Our Miracle Baby, Our Little Fighter

From the Beginning

The story of Kip, our miracle baby ​I had bariatric surgery in May of 2021 and found out I was pregnant in February of 2022. It is advised to wait at least a year before becoming pregnant so my obgyn wanted me to see a maternal fetal medicine doctor at 18 weeks to make sure that Kip was developing well. IGUR babies are common for bariatric patients. My husband and I went to this appointment at Fairview and they told us that Kip was a great size but there was another issue. They put us in a room and we waited. Three doctors came in to tell us that our baby was very sick and they did not know why. His abdomen was filled with fluid. The official diagnosis is fetal ascites, cause unknown. They told us that this amount of fluid could restrict lung and heart development. They told us that this could result in multiple needed surgeries at birth. They also told us that our chances of bringing a baby home were small and he would more than likely die in utero. He was already in meconium. There was the chance of meconium aspiration syndrome. We spoke with a geneticist and signed documents to complete an amniocentesis. I don’t think we realized the severity of our situation or we were in shock until we had the next conversation. The geneticist then asked me if I wanted to terminate my pregnancy. He explained that this may be the best option for Kip as his quality of life may be poor. I was dumbfounded. I hadn’t even completed any testing. We had no idea what was going on. All they saw was fluid and asked if I was ready to terminate. I said no. I was adamant that was not an option. Still they tried to convince me. I looked at my husband and asked his opinion. The geneticist then told me it was not his decision, it was my decision. I told the geneticist that this is his baby too. I was angry. The geneticist left the room and we talked. We shared with each other how we didn’t have to make a decision today but if his life was only going to be pain and suffering, was termination the best option? This weighed very heavy on me. The geneticist came back and we moved forward with the amniocentesis. ​

The Answer is No

I went home and spent several days thinking about what I should do. I was angry. I was sad. I cried multiple times. I cursed God. I knew the answer in my heart though. I knew I couldn’t terminate the pregnancy and live with myself. I understand this is a good option for some but it wasn’t for me. I finally said out loud to my husband, “If God needs this baby with him now, he needs to do it himself. I can’t terminate the pregnancy.” Once I said it, I felt a small weight lift off my shoulders. My husband supported my decision. We were now on a schedule of being monitored every week by maternal fetal medicine and having an ultrasound. The genetic testing they did at the time came back negative and they once again pushed for termination. I told them to put in my chart “do not ask me about termination again, the answer is no”. At our 22 week appointment, the maternal fetal medicine doctor from Fairview came in and told me there was nothing else they were going to do. She said that my baby had to make a choice to fight and survive or get worse and die. There was a procedure that could be done to drain the fluid so his lungs and heart had more room to develop but she wouldn’t do it. She did not think he was a good candidate for this procedure. She told me I needed to prepare to come into an appointment and that he may no longer be with us. We needed to discuss how we would handle that such as arrangements and if we would have a funeral. I was pissed. You mean to tell me there is a procedure that could help him but you won’t do it? This was an unacceptable answer for me. I did have moments of weakness where I was looking up things like how to pay for a baby’s funeral and what is considered a stillbirth vs. miscarriage. I lost my faith. People were telling me to pray about it and I was telling them I was angry. I told my mom I was so angry with God. She told me that was okay and that other people would pray for me because I couldn’t at that moment. Someone in my support group said “it feels like you threw your child into a swimming pool with floaties they’ve never used before and they are struggling but you can’t go in there and get them. You feel so powerless and you know your child isn’t safe and they’re in your own body.” I never related to anything more. I felt like my body was failing me but I knew Kip was a fighter. We had made it this far. ​I contacted Children’s Hospital and our 23 week appointment was done there. I wanted to speak directly with a maternal fetal medicine surgeon as to why my baby was not a good candidate for a procedure that could save him. We had a fetal echocardiogram done and a fetal cardiologist told us his heart looked good but if the fluid continued to grow, it could tilt his heart upward restricting blood flow and his heart could stop. The cardiologist did not see that happening now but it was a possibility. We had an ultrasound done and then a meeting with both a maternal fetal medicine surgeon and pediatric surgeon. The MFM surgeon told us that our baby was not a good candidate for draining the fluid because first, he was so young. If the surgery put me into labor, he would not survive and right now he was still surviving. The benefits had to outweigh the costs to do the surgery. Second, Kip was going to need surgery at birth and because babies are so small, the fluid would actually help the pediatric surgeons. It would give them more room to work with. These two surgeons were also confident this was cystic fibrosis and wanted testing completed to confirm it. They gave us resources about cystic fibrosis. I was feeling a little more confident that we may actually know what this is and how to treat it. ​I had also contacted Mayo Clinic and they decided to see us for our 24 week appointment. We did a repeat fetal echocardiogram. We did our ultrasound and they gave us the same response to surgery but they told us they would not give up. They told us they would fight to keep Kip alive. They gave us the same possible outcomes as Fairview and Children’s Hospital. Our chances of him dying in utero were high. Our chances of stillbirth were over 75% but they were the only maternal fetal medicine to tell us that if we fought and he fought, they would fight too. We transferred all of our care to Mayo Clinic. The test results came back for cystic fibrosis and they were negative. We were back to square one. It was exhausting but also amazing to hear every week that he was still there but so was the fluid. 

