Heart + Helmet + Other Happenings

We’re excited to share an update on Nora!

Nora’s heart

A few days after Nora was born, we learned that she has an atrial septal defect (ASD) (a hole) in her heart. This is a common defect, one that usually doesn’t need to be corrected right at birth; in fact, sometimes they even correct themselves over time. A few weeks ago, we took Nora in for her first follow-up appointment, and the doctor did an EKG (electrocardiogram) and an echocardiogram (an ultrasound of the heart). Unfortunately, the hole didn’t fill itself in, and it is actually located a little lower than they originally thought, so they are now characterizing it as a primum ASD.

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Nora during her EKG. She had fun playing with all those cords.
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Nora during her echocardiogram

We don’t understand too much about it, but the cardiologist informed us that a primum ASD generally does not correct itself, and cannot be fixed with a catheter, which means Nora will probably need open-heart surgery when she’s two or three. We are scared about this, but luckily, a primum ASD surgery seems to be a fairly common, straightforward procedure: they basically just cover the hole with a patch. You can learn more about the procedure in this article: Repair of primum ASD with cleft mitral valve. We’ll take Nora in for a sedated echocardiogram in March to get a better look at things.

Nora’s new accessory

Nora was born with a flat spot (plagiocephaly) on her head behind her right ear. She was also born with torticollis (a tightening of some of the muscles in the neck), so she liked to turn her head to the right. Because of the flat spot and the torticollis, she always turned her head to the right when she slept, which made the flat spot worse. We worked so hard to help her with the torticollis, taking her to weekly physical therapy appointments and doing daily neck stretches with her. We even bought her a little sleeping hat, called a Tortle, to keep her head from turning to the right when she slept. But unfortunately, the flat spot never went away.

As a side note, the physical therapists think the torticollis is gone for the most part, but you may notice that Nora likes to tilt her head to the left and turn it to the right when she’s holding it up. They think this might be a muscle imbalance resulting from the torticollis, combined with her favoring her right eye (which has better vision than the left). We’re hoping that as she keeps building her neck strength it will even out (although we do think her head tilt is actually quite darling).

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Nora sitting up like a big girl!

When her flat spot didn’t get any better, we took Nora to an orthotist, who evaluated her and suggested that she would benefit from a corrective helmet. She started wearing the helmet the last week in September, and will continue to wear it 23 hours a day for 3-6 months. We were a little nervous that she might be uncomfortable in the helmet, but it doesn’t seem to bother her one bit! Since she’s already wearing the helmet, we are hoping to kill two birds with one stone and get her in an early-start hockey comp league next week.

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Nora at her helmet fitting
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Kung Fu Nora
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Posing for the camera!
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Leg rolls

Physical therapy

Nora has been doing really well with her physical development; the only thing she is behind in is her gross motor skills. But she is continually progressing, which is what we focus on! She is just recently mastering the art of sitting, and the helmet has been a great protection during her wobbly stage! In just the past few days she has also started standing on her own (using the couch for balance)! We put her toys on the couch and help her place her hands for balance, and she’ll stand there for a few minutes at a time, playing with her toys! She works so hard for each of her milestones, and she always gives us a beaming smile when she figures out how to do things.

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Nora pulls her hair up for physical therapy; she doesn’t mess around!
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Nora standing up at the couch

 

Her neck strength has come a long way; she loves to hold her head up during tummy time. She has also learned how to roll over, and sometimes will keep rolling until she hits a wall. She reaches out for toys when she’s on her tummy, and has started pushing the ground with her legs to help her reach for them, which is a precursor to crawling!

Nora’s eyes

When we took Nora to her first eye appointment a few months after she was born, the doctors dilated her pupils and looked through them to see the insides of her eyes. They told us that she has retinal colobomas in both eyes, and that the colooboma in her left eye is compromising more of her vision than the one in her right. We recently took her to a follow-up appointment, and they confirmed their findings from before.

To be honest, the eye doctors really can’t tell us much about her vision until she gets a little older. But we feel like she’s doing really well! She can find us when we call her name, she laughs when we make faces at her, and she loves reading books and playing with her toys. Sometimes we do little experiments to find out how far she can see; to me it seems like she can still see me when I’m standing about 10 feet away from her.

