We are two weeks away from our next appointment at Children's Mercy so for the time things feel normal for us. We are just in a period of waiting until Kyler makes his appearance. I have been feeling stronger and stronger kicks and movements and am loving this time of normalcy while I can. One thing that has been comforting for me is to start getting things ready for his arrival. I have been getting things ready and packed for my stay in KC as well as some things for Kyler. I was very excited to get to spend an afternoon with my friend Cheryl who showed me how to make iron on transfers to make custom shirts. I had previously seen a design on Pinterest for an outfit I wanted to make for Kyler and I got to make that design on a onesie for him! I also found another design that seemed to be fitting for our little man! I also added "Moran" to all of our blankets so that they are ready to go to the hospital with us. We are still deciding when we will talk with the kids more about needing to go to KC for Kyler to be born, explaining more about how sick Kyler will be when he is born, and trying to prepare them for the major change of our daily lives that is going to be coming. We are still praying for a good outcome for our baby. As I have read blogs and other websites that have information on CDH I am praying that Kyler's liver stays down. Many of the sites I have read say that the liver being up in the chest cavity is indicative of a poorer outcome. When we do go down for our next appointment, we are hoping that we can schedule our induction date so that we can try to plan out my relocation, child care, and just be able to have that date to look forward to!
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Yesterday Mike and I got up early and made the drive to Kansas City once more. We were scheduled for another ultrasound and a conference with a team of people who will be caring for Kyler. At the ultrasound Kyler was the most cooperative he has been during an ultrasound and the tech was able to get the shots she needed to see plus a few "fun" ones for us. I am always amazed at the 3D scans how much those machines can see. We got to see some folds on the back of his neck, what looked like possibly a double chin, what appeared to be hair starting to grow, and a cute little picture of his legs crossed! After the tech was done scanning another doctor(I didn't catch her name) came in and a reviewed with us Kyler's diagnosis of Congenital Diaphragmatic Hernia and then mentioned the option of surgery again and we informed her that we had chosen to not do the surgery and were planning to deliver at Children's Mercy. Then I was caught off guard when the doctor asked me why we weren't going to do the surgery. I was surprised at how she asked, the tone made me feel as if we were being judged for making a decision that fit our family the best. Through tears I explained our reasons(the couple I could get out before not being able to talk through the tears), which was a hard thing to say. Even knowing that being in Kansas City for delivery is the best option for our family, it still is painful to think there is something else that might have been able to be done if the surgery wasn't so far away and with so many other factors playing into it. We were escorted out of the room to a small conference room to wait for the next part of our appointment. We have an amazing perinatal coordinator working with us and she was ticked that the doctor said anything to us about the other option. She let us know that we won't be dealing with that doctor anymore and I am not sad about that.
While waiting for the conference with the team, the social worker came in to visit with us about different things that she could offer. We were able to get information about staying at the Ronald McDonald house, who to talk to about financial assistance, and some general information about how she will be involved with us. Next up was the long awaited team conference. I had my list of questions ready to go and was ready to hear a solid plan of action. First up was a doctor from radiology who had the MRI scans up on the projector to show us as she explained what they saw. We had already been called about the MRI so we weren't expected to hear anything new. For the most part what we heard was what we already knew with the exception of a couple details. First new news was that some of the large intestine was up in Kyler's chest along with the small intestine and stomach. This means he has even less room for lung growth than we were expecting. The doctor also said that from the scans there was little or no left lung that they could see. We knew the left lung would be even smaller than the right due to that is the side where everything is coming up but we were not prepared to hear that he may not have any lung developed on the left side. It was devastating to hear. I was trying to write down everything I could about what she was saying and fighting as hard and I could to keep from sobbing uncontrollably. The doctor also said that she couldn't see the spleen but that it is often hard to see. After she finished sharing what she was able to see on the MRI we heard from Dr. Pallotto, the medical director of the neonatal intensive care unit. It was explained to us the concerns of his low levels of lung and the high risk he has for pulmonary hypertension due to the blood vessels not relaxing to allow blood flow. They are predicting this risk for Kyler based on his early numbers from the measurements they took at the early ultrasounds. We asked about the surgery to correct the hernia and were told that the surgery is not an emergency and will not be something that is done until the know Kyler can handle it. Due to the severity of Kyler's case and measurement data, the team is planning to get him on a breathing tube as soon as I have delivered him and to have an ECMO machine there as well. This means Mike and I will not get to hold him or even touch him as soon as he is delivered until an unknown amount of time while they get him stabilized. I know this is in Kyler's best interest but I am having a hard time accepting that I will not get to hold my child for an unknown amount of time. The team is anticipating needing to use the ECMO machine which does the job of the heart and lungs for Kyler by pumping out his blood, removing the carbon dioxide, replenishing it with oxygen and pumping it back into his body. If Kyler needs this level of assistance it isn't a great sign. The team wants him to be able to just have the breathing tube support and only use the least amount of support necessary but his early measurement numbers are not favorable for avoiding the use of the ECMO machine. Due to the small and part of the large intestines being up in the chest cavity, Kyler will also have a tube inserted into his stomach to help minimize any pressure going into the stomach and intestines that would