015 | Day 25: Baby Girl’s got the nods as her sedatives kick in

When we got to the point that Baby Girl was no longer there because she was dangerously ill but rather because she was being weaned off all her medications, we started putting pressure on the doctors to let us take her home. Of course they were extremely reluctant. Not only did they not want to discharge her till she had been weaned off all her medication, but they also wanted to keep her for observations after that. One thing I learned quickly after first meeting my husband is that he is extremely persistent. He went back and forth with the doctors for days basically negotiating her release. The doctor’s final condition was that we get a pulse oximeter before he would discharge her. If you remember, she had been sent home from the NICU with an apnea monitor. A pulse oximeter would show us her heart rate and oxygenation level. Unfortunately, even though we had the Cadillac of medical plans and Baby Girl had Medi-Cal due to her various conditions and time spent in the NICU and PICU, a pulse oximeter would not be covered. Thankfully from our time there we had gotten to personally know some kick ass social workers and they helped us get CCS supplemental insurance and the pulse oximeter was delivered – ours to keep.

3/10/2015 | Day 26

We stayed another week until her medication doses were at a manageable level and on Friday, March 13th, 2015 (another Friday the 13th…) Baby Girl was finally discharged.

3/13/2015 | Day 29: Going home!

3/13/2015 | Day 29: Home at last!

3/13/2015: back in her bed where she belongs

We would have to continue her methadone wean at home since we had convinced the doctors to discharger her earlier than they wanted. When we brought her home she had 16 daily doses of various medications. We were also sent home with a nebulizer and a strict antiasthmatic regimen multiple times a day. We figured it would be easier for us to have her finish her withdrawals and wean at home rather than spend another single night in the hospital. Holy shit were we wrong.

It was such a relief to have her home, to have my husband home. But allow me to say opiate withdrawals are a bitch! The 7PM witching hour returned right on schedule and lasted through the night. If there is one joy any parent of multiples knows too well, is the sick cycle of one waking up and in turn waking the other. Baby Girl was simply miserable. Diarrhea, sweats – nothing we could do to console her. We finally decided to move our son out of our room and into his crib in the nursery for the first time. It made me sad moving him away. For the weeks to come I would try everything at night to help alleviate our daughter’s suffering (and our’s!) But more than once it only resulted in me screaming into a pillow and beating my fists against the bed.

Time passed, she healed, and although she would develop pneumonia about once a month through spring and summer, she spent the next 8 months straight at home, in her own bed every night, where she belongs.

♦

Thinking back we never wanted people to know that there were things wrong with our daughter and didn’t share many photos either. We didn’t want much about her posted on Facebook unless it was something extremely exciting and positive; however, sometimes I would sneak something up on Instagram to share with my close friends. February 28th 2015 was World Rare Disease Day. A couple days before, with nothing else to do while our daughter was paralyzed, I made the collage below but never shared it. It is funny to me now because Dandy-Walker has proven to be the least of her concerns. I will share extensively on this topic of syndromes and genetics in a post to come.

Home, Surgery, PICU & Death: Part 1

January 15, 2016January 15, 20162 Comments

This post may not be for the squeamish or hypersensitive. I have included unpleasant photographs and videos showing post-surgical incisions and extreme medical treatments. This post also includes an outsider’s account of the death of a child. That being said, the story I am going to share was profoundly traumatic for our family, leaving invisible scars that may never heal.

The day Baby Girl came home, January 14th, 2015, was wonderful and terrifying. For 4 1/2 months we had relied on her monitors to tell us exactly what was going on with her, and if something happened the nurses and doctors were right there to intervene. The nurses had told us from day one not to rely on the monitors but to watch her coloring. We quickly learned “dusty” = bad. Nothing is more nerve racking than the moment when those monitors go off and her life, that you have seen first-hand be extremely fragile, is thrust into your hands.

1/14/2015: First night with both babies home

Please notice the copper rod with colorful rubber bands near her head. What you can’t see is her feeding tube hanging from it. We would jury-rig many ways to feed her over the months to come, thankfully they became more sophisticated than this. Probably the hardest thing that we had not been prepared for was the witching hour. Or what you would all call 7:00PM. Every single night at this time Baby Squirrel would start crying and sweating uncontrollably for a solid hour. One of us would have to sit with her and hold and lower her feeding tube as needed. We tried everything to comfort her but eventually, for our own sanity, settled on wearing headphones till the episode passed.

They had sent us home with an apnea monitor, not a pulse oximeter monitor, meaning we couldn’t see exactly what her oxygenation level was or exactly what her heart rate was. Instead it would just beep at us incessantly if her heart rate got too high or too low or she held her breath for more than 15-20 seconds. I don’t think we ever took her monitor off her that first week. Two days after she came home she had doctor appointments, and I remember unloading all her equipment from the car into her stroller and thinking, no baby should require all these cords, people are probably staring. That day we met with her plastic surgeon (yes, my daughter has had a plastic surgeon since before she was born, NBD) and he cleared her for the surgery we had been waiting for for nearly 8 months, since I was 4 months pregnant, the surgery to repair her cleft lip and nose. (Insert Clueless quote here.) She had been the first baby in her NICU to have a special tape placed across her cleft. (The name of the tape is alluding me now as I celebratorily spiked it into the trashcan when she no longer needed it.) Starting shortly after she was born the special tape was placed on one cheek and stretched across and adhered to her other cheek. The purpose of this tape was to pull her gums together, closing the large opening in her gums due to her cleft palate, and to stretch the lip skin so there would not be excess tension on the incision once her cleft lip was repaired.

Five days later we were back to meet with her anesthesiologist for the surgery and an Ears, Nose, and Throat specialist to discuss placing tubes in her ears during the same surgery. I will explain later the reason for the tubes. While we were in the waiting room waiting for this appointment, Baby Squirrel had a giant blow out! (That’s a poop explosion for any non-parents.) She hated being dirty so she was losing her mind. Her monitor starts shrieking out in the quiet waiting room because her heart rate was over 220! Thats really high, especially for something like a dirty diaper. For the next few weeks, and year really, we would spend an average of 3 whole days a week at the hospital seeing her various specialists (pulmonologist, gastrointestinologist, physical therapist, occupational therapist, ENT, neurology, though ironically rarely her pediatrician because her care was so complex.)

