Day 18-20 Our Bubble Burst

Friday- Sunday July 29-31st

Corinne had a successful flight back from Little Rock to Fayetteville. Ryan and I were able to watch her fly in and stay with her immediately as they wheeled her through the hospital to the NICU. When we arrived to the NICU Corinne’s Neonatologist and NICU nurses were waiting for us and had Corinne’s spot all set up. The doctor explained to us that hospital protocol was to put Corinne in isolation since she transferred from another hospital and could have a staph infection. So throughout the weekend she would need to have little visitors and when we were with her we were dressed in plastic gowns and gloves. During the first few hours at Washington Regional Corinne started having seizures, at this point in her life she had only had three. We knew a progression of Zellweger’s included increase in seizure. Throughout the weekend Corinne had about 10 seizures. The time I spent with her was very difficult because I was covered in this plastic outfit that made you sweat so badly, so I could only sit by her side for a few hours before I became drenched with sweat. Also I felt it was important for me to let the nurses spend time with her and get to know her and I thought it would be helpful if I wasn’t “hovering”  As the weekend went on Corinne was having more seizures, she looked very swollen, and I started regretting the transfer back because maybe it was too hard for her. The doctor told us that we just need to give her time to rest and for them to get to know her and we would meet on Monday to discuss options for Corinne.

Throughout this process we talk about “our bubble bursting”

First - was that we didn’t take a healthy baby home on July 13.

Second -That Corinne’s heart and brain were not healthy and that we would have a long medical road ahead of us to understand her health situation

Third - That Corinne did have Zellweger’s and a very short life expectancy

Forth - Leaving Little Rock, this was probably the biggest bubble burst for me. In Little Rock our total focus was Corinne. I didn’t have to worry about running into people who knew our story or didn’t but knew last time they had seen me I was pregnant, taking care of Evan, grocery shopping, laundry, or getting my oil changes in my car because my light had been on for over a week 

Then after a tough weekend mentally and emotionally I went up Sunday night to see Corinne. I broke down, she had several seizures while I was there and she looked uncomfortable. I looked around the NICU and all the babies in there were relatively healthy and would be going home in a few days to their families. Corinne was hooked up to several machines that were beeping constantly, she was in isolation due to her staff infection, she had so many leads and lines attached to her body it would take me several minutes to untangle all of them. At Children's there were sick children all around you, I think Corinne was the only terminal infant there but babies on ventilators, going to surgery, recovering from surgery, meeting with doctors was "normal".
It hit me. My daughter was dying!! I left the hospital and broke down outside. I called me sister I was crying so hard I couldn’t even see to drive. Sarah as always listened and made me feel better. She told me I was her mother and I knew what was best for her. She said that as a mother and a doctor she couldn’t say what she would do if in my position. I was feeling guilt that I had been holding onto something that wasn’t there or was I letting go too soon? I didn’t know, but it hit me and it hit me hard Corinne was dying.

Day 17- "you can never predict"

July 28 Thursday
I want to preface this before I write the below. Corinne’s doctors and nurses at Mercy and Arkansas Children’s Hospital were and are amazing!! Corinne’s condition was very complex and as much as I thought I understood I am sure on some level I didn’t. Also as much as doctors deal with this level of illness and death it is very hard for someone to talk to a mother about their dying daughter. As I told my sister several times I had “ grown adult men/women who do this for a living stumbling over their words and not able to make eye contact with me”….So as I was saying we were meeting with the “team” of doctors which consisted of a Neurologist, Cardiologist, Geneticist and Neonatologist. This meeting was one of several at this point whether it was with the “team” or a specialist at Corinne’s bedside where no matter what question we asked we got basically the same answer “ we can never predict what Corinne or a Zellweger’s baby can do, babies can be amazing” . We felt so frustrated, we knew that our daughter had two holes in her heart, we knew her brain did not fully develop, we knew it would be hard to ever get Corinne to successfully breath off the vent… but why did we always feel like there was an “elephant” in the room. The thing the doctors would never say to us.. “Your daughter is dying and her days are x amount”……no they always said “we can never predict…”
So Thursday we met with the team of doctors. Each specialist went over Corinne’s case. For the first time I learned that Corinne’s heart failure “was rare to see in a child less than 2 weeks of age” and he confirmed a heart surgery was not an option for Corinne in the days/weeks to come. We asked the geneticist to “scale Corinne’s condition” from 1-10. (1 being worst case scenario 10 being best) he said she was under a 5.
There was no more “treatments” or “tests” to be done on Corinne. Up to this point we let the doctors do what they were highly trained and schooled to do and we waited quietly in the wings for results and answers to Corinne’s health. If we were ever concerned about treatment or care we asked my sister Sarah who we trusted and admired. She is an amazing doctor, sister, and mother! We felt as this point in the process is was time for Ryan and me to make the decisions. We felt confident that Corinne had the best care and medical attention possible. Now we were ready to love her and to get to know her… So we asked the question that had been on my mind for days.. “Can we get Corinne back to NWA’’…. In the matter of seconds all the doctors agreed “YES”! Corinne could be back transported to Washington Regional Hospital in Fayetteville, AR ( 10 miles from our house), there was a Neonatologist who worked there that recently transferred from Children’s that was very qualified to care for Corinne, there were satellite offices a few miles from our house that if Corinne needed more specialized care doctors from Children’s had office hours there, if Corinne ever became strong enough for a heart surgery we could always come back to Children’s, and lastly there was a great Hospice facility there that could help us when Corinne’s time came.
It was all so bitter sweet, but I focused on the sweet. We were taking Corinne back to NWA, HOME!! I was soooo excited!!! I called my sister right away, I texted our closest friends, I found my favorite nurse ( Lucinda) and told them all my great news!!!
Within hours a doctor came and told me Corinne’s flight back home had been scheduled for 8am the next morning, Washington Regional was expecting us, and unless an emergency situation came up for the Angel One helicopter team Corinne would be home in the morning! We were so excited we had no idea our lives would change so quickly!.....

