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Beau's NICU Story

Monday, May 30, 2016

This probably goes into the category of one of my longest posts to date. Writing out our journey brought me healing and hope and we share with the intention of encouraging those who may read it. The images throughout this post were taken by a dear friend of our family on the morning after we had to leave Beau for the first time overnight. They are irreplaceable to us and capture so much of the emotion we were feeling. The images are precious to us!


On April 28, we went to the doctor for my 37 week appointment. We waited for my doctor and our favorite nurse popped her head in to say that I should change back from the gown into my clothes so we could get another sonogram. I quickly changed and we sat in fear and wonder of what was happening. My doctor came to tell us that when she reviewed my 36 week sonogram she saw that Beau's heart had one chamber slightly enlarged and she just wanted to double check it. We trusted her and agreed. We went to the ultrasound room and they told us that it looked like the whole right half of his heart was slightly enlarged, and that we would need to see a parental specialist. We were supposed to wait on them to tell us when my appointment was, and we were hoping for the next day. I nodded along and held it together until we got to the car and broke down into tears. We held each other and prayed that the Lord would protect our baby. We had also just seen his face for the first time, during that sonogram the technician realized he was in the perfect position for a 3D sonogram of his face. I realized in that moment how truly in love I already was.


The next morning I called the parental doctor as soon as they opened to get information about my appointment. I sobbed as they told me it would be next Wednesday, May 4. I didn't want to wait that long. My doctor, who we trust so much, told me she wasn't concerned. So we tried not to be. I tried to fill my days with things to stay busy and positive. 


Wednesday finally came and we were thankful for a 9am appointment time. They quickly got me back in the sonogram room and the specialist came in. We immediately were not fans of his demeanor. He poked the ultrasound around hard on my belly, making it really uncomfortable. Tears streamed down my face as he told us that we were looking at an irregular brain, an irregular heart, and an irregular bowel. He mentioned that usually several things like this would be united by some kind of syndrome and asked if we had done any genetic testing. We had chosen not to, as we believe that the Lord had knit this baby perfectly together in my womb, and no information from a test done at the end of my first trimester was going to change that. We were ushered into a consultation room for privacy, and both cried uncontrollable tears. They quickly told us we were booked in to see a pediatric and fetal cardiologist in Dallas that afternoon at Medical City. The appointment was at 3:30. They asked again if we had done any genetic testing because they were concerned about a syndrome. We drove home and shook with tears and fear and I've never felt more miserable in my life. I texted several close friends and talked on the phone with my friend Jackie, half of the couple that leads our home group. My mind was swimming with what if's and I didn't like any of them. 


Ben's dad met us at our house soon after we got home. He sat between us and we leaned on his chest and sobbed and he cried out to the Lord on our behalf. We ate lunch on the way to Dallas and I have never felt more panicked in my entire life. The waiting room of the cardiologist was small and there were a few patients that I couldn't make eye contact with. Sinfully I thought that I had already had my hard thing. I had already lost a baby. Why was this happening? A really sweet lady did my fetal heart echo, basically a sonogram that was only for the heart. It took about an hour. We headed back to a consultation room to wait. The whole office was straight out of the 1990s. We had to laugh at a photo of a family on the wall in which the entire family, mom and daughter included, were wearing tuxedos with red cummerbunds and bow ties. 


Dr. Kao came in and quickly explained to us that lots of babies are born with slightly enlarged hearts. She said she wasn't concerned, but that there was the possibility of a Aortic Coarctation. She said that we wouldn't be able to tell until he was born, but that she couldn't see if the aorta was wide enough to support blood flow, and that the enlargement could have been to accommodate the small vein. We asked as many questions as possible. Would this surgery be open heart? No. It was one of the least invasive heart surgeries. I was suddenly in a world where I was encouraged by hearing that the only heart issue we were looking at is a possible least invasive heart surgery. Dr. Kao said she didn't see a reason why I should deliver at Medical City, a hospital with pediatric surgeons. The hospital I had originally planned on delivering at didn't have that. She said that she really didn't believe our son had the Aortic Coarctation, and that we should continue as planned pending the results of my upcoming fetal MRI that was planned to check out the brain and the bowel. We left in good spirits. She just wanted Beau to have another heart echo in the first day or so after his birth. That evening was the monthly girls dinner that the girls in our home group have. Ben insisted that I go and meet with our friends and be encouraged by them. I have never experienced a more clear picture of community. I was greeted by a giant reversible blush and beige tote bag overflowing with goodies. Hershey's kisses. Almonds. A new journal. A card with a food gift card from each family represented in our group. A really special Matilda Jane blanket. A stuffed animal and book for Beau. Chapstick. Lots and lots and lots of goodies. We also got a bag of fun little games for Ben, and a bag filled with fruit that didn't need to be refrigerated. I was sent home with a 4 quart container of Pioneer Woman Cajun Chicken Pasta. My dear friends cried with me and rejoiced with me as I shared the results of the afternoon's test. They prayed over us, and we enjoyed a sweet night of natural fellowship, telling stories, laughing. My spirits were lifted during a dark time. 