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Being so brave in the hot seat at her eye appointment
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We love her big blues! Here you can see the iris coloboma in her left eye.

Nora’s ears

Nothing new here. We took her to some more auditory brainstem response (ABR) tests this summer, and they confirmed the findings from the first few ABRs. Her hearing loss is considered moderate, so she sports hearing aids. Recently she has become more interested in them, and sometimes she pulls them all the way out of her ears. So whenever she puts her hand to her ear, we say, “No no,” and she draws her hand back. Sometimes she laughs at us and reaches right for them again.

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Perks of hearing aids; you can sleep through almost anything when they’re not in!

Other updates

  • Nora is starting to warm up to baby food. It has been a long process, but she’s getting the hang of it!
  • She has finally overcome her fear of being in the bath tub. Up until recently, for the first few minutes of her tub she would be so terrified she would make the most heartbreaking whimper. But she’s got it down now and loves to kick and splash!
  • She loves music, especially playing the guitar/ukulele with dad.
  • She likes to feel and scratch different textures. It’s the cutest thing ever. She puts her hands palms-down on a surface, and repeatedly grasps at it (opening and closing her fists), to feel what is there.
  • She loves to babble and say “Mama” and “Dada,” except for when we are around any medical personnel who are trying to observe her speech development. In that case, she won’t make a peep!
  • She loves reading books!
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Nora wakes up with the most contagious grin in the mornings
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She is obsessed with his hat!
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Loving her balloon at Apple Daze!
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Mom looked away for a couple minutes and this was the result. She dumped a bag of hair elastics ALL over. Including in her helmet, down her onesie, and in her mouth.

 

 

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Nora’s Hearing Aids + Other Updates

It has been a while, so here is an update on Eleanor’s health! She is doing AMAZING! Today was a big day for her because she got her hearing aids! She got fitted for these one month ago, so we have been eagerly waiting for them!

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On the way to the hospital for Nora’s hearing aid fitting.

Hearing Aids!

To determine the extent of Nora’s hearing loss, she had to be a little trooper through two different hearing tests. The test is called an Auditory Brain Response test (we explained it in a previous post, but I will summarize it again here). The tests are non invasive, but they are LONG (over 3 hours each), and she had to be asleep for the entire thing. To run the test, they just put a little plug in her ear that they run sound through, and they have wires connected to her and to a computer. When they put the sound in, her brain’s response to the sound shows up on their computer screen. They tested all different frequencies.After two ABR’s with pretty much identical results, it was determined that she has mild-moderate hearing loss in both her right and left ears.

With hearing aids, she is now hearing perfectly!  This also means she should be able to speak clearly.  Before the hearing aids she was only able to hear loud higher pitches, and she could hear us speaking to her only if we were holding her. The hearing aids are bringing in every sound now, and it has already been so fun to see her eyes get big when she hears a car honk, hears our footsteps from across the room, or hears music! It is pretty cute to see the look on her face when we put the hearing aids in. She gets all quiet like she is listening so intently and just wants to take it all in!

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Nora grinning on her first day wearing hearing aids.

She will have this set of hearing aids for 5 years. We decided to match the hearing aid to her hair (we are just banking on her hair not lightening up much more!), and the mold in her ear is sparkly pink! Because she is still so small and growing so fast, the mold part of the hearing aid will be refitted and replaced quite often. They say every couple of months. So we will probably have some fun changing the color of the molds every so often!

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Nora’s hearing aids are brown to match her hair, and the molds are clear with pink sparkles.
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A closer look at he hearing aid and ear mold, with the battery compartment open.

Eleanor’s hearing loss is “conductive” (meaning a result of inner ear structure issues, rather than from nerve issues), and because of this, there may be some ways to fix it with surgery down the road. If that is the case, she may not need hearing aids forever. But we will cross that bridge when we get to it, which is at least 5 years from now!