When we were home we tried to make up for missed time. There was already a significant developmental gap between the twins but we tried to put them together as much as possible. From spending more than 4 months on her back in a bed her head had become asymmetrically flattened on one side, but most discouraging was she hated to be held. She would throw such a fit she would have respiratory distress if you tried to hold or cuddle with her. I worried perhaps she was autistic but through speaking with other long term NICU parents, I established it’s fairly common among infants that begin their lives not healthy enough to be held. Even at home, her dislike for being held, plus her great need for growth and therefore strict feeding schedule, had her propped up in her crib for many hours of the day yet again.

As you can probably imagine, it was nearly impossible to bond with her under these circumstances. Since they were born we dreamed of bringing them both home and bonding as a family. However, when Baby Girl came home she became more of my patient than my daughter. Not only did she not like to be held, but due to her cleft lip she was never able to breastfeed. So my daughter and I never got to have that magical skin-to-skin breastfeeding induced oxytocin love fest. At nearly 5 months she still didn’t smile so there was no positive feedback. I loved her in the sense that she was my daughter and my flesh and blood, and when bad things happened to her my heart would physically ache, but it came no where close to the love I felt in my bones for her brother. Judge if you must, I don’t like to admit that. It left me feeling extremely guilty and unfair.

1/18/2015 – Stuffed babies love at first sight

1/17/2015 – Sharing the Pack-n-Play

1/18/2015: Both my babies at once, this happens much, much less than you may think

1/24/2015: Watching cartoons together

1/15/2015 – Both babies in their joint bassinet where they belong, her overnight continuous feeding line can be seen

1/25/2015

2/3/2015 – The twins are 5 months!

The reality of twins…

Before either of my children were discharged from the NICU hearing and vision tests were performed as prematurity can greatly effect both areas. Both of their visions were fine, however Baby Girl’s hearing test continually came back inconclusive, “Refer” to be specific. We weren’t too concerned because we knew she loved her music and always responded to her daddy’s voice. Upon her discharge from the NICU she was referred to an audiologist to have her hearing rechecked. This appointment did not go well as it required me to hold her, and hold her still – it wasn’t happening. The audiologists did not believe the results were accurate so we rescheduled our appointment to repeat the test and if it still was inconclusive a sedated test was an option.

A week later was Baby Girl’s cleft lip repair surgery.

♦

Before I start writing any of my blog posts I do research. I go through all the photos and videos on my phone from the target time and read through anything I may have written in my calendar or elsewhere. As I mentioned in the beginning, this time period was particularly traumatic, and this is apparent to me because a lot of the photos and videos I have little to no memory of. In addition, many days I have no documentation to refresh my memory at all during this time because there were days I could barely bring myself to look at my daughter.

♦

Tuesday, February 10th, 2015, at 6:30am we arrived at the hospital and Baby Girl was admitted for surgery. We were able to go back with her to get her changed into a gown and wait for the surgeon to come speak with us. We laid the twins together and they fell asleep. Still to this day she is calmed by his presence.

2/10/2015 – Surgery day, he keeps her calm

2/10/2015 – Surgery Day

When the time came I took one last photo of her being wheeled to surgery because there was a little voice in the back of my head wondering if this would be the last time I’d see her alive. All surgeries come with the possibility of complications, no matter how routine, plus I am a mother, the mortality of my children is never far from my mind.

2/10/2015 – Baby Girl being wheeled away for surgery

I can’t recall exactly how long her surgery took but it was quite a few hours. Eventually the plastic surgeon came out and reassured us that everything had gone smoothly and he was really happy with the outcome. We were then directed to Recovery where we would be reunited with our daughter.

2/10/2015 – immediately following surgery, in recovery

Saddest lil’ face you’d ever saw, right?!
But it was also the most amazing! The surgery had completely reshaped her face.

2/10/2015: Her amazing Before and After

Once she was cleared from Recovery we were transferred to the PICU. This was our first time stepping through the big mysterious metal doors. We arrived with our daughter the first time but anytime we had to reenter we had to ring a door bell and announce to the nurse behind the camera who we were and who we were visiting. I was first struck by how much smaller it was than the NICU. There was a centralized nurses/Doctor station on the right surrounded by 7 private rooms with sliding glass doors on the left and back.

She was in a lot of pain but plastics came to check on her and reassured us again that the surgery went perfectly and she was given Hydrocodone/Hycet for pain. As our luck would have it the local hockey team the San Jose Sharks were visiting all the children in the pediatric wing that day, something they do often.

2/10/2015: The San Jose Sharks visit all the children in the Pediatric wing

2/10/2015

2/10/2015: SJ Sharks swag

By that night the doctors felt she was recovering well and transferred her out of the PICU and out to the Pediatric floor. In the PICU the nurses have 1-2 patients. In general Pediatrics the nurses have…I have no idea because we rarely saw a nurse after her move. So of course that’s when the fun started. Baby Girl started screaming and crying and didn’t stop. Her ear-splitting monitors wouldn’t stop going off as her heart rate remained over 220. When the nurse would come to check on her there was nothing they could do for her unless it was time for more pain medication. We resolved to taking turns pacing the halls as a mental health break. Eventually I took Baby Boy home for the night and my husband stayed with her. I would return in the morning to bring her home.

When I arrived in the morning Baby Girl looked like hell and her coloring didn’t look right.

2/11/2015 – waiting for discharge papers, she didn’t look right to me

My husband had left for work by the time I got there but mentioned the crying had lasted all night. As her discharge paperwork was being compiled, her nurse and I simultaneously noticed her MIC-KEY button had come out! The balloon filled with water that holds it in place had ruptured. The feeding tube was still pretty new to me, I had never had to change one on my own. Down the line I would become a super badass g-tube changing pro, but till then I panicked. I knew this commonly happens but I also knew that if the stoma (the hole in the skin through which the MIC-KEY button enters the stomach) were to close she would require another surgery to replace it. We were able to put it back through the stoma and tape it in place until I could get my brother-in-law to go by my house and bring us a replacement button. Hours later I finally had my crying miserable baby home.

For the rest of the day she cried and cried and cried. Then magically the next day she seemed OK. She stopped crying and showed interest in her toys and playing. It was a good day. We still had to keep the arm restraints on her so she wouldn’t touch her lip or nose. Unfortunately, this was just the calm before the storm.

2/12/2015 – Arm restraints so she wouldn’t touch her lip and nose. This was actually a good day, she had energy to play and seemed to be feeling better

That night the witching hour struck and struck hard. Except it wasn’t just an hour, it lasted all night. We kept calling the surgical department and advice nurses and they kept telling us what she was experiencing was normal after a surgery like hers and to continue with the pain medication. She had only been home for 3 weeks before her surgery so we were still learning her but I had a strong feeling something really wasn’t OK. We didn’t have a pulse oximeter and strangely enough they hadn’t taught us how to listen to her lungs. That’s right, our child had chronic lung disease and pulmonary hypertension and we had not been taught how to listen to her lungs, we didn’t even have a stethoscope at the time. At that time we were completely unprepared for recognizing respiratory distress. Paired with the advice nurses telling us that this was normal.

