I always get excited when I come to the hospital in the morning and Kyler is wearing the same thing I put him to sleep in. It means that he didn't throw up overnight! After a good night the doctors approved him to go to three bottle feeds per day at 10ml each as long has his respiratory rate is at 80 or below. Unfortunately today Kyler was not really up for the bottle. He was able to take one bottle feed at noon but at his other feeding times his respiratory rate was just above 80 so we were not able to do the bottle. The night nurse will be trying to give him one if his rate is ok overnight. Not exactly how I wanted the day and feedings to go but thats just how it is. This afternoon the surgeon came in and said the "h" word. Home! It took me by surprise with how his feedings have been going. He said that they are thinking that he cannot handle bottle feeds in large quantities so they thing he will be going home with the NG feeding tube. This is the feeding tube that goes through his nose. They are not looking at a more permanent G-tube at this point. I am not 100% if that is because they don't think it is good on his stomach with the CDH problems or if they think that he will be able to orally feed once he grows more. Either way I was just excited they even mentioned going home. I asked when they were thinking and he said that we would look at that next week, as in they want to evaluate him more over the next week and then start looking at a discharge date. It was also mentioned that Kyler may come home on a little bit of oxygen but it sounds like they would like to wean him off that completely if possible. Today is on 1 liter of air which isn't too much so going home with none could be a possibility. I am a little nervous about him coming home with a tube but I know that they will train us to do the care and everything to make sure Kyler is set up for success. We have had the same day nurse for the last few days which has been so nice having a consistent face. She was so helpful today and was able to give me some good ideas about what to expect about dealing with the feeding tube at home. I started Pinteresting feeding tube information almost immediately after the surgeon left and then started having questions such as, will he have a pump for his feeds or will we have to slow push all his milk and what kind of supplies will we have to have and deal with. After talking with the nurse she told me that he would have a pump and showed me what it looked like, she also showed me the tubing kit that we would use. It was different from what he is using right now. The one he has now is a Bolus pump that slowly pushed the syringe in over a set amount of time and all of his milk comes from the milk room in a giant syringe. The kit we will be using has a bottle to bag attachment system and doesn't use a big syringe. On Pinterest I saw some really cool "hacks" for carrying the pump and its supplies for when you are out of the house and even for dealing with the supplies at home. Last week while I was at home and Mike was here with Kyler, he attended a "NICU Night Out" that the hospital was having. They provided NICU parents with a free meal and had some give aways. Mike received a gift certificate for Thirty-One products and I have been trying to decide what we could use(I really love bags by the way)! After finding out that we may be going home relatively soon and on a feeding tube I shifted my focus to which Thirty-One product I could use as a feeding tube bag for traveling outside the house. I also have been considering what could be used as a dual feeding tube/oxygen bag if we end up going home with oxygen also. I am hoping to find out more about possible oxygen stuff later. Tomorrow Mike and I will be getting more snuggles with Kyler as he continues to work on growing healthy lung!
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"Grow healthy lung"
Those were Kyler's instructions for the day. Even though he handled his bottles well yesterday the doctors do not want to push him too quick and cause damage to his already compromised lungs. They did wean his oxygen down to 1 liter again and he has handled that ok. They want to see his respiratory rate stabilize while on lower air. Once they get a good baseline then they will look at increasing his feeds again. So we got to work on his plan for the day by snuggling. I am a firm believer that snuggling is the #1 prescribed plan for growing healthy lung *this statement has not been approved by the FDA* After a nice morning, Kyler had an even better afternoon when he got to meet Beckie. He gave her some good cuddles and a little spit up! I enjoyed visiting with her and catching up! We ended our day with a bath and then a not so fun episode of reflux. Not long after his bath, Kyler was sleeping soundly in my arms and out of the blue he threw up big time. Feeding tube and all. After getting him cleaned up and me doing a shirt change(luckily I had one with me, cause it was all over me), the nurse attempted to put the tube back in. It would not go in and he was so upset that his nasal cavity was swollen so we decided to leave it out and give him his last few milliliters by bottle. After that he continued to fuss with a sad face from reflux. Every time I got him calmed and asleep and attempted to lay him down, he would start having reflux again. Finally after a while if upright bouncing he was able to stay asleep comfortably. Tomorrow I am anticipating another "grow healthy lung" kind of day. We are also excited to see daddy. We will be missing the big kids this weekend as they get to go to the lake with my family for the Fourth of July. Thank you all for the continued prayers for good growth and healing for our little warrior! Today was another calm day for Kyler with just a few small changes. He had an X-ray early in the morning that didn't show any changes. This means his left lung is still collapsed and the right hasn't gotten any better. During rounds I asked about the left lung and was basically told that it may not be able to remain inflated due to the small size but hopefully it will grow healthy lung tissue as Kyler gets bigger. They ordered an echocardiogram to be done to check on his pulmonary hypertension. They decided that they didn't want Kyler to lose his bottle feeding skills so they weaned his oxygen down to 2 liters and allowed him to take 