The next day I had my 38 week appointment with my doctor. She again affirmed that she wasn't incredibly worried. We asked a lot of questions. She encouraged us. We discussed the gamble of if we should deliver at our familiar hospital with my wonderful doctor (her!) and possibly have to do an emergency transport to Dallas if Beau was born with any issues demanding surgery OR if we should deliver with a random doctor at a new hospital in Dallas that had surgical staff and not have to transport. Ben was really concerned about Beau needing to be transported before I could be discharged and having to leave me behind while he moved hospitals to watch our son fight for his life. Again, my doctor said she thought the original plan would be fine, but we felt like choosing Medical City was a better option. Before the appointment that day, we had met my sister in law, niece, and mother in law for lunch at Central Market. We ate together and I spent time playing on the playground with my niece. Time with her breathed life into me. I will never forget it. Ben wasn't super passionate about me playing on the playground at 38 weeks, but this has now become one of my most precious memories.


I went to my fetal MRI on Friday afternoon. If I hadn't been encouraged by the previous appointments, I couldn't have done it. The whole MRI process filled me with anxiety. I changed into a large maroon outfit and we joked about the Aggie colors. I went back by myself in some bright yellow socks and Ben waited in a middle zone for me. I signed consent forms and was settled with most of my body into the machine. I was told that it would take anywhere between 30 minutes and an hour depending on how active the baby was. It was during a time when Beau usually slept (yep, I could tell his schedule!) so I was confident. They told me that babies either respond to the loud radioactive waves by being really still or being really active. The lady running the MRI asked me if I wanted music and I asked for Christian music. It was long gospel choir songs on a low volume while the loud machine did it's job. I felt my belly vibrate like crazy and it filled me with anxiety. I tried to breathe but I hated every second and prayed the time away. It took about 45 minutes before I got to join Ben. His anxiety was through the roof as we waited for the doctor who would review the MRI called us back. She was a kind lady and we could tell right away from her demeanor that we weren't looking at anything horrible. She showed us our sweet boy snuggled up on the MRI images, and told us that his brain was perfect. She said she wasn't concerned about the bowel, but that a small swelling at the end of his colon could be a sign of possible anal atresia. Forgive me for being crude, but that basically means he's wouldn't have a clear anal opening. This, like the Aortic Coarctation, wouldn't be able to be determined by birth, and would involve a surgery. She wasn't concerned, like the heart issue, but we couldn't be sure. We tried to be as confident as possible as we spoke on the phone with the parental doctor, and my doctor, sharing the results with them so they could decide the next plan of action. They said I wouldn't need to plan on a c-section, like we had assumed would be a strong possibility. I would be induced so that Beau would be born in a controlled environment, at 39 weeks so that I hopefully wouldn't go into labor before we could start the plan. We discussed where I should deliver. I asked my doctor what she would do if it were her. She said she would talk to the head of the neonatal unit at the hospital about the potential implications of this issue, and let us know asap when my induction was scheduled. We heard from her Monday morning that we should plan to come in for the induction on Tuesday at 8 pm. My next blog post will be our near perfect birth story, but in the moments after Beau's birth we were able to rule out the anal atresia immediately. We praised the Lord when our sweet boy had a bowel movement moments after birth. We were able to check another thing off of the list. 