By 3:00AM my husband and I were at our wits end. Baby Girl was clammy, had a mild fever of 101, eyes rolling around in her head – not a pretty sight. At the time her oxygen prescription was 1/8 of a liter of 100% oxygen. That’s barely anything. But with our inexperience, and lack of a proper monitor, we didn’t know if she needed more. We called the advise nurse again and said straight up, “something isn’t right, this isn’t just pain.” We were given an appointment with her pediatrician first thing that morning.

For the ride there I turned her oxygen up to 1/4 liter, still not much but double her usual requirements. She actually appeared more peaceful on the ride but was still lethargic and clammy. While the nurse was taking her vitals like temperature and oxygenation level, under the florescent light of the pediatric clinic she looked extremely pale. Her oxygenation level was 75%…because she has pulmonary hypertension her oxygenation level really shouldn’t be below 95% for any extended period of time.

Once the nurse put us in our room I honestly think she went and grabbed the pediatrician away from another patient because she came in only a moment later. She took one look at her and in her best calm doctor voice, the one they use when you know they are actually really concerned, she asked, “how high does the oxygen flow go on her tank?” “Four,” I replied. “Go ahead and turn her up to four.” She asked me more questions and before I knew it she was asking a nurse to bring in a wheelchair STAT. (“STAT” is never good. “STAT” was used when the ultrasound found Baby Girl’s heart rate was under 80 leading to their emergent birth. I don’t like “STAT”.) It literally happened so fast. A wheelchair was brought in, they threw me in the wheelchair, Baby Squirrel in my arms, and that nurse RAN me across the campus to the Emergency Department where they had a room waiting in the super emergency section. The rooms they leave empty unless their use is truly warranted. (The toothless nipple-popping presumed crack whore complaining about all-encompassing pain while continually asking for more food, whom which we would see on a future ER visit would not get one of these rooms.) A flood of nurses, doctors, and specialists followed.

While they began looking her over and trying to find veins to start an IV, I tried to reach my husband and tell him to get there. He was over the hill golfing (please don’t judge the guy, he thought, like the advice nurses, that she was just in pain from surgery and it would subside over time.) I can’t remember if I reached him right away or if we played phone tag, my adrenaline was seriously pumping at this time. Thanks to good ol’ Zoloft I had my head together though. I wasn’t crying and I was able to converse with the doctors and answer their questions, all using that calm facade voice. Baby Girl had tiny veins and had always been a hard stick. I hated to see them pin her down while they fished for veins but it wasn’t the first time.

A coordinator called me out into the hallway to sign standard forms while they continued trying to get an IV started. While trying to call my husband again I saw a nurse with what looked like a power drill and thought in the back of my mind that that was odd but nothing more. As I was putting my phone back in my back pocket a nurse came up behind me and grabbed my shoulders softly and told me that they were going to drill into my daughters leg bones to try to start an IV that way. What the serious fuck?! At that instant I saw through the open glass sliding door the drill touch down on her right leg. I turned away and collapsed to the floor. I exploded into wails with my head on my knees and my fingers clasped behind my head. The nurses scooped me up and sat me in a chair. I would later find out the IO wasn’t successful the first time and they had to try again on her other leg.

I don’t remember much after that.
Baby Girl and I were moved back up to the PICU.
My husband arrived 20 minutes later from 30 minutes away.

To be continued…

I Got The PTPPNICUDSD Blues!

December 31, 20154 Comments

Post Traumatic Postpartum Neonatal Intensive Care Unit Depression Stress Disorder

OK, maybe I made that up. But I wasn’t just effected by the twins emergency 9 week early arrival, or their 4.5 months in the NICU, or the wild hormonal changes swirling through my brain and body after pregnancy; they all played a nasty game together.

Few people know many details about our 133 day stay in the NICU because it got to a point where it was too painful to continually tell people our daughter wasn’t any better, or she was continually getting worse, or she had received another dire diagnosis. We appreciated everyone caring enough to ask but they most likely received a lie in response. “She’s doing alright,” “she’s still technically premature so she still has a long way to go,” “her lungs just need to get stronger and she’ll be home,” “eh, she’s getting there.” I rarely to never shared photos of our daughter during this time because, quite frankly, she looked like shit. I’ll do my best to not make this post horribly depressing but the truth is I am still profoundly effected by our experiences over the last year and a half. And I still struggle with depression every single day.

When the twins were born on September 3rd, 2014, 9 weeks early by emergency C-section, I didn’t get to see them for the first time till the next day. They were still an abstract idea to me; you know you’re pregnant but you’ve never seen them outside your body before so you don’t really know who you are missing. I even still felt their fantom kicks. I was in so much pain I was switched to Percocet and kept in a sleepy haze. Most mothers will probably disagree but I loved having a catheter in because it meant I didn’t have to get out of bed. (I had to pee and then I didn’t anymore. It was fantastic.) My husband had seen our children when he escorted them to the NICU where he fought with the nurses and doctors to get them placed next to each other rather than in two completely separate areas.

While I was in recovery he spent time with the twins and took pictures but he refused to show me until I was able to see them in person. All I knew for almost 24 hours was that my son had dark hair like his daddy and my daughter had strawberry blonde hair like me. And that her face was completely open on her right side due to her cleft lip and palate. We knew she would have the clefts before she was born but we were never able to see if her lip was open all the way up through her nose or not. Every 2-4 weeks I was given a 3D ultrasound to try to see her face (moms of typical children are probably envious of that), but she always either had her face up against the membrane that separated her from her brother, which made the image look like she had a veil over her face, or her brother’s butt was in the way.

The day after their birth it was my mission to get out of bed and into the wheelchair so I could go see my babies. Holy fuck! You really don’t realize how every move you make uses your core until your core has been sliced open and stapled back together. It took two people and a lot of crying but I made it into the wheelchair and over to the NICU. We had always known that with twins it was almost a guarantee that one or both would spend at least some time in the NICU; however, I was extremely naive of how that would actually effect us.