Day 15-16 Corinne diagnosed with Zellweger's

July 26-27th Tuesday- Wednesday
The results were in the “building” and we were just waiting on the Geneticist to let us know when he could review them with us. At this point I had “googled” Zellwegers and got very little information. I know I have said that Zellwegers is “rare” but I don’t even think at this point I realized how rare it was. It wasn’t until just recently that I found out that many of the doctors that had treated Corinne didn’t know what Zellweger’s was.. they knew it sounded familiar and was a genetic disorder but they didn’t know the specifics, but let me also say I found out during this process that there are literally hundreds to a thousand genetic disorders. So during my google search I read things that implied Evan could, down the road, have health problems that were terminal, that this could affect our “future children”, this could not affect Evan but he could have a baby that had Zellwegers. Again I broke down. Could my entire family be taken away from me?? So on Tuesday evening we met with the Geneticist. He confirmed Corinne had Zellweger’s and considering her current condition and medical problems he didn’t think she would have a long life expectancy, but you can never predict. He told me that it was not accurate Evan could down the road have terminal ( or any for that matter) health problems related to Zellwegers, but he did confirm that Evan has a 66% chance of passing this gene along to his children and that this was a genetic disorder Ryan and I passed on to Corinne and there is a 1 in 4 chance our children could have Zellweger’s. In many ways we were relieved to have answers. We asked doctors if they felt like we would have a few more weeks or months still at Children’s. They said yes unless Corinne was to get worse and pass away. So Ryan and I found a furnished apartment, made plans for Ryan to start commuting back and forth between NWA and Little Rock so he could return to work, hired a babysitting service to help with Evan while I was at the hospital. We thought we had it all figured out. I was excited to have Evan with me! And to start a "normal" life with our family of four!

Day 12-14 Visiting Evan

July 23-25 Saturday- Monday.
Corinne stayed relatively stable for her the next few days. Ryan and I were able to leave for 24hrs to drive home and see Evan. It was only the second time we had seen him. We thought it would be “easy” going home and seeing him, Corinne’s room, random people, etc. It wasn’t. It was devastating! Spending time with Evan was amazing. I fall more and more in love and in awe with him every day. While we were home we worked out with Ryan’s parents that Cheryl and my mom would stay with Evan for the next week. I set play dates up with my friends to give Cheryl breaks. But we realized that we needed to start game planning options on how to care for Evan and Ryan would have to return to work one day…. Little Rock is 3.5 hours from our house, we felt lost with trying to figure out how I could care for both children and how Ryan would have to start working again. Ryan’s parents had left Tennessee and had been helping us since the weekend after Corinne was born, but that couldn’t be the “forever” plan. I missed Evan, I needed to be a Mother to him just as much as I did for Corinne. Threw out this process I was overwhelmed with how to communicate with everyone. I needed people to know what we were going through so maybe someone could help in some way. But I was too overwhelmed to even understand what they could help with. Corinne was sick no one could fix that, no one could care for Evan full time. I didn’t care if my flowers died, my dog got walked, our mail got picked up, what I would eat that day, what cheaper hotel we were moving to so we could save money. It was all so much! On Monday after we returned from seeing Evan we heard the “genetic testing was in the building” but it could be 1-2days until the report got read and filed by the correct people. That was the only day I thought I was “going to lose it on doctor” but I thankfully didn’t and went back to our hotel room that night….and hoped by Tuesday we would “know”

