Our Goldy Girl

Our Goldy Girl

by | Jul 8, 2018 | Blog | 0 comments

Our Goldy Girl is almost one month today. This past month has been an emotional roller coaster full of ups and downs. On June 9th we were blessed with the sweetest little babe after a healthy full term pregnancy. We were so excited to finally have and hold her. On the first morning while holding her and soaking in all of her soft skin and head full of thick dark hair we noticed her left ear looked a little different than her right. After an exam by the hospitals pediatrician we were told she had a “mild” case of microtia atresia in the left ear and we would have further testing done and a specialist from Primary Childrens would stop by. A few hours later we did the routine hearing screening and she failed and the ENT from Primary Childrens stopped by and congratulated us on our new baby then told us that microtia was something their doctors dealt with daily and that we would need to schedule and follow up with them in a few weeks and that was about the extent of our hospital stay.

The day after we got home from the hospital we headed to our routine first pediatrician appointment. She was only three days old. He did the full exam on her and told us her collar bone was swollen and said she was looking a little “yellow” and suspected jaundice. Then he sent us to Primary Childrens for an X-ray of her left collar bone and a blood test to test for jaundice. I watched the screen as they did the collar bone X-ray and I didn’t need a doctor to tell me it was broken. It wasn’t a small fracture it was a total clean break. I felt so bad because I hadn’t been being careful with her collar bone at all and it finally made sense why she was crying when I was changing her outfits. A few hours later I got a call with her bilirubin results and she was at a 12 and to go check again the next day.

In the first week of her life we had to go to Primary Childrens lab 6 out of 7 days and give blood to check her bilirubin levels to monitor her jaundice. Over that week the highest her levels became were a 19.5. If they would have reached a 20 we would’ve had to go back and stay at the hospital under the special jaundice lights but luckily after hitting the 19.5 it slowly started coming down and we didn’t have to go daily anymore.

On June 15th when she was 6 days old we went and met with the audiologist at the UofU for an ABR. At that time we discovered her inner ears on both sides were normal through the bone conduction test and that she would be a candidate for a BAHA. This was a moment of relief for me. For six days, Kylan and I had questioned whether or not she was deaf and finally we knew that even though she couldn’t hear now, one day she would be able to hear and I was thrilled. However we left that appointment still not knowing if she could hear normally out of her right ear.

Over the next few weeks we played the guessing game. Sometimes I would be convinced she could hear and others I felt like I was just talking to myself all day. We did little self tests like ringing a bell on one side of her head and then the other to see which one she seemed to hear more and got nothing. We spoke in different voices to try to see if she would hear different pitches and got nothing. We rang the doorbell and would sometimes get a little flinch or something that seemed convincing but still just didn’t know and eagerly awaited her appointment with the ENT (ear nose and throat) doctor on July 5th.

We scheduled her two week checkup a few days early on June 21st so that we both could make it. Going to that appointment we thought we were just going to go get a weight check, be told her jaundice looks a little better and go home. We were so wrong. I explained a bit of this situation in my making lemonade post but basically our pediatrician’s office heard a heart murmur and sent us straight to Primary Childrens Hospital to get a chest X-Ray which after reviewing they told us she had an enlarged heart with fluid build up around it so we went straight to the ER and were admitted overnight. While we were there they did an EKG, Echocardiogram, blood work and told us our Goldy has a PDA and PFO. They started her on a heart med which made her pee out about 9oz of fluid over night. The next morning we met the cardiology team and the doctor who will be doing her heart surgery, Dr. Gray. They sent us home on a low dose of a diuretic called Lasix that was supposed to help the water build up around her heart and in and around her lungs and sent us home to wait for her to grow bigger for her heart surgery which they were hoping we could hold off on until she was about six months.

On the morning of June 28th we had our first meeting with the states providers. One company is called DDI Advantage otherwise known as Early Intervention and the other is called PIP and they specialize in children that are deaf and blind. As much as I was grateful for these services I couldn’t help but be a little bitter. I wasn’t bitter to them individually but just to the fact that two years prior I went through DDI and they would come to my house once a week and make sure Rewsey was hitting all of her milestones and show me different activities to do with her almost like home work to make sure she was advancing. Although it was extremely helpful I celebrated with Rew on the day they called and said that she was doing so well that she had graduated out of their program and at that time I never expected to have our weekly Thursday appointments again.