Their first 4 days in the NICU are kind of a blur for me. I was on heavy painkillers and spent my time there fighting the nods while peering through the little door/windows in the side of their isolettes, cupping Baby Girl’s head in my hands, or sitting next to Baby Boy’s isolette holding his tiny fingers sobbing because every breath he took looked like his ribs collapsed to his spine. It would be 5 days before I was able to hold my son for the first time, and 10 days before I could hold my daughter. You may notice I talk about my son much less than I do my daughter. Once my son’s lungs opened up he was able to breathe on his own. For the rest of his time in the NICU as long as we let him sleep on his tummy he was happy.

Because they were 9 weeks premature the doctors expected them to remain in the NICU for 4-6 weeks. Because we knew we were in for the long haul we showered the NICU nurses with Starbucks coffee and giant gourmet cake pops made by a close friend who was a pastry chef. My charming husband made sure all the nurses and doctors knew us all by name so they would consciously, or at least subconsciously, take the best care of our babies when we couldn’t be there.

The massive sunflowers hide that these cake pops were huge!

I remained in the hospital for 5 days, before being discharged. I got my wheelchair ride out but my arms were empty. I sobbed all the way home leaving our babies behind. I don’t think that crying ever really stopped after that. I woke up crying, I pumped crying, I fell asleep crying. I relied on my husband for everything. Physical support, emotional support, and he carried it all like the Titan Atlas.

Pumping, pumping, pumping, pumping, pumping, pumping, pumping, pumping. Fuuucckkkk pumping. Pumping 8-12 times a day, every 2 hours, roughly a 40 minute routine. Do the math with me here, that’s nearly a minimum of 6 hours a day. But not just during the day – around the clock. And the 2 hours starts when you start pumping, so really you only have an hour and change between pumps. I killed myself for that milk and it always made me feel like a complete failure. I could never produce enough for both. When I would take that sweet liquid gold into the NICU the nurse taking it would always say, “thats all? Are you pumping at least 8 times a day?” I wanted to be a breastfeeding mother, my goal was at least a year. I knew it would be hard but it’s fucking hard! I tried everything. Supplements, massage, “Power Pumping”, I was spending that 6+ hours a day online researching how to up my supply. My daughter would never be able to breastfeed due to her cleft lip & palate, and my son would end up taking 8 months to figure out milk came out of those things! 8 months! ANYONE that says “don’t cry over spilled milk” has never been a lactating mother!

For the first week home, we would get up and go to the NICU, spend all day there and then come home and do it all over again the next day. The NICU at our hospital was a level III NICU but the babies did not have private rooms. There were 4 main rooms called Pods: Pod A, B, C, and D, and each pod had 6 isolettes/cribs. You could pull a curtain for “privacy.” The nurses had shift change every day at 7am, 11am, 3pm, 7pm, and 11pm. At those times all parents had to leave the NICU for 30 minutes before they could come back in; you couldn’t stay with your child around the clock.

After a week I was healed well enough to care for myself and get around on my own. My husband returned to work so he could save his paternity leave for when the twins came home. I was so scared to be alone. I had become completely dependent on him. I was constantly crying and sad and he was constantly reassuring me and trying to ease my fears. All the stress surrounding babies that could have torn us apart had brought us exponentially closer.

I delved into a routine in an attempt to keep my sanity. Every morning when my husband left for work I would get up, pump, then head to the hospital to deliver milk. I would stay for 9am rounds where the doctors and staff would come around and talk about all the scary stuff wrong with our children, particularly our daughter. Blood clots in the brain, hydrocephalus, inability to feed, failure to thrive, heart murmurs. I would stay till about 11:30am then head home. I would drive back to the hospital again at 4:30pm to meet my husband and we would stay till shift change at 7pm then head home and start dinner.

During the 2nd week our daughter stabilized enough to be held. I was terrified. She had so many tubes and wires and cords attached to her and she was just so tiny. Looking back at photos I can now see how mottled her skin was and why the doctors were so concerned about her coloring. Shortly after she was put in my arms she refluxed and threw up all over me. The bile itself I didn’t mind. It was the vision of it coming out of her mouth and nose because of her clefts. It gushed out of her entire face and then she would choke and turn blue and the monitors would start screaming. Those goddamn monitors. Constantly going off. Today I can read those monitors upside down and backwards, but then I didn’t know what they meant and the sound always scared the hell out of me. Every time one would go off I would jump. And because the pod was open I could hear all the other babies monitors, and sometimes I couldn’t discern immediately if something was wrong with my babies or someone else’s. Most premature babies have a feeding tube in their nose down to their stomaches. When my daughter’s reflux could not be managed and continued to be threatening her doctors opted to move her feeding tube past her stomach and into her intestine with an x-ray guided weighted tube with the goal of reducing the amount of content in her stomach. Like most things with our daughter we would learn, it only helped a little. I just kept telling myself that someday I’ll get to hear her little voice tell me she’s OK. I’ll explain in a later post why that will never happen.

One doctor noticed that I would always cry when we spoke after rounds, or any time for that matter. She always asked if I was OK and offered to have a social worker come talk with me. I always said I was fine, I was just scared, and I didn’t want to talk. After a male doctor (let’s call him Dr. K) bluntly told us our daughter had a hole in her heart and would probably require open heart surgery, my husband had privately requested that the doctors speak with more tact around me. However, one day we were told Baby Girl had fluid pooling around her brain causing added pressure. I remember our primary nurse hugging me for the first time and that I felt things must be much worse than they are letting on in front of me. I asked to speak to the doctor that always checked on me and told her I was ready to talk to someone. I was set up with appointments to speak with a therapist and a psychiatrist. I didn’t want medication but I was instructed to keep the appointment anyhow. I don’t even like taking Motrin for headaches till I’ve at least tried to drink it away with water.

Three weeks doesn’t sound like a long time now but by their third week I was losing it. I wasn’t sure if my daughter was going to ever leave the hospital alive, I was only sleeping and hour or 2 tops at a time, I felt nauseous all the time, postpartum morning sickness as I began to call it, and mentally I was a complete wreck. Imagine every negative emotion coursing through you all at the same time constantly for over 20 days straight. Sadness, fear, anxiety, worry, exhaustion, disappointment, regret, loss, inadequacy. And I don’t mean like I was bummed out or feeling blue. My chest ached with deep terrifying sadness and fear. I felt completely useless to my children. I regretted having them at all. I showed up to the NICU multiple times a day but I didn’t want to be there. I pumped nonstop for them but I fucking hated myself when 30 minutes later I only had an ounce or two to take to them. When doctors would talk to me I could only nod and fight back the tears, I couldn’t contribute to the conversation or to the care of my children. Every time those motherfucking monitors would go off my heart would race and I would go into fight or flight mode. And one day I snapped. Both of my children’s monitors kept going off, back and forth, loud piercing beeps in the mandated quiet of the NICU. I wanted to get up and run out of there but instead I grabbed my phone and penned a desperate email to my OB.