Some brief updates on a few other things:

Vision

Nora is doing so well with her vision! Despite her bilateral optic nerve coloboma, she is seeing light and dark, and also tracking objects when they are close enough! This is HUGE! I spent a LOT of time being really down about whether or not she would ever be able to see us, or just things in general. So it was such a big deal when she started to make eye contact with us and follow things.  She is really starting to get good at shifting gaze from one thing to another, and can follow a flashlight or colorful app like a champ! She loves to look at her toys and hold them in front of her face. She also just stares at her hands every now and then, which is so cute!

Nora has something called nastagmus, which in short means her eyes shift back and forth quickly while she is trying to focus on something. While it will never go away, with time she will learn how to pace it, and will learn how to focus on things more quickly. The vision lady from Early Intervention (a free government program provided through the school district) is pretty confident that she will not need to learn Braille, and that she may not end up being considered “legally blind” like they currently say she is. Time will tell! We are really feeling excited and optimistic about her eyes.

Physical Therapy

Nora has been seeing a pediatric physical therapist once every two weeks. Originally, she started it because of her torticollis (tightening of muscles in the neck). We think she had the torticollis when she was born because she must have had her head turned to the right for most of her time in the womb. After weeks of regular neck stretches, the torticollis is pretty much gone. However, she still prefers turning her head to the right, because she has a flat spot on the right rear side of her head, and it rests comfortably against the floor when she’s lying down.

Nora also has low muscle tone, which is very common in CHARGErs. Because of this, she will have some developmental delays. This is why it has taken her a bit longer to hold her head up (although she is making great progress).  Aside from low muscle tone, she may also have a harder time with balance, as many CHARGErs do (see the “Balance” section below). The low muscle tone, combined with balance problems, can cause delays with balance-related actions like crawling, standing, and walking.

Overall, physical therapy is keeping us right on track with stretches and exercises that will help her be strong!

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Nora showing off her skills at physical therapy. She’s getting so good at holding her head up!

Corrective Helmet

Nora was born with a small flat spot, but it has gotten larger over time because of her torticollis. We have tried all sorts of things to help correct it on our own. We are always trying to get her to turn her head to the left when she’s lying down or sitting in her car seat, but she can be a stubborn little thing! Because it isn’t getting better, she will start wearing a corrective helmet at around 4-5 months. We don’t know much more than that right now. We are hoping she’ll only need to wear it for three or four months.

Blink Reflex and Possible Facial Nerve Palsy

We noticed recently that Nora doesn’t have a normal blink reflex. After contacting opthomology, we learned there isn’t much that can be done as of now, besides monitoring it and giving her eye drops if her eyes seem irritated. We’ve also noticed that she has never really moved her eyebrows or forehead. After discussing this with some other CHARGE parents, and with our genetics doctor, we think it is possibly due to facial nerve palsy. We are told it will likely improve with time, but it could take months or years to do so. We may get a temporal bone CT scan in the future, which we are told may help us detect the cause of the palsy.

Balance

Nora off and on will get pretty upset when we hold her while moving around. We have known pretty much since she was born that she calms down when we lay her down flat. After doing some research, we have learned that the reason behind this is probably because when she lies flat, it is easier for her to know “where she is” in space.

CHARGE kids are frequently missing or have small semi-circular canals (which help to tell the vestibular system if a person is sitting up, lying down, etc.). On their back, children have more input from the floor, because a greater area of their body is in contact with the floor. The increased sensory input and stability they get from lying flat on the floor is really comforting. Almost every CHARGE parent we talked to about this said that over time, their child got more and more comfortable being carried around. So we can expect good things to come!

Our Favorite Activities with Nora

Some of our favorite times with Nora include morning snuggles with Nora (she’s so happy in the morning!), bath time, reading books to her, watching her play under her play mat (she’s figured out how to kick and make the toys move), getting right up close and having conversations with her, and, most recently, watching her try to roll over! She is getting so strong and is as little trooper despite everything she faces! We can’t get enough of her.

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Nora’s favorite trick. She lies on her back and kicks the frame of her play mat so she can watch the toys swing back and forth.

Nora’s Birth Story

Video by Hailey Norman. For details about the song, see the last section of the post.

Dec. 23, 2016, 3:15am

“Wil!” Becca’s voice rang out from the bathroom,”I think my water just broke.”

This was it. Nora was coming. We had been trying to have a baby for two and a half years, and it was finally happening!