So here I was with not one but two state agencies in my living room starting all over again. After the same list of general questions about Goldy like is she “eating sleeping and pooping” “does she look at your face for more than two seconds” and other things like that they moved onto questions for me. That was the question I hated the most. I didn’t even know the answer to that myself. So after a series of questions and a nurse giving me a speech about how hard it was going to be to have a child with hearing loss and how I would need to join the deaf community and learn sign language but not to worry because they would be there for me I finally started crying in front of the room full of strangers in my own home and signed their paper work and they left.

Later that evening after Kylan stayed home with Rew while I headed to the pediatrician for a follow up and once again what I thought was going to be a quick little weight check turned into a 4 hour appointment that led to the cardiologist doubling her dose of Lasix after discovering her respiratory rate was about double what it was supposed to be. Then on top of it we were sent back to the lab to give more blood because her jaundice still looked “quite high” for three weeks. Up until this point I felt like I was managing things pretty well considering the circumstances but after hearing the heart medication wasn’t working properly, I started feeling extremely anxious and any little sound she would make meI feel like she wasn’t breathing. I kept checking her color to make sure she was getting enough oxygen and then continued doing what I like to call “psycho feeding” which basically consisted of me feeding her on demand anytime she would even remotely act hungry in hopes that it would cause her to poop more and get rid of her jaundice faster.

So between everything that was going on I wouldn’t leave her side. I would not to go to the grocery store, shower, go outside or anything. Luckily my clients were understanding because there was no way I was going to leave her to go to work for hours at a time but I had to get back to work to start saving for what I thought at the time was just going to be a few thousand for a portion of her 1 hearing aid, little did I know that this was not the case.

June 29th was the big day. The day we would get to go try on a BAHA! A BAHA is a bone conducted hearing aid that sits on the bone behind the ear and bypasses the outer and middle ear and goes straight to the inner ear. I was so excited to be able to finally talk to her and know she was hearing me even if it was only for a short time while we were there. What I didn’t know was while I was there the audiologist was going to tell me that our insurance most likely wouldn’t cover the hearing aid and that they were TEN THOUSAND DOLLARS and just like that slowly my hopes of her hearing soon in BOTH ears were crushed. But I still had that little bit of hope that she could maybe possibly hear in her right ear and so the guessing game continued until her meeting with the ENT the following Thursday.

The night of June 29th I came home and was telling my husband all about the hearing aid appointment. We had dinner and I was looking forward to the weekend with Saturday dance classes with Rew and all of the sudden, I look at Goldy and she’s breathing weird again… Her entire belly is popping in and out and you can see all of her ribs, her throat caves in as she breathes faster and faster and then stops and doesn’t breathe for a few seconds. So once again we head back up to Primary Childrens for our overnight stay at the ER. Luckily my parents were in town and were able to watch Rew.

On the way to the ER I tried joking with Kylan that we were headed to check into our hotel for the weekend because this time we came prepared with our overnight bags assuming they were going to admit us again and sure enough that’s exactly what they did. This time we were there for what seemed like days. Not sure if it was because I was so exhausted and couldn’t sleep at all or because the room we were in didn’t have a window and felt like a jail cell. Either way we checked into the ER around 10PM on Friday and didn’t leave till around 5PM the next day.

The entire time we just sat in that room with Goldy hooked up to the monitor and watched her breathing patterns. Her respiratory rate would be around a normal 40ish and then jump up to 80 and 90 and then come back down to 20 and then she’d stop breathing for a few seconds and it was pure torture. The nurses couldn’t really give us any answers. They would say things like “well yeah, that’s not normal, but it could be for her condition, we will just have to wait for the cardiologist.” Then they told us the cardiologist would be there around 11:30AM so we eagerly awaited their arrival and 12PM, 1PM, 2PM, AND 3PM slowly ticked by till they finally showed up around 4PM. When they arrived they told us that the medication was not working as well as they had hoped and that they would be doing heart surgery on Goldy as soon as they could fit her in. So we left with instructions to follow up at the first of the week.

Monday July 2nd I got a call from the cardiology scheduler informing me the soonest my surgeon could meet with us was the following Tuesday at 10am. This wasn’t what I was hoping for but was understandable considering her condition isn’t the most common and out of the 40+ cardiology doctors at Primary Childrens only 2 do the surgery that she needs. So here we were again playing the waiting game.

