We would first like to thank all of our friends and family for your unconditional love & support that has helped us so much during our difficult times. Steve & I went to our big 21 week ultrasound on January 10th and received some bad news. Our beautiful baby has a small & large hole in her heart as well as one valve and not the normal two. We also found out that she has a blockage in her bowel and will require surgery immediately after birth in order for her to be able to eat. She has been diagnosed with Duodenal Atresia and we won't know the extent of her treatment needs until she is born & the doctors are able to do an ultrasound. This means we will be spending anywhere from 2-4 weeks in the Nicu post surgery so doctors can make sure her digestive system is functioning. Once the bowel surgery is complete, we will be heading to Boston around two months of age for open heart surgery to repair the holes and create two valves. The surgery she will need is Av canal surgery. The surgery itself is fairly involved but done all the time at Boston Children's hospital. We are so lucky we live close by. Baby Eaton has been following up with the cardiologist at UVM medical center for echocardiograms. She will also need an echocardiogram once she is born so the doctors can look directly at her heart, rather than through ultrasounds. One chamber of her heart is slightly smaller than the other but as long as they both keep functioning & growing then she will only need the one surgery. If for some reason the chamber stops functioning, then the one valve will run into the functioning chamber but that would mean she would need several heart surgeries over the course of a year or two. The survival rates of several surgeries aren't as good but we are optimistic that Baby Eaton is a fighter & will continue growing as strong of a heart as she can. These problems coincide with Down syndrome. Steve and I never did any testing because from the beginning we said that we would love this baby no matter what and we most certainly will. It was recommended by our doctors that we take a blood test and see so they can better care for our child throughout the surgeries. We declined an amniocentesis test since that test carried a risk of miscarriage. Although the blood test is not 100% accurate, it came back highly likely that our child will be born with Down syndrome. The diagnosis doesn’t bother us as much as the surgeries that are planned ahead. We have a lot of unknowns which scare us the most but we are also very prepared for what’s to come and are remaining positive. We ask that everyone please keep us in your thoughts and prayers. If for some reason the pregnancy takes a turn for the worst, it is possible that I would have to deliver the baby in Boston or the baby would be taken via helicopter to Boston immediately after birth. Yet the doctors are saying the baby is completely fine while inside of me and as of now we can have a regular birth at UVM Medical Center. We have a phenomenal team of doctors we are working with who have been monitoring us closely and helping us cope through this process. We couldn’t be more blessed for that. Initially we were going to be surprised about the gender but because of the diagnosis and surgeries needed we felt like finding out the gender would give us great hope and some excitement. Even though everything in my body said this baby was an active boy, it turns out we are just having a very active girl. We couldn’t be more excited and finding out has helped us so much. We want to be open and honest with those close to us as we need all the support we can get. Our child will be no different than any of yours and we will not single her out in anyway or make her feel different. As she grows bigger everyday our excitement grows and we can’t wait to love her to pieces. God blessed us with this beautiful baby and we are so grateful for that
It has been quite an eventful week. Only now do I have time to sit down and fill everyone in. Last Sunday mid day I noticed I had lost my mucus plug. It scared me a bit since I was only 35wks and 1 day but I had read online that the baby could come soon or I could have two weeks. Therefore I didn’t let it bother me much and enjoyed the rest of my day and went to bed. Throughout the night when I went to the bathroom I noticed I had started to slowly leak what I thought was amniotic fluid. I did my best to hold out until the morning but around 4:30 I began to worry and called my gynecologist. She suggested we go up to the hospital just to be looked at to make sure everything was ok. I quickly packed my bags just in Case and so did Steve assuming that they would just look and send me home. Well once we got to the hospital around 5:30 or so they proceeded to check me and I was immediately admitted for induction. I honestly was so scared and caught off guard and did cry a little. I was worried that I was only 35wks and didn’t know how our sweet angel would respond to labor. Luckily they gave me a steroid shot to mature Lily’s development and started a pitocin drip. By the way Pitocin is the worst stuff. Yes it’s great maybe for an emergency but a pitocin labor is mighty painful. However since I had so much amniotic fluid, I labored for 12hrs and didn’t feel a contraction at all. After 12hrs they decided to break my water just a little to allow the contractions to start working and move this process along. Once they broke my water a little I immediately felt relief. My stomach had been so tight for so long and the pain was unbearable and my stomach immediately dropped down some. Slowly the contractions began and I continued to labor and leak fluid while they closely monitored me for cord prolapse and the baby’s heart rate to change. But miss Lily did amazing throughout and her heart rate stayed stable through the whole thing. She’s truly the strongest baby I know. I labored with Steve, my doula and the incredible nurses until around 10:30 Monday night. That was when the contractions got so bad and the back pain was terrible. I decided to take an epidural at that point to get some relief. Once the epidural was