We called University of Michigan triage, and they told us there was no rush, since Becca’s contractions were still fairly far apart. They told us to just make sure the baby was moving, and to head over to the hospital in a few hours. But the baby wasn’t moving. Becca tried the usual tricks to get her to move: drinking orange juice, cold water, and switching from side to side while lying on the bed. Still no movement. We started to get a little uneasy. Becca’s father Kerry helped me give Becca (and Nora) a priesthood blessing, and we decided to go to the hospital.

4:30am

We checked into triage, they hooked Becca up to the monitor, and we heard the comforting swoosh of Nora’s heartbeat on the Doppler machine. Becca got antibiotics, and we waited in the triage room while her contractions got stronger.

8:00am

When things didn’t progress as quickly as we expected, we decided to pass the time watching a movie on the in-hospital TV network. We started watching Gone in 60 Seconds, a favorite of both of ours. It wasn’t until Memphis Raines (Nicholas Cage) pointed at the 1967 Shelby GT 500 and said, “There she is, there’s Eleanor,” that we remembered I had suggested we name our baby Eleanor because I liked the name from Gone in 60 Seconds. (We’re still working on fabricating a more meaningful story for how we picked her name.)

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Becca hanging out in the triage room, where we watched Gone in Sixty Seconds while waiting for labor to kick into gear.

9:45am

We were moved from triage into a labor & delivery room. Throughout the day, the contractions got more intense, so they gave Becca an epidural. It failed, so they took it out and tried to place another one. That one failed too. There was one window on Becca’s lower-right belly that just would not go numb. They kept increasing the flow of the epidural medicine, but it wasn’t helping.

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Becca getting ready for her epidural.

7:30pm

Becca was dilated to 7 cm, and Nora had moved down even further. Becca was in a lot of pain without the epidural, but she hung in there. Things kept slowly progressing, and soon it was late into the night. Becca spent the whole night pushing and trying new positions, but Nora wasn’t budging. Somehow she had flipped and was facing up (towards Becca’s front side) even though she had been facing down nearly the whole pregnancy. Becca was amazing. I can’t believe she didn’t pass out from all the pushing.

Dec. 24, 2016, 5:15am

After consulting with the doctors, we decided that the safest option was a cesarean section. Normally they are able to use epidural for c-sections, but since Becca’s epidural had that window that wasn’t working, they said she might have to be put under general anesthesia (i.e., putting her to sleep). Becca really didn’t like that idea. She’s always had a fear that if she’s put to sleep she won’t wake up.

The doctors said they would still attempt the surgery without general anesthesia, and that if it worked without general anesthesia, I’d be able to come into the operating room to be there with Becca.

5:45am

They took Becca to get ready for the surgery, and handed me some scrubs to put on. I had called Becca’s parents, Kerry and Leigh Ann, and her sister Hailey to come to the hospital since the baby would be there soon. They arrived right after I had my scrubs on, and then a nurse came to tell me I’d be able to go into the operating room.

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In my scrubs, all ready to join Becca in the operating room (sorry for the poor quality).

I walked into the operating room and saw Becca on the table, all ready to go. I held her hand and we talked a little bit as they were getting started. She flinched a little bit every now and then, and I could tell the pain was getting worse and worse. Pretty soon she let out a cry, and they realized she wasn’t quite numb where they were working. They decided to put her under general anesthesia, so a nurse took my phone to take pictures for me, and I walked back to our room.

The next hour was probably the most terrifying hour of my life. When the doctors had explained the procedure, they said they’d be able to get Nora out within 15 minutes of starting, and that they’d take her to a room where I’d be able to hold her while they closed Becca back up.

When 15 minutes turned to 30, then to 45, and then to 60, I was terrified. What was holding them up? They had said I’d see Nora 15 minutes after they started the surgery! Were they trying to save her, or Becca, or both? Were they trying to figure out how to tell me that one of them didn’t make it?

I asked Becca’s family to pray with me. I could tell by the look on their faces that they were as concerned as I was. Everyone was uncomfortably quiet. After we prayed, I started pacing in the hallway, hoping to talk to someone who might know something. After 10 more minutes, I finally saw a doctor who had taken care of Becca the previous evening. I asked her to find out what was taking so long, and she headed for the OR.