My desperate plea to my OB

My OB headed a special prenatal group we attended and we got to know each other very well, much more so than just occasional check ups. So she wasn’t just passing out pills just because I asked. She prescribed me Zoloft and I picked it up that night. Zoloft is in no way a quick fix. In fact it makes things worse before they ever get better.

I had agreed with my therapist that I would attend a Postpartum Depression support group. I didn’t think it was the right fit for me but I agreed to check it out. **In advance, mothers, please forgive me for my thoughts I am about to share from this time. I know any mother can experience PPD, no extraneous circumstances necessary.** The group consisted of about 10 women, all but myself and one other mother had their babies there with them, all singletons under 6 months. We moved clockwise around the group introducing ourselves and sharing what we were struggling with. The first mom was beautiful and put together, hair done, light makeup, well dressed. She talked about how she had got to go out with her girlfriends over the weekend and how nice it was but how the baby woke up at 2am that night wanting to be feed and that was stressful for her. The next mom shared that she couldn’t get any friends or family to come over and help give her a break from her baby, her son nursed while she spoke. Another shared that her son was born 11 days early but did not have to spend any time in the NICU and she was sad all the time, and that her husband had earlier that day watched their son so she could get out and get a pedicure. I wanted to scream at these pathetic women, “You have your healthy child attached to your tit right now, what the fuck are you crying about?! I would give ANYTHING to be in your shoes. My children are fighting a possibly losing battle for their lives right now!” I didn’t of course. Instead when it was my turn I started hyperventilating/ugly-crying halfway through my name. I bawled out my situation and vowed to myself I wasn’t coming back. The poor girl after me said she had the “postpartum blues.”

The first 10-14 days on Zoloft were the worst. I didn’t think it was possible but everything negative intensified, even the nausea. After about two weeks everything finally began to improve. I met with my psychiatrist and we increased my dose over time to an effective level. I am not ashamed to admit that I am medicated. It is the best thing I have ever done for my kids and marriage. Once the medication took effect I could control my emotions. I could hold a productive conversation with the doctors and discuss my children’s care without crying. I could think reasonably and logically. And best of all I began to see the positive sides of everything; I saw everything as blessings in disguise. Every time my husband and I had received bad news, we made “positive positive positive” our mantra, and now I could really live it. I wasn’t manic by any means, I still felt sadness and anxiety but at a manageable level. My husband recently told me in the past he thought people that needed antidepressants were weak but after our experience he saw that some people really do need them and they can help immensely.

During those long two weeks, after 31 days in the NICU, our son came home. He was technically still only 35 weeks and tiny, just over 6 pounds. Leaving the hospital with our son was even harder than the day I was discharged after their birth. I felt like we were abandoning Baby Squirrel. She was still so little and sick and we were going home and being happy with our healthy baby boy. Every joy felt like a betrayal to her. It was like living in two different worlds. In the NICU everything was solemn, but at home we were making memories and becoming a family. Our son was growing and developing and thriving and the gap between him and his sister was growing larger.

Baby Boy’s Homecoming

When Baby Girl was nearly 40 weeks old they moved her out of the typical isolette and into a crib. We brought every stimulus we had. A mobile with colorful birds for her to look at and reach for, pictures of us and high contrast images to tape to the sides, a vibrating chair, and an iPod and speaker full of calm upbeat and relaxing music. She loved her music. Her nurses kept it on for her quietly 24/7. Every day the nurses would tell us how much they loved all the Beyonce, I accidentally put 3 copies of “Halo” in her mix. And they always commented on how much Baby Girl loved her music, how she perked up when it came on. Six months later on my 30th birthday we would learn how ironic their comments were.

All progress with Baby Girl was painstakingly slow. Even with the feeding tube down in her intestine she was still refluxing and aspirating. She was always going up and down on oxygen support. Due to her prematurity she has chronic lung disease, her lungs are riddled with scar tissue and continually fill with fluid, requiring more and more diuretics to dry them out. She had regular echocardiograms to watch how her heart and lungs played together. (My heart is currently pounding in my chest as I try to formulate this next sentence…) At two months old she was diagnosed with Congestive Heart Failure. Without knowing what that meant, it sounded like a death sentence, right?! “Heart Failure.” That super vital organ that keeps you alive, hers was failing.

I think I shut down. I don’t remember much after hearing that. I can’t remember if I was just numb from the daily stream of bad news or if I was protecting myself for her possible demise. I think that was the universal tipping point; the universe decided we’d earned a miracle. During a follow up echo a couple days later the cardiologist found her VSD, the large hole in her heart that Dr. K said would require open heart surgery, and that the cardiologist later refuted but said would take years to close, had closed seemingly over night. Before telling us the cardiologist had other cardiologist confirm it because he did not believe what he was seeing. Later that day at rounds, Dr. K said, “I’m not supposed to say this but she must have a lot of people praying for her.”

We rode that high as long as we could. But Baby Girl’s reflux was not improving. Dr. K proposed giving her a g-tube and tracheotomy. We refused. I adamantly did not want my daughter to have a g-tube. The thought of them cutting open her perfect, soft, smooth belly skin was unbearable. Just the sheer thought of it made my eyes well up and spill over.

In early/mid November all the nurses went on strike. Due to the delicate nature of the NICU, the nurses brought in travel nurses and quietly warned all the parents so they could prepare. For 48 hours my husband stayed with her to make sure there were no set backs due to nurses that were inexperienced with her very particular care instructions. For 48 hours he stayed with her, sleeping in a straight backed chair and leaving only at shift changes. This ended up being a blessing in disguise as the travel nurse that had our daughter taught us how to take care of our daughter, and further more, she let us. By the end of the two days we felt much more comfortable with her routine care.

The discussion over a g-tube and trach continued for days before my husband made it very clear that the word “tracheotomy” was not to be uttered ever again unless they could guarantee that it would fix all her breathing issues and allow for her to come home, they couldn’t. However, after much back and forth we consented to the g-tube. They assured me that it was just a tiny hole and once she learned how to eat normally they would take the g-tube out and there would only be a small scar. The hope was that if we could get the feeding tube out of her nose and throat she wouldn’t gag and reflux anymore. Surgery day came and we felt reassured that the performing surgeon had actually performed a major chest surgery on my husband nearly 15 years earlier. The surgery was quicker than expected and Baby Girl’s pain was manageable.

