This week we celebrate World Prematurity Day

11/18/2016

Written by: Sarah Baldock

We knew our daughter was going to be born early. After a routine ultrasound at 25 weeks and 5 days we were told I had Placental Insufficiency; there wasn’t enough blood moving through the umbilical cord to the baby which meant she wasn’t getting what she needed to continue growing. She was already measuring small for her gestation. The doctor told us I would likely have to deliver right away. We were terrified. We had so many questions including “could a baby born at 26 weeks survive?” Eventually we were told that babies can survive much earlier than this although there were many complications that often came with having a premature baby, one is respiratory distress so I was given a steroid shot to help develop the baby’s lungs. I then had another ultrasound that provided a clearer picture of my placenta and the baby. The new scan showed what we already knew, they called it “Intermittent Absent Flow”. However it was decided we were stable enough to hold off on delivering for now. Although it was certain our baby was going to be born early, it was made clear that every day I could keep her growing inside me was one day closer to having a healthy baby; and so began 6 weeks of hospital bed rest with constant monitoring and repeat ultrasounds every second day.

A neonatologist from the NICU talked to us about what would happen when the baby was born, where she would go, what tests would be performed. He also told us what to expect, the risks and complications with having a premature baby. I remember being so overwhelmed in that moment. He asked if I had questions but I was too scared to hear the answers and I couldn’t get past the constant stream of tears running down my face. All I could focus on was the list of possible complications he had listed, things like neurological disabilities, cerebral palsy, brain bleeds, blindness, infections, and of course death. The list went on and we didn’t know what most of it meant, only that it was unlikely we would be taking home the healthy baby we had imagined having. I remember being told if I could get to 30 weeks the outcome was so much greater.

At 30 weeks and 1 day I went for my usual ultrasound. “We found something” we were told, “We need to send you for a fetal echocardiogram.” Our hearts sunk again, what did this mean? We were told that our daughter had a congenital heart defect called Tetralogy of Fallot (TOF). The cardiologist explained there were four defects within our baby’s heart and she would need open heart surgery. TOF babies are pink or blue, literally. If she was pink she would likely be able to wait several months for surgery. If she were blue she would need surgery right away. Because she was coming sooner than anyone would like we prayed she were pink and would have time to grow and become stronger prior to surgery. TOF, often comes with some pretty serious chromosomal abnormalities. We were devastated, we had just reached this major milestone, 30 weeks! Now we were receiving this heartbreaking news. We were worried about so many things, mostly what quality of life our child would have if she were to survive this. I was 32 weeks when our doctors decided it was time to get everyone together to discuss a plan. No one could believe I had made it as far along as I had. It was decided I would deliver at 34 weeks. It was best for the baby and myself as I had begun to develop preeclampsia. Brian (my husband) and I felt good about this plan, or at least that we now had one. We knew when our daughter was going to come into the world and we felt that she was going to be ok. But as we all know plans rarely go as made. The next morning my ultrasound showed the blood flow in the umbilical cord had reversed completely. The baby had to be delivered right away. I was taken into surgery for a caesarean section that afternoon.

Our daughter, Charlotte Anneliese, was born at 32 weeks on April 12^th, 2016 at 4:52pm. She weighed only 1230g, or 2lbs 11oz. She came out pink and breathing on her own. Genetic testing showed she had no chromosomal abnormalities. She was sent to the NICU immediately. The next morning, as soon as I was allowed to, Brian took me to meet her for the first time. When we arrived she was having tests so we couldn’t go to her. I sat in tears watching from across the room for an hour. Finally the nurse placed her in my arms. I was overwhelmed, she was amazing. I cried, I was so happy to finally hold her and she was beautiful but also so tiny and weak looking. It was hard to see her hooked up to so many wires, tubes and machines but she was breathing on her own and the doctors were very positive about how well she was doing. At the same time I was having feelings of guilt for not being able to have done a better job of keeping her safe inside me. I was scared for her, we still had a long road ahead of us and neither of us knew what to expect.

Charlotte was doing well her first week. She was gaining weight and they were starting to feed her through a feeding tube. She had several IV lines and a central line (PICC line) for different fluids and medications to run through. One night while Brian was doing skin-to-skin care we noticed her left leg seemed to bother her, she would cry when it was touched. The PICC line was in this leg and it turned out to be badly infected and needed to be removed immediately. Over the next several days the infection continued to get worse. It turned out to be a staph infection she had contracted from the PICC line insertion. The infection ending up moving to her heart. She was septic. She had lesions on her feet and on her head that needed to be drained. The doctors went back and forth deciding on the proper course of treatment, trying different antibiotics and medications to ease her pain. We were told that after antibiotics were started a clean blood culture would appear after about 2-3 days, it took 8 days before Charlotte had a clean culture meaning the antibiotics were finally working. Charlotte’s platelets dropped several times, she ended up having 3 platelet transfusions and required a blood transfusion. She was so weak and tired from fighting the infection. She was given morphine for her pain which would make her forget to breathe and ended up needing respiratory support. We had to stop feeding her as her body couldn’t handle the food in her system. The neonatologist treating Charlotte at the time told us he hadn’t seen this kind of infection in his 30 years. We were heartbroken and terrified. We weren’t able to hold her, she was in too much pain. I would sit by her incubator holding her little hand through the window and just cry. We didn’t know what to do, we felt useless. We had no way of helping her. We kept asking ourselves just how much can one little baby endure? Our hearts sunk even further when during rounds one day the doctor looked at us and said with tears in her eyes “it’s very touch and go”.

