Goldy is two weeks old today! The past two weeks have been filled with lots of love, laughter, tears and daily trips to Primary Children’s Hospital or to our pediatrician’s office… When it comes to not knowing the conditions of your sweet innocent little babe, 14 days can seem like an eternity. Especially when people are asking questions that you do not know the answers to. Finally we have some answers. We don’t have them all but we are happy and hopeful with what we do know and we’re grateful for modern medicine, great doctors, and all of your love and support.
When I was a few months pregnant with Goldy I had genetic testing done to see what I was a carrier of. After Rewseys unique conditions, I figured it would be good to get all the info I could. A few weeks after sending in blood they found that I was an autosomal recessive carrier of a mutated gene related to different levels of deafness. However with it being autosomal the baby would have to have two copies of the gene meaning Kylan and I would both have to have it in order for it to be passed to her. So we sorta coped with the idea of the possibility and then just brushed it off because we figured the odds of 1 in 2000 were rare and it wouldn’t happen to us… Fast forward to June 9th 2018! We welcomed the most beautiful baby girl into the world. Goldy Louise Reese! After being in awe by all of her beauty and sweet spirit we noticed that her ears were two different shapes. That is when the worry started to sneak in on me but I was too busy kissing her sweet cheeks to think too much about it.
The next day the pediatric team stopped by our room to check her out and confirmed that her left ear canal was entirely closed and then they called for a specialist from primary children’s to come meet with us. We waited on the ENT specialist from the children’s hospital to stop by for a few hours but it felt like an eternity. All I could think was that she was fully deaf in that ear just like my father and all I wanted were answers. Could she hear? Was her other ear ok? Would she ever be able to hear? Finally the specialist arrived and informed us that the condition she had was called Microtia Atresia and her case was “mild”. Of course I couldn’t help but ask what “severe” cases were like to which he informed me some people just had no ear at all, and immediately I felt blessed. He told us not to worry that most children could have “normal” ears with plastic surgery but that those operations don’t normally take place till kids are school aged. Then he referred us to get set up with a few different specialists at the children’s hospital and sent us to the nursery for the routine hearing test. That test was like going into one of those pencil only tests with no pencil… She had no ear to stick the headphone into on her left side and her right side ear canal was abnormally small so without even being tested she failed entirely. So we left the hospital on Sunday with our sweet little Goldy not knowing whether she could hear or not.
Over the next few days we tried different things like vacuuming or ringing the doorbell to see if it would wake her up while napping. Tried speaking closer to her open ear to see if she’d respond, and tried speaking at different pitches but still couldn’t tell if she could hear or not. After 5 days of not knowing if she could hear or would ever be able to hear, we got in to the Audiologist at the U for an ABR. The audiologist routinely tried doing the same test as the nursery to start out but ran into the same issues so quickly moved onto the next testing portion that was done by bone conduction. Finally we had some success! I could see it on her face as the brain waves showed up across the screen, she could hear! For the next hour I eagerly watched her expressions as her face would change and she’d make little noises as the audiologist tested different pitches. Immediately I felt hopeful.
We still left the appointment that Friday not knowing if she could hear us but the bone conduction ABR gave us just enough sugar to make lemonade with the lemons we had been given. They told us her inner ears were completely normal and with a BAHA “bone anchored hearing device” (a device that skips the outer and middle ear and goes straight to the inner ear) she would be able to hear! Hallelujah! We were over joyed to know that with the help of hearing aids she will be able to hear until she is old enough to undergo the surgeries needed to possibly hear without the hearing aids. We still have ALOT of appointments and a long way to go but we have our first hearing aid fitting next week and if her head is big enough we will be able to get her hearing aid headband ordered and get her hearing all of our “I love you’s” soon enough.
In the meanwhile we had a few other more common things we were dealing with like a broken collar bone and jaundice so those were keeping us with daily trips to the children’s hospital to give blood and get x-rayed. At almost two weeks we went for our well check to see how those things were doing. The NP said that her jaundice was slowly going away and her collar bone looked normal but the murmur in her heart did not sound normal at all… So what we thought was going to be a small quick doctors visit to check up turned into an immediate trip to Primary Children’s Hospital for a chest X-ray. When we arrived the doctor who ordered the X-ray called my cell and asked us to stay until after she was able to look at the X-ray and she marked the order as STAT. At this point I was starting to feel anxious but was doing my best to remain calm. I went in with both girls, grabbed one of their wagons and headed to imaging. After giving the front desk the orders marked as stat we were in the X-ray room in minutes and by the time I was able to get back to the waiting room I was already getting a call from the doctor. The call went a little something like this “your daughters heart is enlarged and you need to take her straight to the ER for further testing because typically this type of swelling is caused by a hole in the heart and it can escalate to heart failure.” I had kept it together for the past two weeks but this was my breaking point. I kept it together through all of the tests, appointments, scheduling future appointments, changing 3 girls diapers and adjusting to two beautiful babes but I couldn’t take it anymore. I couldn’t even explain to Kylan what the doctor had just said. I just stood up and carried her tiny body in my arms down the long hall and checked her into the ER.
When we got there it was one test and blood draw after the other. They drew blood, gave her an IV, did an EKG, and then an echocardiogram. When we checked in it was around 6pm and by the time they finished her last test it was almost midnight. By now we had done every possible thing we could think of to entertain Rew and all of our phones were on 1%. Finally the cardiologist came in and told us that he discovered her ductus arteriosus that normally closes on babies by 2 days was still open and causing her heart to over work and retain fluid in the sack around her heart lungs making it hard for her to breathe. After further discussion he decided to admit us overnight and administer a medication called Lasix a diuretic that helped to drain the fluid from her chest and help her to breathe.
After dropping Rew off at home to our nanny Piper and getting checked into our room on the surgical unit they gave her the first dose of it around 3am and finally we were able to sleep. Our sleep didn’t last long because at 5am I woke up to her crying hysterically and completely soaking wet. She had peed through her diaper and swaddle, and the entire crib sheet was soaked. When they said it was supposed to make her pee I figured she’d wake up with a full diaper in the morning. I had no clue she’d wake up in a puddle two hours later and neither did the doctors.
When the cardiology team rounded the next morning they said she “looked surprisingly well, and maybe wouldn’t need the medication after all” they said that most babes with her condition usually have a hard time gaining weight and they were blown away that she had gained 22oz in the past 10 days. I knew something was wrong and tried to tell them about the puddle I found her in that morning. They sort of just shrugged it off as if I was exaggerating and said it was normal. Finally after repeating myself a few times about the amount of pee I found her in I insisted that they weigh her. They weighed her and converted it to oz’s and finally realized that I was not exaggerating at all. Over night she had lost 9oz’s, which may not seem like a lot, but it’d be like if an adult who weighed 150lbs peed so much that they woke up and weighed 141lbs. After all was said and done they prescribed lasix to Goldy once a day until she is old enough and big enough to get heart surgery or until miraculously her valve closes on its own which at this point the odds of that happening are 1 in 1000. So a lot is still unknown but one thing I know for sure is this girl has a heart of gold.
With all of this being said we’re just doing the best we can. I’m extremely grateful for modern medicine and modern technology. I’m grateful for Primary Children’s Hospital and the amazing doctors they have there. They already changed one of my daughters lives forever in the best way possible and now I can’t wait to see what they will do for Goldy. Sometimes you just have to make lemonade out of lemons and that’s what we’re doing. All positive vibes and prayers welcomed. Thanks again for all of the love and support.
XO The Reese’s