placed Steve and I were able to get a little sleep before it was time to push. When I woke up around 4am Tuesday morning Lily decided she was ready to make her entrance. The nurses anticipated that she would be delivered around 7 but I had her out in 44mins. Our little Lily entered the world screaming and crying and it was the best feeling ever! I didn’t tear and honestly it was the best case scenario overall. We were able to hold her briefly and then she was whisked away to the Nicu for tests. While stabilizing her they were able to do the echocardiogram and her heart was just as expected but maybe even a little better. Her chambers had grown equally together; initially one chamber was a bit smaller than the other but both were functioning correctly and the valve was working perfectly. This was great news since it would clear her for her upcoming bowel surgery. I continued to recover in the mother baby ward with amazing care from all my nurses. We met our pediatrician who agreed that Lily was very strong and doing well considering her health concerns. We were able to start the Katie Beckett (high income Medicaid) form so we can attempt to get additional help with all the medical costs. On Thursday we met with our pediatric surgeon “Dr. Murphy” who would clear Lily for bowel surgery on Friday and would perform the surgery. Originally we had met with Dr. Sartorelli but it was Dr. Murphy who Lily was scheduled with. I was a little nervous because we hadn’t met him but he is phenomenal and I would highly recommend him. Lily was therefore baptized in the Nicu on Wednesday because I knew surgery was in the plan within the next few days. Father Tim was so nice and we felt so much better going into surgery that Friday. My brother and nieces came to visit Lily Thursday and Friday and it was so comforting having them there for the surgery Friday. Back tracking a little, on Wednesday the doctors had wanted to place a pic line in Lily to provide her with extra nutrients prior to going into surgery. They had tried all day to place the line but it wasn’t working out. It made me so sad she had to go through this but she was a rock star and didn’t flinch. The plan if they couldn’t get the pic line was to place her under general anesthesia Thursday and have it placed in radiology. The thought of placing our child under general anesthesia two days in a row made me sick. I was happy to receive the news Thursday that the anesthesiaologost agreed that it wouldn’t be good to go under general anesthesia two days in a row and therefore they wanted to give her a spinal tap and place the pic line that way. We were so relieved and of course Lily was amazing! Friday morning Lily went into surgery around noon. That was the hardest day yet. We were able to walk her down to the operation room and wish her well. I’ve never cried so hard in my life. This little baby had only been in the world for 3 days and we had already fallen so in love with her. For four hours we waited with my family in the Nicu waiting room. Minutes felt like hours and it couldn’t go by fast enough. Around 4:30 on Friday Dr. Murphy appeared and Lily was a trooper through surgery and it was a success. The hole was small but the stomach was very stretched from the blockage and the intestine was thin so Dr. Murphy had to take his time sewing it up. But in conversation with him he was very optimistic and happy that the surgery had gone so well and so were we. Originally for pain management it was discussed to use Fetenal but the thought of using a narcotic on such a small baby made me sick. Due to Lily’s heart and since she had been breathing so well, Dr. Murphy ended up recommending an epidural to manage the pain and Tylenol as needed. This pain management plan was better than I could have hoped for. Lily had the epidural until today before it was removed because it had started to leak. As of now her pain is being managed with Tylenol and she seems to be responding very well to just that. She is such a miracle baby and so resilient! A breathing tube had been placed post surgery while she came out of the general anesthesia and we were happy to go to the Nicu today and she had had it removed. I swear if they hadn’t removed it she would have done it herself. She was always grabbing and trying to rip it out. My strong little sweetie and so aware. Yesterday I wasn’t able to hold her because she still had the tube in so today Steve and I help her all day. Grandma came to visit Lily today too and she had woken up and was the most alert she’s ever been. You can tell she’s feeling so much better and we are surely headed in a good direction. We continue to be much closer to bringing our love home. My birthday is May 11th and I would love nothing more than to bring my baby home! We will be up in the Nicu for a month now just making sure Lily’s bowel is functioning correctly. In the meantime my milk supply is generous and by the time she can eat she will have plenty of milk. Lily will also have a G tube until after her heart surgery in case she needs extra nutrients. The heart surgery is scheduled for either mid July or mid August. We are just waiting to hear on a date. I am dreading that surgery just because it is so hard to see your child go under general anesthesia but we will be happy when this is all over. This is the hardest thing for us to go through but we were very lucky we were able to prepare before birth. The love and support from everyone is incredible and we couldn’t thank people enough. It’s also very hard to recover from labor and delivery when your not at home. But then again this is our first child and we don’t know anything different. I am sore and struggle from day to day, exhausted and in pain from sitting in hard chairs and walking the halls just to get to the Nicu but spending that time with Lily is worthwhile. My heart is full and we couldn’t be more in love😍
We know that you both have the character to get through the challenges ahead, and we have a good feeling that, after all the worry and all the stress, there's going to be a beautiful baby that will be a source of joy for many years to come.