Day 11 - C put on a ventilator

July 22, Friday
At 4am in the morning Corinne’s doctor called to tell me that they had to put her on a ventilator. I immediately went up to the hospital. It was all so bitter sweet.. Corinne looked more peaceful and you could tell it was easier for her to breath ( the night before her lungs and heart were working so hard you could see her chest and stomach compressing with every breath).. and the bitter being that Corinne could never successfully breathe on her own. Most Zellwegers baby stop breathing because their brain “forgets” to tell them to and then coupled with her heart failure and the fluid building up in her lungs the chance that she could breathe on her own efficiently were small. We had a meeting with the “team” already schedule that afternoon, so I headed back to our hotel to shower, eat, and write my notes for the meeting in a few hours. That afternoon we meet with a Neurologist, Cardiologist, and Neonatologist. The Neuro team felt that based of Corinne’s MRI she had Zellwegers, but without the Long Chain Fatty Acid test that the Geneticist was running she could not speculate. Cardio team told us there were more medicines we could give Corinne if her heart failure increased but they did not feel like her chances of recovering from a heart surgery were good right now. We told the team that we did not want to take any extreme painfully measure in treating Corinne until we found out the Genetic tests and we would like to get her stable enough to take her back to NWA. They team all agreed those were the 2 best things to work towards, but we didn’t know if it would be days, weeks, or months until we could get home… because as the doctors always said “ you can never predict, only time will tell”. That day Corinne was having a hard time maintaining her own body temperature and the doctor wanted to put her in an isolate box which is a plastic box with arm holes. This would make it difficult for Ryan and me to touch her. Our nurse suggested that we dress her and put her in a blanket and keep her in the open bed, the doctor agreed! That day we put Corinne in her “little sister” onsie and wrapped her in her swaddle blanket from Aunty Sarah. She looked so adorable I think I took 30 pictures of her that day.

Day 9-10 Alone in Little Rock

July 20-21 Wednesday-Thursday
Our family was gone. It was just Ryan, Corinne, and myself.. Every day was a waiting game for the next test results. The big result we were waiting for was the genetic and metabolic testing (Long Chain Fatty Acid test) that would confirm or rule out if Corinne had Zellweger’s.. It could be any day or another week until the results came back. During that time we were trying to keep Corinne stable so we wouldn’t have to make any drastic decisions…. If Corinne needed assistance breathing and needed to be put on a ventilator there was some concerns she wouldn’t be able to ever get off of it. Children cannot leave the hospital on a ventilator. There were concerns that Corinne could start to have heart failure and we would have to make a decision if we wanted to do an open heart surgery to repair the holes. If Corinne had Zellweger’s we were not prepared to put her through something so evasive that could potentially only give us weeks or months more with her. But if Corinne’s genetic disorder gave her a longer life expectancy then a heart surgery may be worth it. We just hoped we wouldn’t have to make any decision like that until genetic results came back. Corinne at this point had a tube going up her nose delivering her oxygen, she had an arterial line in her belly button so they could draw blood from her without having to stick her with a needle every time, she had a picc line in her foot which went up around her heart to deliver her medicines, nutrients, and lipids, she had a pulse ox on her foot which would tell you the amount of oxygen in her blood and then she had leads on her stomach that read her heart rate and respiratory rate. All of these things made it difficult and sometimes impossible to hold her. Corinne was 8 days old and I had only held her 3 times totaling about 30minutes. Ryan had held her twice. The ache I felt to hold her was so strong some times and then I would focus on what I could do. I could touch her and rub her feet and hands, give her kisses, change her diaper, and even bath her. Every morning I would come in and write down all the medicines she received, their amounts, and when/how they were given. Every morning she had an x-ray done of her heart and lungs to see if fluid had started to build up which could lead to her heart failure, I would write down whatever the cardio team said. Every few hours she was getting blood drawn and tested which would tell us her her pco2 and ph levels (if they got to high we would have to put her on a ventilator). I was almost obsessed with knowing what every little thing said and meant. Every day the team of doctors would meet at Corinne’s bedside to discuss where she was and what needed to be done. If Ryan and I were sitting bedside they would review her case with us.. so Ryan and I would just linger for hours hoping we could get information as to what the next steps were and how she was truly doing medically. We were always afraid to leave and we would miss out on updates. We understood the doctors had lots of patients and they didn’t always have time to meet with parents to give updates. So we always wanted to be readily available. Then at night I would call my sister Sarah and go over Corinne’s day medically and emotionally. Sarah would help explain things to me and offer suggestions on questions I should ask. I was so overwhelmed by all the information to learn but I was determined to know it! During our meeting with the team of doctors on Thursday they decided to take out her arterial line because they weren’t drawing blood as often and to remove the tube that ran down her nose and delivered oxygen and replace it with a nasal cannula ( just a t bar that stuck in her nose and delivered a flow of oxygen it was less evasive). By removing these two things it would make it easier for us to hold her. We were so excited! But since it would still be a difficult process to hold her and potentially taxing on Corinne we decided we would go grab lunch and then come back so we would be prepared to hold her for a long period of time ( over an hour!) When I returned Corinne was having a seizure, it lasted for over 3 hours, towards the end she stopped breathing and they had to bag her to get her breathing again. That night we knew there was a big chance Corinne would be put a ventilator and her chances of getting off would be slim. It also would make it so we couldn’t hold her, I never held her after lunch.