After Beau was born we met with the head of the neonatal unit. He told us that it looked like Beau had features that might mean he has some kind of genetic syndrome. They told us that he had a low hairline, a small mouth and chin, and we saw with our own eyes that the tips of his thumbs poked to the side. But in our eyes, our baby was perfect. They took him for some testing. We were told that his thumbs weren't an issue, he could still move them normally, the tips were just inverted out. This could easily be fixed by meeting with a pediatric orthopedist in a few years with a small surgery that wouldn't affect him much. Another problem crossed off the list. We believed that Beau had a low hairline because he had a lot of hair, and we didn't think his mouth was anything but perfectly created by God. We enjoyed a sweet first day of our son's life with visitors and snuggles. They told us that Beau needed to be eating more and I was confused. The nurses had been telling us that all babies are slow in starting off learning to eat, and I was trying to navigate the beginning stages of nursing. There was mention of a feeding tube, and I stopped nursing so that we could focus on having Beau drink as much of the formula as he would take. I was a confused new mama and just wanted to prove that he could eat normally like we knew he could. 

That night I heard a small wheeze in Beau's breathing. I knew that my instincts as his mama were already strong and woke Ben up to listen to what I had been monitoring for 30 or so minutes. We called our sweet nurse. She listened and said he was still moving air normally, and gave him some nose drops to help clear his congestion. 


On Friday we began preparing for discharge. Ben's mom went to get us lunch and while she was gone Ben's brother Zac popped in for a visit. While he was in the restroom, Dr. Frankfurt (the neonatal doctor) came in to give us some results. The heart echo looked like we had great fear of the Aortic Coarctation and that it would reveal itself sometime between that day (Friday) and Sunday. They would be immediately be taking our baby to the NICU. I held my baby and sobbed uncontrollably and we saw Zac return from the restroom with distress in his eyes as he listened to the doctor tell us the plan. Ben crawled in the bed with Beau and I and we sobbed. They took Beau away and we sprung to action preparing me for discharge so I could go to my baby's side. Ben helped me get dressed in the bathroom and my mother in law and brother in law packed all of our things for transport as soon as possible. We would be allowed to stay in one of the temporary stay family rooms inside of the NICU, as we were hoping to have the issue resolved by Sunday. When we saw our sweet boy in his little corner of the NICU, we sobbed. I clutched one of Beau's hospital swaddles to my chest as I cried. We had scrubbed in at the entrance to the NICU in fear. We met our first nurse, who kept calling our precious boy a "she". Did these people know our baby at all? I later realized that she was just getting confused and had to give her grace, but I hated the idea of these people caring for my child. We were told we could take care of Beau and feed him normally. 

We sobbed and held our baby and questioned God's plans. I hate that we did, but we did. We were told that we had a visitor, a friend from church who was a nurse. We weren't sure who that was, and were greeted by the daughter in law of some of Ben's parents friend from church. I had only met her once, but she worked at the hospital. She was sent to visit us directly by God. She spoke scripture and truth over us. She shared the scripture that had helped her walk through a painful loss. This was the same scripture that I clung to during our loss. She prayed over us and told us our baby would be okay. She encouraged us to get some sleep that night and let the nurses take care of our baby. We hated this but Ben kept reminding me that even though I felt great, I was healing. And I needed rest. 


In the middle of the night I woke up hysterical knowing that I needed to see Beau. I asked Ben if we could walk over to him. I tried to stand up and almost cratered. My legs felt like jelly. I went to the bathroom and feared that I was having an allergic reaction to some of my medication. My eyelids were like golfballs. Ben made me stay in the room while he checked on Beau. He returned and said that he was doing well, and that my eyes were swollen from crying. I slept another 4 hours and we got up for Beau's early morning feeding to snuggle him. 

For months I have been telling Ben and everyone in our lives that I really want to take Beau to Disney World for his first birthday. I have just envisioned it was the perfect way to celebrate the Lord's faithfulness in his first year of life, to celebrate our first year as parents. We saw at that first feeding that Beau's NICU nameplate had been made. Each baby has one with a character.. mostly butterflies or animals. Beau's was a Mickey Mouse, and I sobbed at the encouragement that it brought me. 


Our Saturday was filled with the encouragement of visitors, many that we never even saw. Ben's mom manned the waiting area and texted us photos each time someone new arrived. We were trying to see strong stats in our boy until Sunday, and as the day went on we became more and more encouraged. Beau's feeding was still a huge source of stress for me, as he was being held to even stricter goals since arriving in the NICU. It had been an incredibly emotional 24 hours, but my first experience with pumping made me feel like I was doing something to help my precious boy. 


On Sunday morning Beau's oxygen levels began dropping. The nurses had told us to only panic when they panic, and the immediate appearance of the doctor and the emergency heart echo told us enough. Ben packed up our belongings as soon as possible and I crouched on the floor and tried to breathe. We were anticipating our precious little miracle being transported to a bigger hospital for heart surgery. Feeling like a mom came instantly to me the second I saw my little boy's face, and I couldn't process or handle the deep grief and fear that I felt. 


