Tag: hearing loss

We Finally Get A Diagnosis

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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.

 

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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

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*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%
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

Helmet Hair Don’t Care

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This is just a short post, kind of a bonus episode if you will, to bridge the gap up to Baby Girl’s genetic testing.

A week after we learned Baby Squirrel was Deaf, we met with her Craniofacial panel of doctors and surgeons. We saw this team for the first time while I was still pregnant, after we found out via ultrasound that she had clefting.  This team included her plastic surgeon, geneticist, ENT/Head and Neck surgeon, psychologist, social worker, speech and language pathologist, orthodontist and pediatric dentist, and maxillofacial (jaw) surgeon.  After they filed in one by one to meet with us, they held a conference to formulate a complete treatment plan.

With her latest diagnosis, audiology and speech and language pathology were stricken from her treatment plan.  She will never hear and consequently will never speak so no medical intervention is necessary, just to keep working with her Early Start Deaf and Hard of Hearing program.

At the time she was 9 months old and didn’t have any teeth yet, so the oral surgeons didn’t have much to go on.  We knew from our initial meeting that they wouldn’t have much of a role until she was older, about 7-8 years old, when her adult teeth begin coming in. To bridge a cleft in the gums, currently the procedure is to take bone from the patient’s hip and implanting it in the upper jaw, grafting tissue over it to complete the jaw. (This means she’ll most likely also have some fancy veneers.)  However, new methods are advancing so there is no way to say what the procedure will be when the time comes.

After Baby Girl’s cleft lip was repaired, while we were in the PICU recovering from complications from the surgery, her plastic surgeon would routinely come check on her.  He seemed genuinely scared by her development of septic shock and declared that he was taking her cleft palate repair off the table indefinitely.  For a typical child, cleft lips are repaired when the child is 3-4 months and at least ten pounds; palates are typically repaired at 1 year of age. When we met again months later at the Craniofacial panel, he elaborated – we now had more information. Her surgeon didn’t want to close her palate because he didn’t want to risk her getting that dangerously sick again, she didn’t need it closed for speaking, she didn’t eat orally yet, and it actually helped her by giving her a larger airway.  And as an added bonus, waiting to close a palate allows the upper jaw to continue to grow naturally, while closing it can cause thick scar tissue to stunt its growth, requiring more orthodontic procedures later on.

To back up again, while Baby Girl was still in the NICU, I started to notice that her head was getting flat on one side, along with her forehead appearing asymmetrical. The nurses were good about changing her position but one side of her crib had easier access so she tended to face that way. Once she came home I tried positioning and Tortles to correct it but she had no neck control, and her airway was so fragile that limited positions were safe for her.

Fast forward to her Craniofacial panel, I mentioned this flattening of her head to her plastic surgeon and he prescribed her a Cranial Band aka a helmet. Long before marriage and kids and reality, I used to see kids with helmets and feel embarrassed for the baby and the parents. Clearly there is something wrong with the kid.  However by the time Squirrel was 10 months old, we had already experienced so much that a helmet was the least of our worries. Although I had been aware of my own previous prejudices of children with helmets, I was still caught off guard by some assumptions people had for why she had one.  I understood when people guessed if it was for seizures or epilepsy, it does look similar. However, I had adults (plural) ask me if she had it because she was missing the top of her skull… -_-
For once this poor girl had something that wasn’t medical, strictly for aesthetic purposes – I wanted her to look more normal and not have a asymmetrically flat head!

She was measured and fitted and I ordered her a light pink helmet. The makers of the helmet tried to talk me out of it.  Squirrel would have to wear it 23 hours a day, with a one hour break for baths.  And it was summer time, they are hot and get really smelly from sweating.  She was also on the older side so they couldn’t guarantee marked improvement that would be expected with say a 6 month old. But I wanted to give it a shot, she already has so many thing about her appearance that stood out, if a helmet could cross one thing off that list I wanted to try it.  At home I ordered her big bows to attach to it. She was going to rock this thing!

Photomontage time!
During this time she also had a pH probe test, you’ll see it taped to her face, but to write about it would require including a longer backstory. If you really want to hear about it please message me.  Taking Baby Girl out in public makes me extremely anxious because it feels like everyone is staring at us. On top of a baby on oxygen, add a helmet and a pH probe down her nose and taped to her face and all eyes really are on us. Some people would stare as they walked by, some people would politely smile at us, and others would blatantly walk into our path in front of our stroller to stare at her. I wanted to scream at these people.  I felt like I was being a bad mom by not scolding these people. However I realized these people honestly don’t know any better and I needed to give them grace.  I almost went as far as tattooing a reminder on my wrist but I opted for an engraved bracelet instead. The correct answer is smile, smile if you must look. Even better: smile, say hello, and ask questions!!!  I will gladly answer any questions you have about my daughter, just don’t fucking stare.

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Bonus montage of the twins passing out in different places:

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OK, one last one of their first birthday since I don’t feel like blogging about it:

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And after just 2 months, a week and a half after their first birthday, she graduated from her helmet.
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Coming up next:  Upon learning of her 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. “Next time, on Serial.”

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My Daughter Is Deaf

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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*

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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

ear_works2

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.

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After MRI and a lot of attempted IVs

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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.

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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.

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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!!!!!!!

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*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 1

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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.

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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.

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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.

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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.

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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.

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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.

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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…

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