Baby Girl’s first g-tube

Unfortunately, the g-tube didn’t stop the reflux. She needed a pediatric Ear, Nose, & Throat specialist but the closest one was nearly an hour away in Oakland, CA. She was transferred via ambulance with her daddy in toe for what was intended to only be a couple days. Once there and settled in the ENT scoped her nose and throat and found she had a hiatal hernia, the upper part of her stomach was pushing up through the diaphragm and into her chest region. She would need a Nissen fundoplication surgery to repair it.

Nissen fundoplication, also known as laparoscopic fundoplication, is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatal hernia. In GERD it is usually performed when medical therapy has failed, but with paraesophageal hiatus hernia, it is the first-line procedure.
-good ol’ Wikipedia

The surgery would be done with scopes through tiny holes in her belly and down her esophagus and was expected to take only a couple hours tops. I told my husband to call and update me the second she got out of surgery since he was there with her and I was at home with our son. When you have a newborn/preemie at home time ceases to follow its typical trajectory and I noticed 4 or 5 hours had passed and I still hadn’t heard from my husband. I called him and jokingly chastised him for not calling me when she got out of surgery and asked how she was doing. He didn’t know. She was still in surgery and no one was telling him anything. He even went and looked for her back in the NICU thinking maybe they had taken her straight back up there and forgot to come talk to him.

After 7+ hours a doctor emerged to inform my husband that her Nissen was successful, but they had found that during her previous surgery to place her g-tube the surgeons had perforated her bowel and colon causing fluid to leach into her abdomen. To repair the damage and save her from developing sepsis they had to make a large incision across her stomach above her belly button and remove the damaged sections of her bowels and colon. So much for worrying about a tiny g-tube scar, she would now have a scar to rival my c-section incision.

Bloated after over 7 hours of surgery, sporting a fancy new g-tube button

Abdominal scars

It took her three weeks before she was stable enough to be transferred back to our home hospital. Her daddy stayed with her the whole time and made it back just in time for Christmas.

The Nissen had greatly improved her reflux, as long as she wasn’t fed too quickly, but she still wasn’t tolerating any food by mouth without inhaling it into her lungs. For the next month it was a continual boomerang of oxygen support. They asked for our consent to start her on a stronger diuretic, one they had warned us about when she was born, Lasix. Lasix is a very effective diuretic but also strips the body of electrolytes and potassium so she would need routine blood work to prevent damage to her heart and kidneys. After only one dose and she was able to come off oxygen. Again she completely surprised the doctors. She still had pulmonary hypertension and chronic lung disease so after about a week she needed to be put back on oxygen but only a very small dose. We got to the NICU one day to find an almighty Discharge Checklist next to her crib. We were so excited! Her discharge was finally looming in the near future. We were ready for the challenge in front of us because at least we wouldn’t have to come to the hospital every. single. day.

In true to Baby Squirrel form, a discharge date would be set and then moved back. A date would be set and then she would randomly experience apnea over night while in the care of a nurse that wasn’t familiar with her, thus restarting the 5 day waiting period before she could go home. Then she had to pass a car seat test proving she could make the 20 minute drive home safely. Again, against our strict orders, a night nurse performed the test and she failed due to the pads being in the incorrect position causing her oxygenation level to drop. This presented a huge setback. Now the only way they would let her go home was in a “car bed” which would need to be special ordered. Amazon to the rescue!! This thing felt like a freaking death trap the way it precariously attached in my car but on January 14th, 2015 I got my final wheelchair ride.

The scariest wheelchair ride of my life!

Saying goodbye to our children’s NICU aunties and Grandma, their primary nurse, was extremely bittersweet. They had been our family for nearly 5 months. They were the only people in the entire world that knew exactly what we were experiencing every day. On Baby Girl’s final day I left this letter to her team:

Dear [primary nurses’ names] and ALL the nurses that care for, talked to, played with, held, comforted, and loved our daughter:

We can never repay you or thank you enough for the gift you have given us. Thank you for being [Baby Girl’s] mothers while I could not.

We are so overwhelmed with excitement to finally have our family whole and be able to bond with both our children. You have been our family for the last 4 months. You have witnessed the hardest days of our lives. Your kind hearts comforted us when [Baby Girl’s] mounting prognosis felt dire. You are forever in our hearts every time we look at our beautiful children who have taught us how precious and fragile life can be. I cannot come up with the right words to truly express our gratitude.

We will truly miss all their aunties & grandmas.

Saying goodbyes

Leaving the NICU my sister took one last picture of Baby Girl’s empty pod…
Still to this day I cannot articulate how morose this photograph makes me feel.

Baby Squirrel’s Homecoming

In conclusion, over a year later, some days I feel like I am ready to get off Zoloft, I have even reduced my dose a bit. But then there are times that I’m not sure I could handle caring for all my daughters special needs without it. When Baby Squirrel is happy and smiles or laughs my heart swells with joy unlike anything I’ve ever experienced, it’s so amazing and wonderful and I don’t know how I could love someone so much. But when she is irritable and sick and crying for hours/days on end or shitting and vomiting nonstop I want to shoot myself in the face (metaphorically speaking, I promise.) I don’t want to stay on medication forever but it’s still something I’m struggling with daily. Currently my daughter is in the middle of another asthma episode. She wakes up multiple times a night crying inconsolably, coughing and desaturating thus requiring additional oxygen till she can recover. She doesn’t have a typical cry, due to multiple factors it’s quieter and courser but it burrows into your brain and eats your goddamn soul. Along with her pulse oximeter and feeding pump we now have to haul her suction machine upstairs every night and back down again the next day. She requires 30 minutes of multiple nebulizers 4 times a day followed by CPT (chest physical therapy.) I do all this while also caring for her twin brother, who is now running all over the place and getting into everything, and while trying to keep the house in relative order. I can’t take her anywhere for fear of her catching another cold and landing back in the hospital again (those exciting tales to follow in later installments.) Which leave me feeling full of regret that my son is missing out on countless experiences because of his sister. This was not intended to be a pity-party or a sob story but rather to paint a picture of my daily reality and why I don’t feel ready to get off my mediation at this time. Maybe I’m weak but our daily life is entirely too overwhelming without a little chemical help. And on the worst of days bottle-o-wine help. 😉

I know this was an exceptionally long post; thanks for sticking with me as I try to bring our story up to speed. Below are more mostly unshared photos from our time in the NICU. Coming up next: the twins at home, Baby Squirrel’s long awaited cleft lip repair, and her very real, very close call with death.

This slideshow requires JavaScript.