I cannot describe the wave of relief that swept over me when she came out and said, “Mom and baby are both fine.” In that one hour, I learned more about priorities and perspective than I had learned in my entire life. It was then that I truly realized, through experience, how much I love Becca and Nora.

We found out later that Nora actually wasn’t breathing when she came out, so they had to suction her airway. When that didn’t work, they had to do a deep suction, and she started breathing. I’m almost glad that I wasn’t there, because I don’t know how well I would have handled that.

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This is one of the photos the nurse took with my phone before either of us were able to see Nora. She weighed 7 lbs 14 oz, and measured 20 3/4 inches long.

7:00am

I finally got to see Becca and Nora. I was led into the post-anesthesia care unit (PACU), and found Becca holding our little sweetie in a little compartment partitioned with a curtain. Becca doesn’t remember any of this, because she was still recovering from the anesthesia, but she kept looking and Nora and just saying, “Hey you!” Becca started falling asleep, and then started crying because she was falling asleep while holding Nora. So I took Nora from her and held her while Becca rested.

Our baby was finally here.

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Becca, Nora, and I in the PACU after Becca woke up from the anesthesia.

(I’ll continue this story, along with the dramatic ups and downs of our week-long stay in the NICU, in a future post. Also, be on the lookout for an update on Nora!)


Below is an entry from my journal that I wrote about two weeks after we found out that Becca was pregnant with Nora. It explains the story behind the song in the birth video that Becca’s sister Hailey made for us.

Sunday, May 1, 2016

On Tuesday, April 19, we confirmed with a blood test that Becca is pregnant, and that our first round of IUI worked! On the actual day that we performed the IUI (April 12), I had a very powerful experience. The night before I had heard a song on my Discover Weekly Spotify playlist. The song is called “Light” by Sleeping at Last. I loved the instruments and the voice, but I didn’t listen closely to the lyrics. As I listened more closely, I began to wonder if the song was addressed to a newborn baby. On the morning of the IUI, when we were driving to Pleasant Grove [to the fertility clinic to do the IUI], I showed Becca the song and we listened closely to try to understand the words. Here are the lyrics to the song:

May these words be the first
To find your ears.
The world is brighter than the sun
Now that you’re here.
Though your eyes will need some time to adjust
To the overwhelming light surrounding us.

I’ll give you everything I have,
I’ll teach you everything I know.
I promise I’ll do better.

I will always hold you close,
But I will learn to let you go.
I promise I’ll do better.

I will soften every edge,
I’ll hold the world to its best,
And I’ll do better.

With every heartbeat I have left
I will defend your every breath,
And I’ll do better.

‘Cause you are loved,
You are loved more than you know.
I hereby pledge all of my days
To prove it so.
Though your heart is far too young to realize
The unimaginable light you hold inside.

I’ll give you everything I have.
I’ll teach you everything I know.
I promise I’ll do better.

I will always hold you close,
But I will learn to let you go.
I promise I’ll do better.

I will rearrange the stars,
Pull ’em down to where you are.
I promise, I’ll do better.

With every heartbeat I have left,
I’ll defend your every breath.
I promise I’ll do better.

I will soften every edge,
Hold the world to its best.
I promise I’ll do better.

With every heartbeat I have left,
I’ll defend your every breath,
(I’ll do better.)

As I listened to the song, my lip started to shake and a lump grew in my throat. I almost cried. I felt a distinct sensation that the veil was thin and that a spirit child that we have been waiting for was on its way. I felt that this time things were going to work. I have a strong connection to this song now, and I feel that it will reflect my relationship with our first child throughout that child’s life.

Eleanor Jane Parson

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Meet Eleanor (Nora) Jane Parson.

She came to us early in the morning on Christmas Eve at 7 lbs. 14 oz. and 21 inches long. We love her so much. She has changed our lives. Her life has already been filled with miracles, and she has already blessed and strengthened so many people around her. That is why we’ve decided to share her story.