Tuesday July 3rd was another day we were waiting for. We finally got to meet with her plastic surgeon and find out when and how she could get surgery to fix the cosmetics of her ears. That was by far the quickest appointment we had been to out of all of them. The doctor sat down with us looked at both of her ears and said she couldn’t have the actual plastic surgery to fix the ears until she was 5 or 6 because they had to take the cartilage they need for it from her ribs and so she has to be big enough to withstand that type of trauma and in the meanwhile he referred us to his partner to get ear molding which he said would need to be done ASAP or it wouldn’t work.

So we walked out of the door of that appointment and I immediately called the direct scheduler for the other doctor and told her we needed to be seen ASAP. After about 20 minutes on the phone going back and forth with different scheduling options or more so the lack thereof she asked “Are you still at the hospital?” We were just around the corner at that point and she said “if you can make it in in 15 minutes he can get them done now.” So after loading two kids in and out of the car and re-parking we were racing to get to his clinic before they closed for the holiday.

I had no clue what ear molding was. I thought it was going to be some custom fit high tech thing that would at least save us from having surgery on one ear. Little did I know that it was just a tiny piece of sea foam green silicone shaped like an ear crease. So twice a day I spend about 20 minutes using those skills I gained when I was a kid playing operation against my little brothers and try to get Goldy to hold still while I position them just perfectly and move her hair and cut the tape small enough to fit her tiny ears. We didn’t get a time frame on just how long she’s going to be wearing them but we don’t follow up with that doctor for another 8 weeks so it will be at least that long. However I’m starting to get better at them, I’ve learned if I put a bow on top of my taping masterpiece it’s harder for her to rub them off so now she wears a bow all day, everyday.

Thursday July 5th was a day I’ll never forget. It was finally our day full of answers, or at least that’s what I thought. That morning I woke up excited and hopeful that we would go to that appointment and they would say she could hear in her right ear, we would get info for a future surgery on her left ear, and the ENT would give the audiologist the go ahead on ordering our single BAHA and then somehow we could fight with insurance and get them to cover it and finally get back to reality. That wasn’t the way it went at all. The entire day was a mess.

First, I had to meet with her therapist from DDI. She arrived around 11AM and went over all of her upcoming milestones with me. The entire appointment I couldn’t help but remember having the same emotions I had two years prior because she is the exact same therapist we had for Rewsey. I sat there asking the same questions like “When is she supposed to start smiling?” and “How many minutes of tummy time should we do?” She answered me with things I didn’t even think to consider like, “If she’s going to be getting heart surgery we may want to hold off on the tummy time while that’s going on so we don’t put any added stress on her heart and her incisions.” and “Smiling is a normal response she should have to the sound of your voice around about 3 months” meanwhile all I could think is “Yeah, that’s only going to happen if she can actually hear me.”

Then after that was over I started going through my normal routine until I realized I completely forgot that my nanny got off early and I couldn’t bring Rew to the ENT appointment with me so at 1PM I called and asked my mom to drop what she was doing and drive down to watch her. My mom got to our house about 15 minutes before the appointment and I rushed straight out the door. After getting to the hospital and getting checked into the correct place I went to call Kylan to tell him what room number we were in and realized I was in such a rush I forgot my phone so I had to borrow their phone to let him know where we were. After finally getting settled in and filling out all of their paperwork for what felt like the millionth time this month we sat and waited for our doctor.

Our doctor came in with about three other people and immediately sat down and started drawing us a diagram with different surgery options. He told us all of the surgeries start taking place at around 6 years old. The options for the appearance of the ear is to get plastic surgery where they graft cartilage from her ribs, or get a prosthetic ear that she clips on and off. Kylan and I could not believe that in this day and age people were still getting prosthetic ears?! Who would want to clip their ear off and on everyday?! Little did we know that with microtia often the ears are so deformed that they have to cut off their ear entirely and start from scratch which often times means at least 3 surgeries just to fix the outer cosmetic appearance to give her a “normal ear”. Then as far as the surgeries required to get her to hear they can range from another 3 to 5 surgeries to build a normal canal and that is only possible if there is the appropriate bones and structure in the middle ear which we won’t know until they do a CT scan when she’s about 5. If she does have what it takes to do that surgery they will actually have to drill through her skull to give her an ear canal and then build and attach whatever needs be. If she doesn’t have the appropriate anatomy in her middle ear she won’t be a candidate for that surgery and will never hear “normally” or in other words with out a hearing aid and at that point she will have to have a BAHA implanted into her head.