The heart echo showed that the heart issue wasn't happening, but revealed that Beau was struggling with some pulmonary hypertension. The one thing we hadn't been anticipating. The blood vessels in his lungs were constricted, and it was keeping him from regulating his blood oxygen. Beau was put on oxygen, and a feeding tube. We tried to hold it together and waited for more information. Waiting until Sunday hadn't revealed anything, and we would have to give it another few days. We'd do another heart echo on Wednesday. This meant that Ben and I had to go home. Being told that I had to leave the hospital without my baby felt like my heart was completely ripped away from me. Leaving the hospital will be one of the saddest moments of my life. I clutched one of Beau's little hospital blankets the whole ride home. The first thing I did when we walked into our house was put photos of Beau in frames. I put one on both of our nightstands. Beau was part of us, even if he wasn't home yet. I was afraid to go in the nursery but knew I needed to grab a few things from there. Ben and I were surprised at the sweetness we felt when we went in his room. The last time we had been there we anticipated returning with him. That hadn't happened yet, but since then we had gotten to meet our son. Being able to imagine the face of the baby who would live in that room gave us great joy. 


After a few days the NICU team saw that Beau was eating well, especially when we were feeding him, and removed his feeding tube. We had a steady flow of visitors. Ben and I were running on fumes. Waking up every three hours for me to pump, and for Ben to wash all the pump parts and label the milk. We loved this routine as it was happening at the same times Beau was being fed by a night shift nurse. It made us feel connected to our baby. We'd try and rest as much as we could and would wake up and drive to the hospital. Ben tore me away from Beau's bedside each night. During the day we could change him, feed him, and be by his side. They were long days but we couldn't fathom not being there. 


That Wednesday Beau had another heart echo. It came back completely clear. Beau did not have an aortic coarctation, and the pulmonary hypertension was gone. They immediately tried him off of his oxygen. He lasted less than an hour before needing it back. We were now trying to figure out why. 


On Thursday during rounds the doctor mentioned that part of Beau having extremely small features could mean that he had narrowed nasal passages. They suspected that he couldn't breathe through his nose because it was too small and flat. Every time the features of my precious boy were criticized my heart broke. He was perfectly created by God. He looked just like Ben to me. He was my perfect, precious boy. I couldn't handle it. I couldn't handle the unknown. I had a really hard day and Ben forced me out of the hospital. We sat in the car and ate our millionth Jason's Deli turkey wraps and I sobbed. When we shakily returned to the NICU, I stopped in the bathroom. I prayed out loud and begged God to give me some hope. I needed hope that my baby boy would go home. 


We returned to Beau's bedside and his stats looked good. He was getting oxygen through the tube, but was managing to breathe it in. Ben said "see!" and I told him that wasn't the answer to my prayer, I needed more. Beau's doctor then appeared at our sides to tell us that the first half of Beau's genetic testing had come back, he had all of his chromosomes. Having all your chromosomes isn't the end-all-be-all, and we were fully prepared to walk with our son through whatever life was going to have for him, but this was an encouragement directly from the Lord.


The next day the plan was focused around investigation of Beau's nose. The doctor wanted to look into transferring Beau to another hospital for him to be put under anesthesia and have a camera put up his nose. Again our new parent intuition told us that we didn't want to jump into anything. We asked them to do everything they could do at the hospital we were at. An MRI of Beau's head was ordered and an ENT (ear, nose, & throat) doctor was going to come to the hospital to check him out and also review the MRI. Some emergency MRIs took precedent over our baby boy, so we spent the day snuggling him. Shortly after we had left the hospital that Friday night, our precious boy was given a little something to sedate him, and was taken to his MRI. I had to try not to think about it. All along I had experienced strong feelings about all of what they were telling me about Beau. I never believed his heart had a problem, or that he had anal atresia.. but my gut told me something was wrong with his nose.


.... and my gut was wrong. Another test came back telling us that our sweet baby was exactly as he should be. Yet we still didn't know why he was needing a tiny bit of oxygen to function. Being told that his nose wouldn't need intervention felt bittersweet. Sweet because he was okay, but bitter because the question still remained and because I just wanted to start moving forward. The whole process had never felt dark, because of the sweetness of the Lord and those surrounding us in prayer, but the weekend was really hard for me. The weekend doctor didn't seem motivated to make a plan, and I was discouraged. On Sunday Beau tried to wean off of his oxygen and failed after a strong 7 hour attempt. I should have been encouraged by his progress, but instead it felt like my baby would never come home. That night our home group moved meeting to the hospital waiting room. It felt great to be surrounded by people that we could be so at ease around.