Early Preparation

At 26 weeks, they found fluid around his heart. It was a small amount but still needed to be monitored. His heart was still developing correctly and so were his lungs but my cervix had shortened and was open. I was dilating. They told me I was set to go into labor at any time, I was too far along for a cerclage, and they gave me the first round of steroid shots for lung development. They told me that if I went into labor now, the odds of a very sick baby surviving were very slim. We met with neonatologists and pediatric surgeons. We were told to prepare for a lengthy NICU stay. I was told I would deliver in an operating room regardless of vaginal or C-section and there would be a team ready and waiting for him. There would be a lot of people in the room but they would be there to give him the best shot possible. We started biophysical profiles at 28 weeks and a fetal MRI was done to try and find out more information. ​At 29 weeks, I went into preterm labor for the first time. They were able to stop it but they kept me hospitalized for three days in case it started again due to the severity of Kip’s condition. I received the 2nd round of steroid shots for lung development and was discharged being told that if I went into preterm labor again, there was nothing else they could do and Kip would be born. They did tell us the risks once again of stillbirth being very high but that making it to 30 weeks with both rounds of steroid shots gave him a better fighting chance. I was still angry. I was still feeling like my body was failing me. I knew that Kip was a fighter though. Fairview had counted him out. I had not and here we were. We arrived to our 30 week and got the biggest shock so far. The fluid in his abdomen was gone. His lungs had room. His heart had room. They were able to see more clearly now that he had an in-utero bowel perforation. Maternal fetal medicine had a higher hope that he would make it to delivery but then he would be in for a hell of a fight. He would need surgery or possibly multiple surgeries to repair his bowels. He would need to be strong enough to make it through surgery. He needed to have enough functioning bowels to sustain himself. They told us to relax over the next few weeks, things looked okay with the pregnancy but prepare for the fight after birth. At 31, 32, and 33 weeks, the fluid was still gone. We spoke with neonatology again and prepared for delivery. 

Ready for Delivery

At exactly 34 weeks, I went into preterm labor a 2nd time. ​Neonatology came in and talked to us. They told us they were ready and waiting for when it was time. The surgeons were available if emergency surgery was needed. The labor and delivery nurses made sure to monitor him very frequently. I was told they would try and let me see him before they took him away if he seemed stable enough but it would only be for a moment. When it was time, I was taken to an operating room and I began to cry. It wasn’t because of the pain. (Truthfully I had a pretty good epidural) It was because this was it. Would he survive delivery? Was he strong enough? What if he couldn’t breathe on his own? Was I ready to say goodbye if I had too? Kip was born August 3rd at 34 weeks. He was covered in meconium. His dad was able to cut the cord and he was placed on me while that was happening. He was then whisked away to be worked on and his dad went with him. I didn’t hear him cry but a nurse came and told me he was breathing on his own and he looked beautiful. 

Miracle After Miracle

When I was ready, they wheeled me over to see him because he was stable enough. He was breathing on his own. His eyes were open. He had a tube down his mouth suctioning out meconium. My husband and I had a few precious minutes with him before he was transported to the NICU. My husband went with him. The NICU was on a different campus so I had to be transferred there. Kip was hooked up to IV nutrition in the NICU and his dad was able to hold him for the first time that night. I was transferred several hours later and went straight to the NICU. ​All the tubes and wiring was overwhelming. He had suction in his mouth, IV nutrition in his belly button, monitors everywhere. Constant beeping but he was doing much better than anyone expected. I didn’t hold him until the next day. We were unable to pick him up ourselves because of the IV nutrition but nurses helped us. In the next few days, they would complete testing to find out where in his bowels he needed surgery. He received ultrasounds daily and then a lower GI study. He passed the lower GI study and we were floored. The surgeons were surprised. They warned us about the upper GI study if it wasn’t in the lower and they completed an upper GI study. He passed the upper GI study to the shock of every person. The contrast was coming out successfully along with meconium. The surgeons made the decision to try feeding him. They could see scar tissue and calcification on his bowels in the ultrasound but with passing these tests, it appeared that the hole had healed on its own. This was unheard of. They could also see calcification on his liver. They told us to expect blockages and setbacks when he started having breastmilk. This would be the true test. He started breastmilk via feeding tube and it went through. My husband and I didn’t believe it. We questioned the doctors repeatedly asking if they were sure. We asked if more testing could be done to confirm there was truly no hole. We, course, didn’t want him to have to have surgery but it took us a moment to accept the news. We were told that no surgery would be required at this time. After months and months of gloom and doom, we couldn’t believe what we were hearing. The baby they wanted me to terminate, the baby they told me wouldn’t make it, the baby whose funeral they said I should plan was fine. Now he does have calcification on his bowels and liver as mentioned and they don’t know how that will affect him as he grows. Surgery may be required in the future to repair that. His intestines are also balled up basically on one side of his body so the left side sticks out farther than the right. This is something they are going to monitor. We were told to prepare for a 3 month NICU stay and Kip was discharged from the NICU after 16 days. He was put into a study for rare diseases at the Mayo Clinic to try and discover more information about him. There is no medical explanation as to why he suffered an in-utero bowel perforation or how it fixed itself. Kip is our miracle baby, our little fighter.