After Nora was born, the doctors noticed some anomalies that called for closer examination. We ended up staying for a week in the NICU at the University of Michigan Hospital while they ran all kinds of tests and ensured her stability. (We’ll cover our experience in the NICU in more detail in later posts.) Most of the test results came back completely normal, but one test, the CHD7 gene mutation test, came back positive. As a result, Nora was diagnosed with a condition called CHARGE Syndrome.

CHARGE is an acronym, and stands for the following symptoms:

  • Coloboma of the eye
  • Heart defects
  • Atresia of the nasal choanae
  • Retardation of growth and/or development
  • Genital and/or urinary abnormalities
  • Ear abnormalities

Most people with CHARGE do not have all of the symptoms in the acronym, and the severity of the symptoms varies widely among the CHARGE population. Because Nora is still so young, there is still a lot we don’t know about her symptoms, but we do know that she has the C, the H, and the E, and that she does not have the A.

Coloboma of the eye

A coloboma is basically a void in one of the structures of the eye. Nora has retinal colobomas in both of her eyes, as well as an iris coloboma in her left eye. Iris colobomas are visible, but usually don’t affect a person’s vision. Retinal colobomas are not visible, and usually do affect vision. The severity of vision loss depends on the size and location of the coloboma.

That’s about all we know about her eyes, although we do feel like we can get her to look at us and follow our fingers sometimes, which is encouraging! We have an appointment next week with an ophthalmologist, so we’ll probably know more after that.

Heart defects

Nora has two heart anomalies:

  1. A bilateral superior vena cava with a coronary sinus to the right atrium
  2. An atrial septal defect

The first one has no net effect. It occurs in about 1-2% of people, and it basically means that the blood coming from her left side takes a different route than usual to get back to the right atrium. We actually knew about this one before she was born.

The second one is simply a hole in part of the heart. It’s fairly common, and in many cases it fills itself in. Nora’s is on the smaller side, so the doctors are just going to check biannually to see its progress. It could fill itself in, or it could stay open and pose no threat to Nora, in which case nothing needs to be done. If the doctors decide it needs to be corrected, they would probably do that around 4-5 years of age.

Atresia of the choanae

Nora does not have this symptom. It is a blockage in the nasal passage, sometimes just on one side, and sometimes on both sides.

Retardation of growth and/or development

This is one that we won’t know about for a while, but as far as growth goes, Nora is doing really well!

Genital and/or urinary abnormalities

Nora doesn’t have anything visibly abnormal here, and most girls with CHARGE don’t. The most common symptom appears to be that girls with CHARGE sometimes need supplemental hormones to help them get started with puberty.

Ear abnormalities

We have great news to share about Nora’s ears! On Thursday we went to the audiologist for a hearing test and found out that Nora has hearing in both ears! She hears at a minimum of 45 decibels in both ears, and the normal minimum is 20 decibels, so her hearing loss is considered mild.

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Nora during her Auditory Brainstem Response test. She responded at 45 decibels in both ears! She was such a good girl and stayed calm while being pestered for over three hours!

We also found out that at least one of her nerves of hearing (and perhaps both) responds at just 15 decibels, which means that it is completely normal, and that the cause of the hearing loss is something mechanical between her outer ear and the nerve of hearing. The mechanical issue could be simply fluid that needs to be drained, or perhaps malformed bones that need to be adjusted (we’ll find out soon when we visit the ear doctor). If the issue can be fixed, then there’ll no longer be any obstruction between incoming sound and her nerve of hearing, and she’ll be able to hear without any assistance. If it can’t be resolved surgically or medicinally, then the worst case scenario is that she’ll sport some hearing aids to offset the mild hearing loss. In either case, she’ll be able to hear and speak!

We were so happy to find out that she has been hearing everything we say to her when we hold her, and that she can hear me plunking Iron & Wine tunes on the guitar. I really wanted her to be able to experience music.

nora

Nora is eating really well, and has already grown out of her newborn clothes. She is always so content, and is starting to make the cutest baby sounds. She is also a champion sleeper! We can’t get enough of her crazy hair and chubby cheeks. We are so grateful to be her parents. We are looking forward to celebrating each little milestone she makes!


If you want to find out more about CHARGE, we have found the CHARGE Syndrome Foundation website to be very informative.