On Monday morning the doctor who would be in the NICU for the next two weeks came with a plan. Our new doctor shared that the second half of Beau's genetic testing had come back normal. We had been told all along that we were looking at some sort of syndrome and this was not the journey he would walk. We felt conflicted praising the Lord, because we know this is a journey that so many walk, and that Beau's life would be beautiful regardless. But we were thankful.  The doctor wanted to give Beau a real shot to regulate his oxygen on his own, and if he couldn't by mid week she wanted to send him to a children's hospital and doctors who could get to the bottom of his issue. At this point he was thriving on the tube puffing just room air into his nose. He was needing so little intervention. Monday was the last time he was on his tube. I tried to stay out of his room as much as possible to avoid staring at his monitors. They wanted him to do well off of the tube for 48 hours, and pass a few other different tests. He did it all, and on his two week birthday, our baby boy got to come home. 

We had been told that a million things were wrong with our child. It had been an incredible rollercoaster. The love we feel for our precious boy covered it all. I don't know the purpose of why we had to walk through this, but I know there is one. If it was all so that we could be in the hospital when Beau started experiencing the pulmonary hypertension, then it's worth it. If it was all so we could deepen our dependence on prayer, then it's worth it. Only because of the love of Christ can I look back on this journey with joy. For a situation that should have felt so dark, it always felt filled with light. We are grateful. 



14 comments:

  1. Wow. Thank you so so much for sharing your journey. I cried reading this, putting myself in your place as a new mom. I am so encouraged by your trust in the Lord and strength! Praise Jesus that your sweet baby is home and that the doctors were wrong.

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  2. oh my sweet stars Victoria. I'm just a puddle. I've been praying for you before, during, and will continue to pray for you and your sweet family. Praise the Lord for a sweet sweet perfect child. He is perfect in every way. Bless you for sharing your incredible God field story. Sending some much love and encouragement from Tennessee. And as you continue to transition home, know that you and Ben know whats best for Beau. And Beau is so smart already, he'll let you know his needs. I know you are going to be a strong strong momma.

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  3. Praising the Lord for His goodness and grace! A beautiful story, friend!

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  4. Praise God for His faithfulness in meeting you with sweet moments in the midst of the road you walked this month. And praise Him for sweet baby Beau being home safely as a handsome and healthy little one! :)

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  5. Praise God for His unseen hand of protection on your precious baby boy.

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  6. Wow! What a HARD few weeks. I'm so sorry for the roller coaster you've gone through. Praise God for answering prayers and keeping your little guy safe and healthy!! I'm so glad he's home now :)

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  7. What good news that sweet Beau is healthy and just as perfect as you always knew/know he is! God is always working behind the scenes, and although we may never know what He's doing (or maybe it becomes evident in His time), it is so wonderful that He sends His people to surround us, encourage us, and love on us in the wait.

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  8. Mama (and Daddy) instincts are so strong and I'm thankful yours were spot on. I know you would have been able to handle anything with your precious boy. It's what parents do. I'm especially thankful God has been in control and has been watching over you all so you could bring your sweet little man home! Beau has the BEST parents! Blessings to you all.

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  9. Thank you for sharing this story! I am so glad that you are all home and healthy!!

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  10. So incredibly sweet! Loved reading along and seeing all of the pictures! Congratulations!

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  11. Oh Victoria, I cannot imagine the heart ache and grief of the last weeks. Praising God with you and Ben for wonderful news of Beau's homecoming!!!! Thank you for sharing with us all. <3

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  12. What a testament to God's goodness. I cried reading this because I could relate to so many parts of your story. Being told your baby could have a genetic syndrome, the concern about heart issues and having echocardiograms, laying through an uncomfortable and stressful MRI and in the end having a perfectly healthy baby boy! So happy for your little family! Thank you for sharing!

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  13. Isn't God so good? I loved seeing his hands working through your story. I know you'll be glad to have it all written out in the future too!

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  14. Oh my gosh Victoria, praise God Beau is healthy and home. Thank you for sharing your story and WOW is God amazing...

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