Day 3-8 Toughest Days.....

Thursday-Tuesday July 14-19 The next 6 days…I have a hard time even putting into words mostly because of the complexity and seriousness of what went on. At this point Ryan and I took our “turns” falling apart, luckily most were not at the same time. My sister Sarah was at my side every time we talked to a doctor explaining everything to me. My mom and sisters helped me get organized with note books and folders. I started writing everything down that was said to me and then rewriting it with my sisters so I could understand it. EVERY day things were changing and prognoses were getting more severe. We were meeting with Geneticist, Cardiologist, Neurologist, and Neonatologist. I will break it down by doctor….
Geneticist was taking tests that would be back in a few days, 10-14days, and 4-6wks. He even said to us “ we could be home with Corinne before some of the tests were back”. The first test that came back confirmed our baby girl didn’t have Trisomy’s 13, 18, or 21 (extra chromosome, shorten life expectancy) we celebrated that night with Champagne!

Cardiology-The ultra sounds/echo of Corinne’s heart at first showed an extra artery (PDA) that should close off after birth within 24-48hrs and a small hole in her lower left heart chamber (VSD). If that artery (PDA) did not close off on her own a relatively simple not evasive surgery could be down to fix it. Initially the hole in her heart (VSD) could be something looked at months to possibly years down the road. Within days we found out Corinne’s PDA closed off ( small win!) BUT the small hole (VSD) that she had was not small but extremely large and there was more than one, the other was called an ASD. At first there were hopes of an open heart surgery to repair the VSD and ASD, but as time went on and more tests came back and Corinne’s “symptoms” got worse the doctor expressed to us that he did not feel like Corinne was a successful candidate for surgery.

The neurologist was doing MRI’s, Ultrasounds and EEG’s on Corinne… Things were not coming back in our favor. The EEG’s were not confirming any seizures but they only look at the time during which the test was being ran. However the 2nd or 3rd MRI that came back on Tuesday July 19th changed everything for me… Corinne’s MRI showed “ severe abnormalities” in Corinne’s brain ( polymicrogyria- “many”poly “small”micoro”folds”gyria), it also showed several cysts. Based off the MRI her diagnoses looked to be Zellweger’s but we would have to wait for the genetic test to come back to confirm. The doctor told me life expectancy was less than a year. This is when reality set in for me. Our daughter would never lead a “normal” or “healthy” life. Again I broke down.
Evan came down with Ryan's parents on the 19th to Children's Hospital to visit Corinne and spend time with us (this would be the first time we saw him since we arrived to Children's and for him to meet Corinne), that same day we were told the results of the MRI that lead the team of doctors to think Corinne had Zellweger's. We focused our time with Evan that day knowing we had two children that needed us to be strong parents for them. My sister Sarah also left that day to return to Ohio.. It would just be Ryan and I in the days to come.....