When he was telling us all of this my heart was slowly sinking but I was still hopeful for the right ear. He asked me to put Goldy up on his table to check it out and first he pulled up his microscope, then another even bigger microscope, and then started asking the nurse for a long thin metal tool and had me hold Goldy tight while she cried and squirmed and he poked around in her ear. One after another he kept asking for a smaller size tool until finally he just asked for the smallest size. With the smallest tool he was barely able to see into her ear canal to what he thought was possibly an ear drum but the moment he pulled his tool out of her ear the canal would close entirely. He said “she has a collapsed ear canal and with the extent of it I’d say it’s giving her a 50-60 decibel loss”.

That’s when I felt the lump in my throat. I knew the answer but I had to hear it from him to believe it. So I asked “she’s not hearing me at all then?” He responded and told us that she may hear extremely loud noises like a doorbell ring or a loud dog barking but to her the doorbell would sound like a wind chime and a dog barking next to her would sound like a dog down the street and that no she couldn’t hear me speaking to her. I was crushed. Even in the womb she could hear. Don’t ask me to explain the science of it but somehow in the womb she could hear through the vibrations or something like that and now for the past month she was basically in complete silence. I continued asking question like how we were supposed to get the BAHA head band and if my type of insurance ever covered them to which he told me in all the years of doing this he had never seen BCBS cover them and that we should look at the state option which I had already looked into and was not a candidate for because we made too much.

That night I couldn’t stop crying. I was trying my best to keep it together around Rew but she just kept coming up to me and saying “you sad mom” “mom is sad” which only made it worse. I just couldn’t accept the idea of Goldy not hearing till she was 6. Don’t get me wrong, I plan on learning sign language and teaching her sign language but there was no way I was going to let her live in silence till she was six years old and let her get behind developmentally. So I started googling. I searched for state grants, I searched for loans, I read more on her condition, I read other kiddos stories, mostly I read through more eligibility lists than I can count and there was always something that made us ineligible. We made too much, we didn’t live in the right state, we had a private insurance, with parents were working, she was too young, she didn’t have a syndrome, the list goes on.

There were a few national grant programs that I thought could be a possibility’s so I applied for them even anyways but still haven’t heard anything back.

Around 5AM after staying up all night with no luck in my searches I decided to listen to a few of my friends who said they wanted to donate and help and I made a go fund me. By the time I woke up at 9AM it had already raised over $1,000 and I couldn’t help but cry. I couldn’t believe that people who have their own lives and own bills would donate to a little baby girl that they don’t even know. Then as the day went on it continued to grow and now in just 1 full day we are over $5,000 and I really have no clue how I will ever repay everyone. I’m beyond grateful! There are so many people who donated -friends, family, family friends, old friends that I haven’t even talked to since I went to middle school or high school with them, there are people that work with my parents, there are friends and family of Kylan all the way in NYC, people who I worked with in NYC, my clients from The Beautiful Brows, some names I didn’t even recognize and I’m assuming they’re just friends of friends. Someone who has a child with microtia even reached out and donated just because they know how it is to feel like your child will never be able to hear you tell them you love them. Not to mention the large anonymous donation who I will never be able to thank because I have no clue who they are. I will be forever thankful to all of you.

My hope is that one way or another, we will be able to come up with the other 15k we need to make this happen and that when we do and Goldy can hear over the next few years, she will be able to hear me tell her all of the people who donated to give her the gift of hearing. The ability to listen to music, the ability to call her grandma on FaceTime, the ability to listen to the ocean when she goes to the beach and the ability to hear her family tell her they love her. The things that most of us just take for granted on a daily basis and my main hope is that we can raise the money fast enough that she has no delay in her learning so not only will she be able to hear all of these beautiful things but that she will be able to learn to speak orally in addition to sign language and she will be able to tell all of you thank you herself.

Thank you all again for your love and continued support!

XO The Reeses