My Battle To Baby(s)

December 19, 20156 Comments

This post is dedicated to the hopeful mommy-to-bes out there. No matter how long your path takes, whether it takes 1 month or 60, till you have your baby in your arms it feels like forever.

Thank you so much for the outpour of love and support that came from my first blog post! I never imagined the positive response I’ve received. xo

Rather than pick up the linear timeline where I left off, I want to go back a bit. I come from what I always considered a long line of Fertile Myrtles. My maternal grandmother had 7 children, my mother had 5, and my oldest sister, who apparently can’t look at her husband without getting pregnant, has 8 children. So I was certain that the day I got off birth control I’d get knocked-up. Because of that fear I was always very responsible; I had never even had a legitimate pregnancy scare before.

In December 2013, three months after my husband and I got married, we decided we were ready to start our family. I stopped my birth control and bought a pack of pregnancy tests. Nothing the first month. Disappointed but I knew it was completely normal and to be expected. The 2nd month, nothing. Mildly irritated but still normal. My doctor has advised me at my pre-conception check-up to allow my menstrual cycle (I hate that term) to normalize for two months before trying to conceive. Two months is a long ass time to wait when you want to get pregnant; when you are ready to have a baby you want that baby NOW. In the months that followed I went through multiple 20 packs of ovulation test kits, charted my cervical mucus, and even purchased a special oral basal fertility thermometer to record my waking temperature every morning. Nothing.

When you’re trying to get pregnant it feels like everyone around you is getting pregnant on the first shot. Those people suck. Just kidding! They are very fortunate and I am jealous. But trying to get pregnant can make you do thing that you know aren’t logical…

Not my brightest idea

Months came and went, 11 to be exact. I was so pissed off at my body and feeling like a complete biological failure. I didn’t want to think about it anymore. I didn’t want to talk about it anymore. And then it happened. A faint second line on the pregnancy test. I had thought for nearly a year of fun ways to reveal our pregnancy to my husband and when it finally happened I opted for Facetiming him and screaming like a crazy person.

We were on cloud 9, I was finally pregnant! At 5 weeks I had a blood test and an ultrasound to confirm the pregnancy. We got to see the little blob that was our baby! It was the most special little blob we’d ever seen. We started talking about names and discussing our bright new future. We planned to wait till the 2nd trimester to announce the pregnancy to our families but we couldn’t resist telling a few of our closest friends.

The excitement was short-lived. The blood test confirmed I was pregnant but my hormone levels were much lower than they should have been. Then I started having very light spotting. I was so scared I was going to lose this baby after waiting nearly a year for this moment. I couldn’t hold my tears back when I would speak on the phone to advise nurses. They asked me to come back in at about 7.5 weeks to check on our baby. The first thing I saw was a flicker. My worries vanished. Our baby had a heartbeat. My own heart flutters just thinking about it now more than two years later. Next we heard the heartbeat. It was music to our ears. I think my husband teared up a bit even. He had been scared too but was staying so strong for me.

My doctor called it a “threatened miscarriage” and said she didn’t expect the pregnancy to last. We didn’t listen. We had seen and heard the heartbeat, our baby was alive and the excitement returned.

The following saturday we were getting ready for my sister’s black tie 40th birthday party when the cramps and bleeding started. I called an advise nurse but I couldn’t be seen till Monday. My heart was broken but we pulled ourselves together, slapped on smiles, and went to the party. We tried to remain positive and I tried not to think about what was happening inside my body.

Two days later I went in for an ultrasound. The flicker was gone. I lay there on the table, tears silently rolling down my face, waiting for a 2nd OB to come and confirm the miscarriage. I faced the wall, I didn’t want to see the motionless ultrasound image again. We made it 8 weeks and it was over. I was given the option of going home and waiting to miscarriage naturally or I could have a Dilation & Curettage procedure (D&C), basically an abortion procedure. I opted for a D&C, the baby was dead, I wanted to get it out and over with.

We rushed out of the clinic, I didn’t want to see any of the pregnant woman in the waiting room. Once at home my husband lead me up to our bedroom to bed but I didn’t make it. I collapsed on the stairs and the emotion of our loss came flooding out. I honestly can’t recall much of the night after that.

Later that week I went in for my scheduled D&C. I had to take a strong antibiotic on an empty stomach an hour before the procedure so by the time they took me back I was extremely nauseous. They led me to a bed with a bag for my belongings and a gown to change into. My husband wasn’t allowed to come back with me, I would see him again in recovery. Once I was ready my bed was wheeled down the hall to wait and get an IV line started. I asked for a barf bag because I honestly felt like I was going to puke. The nurse tending to me was very friendly and chatty. She complimented me on my ring and we talked a little about my wedding. Then she said it, “Why are you having this procedure today, you’re just not ready to be a mom?” I was stunned. I would guess the abortion rate among married woman is much lower than the general population but maybe I’m wrong. As I mentioned before, I had never been pregnant before. I am Pro-Choice but I am thankful I have never had to make that choice. I didn’t know how to respond. “The baby died,” I finally stammered out. My brain couldn’t formulate “miscarriage” at that moment. “Oh, I’m sorry. You know my sister had one of those before,” the nurse replied. I just wanted her to leave. When she finally did I laid there alone, silently crying, trying not to barf.

When the time came, they wheeled me down the hall into an operating room. I was thankful it was all women performing and attending my procedure. I remember the room was cold so they covered me with a warm blanket. They put my legs in stirrups and tied them there. They started pushing my sedative which instantly took effect. I was awake for the entire procedure but I was mentally and physically numb. I recall a nurse with the softest warmest hands in the world held my hand the entire time. To this day I am still so thankful to her.

When it was over I imagined where the mass of cells that had made up our baby had gone. In the trash…biohazard…incinerator maybe…

My dogs keeping an eye on me as I recovered at home

My husband really wanted me to write about our miscarriage, but he wanted me to make it a positive thing. I’m struggling to find that positive twist. Miscarriages suck for lack of a better word, and are physically, emotionally, and mentally traumatic. I think the worst long term effect is I no longer equate pregnancy with having a baby. A friend recently shared with me she had had a miscarriage and after she “felt sad/embarrassed about it and felt that I needed to keep it a secret.” With 1 in 4 woman experiencing at least one miscarriage in her life, keeping it a secret makes us all feel more alone. Don’t get me wrong, I don’t expect woman to want to share something so traumatic and disappointing. That’s why I can’t find the positive twist. I guess I am thankful I lost our baby “early” rather than later…