Day 2 -Arrive at Arkansas Children's Hospital

Wednesday July 13, 2011 by 5am I was awake and asking the nurse to find the doctor so we could get my discharge going. By 8am I was standing at my front door in my hospital gown that was open in the back ringing my door bell. My mom thought I had escaped from the Hospital. I showered, threw some very random clothes in a bag, kissed on Evan for a few minutes, and headed out of town. The next 24hours were the hardest thing I have gone through so far in my life (writing this on August 1, 2011). During our car ride I had several conversations with Ryan who was meeting with doctors. The information he was getting was very complex and the information I was getting was very much jumbled because Ryan was so overwhelmed with information. He said something about Trisomy 13 or 18… I called my sister Sarah.. she pulled up her medical website and started reading to me. My world fell out from underneath me. I heard things “life expectancy of 1 week to a year”, “ cardiac defects”. My sisters who are both in the medical profession instantly realized the seriousness of this and Rachel who is in California got a red eye into Little Rock arriving Thursday morning and Sarah got a flight arriving that night from Ohio. The next few hours really are a blur. I arrived at the hospital and after meeting with doctors and being told shocking news. I feel apart crying on Sarah T’s shoulder. Everything they were saying made no sense to me on so many levels. I looked at Corinne and she looked so perfect on the outside how could so many things internally be wrong with her. I would like to say I am a relatively smart person and I couldn’t even comprehend the things that were being said to me. The next few days my sisters would be my life line to understand what was going on. All I remember thinking is there is no way I would have been able to make it through the first few days if it wasn’t for Robin, Jeff and Sarah T, my sisters Sarah and Rachel, and Ryan. And of course my Mom who was caring for Evan and Ryan’s parents Bob and Cheryl who were on their way to care for Evan. I remember I was nursing and I wanted to get to a hotel so I could try and pump (I hadn’t gotten my milk in yet). My sister Sarah’s flight got delayed/cancelled and she ended driving from Memphis to Little Rock with some strangers. I “slept”, pumped, cried, and fell apart for the next few hours…

Day 1-Corinne is here!

Tuesday July 12, 2011 we arrived at the hospital (Mercy in Rogers) at 6am, Pitocin by 7am, painful contractions by 8am, epidermal by 9am, bliss by 9:30am ( except for on my right side that didn’t take fully to the epidermal), lunch with Evan at 12pm ( menu: ice chips and a few bites of Evan’s chicken), 1pm I felt like I needed to push, 1:15pm pushing, and by 1:27pm our beautiful baby girl Corinne Sophia Moll was born weighing 7lbs 6oz and 20 inches long. My labor was awesome, I kept on saying that it was a form of torture to make a women go through labor without being induced. I went through 7 hours of level 10 painful contractions with Evan and only like a level 6 painful contractions with Corinne for 45minutes!
The minute our perfect baby girl was born our lives changed forever… Corinne immediately wasn’t breathing and the doctor left me to go work on her. She was bagged because she wasn’t breathing and they started chest compressions, within minutes two NICU nurses, a pediatrician, and a respiratory doctor were in our room working on getting Corinne breathing and her heart beating. After about 10 minutes they had her stable and I got to hold her for the first time, which only last about 1 minute because I could tell she didn’t “ look good” so I handed her to Ryan who put her in her bed and the nurses took her to the NICU for evaluation. After a few hours of waiting we finally got to go back to the NICU and see Corinne. She looked good, her eyes were open, she would flinch and whine a little when I leaned down to kiss her and my hair brushed across her face. I got to hold her for about 15 minutes and then we were told a pediatrician was going to come evaluate her and then come and talk to us around 5pm. When the pediatrician came he told us that he had 3 concerns about Corinne 1 her “tone” (movement) was low, some “distinctive” facial features, and a “hiccupy” breathing. He said we would watch her overnight and then if there were still concerns we would go the Arkansas Children’s Hospital in Little Rock in the morning. After the doctor left we were trying to be calm, but what we kept on thinking was “should we wait until the morning to go to Children’s”…. By 9pm another pediatrician was on call and he was coming to tell us that Corinne had had two seizures and that she would be immediately transferred to Children’s, but because of the bad weather conditions ( rain storm) the ambulance would have to drive from there and then back ( 7hours). Our friends Sarah, Jeff, and Robin were in the room when the news was delivered. They instantly stepped into the hall and started game planning. Robin would stay overnight with me, while Ryan and Jeff would drive to Little Rock, and then Sarah and I would leave first thing in the morning. Around 11pm the “Angel One” helicopter team was wheeling Corinne into the room for me to say goodbye, the weather had cleared and they were able to fly!! Robin and I said our goodbyes and then I tried to sleep (I am sure Robin did not sleep at all on her plastic love seat and me snoring a few feet away)

Weekend Before Corinne's Arrival

Saturday July 9, 2011 I went into major nesting mode… I had just received Corinne’s bedding the day before and spent the morning flea market shopping with Evan and my Mom for her room, I spent the afternoon decorating, I indulged some cravings (smoothies and pastries), and by 8pm I had cleaned my entire house from top to bottom. Then by 11pm I was in the hospital with, let’s just say “ flu like symptoms”. My doctor was on call that night and he really just felt like it was a stomach flu.. but I was having contractions. He felt like it was just fetal distress not labor. So he sent me home and said we could induce Tuesday morning…