put increased pressure on his heart and lungs. This also means he will receive all his nutrition through an IV until after surgery. We asked how big the hernia is and were told they have no way to see know until they can get in there during the surgery(if he is able to get to a point that they can do surgery). If they are able to do surgery, they can do a scope with small 3 or 5 mm incisions to repair a small hernia. If the hernia is too big and a lot of the diaphragm is missing they will have to do a more traditional incision below the rib case and look at placing a patch to fix the hole. Kyler's first 12-48 hours will be critical to see what kind of supports he will actually need, if his blood vessels will relax enough, and to see if he will be able to make it long enough to have a surgery to hopefully give his lungs a chance to expand and grow some. One of the hardest thing to deal with at this point is hearing how severe his condition is, not being able to do anything until he is born, and trying to remain hopeful when there is a very real chance that his lungs(and the heart from the stress of the blood vessels) will not be able to work enough for him to survive. It physically hurts to think about that possibility but it is something that I have to also prepare for. It kills me to think about J and G and how they will handle the worst case scenario. They are so excited for their little brother, giving him kisses, saying "I love you Kyler", talking about all the things they are going to teach him. Mike and I were connected with someone from Child life who gave us a couple resources to help us with knowing what to say, a book that has cartoon drawing of babies in an intensive care unit with tubes and wires all over the bay, and a little information to help us be able to eventually explain to them what Kyler being sick means. We did find out(slowly as I had to try to speak through crying without losing total control) that we will be allowed to have J and G up with us when we are induced. We will not have them in the delivery room but as soon as the doctors can let us, they will get to come in and see him. I hadn't been sure how soon we would want them to come see him but after hearing all the information we want them there as soon as possible in case Kyler isn't able to survive very long. We know that ultimately Kyler's future is in God's hands and we are just along for the ride. We will continue to pray and try to think positively. We know that the medical field has made so many advances and they are able to do amazing things for sick babies. I find some comfort in knowing that Children's Mercy is one of the pioneers in using an ECMO machine, starting their program in 1987, and that children with CDH born at CM that needed ECMO survived 52% of the time compared to the 51% at other centers in the country. We have officially hit the 3rd trimester and as much as possible I will be celebrating this "normal" time we have with Kyler now and praying, praying, praying that we will get to spend many more moments celebrating with him after he is born. I want my family and friends to know that I do want to talk to you about him and what is going on. I don't want to pretend like everything is fine when that isn't how I am feeling. I want you to know that my emotions are like a roller coaster where sometimes I can speak about him and the situation with no trouble and other times I may just start crying so if I do, give me a hug and eventually I will be able to find words again. Finally I want you to know that we appreciate all of your prayers, kind words, and thoughts. I do see of the comments that are left and am so grateful you are thinking of us but sometimes I do not have the words to respond. Now that I just spent 90% of my time crying while writing this update I am going to end with some happy pictures of Kyler! Since starting our journey with Children's Mercy, I find myself getting anxious every time their number appears on my caller id. Friday afternoon Children's Mercy called to let us know they had the results of the MRI. We have been wait to hear how severe Kyler's lungs are, if there are any abnormalities on his brain, and how much of his organs are moved up in the diaphragm. Dr. Bennett was who I spoke to and he said that the MRI confirmed everything they saw on the ultrasound. Kyler's stomach and some of his small intestines are up in the diaphragm but his liver is still down where it should be. This was good news as if the liver would move up into the diaphragm it would make Kyler's case even more serious. Additionally there were no abnormalities on his brain or with any other part of his body! The one thing that wasn't in the report that Dr. Bennett wanted to know was the lung volume given in a percentile. He did explain that anything less than 25% is very concerning. We will be praying for a high percentage number for baby Kyler. He has sent the report back and asked for that to be added and I am hoping we will get that information when we go there on Tuesday. When we go to Children's on Tuesday we will have another ultrasound and then have a consultative meeting with the doctors, surgeons, and anybody else who will be caring for Kyler or myself while we are there. We will also get to tour the different parts of the hospital. I am anxious to see the NICU and be able to see the places we will be visiting frequently.
In the meantime nesting has hit at home. This has been somewhat difficult to do with all of the uncertainties we are facing. I want to get things all set up but we don't know if there will be special equipment that we will need to make room for. We also don't know how long we will be in the NICU for, at this point we have heard a time frame of 6 months thrown out so that is what we are going off of for now. Mike and I are both planners and it is so hard to not be able to plan for this with much accuracy. One thing I was able to accomplish this weekend(which felt good!) was to sort through tubs of baby and kids clothes to separate girls and boys clothes now that we know we are expecting a baby boy! As I mentioned I am a planner and I have been scouring Pinterest for articles from other parents who have had babies in the NICU who have suggestions for what take, things to ask, and general tips for our time there. I am not currently at risk for premature labor however, I am also a little paranoid that we will go for an appointment and will be told that we will need to stay there from that point on. I am therefore trying to get my hospital bag and needed items packed and ready just in case. I would love to hear any suggestions from parents who've dealt with a NICU stay or anyone who had advice on what would be helpful to have with us during our stay. Thank you you for keeping Kyler and our family in your prayers! |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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