After I recovered from my D&C we were referred for infertility treatment. Our specialist said he believed I had Polycystic Ovarian Syndrome (PCOS) which was keeping me from ovulating regularly. And that alllllllll the ovulation kits I’d gone through were a waste because they don’t work for women with PCOS. I kept a journal during the process. I wrote about how ill the various ovulation medications made me feel; the hormonal swings that made me feel like I was out of my mind. I was obsessive. Getting pregnant was all I thought about all day long. I was even getting annoyed of thinking about it all the time. All the fear I had accumulated during my previous pregnancy leading up to the miscarriage still followed me, more so maybe even. For over two months this continued, I never felt well. I had what I described as a feeling of “general shittiness.” I wrote in my journal:

“Sick and tired of being sick and tired. I can’t remember the last time I felt good. I’m so sick and tired of hearing myself think and talk about TTC (Trying To Conceive) and infertility. But I’m also really scared of being pregnant again. I’m scared of losing it again or of all the other bad things that can happen. I feel like a crazy person. I want it so bad but I don’t want it/scared of it all at the same time. I want to be pregnant but waiting and fear will just begin again. I wish so bad I could be as ignorant and optimistic as women that get pregnant right away and everything is so easy for them. I’m so bitter and jealous.

I try to remind myself that I come from fertile women and I just need a little extra help to unlock my potential. I wish I could just turn off all the negative thoughts.”

I had to have a procedure called a hysterosalpingogram (HSG), for a HSG a doctor fills your lady parts with dye and then a radiologist takes images of how that dye travels through said lady parts. “It was amazing to see what my organs look like. The fallopian tubes literally look like a strand of hair!” Radiologist said everything looked fine except for what looked like fibroids or polyps in my uterus. I asked if they could be scar tissue from the D&C, she said yes. “I started to tear up. She said its really easy to fix and remove. I cried all the way back to work. Its just one more set back. One more hurdle. I’m so over it.”

My infertility specialist wanted me to scrap the month and have the procedure to remove the scar tissue. I was so frustrated. This cycle I had already been on heavy ovulation medications for two weeks, I didn’t want this month to have been in vain. I insisted we continue and see this month through and if I didn’t get pregnant than I would have the procedure. I did not want another fucking procedure. I dreaded it. The thought of it gave me flashbacks to the D&C and being tried to the stirrups. “I want it to happen this cycle so I don’t have to have the procedure. This ordeal makes me feel weak because I want to give up so quickly.”

We continued with the cycle and I was given an ultrasound so the doctor could see if I was ready to ovulate. I wasn’t. It was disappointing because I would have to double my medication for 5 days and come back again. I asked my husband if it was hard for him to see an ultrasound image again since our miscarriage – he didn’t like it. Five days later we returned and this time I had 3 eggs that were ready! I was told I had a 40% of getting pregnant this month and a 6% chance of getting multiple. She asked, “you have a chance of having triplets, do you want to continue?” The thought of triplets was horrifying to me but we said yes without skipping a beat.

We were given medication that James would have to inject into my stomach at home which would cause me to ovulate within 48 hours. I hate needles and shots but it wasn’t bad. So for the next few days we started sending in applications for a stork…

I was told to wait 10-14 days before taking a pregnancy test since the ovulation injection could cause a false-positive. I waited 8. Those are the 2 longest minutes of your life! But there it was, a super faint 2nd line! I knew it was too early so I kept it to myself and tried to not get too excited. Two days later I took another test and the 2nd line was slightly darker. I decided I would tell my husband that night. I got one pink and one blue bandana and I made signs for our two dogs to wear around their necks, “I’m going to be a big brother!” and “I’m going to be a big brother (again!)” I told my husband to call the dogs. He thought the bandanas were cute but in true man style he was completely oblivious to the signs they had around their necks. He just wasn’t getting it so I practically shouted “I’m pregnant!”

A blood test confirmed the pregnancy and this time my hormone levels were elevated appropriately. At 5 weeks along we went back in for an ultrasound to take a look. Although I had had so much fear of being pregnant again, I was feeling really positive this time. So when the ultrasound tech didn’t say anything right away my heart sank. Not again! I couldn’t bring myself to even look at the screen. Then she spoke, “Do you see those two sacks?” My eyes pop open!

“Twins?!”

“Yep!”

Twins!

We had never wanted twins but we were so excited that I was pregnant again and that everything looked good so far. The first day we couldn’t stop laughing about it. The next day I cried all day at my desk. I was terrified! I come from a large family, I’ve seen firsthand how hard one newborn can be at the beginning. I didn’t know how we would manage. Thankfully my bestfriend knew just what to say:

Thank you for sticking with me! I plan to post at least once a week. Stay tuned for NICU, Postpartum Depression, and Other Things That Suck. All with lots of never before shared photos of A&A during our 133 days in the NICU.

	mommaswearsalot on Grief While Sheltering In…
	Lindsay Beavers on Grief While Sheltering In…
	Stacey on A Year Ago Today
	Cecilia on A Year Ago Today
	slumberqueen on A Year Ago Today

Momma Swears A Lot

Twins, syndromes, hearing loss, special care, and all the love in between

Tag: trauma

Grief While Sheltering In Place

We Finally Get A Diagnosis

*For additional information I have included a full chart of characteristic, descriptions, frequencies, and links to pictures at the bottom of this post.

*Major Features of CHARGE Syndrome (very common in CHARGE and relatively rare in other conditions)

Minor Characteristics of CHARGE: Significant, but more difficult to diagnose or less specific to CHARGE

Other Features of CHARGE: consistent with CHARGE, possibly medically significant, but less helpful in making a diagnosis

No one feature is required to make a diagnosis of CHARGE. Every feature varies from severe to absent in different children.
-http://www.chargesyndrome.org/about-charge.asp

My Daughter Is Deaf

Home, Surgery, PICU & Death: Part 2

Home, Surgery, PICU & Death: Part 1

I Got The PTPPNICUDSD Blues!

My Battle To Baby(s)

Share this:

*For additional information I have included a full chart of characteristic, descriptions, frequencies, and links to pictures at the bottom of this post.

*Major Features of CHARGE Syndrome (very common in CHARGE and relatively rare in other conditions)

Minor Characteristics of CHARGE: Significant, but more difficult to diagnose or less specific to CHARGE

Other Features of CHARGE: consistent with CHARGE, possibly medically significant, but less helpful in making a diagnosis

No one feature is required to make a diagnosis of CHARGE. Every feature varies from severe to absent in different children. -http://www.chargesyndrome.org/about-charge.asp

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

No one feature is required to make a diagnosis of CHARGE. Every feature varies from severe to absent in different children.
-http://www.chargesyndrome.org/about-charge.asp