10ml by bottle two times a day as long as his respiratory rate stays 80 or below throughout the entire feeding. They are thinking that he is breathing too hard while trying to bottle feed larger amounts and that is what is causing him to aspirate. Almost immediately after they rounded, the tech showed up to do his echo. Kyler was not pleased to be undressed and have them messing with him. His being upset caused it to take quite a while and finally I was able to put covers on everything but his chest and he finally settled down enough for them to get the pictures they needed. At his 12:00 feeding the OT came in to help with his bottle and he did amazing with it. She wants to wait on giving him an ultra-premie nipple because she fears that will actually make him work harder which makes total sense to me. I got a lot of good snuggles in with him today and around mid afternoon the surgeon stopped by and said that the echocardiogram looked good! We spent some time playing on the floor and doing tummy time. Kyler is starting to grab at things(like his air cannula) so we got him a couple toys to hold on to. Kyler didn't think those were as fun as his air hose! After his dinner we snuggled some more and then he got a bath. He likes his baths until it is time to get out and that cold hospital air hits him. I just love the smell of him after his bath. The hospital doesn't put lotion on babies but we are allowed to bring it in if we want it. He smells so good after getting a little massage with his lotion and just makes the whole room smell so good! Tomorrow should be a calm day again!
Kyler had a calm day with no changes to his plan. In the morning, he got lots of loving from daddy, Jaida, and Gunner. He was wide awake and attentive as they played and talked with him. After lunch we got to spend just a little more time together before the big kids and dad had to leave to head home. We made the best of it and got to play. Jaida sang to Kyler and got him to do some kicking and moving by singing "Kyler likes to move it move it!" Next Gunner did some peekaboo with him. Jaida also read him a story. Kyler loved getting so much attention from his big sister and big brother. After a tearful goodbye, Kyler and I spent some time on the playmate and eventually attempted some tummy time. He handled it pretty well today but only spent about 5 minutes doing it. Then we got comfortable and snuggled in the recliner for a nap. Kyler was pretty tired from all his morning excitement so he slept pretty much the rest of the afternoon. After I finally had to put him down to go eat, he woke up just a bit and spent some
time in the swing. The nurse made a comment about how she was bored and wasn't sure what to do with her time. Kyler was her only baby and since I was there holding him, doing his diaper changes, etc. she didn't have a lot to do. After I finished dinner we snuggled some more and then it was bath time. Kyker really likes his new tub baths and almost fell asleep in the water! He got a nice little baby massage as I applied lavender baby lotion, which smells so good, and all ready for bedtime. It took him no time at all to start snoozing after all that! Tomorrow we will find out if his lungs are doing better with the air increase after they do an X-ray and we will find out what they plan to do next for him. It was mentioned he may get an echocardiogram to check his heart and make sure his pulmonary hypertension isn't getting worse. I pray that his body has removed any fluid from his lungs and that Thur have reinflated. I also pray that we can find a way for him to get his milk without the feeding tub other more intrusive means. There had been some mention of using an ultra premiere nipple to realllg slow down the flow of milk to lesson the chance that he gets it down the wrong pipe but time will tel what the doctors think is the best move for him. Mike came over super early this morning and they did an X-ray at 6am. The doctors are going to have occupational therapy come by and look at him and they are going to see if they can to the dye test to check the micro aspiration. He didn't take the 6am feeding by bottle at all. Overnight they decreased his oxygen to 1% during the night and he's handled that fine. After the kids and I got up and around we got to to the hospital about 9 and just in time to be there when the doctors rounded. The doctors were excited to meet the big kids and another doctor commented on how much Kyler looks like Gunner! There was discussion about what they were seeing with Kyler and it was decided to stop all bottle feeds for 48 hours to give him a chance to rest. They are feeling like he was just going too hard too fast. To aid in his rest and give his lungs support so they don't get injured anymore they are increasing his oxygen back to 3 liters to try to reinflate the left lung some. I asked about the aspiration and how that is treated if that's what's happening. They said the body will naturally absorb it. So the plan is to let Kyler rest by not doing bottle feeds and on Wednesday they will do an X-ray and figure out the next steps. We spent time loving on Kyler today as a family. Jaida read him a book and later Gunner and I read him a couple books. We lost our neighbor today too. She graduated to a different floor and will be getting to go home soon, I can't wait until it's our turn! Kyler is still growing and is now 7 pounds 13 ounces and 21 inches long. I learned my lesson about not having a change of shirts with me up here. While I was holding him the nurse needed to do a quick assessment and needed to do a diaper change. She asked if I minded her doing in while he was on my lap and I didn't. After getting him a dry diaper and right as she pulled it back to apply cream he sprayed. Thank goodness for reflexes because it got me in the face, chest, arm and it got in his forehead. Luckily we both avoided getting it in the mouth! Mike thought this was hilarious and the nurse felt so bad but we all ended up laughing about it. I have a theory that you can't be a boy mom with getting a little pee on you at some point! It appears that so far the rest is doing Kyler good and his heart rate has been a little lower. Even though he isn't getting bottles for a couple days we were advised by the occupational therapist to give him the paci as often as he will take it to keep him in the practice of suckling.