Things had gotten worse before they got better but slowly after several weeks Charlotte began to improve. The lesions on her body got smaller. Her leg seemed to be bother her less. Her blood work showed improvement. Eventually we were able to start feeding her again. As we weaned her off the pain medication her oxygen levels improved and we were able to go from CPAP to eventually breathing on her own without any support. It was amazing to see how resilient she was. Everyone kept telling us how strong these little preemies were but as a parent when you see your child in pain and fighting for her life you have a hard time believing it’s true. The best part of her improvement was being able to hold her again. I would sit for hours every day with her on my chest. I had never heard of Kangaroo Care, or skin-to-skin care, before our stay in the NICU but it was the most wonderful bonding experience. Having her lay there on me, getting to feel her, listen to her, it was the greatest healing therapy for both of us.

Although she still had an IV and remained on antibiotics for 6 weeks Charlotte continued to grow and we were able to start orally feeding. She had received donor milk while we waited for my milk to come in. We struggled to breastfeed; I struggled with supply and she struggled to latch as she was still so small. I had been expressing and pumping every 2 hours around the clock since my C-section but my milk just wasn’t coming. After medication and working with a lactation consultant for weeks I still wasn’t able to produce enough. I had always planned on breastfeeding and I had thought that after everything we’d been through this was going to be the easy part. I mean it’s the natural thing to do right? Wrong, it is not natural. It is hard, like really hard, and I was killing myself, both physically and emotionally, trying to force my body to do something it just couldn’t do. Eventually the doctors made me understand that at the end of the day what was most important was getting Charlotte what she needed to grow so we made the decision to supplement with formula.

Brian and I would get excited for her weigh in. We loved to see the little gains she had each day. Even if it was only a few grams, they were a few grams closer to her coming home. Finally after 8 weeks in the NICU Charlotte had reached 5lbs. She had moved from her incubator to an open crib. She was eating well on her own and we were told that she would be ready to go home as soon as she finished her course of antibiotics. Her cardiologists were happy her oxygen levels were still stable. She could continue to wait, to grow and get stronger before surgery would be needed. We had 3 days left in the NICU. 3 days until we would be able to take our daughter home for the very first time. We were so excited!

And then something went wrong. The new PICC line her antibiotics were running through was stuck. Several attempts by doctors to remove it failed. We later found out it was a blood clot and she would need surgery to have it removed. We were sent that day to the Children’s Hospital. We met a clot specialist who started her on blood thinners and waited while the surgeons decided what to do. Finally one of the surgeons came to assess Charlotte and while examining her began to massage the arm and the line. He pulled on it a little and the line just came out, just like that! No surgery would be needed. I couldn’t believe it, I was so relieved I could have kissed that man.

We spent 2 more days at the NICU and were finally told we could go home. She would be sent home on several medications and a special high calorie diet to help her gain weight. We were taught how to make her feeds and administer her medications. We were also given a long list of follow up appointments. It was very late, about 11:00pm, and they had asked if we wanted to wait until morning to leave but we could not wait to take our daughter home. It was unreal strapping our little bundle into her car seat for the first time. She was still so small the nurses had to show us how to roll blankets around her head for extra support. We joked as we were walking to the car that it felt like we were stealing her. It had been such a long road and we had dreamed about this moment for so long. Nothing felt as good as cuddling with her in our very own bed that night.

We were very fortunate for many reasons. One that we lived in a city that has an amazing hospital and NICU. We never doubted the care Charlotte received. We could tell that everyone truly cared about the babies, and for the families. We were always treated with respect. They were always patient with us, taking time to ensure we understood what was happening and answering our questions. They also reinforced that we were her parents and encouraged us to be part of her care, to make decisions and to do as much as we could. From day one, when Charlotte was well enough, we held her, did skin-to-skin care, fed her, bathed her, and changed her diapers. Everything we would have done at home with her.

I struggled with leaving Charlotte. I never wanted to be away from her and more importantly I never wanted her to think I’d left her or that she was alone. The nurses, social workers, and doctors really try to enforce how important it is that you take care of yourself too; getting sleep, eating well and taking breaks every now and then. It helped to get to know the nurses so that when I did leave I felt better knowing I was leaving her in good hands. Many times I would come back to find her snuggled up with one of the nurses. I remember coming back from lunch one day to 6 nurses surrounding her incubator, I instantly panicked thinking something was wrong but they told me they were just admiring how cute she was. Brian and I celebrated our first wedding anniversary while in the NICU. Our nurses decorated our pod for us and all but forced us out the door for dinner. It was so sweet and a much needed break at the time.

We were also very lucky to have an amazing support system of friends and family. They were constantly checking in, sending messages, flowers, and bringing us food. We truly would not have made it through without them. However we did learn that it’s also ok to ask for space. There were times when we were so overwhelmed that we needed everyone to take a step back and provide some room for us to either make a difficult decision, absorb the information we were being given or just spend precious time alone with Charlotte. Although it took some time, eventually everyone understood.

After almost 9 weeks in the NICU we have been home now for almost 5 months. We have had, and will continue to have, many follow up appointments and were back to the Children’s Hospital in September for Charlotte’s surgery. It went very well, and we were sent home 6 days post open heart surgery. She has recovered well so far and the doctors all seem very happy, as are we. While it’s likely she will need another surgery sometime in the future we don’t know when that will be. For now we focus on how amazing she is and everything she has overcome. She is the happiest baby, always smiling and brings so much joy into our lives. We love to watch her continue to grow and learn how to do new things, from rolling over to starting solids, it’s all so exciting. She’s so curious about everything and watching her reach new milestones makes us that much more grateful for the outcome we had.

This week we celebrate World Prematurity Day. We will be returning to the NICU to visit and celebrate with the nurses and doctors who cared for Charlotte. We are so excited to see them and for them to see how well she is doing. We know if it were not for these amazing people we would not have survived this journey and we will always be grateful to them for the care they provided to our family.