10:00pm Kyler ended his night with another first! He got to take a real bath! Since his umbilical cord finally came off he got to get in a tub of water for his bath tonight. When we went back to see him after dinner the nurse had just started to give him a bath. I am so glad we were there in time because I wanted to be there for his first real bath. He liked it until the end when he began to get cold. Jaida was the photographer because Mike had dropped us off at the door and didn't make it up in time to help with the bath. The day was spent doing a lot of sleeping. Kyler was not very interested in his bottle for most if the day and preferred to rest. He snuggled with daddy and then got a visit from Grandpa Bill and Grandma Doris. He loves getting to see them. Then he got a visit from Brandi and spent some time talking with her. The big kids and I got up and did some snuggling before getting things together to head back to Kansas City after Jaida's ball game. I enjoyed getting to watch her play and she did so good, getting a hit every time! It was nice seeing some familiar faces and visiting with friends and family at her game. After the game the kids, Grandma Jody, and I ate in Abilene and then hit the road. I thought the kids would sleep, nope they talked almost the entire way there and didn't sleep a wink. As soon as we got the kids ready for bed, I went up to see Kyler. The nurse had waited to give him a bath so that I could do it when I got back. So at midnight I gave him a bath and we tried the bottle. He took about 20ml and then passed out. I snuggled him for a while before I started dozing off and decided I needed to go the house to sleep. I sure missed him while I was gone but Mike sent me plenty of pictures throughout the day!
Kyler had a good day. The doctors are allowing him to bottle feed as long as he isn't breathing too hard and doing what they call a head bob. He was able to take a few bottles today and drank around 20ml most of the time before getting too labored in breathing although he was able to do 40ml one time. They didn't do an X-ray today and they aren't sure when they will do another one to check how his lungs are doing. Kyler got to meet Ryan and Jaxon today! He also loved spending the day with daddy getting snuggled by him. Kyler finally lost his umbilical cord stump today! I have been waiting and watching that darn thing which was holding on just to spite me! The last day or so it was literally hanging by a thread! Mike received a thank you from one of the surgeons for him and I being present and involved with Kyler. This was a surprise to hear because we can't imagine not being there with him whenever possible. We have said time and time again that we are blessed to be surround by such an amazing support system that allows us to devote the time and energy towards being with Kyker while knowing our other two babies are being loved and well cared for. We are also very blessed in the timing of this journey. I, as a teacher, have no formal commitments during this summer which allows us the chance to be more present than some parents are able to be. I have learned recently that while most parents try to be present with their babies in the NICU, not all try. I had noticed that since we moved rooms, the baby across the hall hadn't seemed to have any visitors. Finally I saw a man and woman go to his bedside and I mentioned to our nurse that that was the first times I had seen them and she replied "that's social work, not parents". It is so heartbreaking to know that there are babies up there fighting for their life and the only contact they are getting is a revolving door of nurses, who love those babies but they aren't able to provide a constant person for those babies to bond with. Please say an extra prayer for those babies that they are able to find loving and stable homes after they graduate from the NICU. I enjoyed my day at home with the big kids getting to do some normal things. We woke up and then snuggled on the couch together watching cartoons. I have missed having a couch to sit and lay on. In our room at the RMH we have two full beds and a padded bay window. At the hospital there are office chairs and a recliner that leans back just a little too far for comfortable long term sitting. After cartoons we met up with Miranda and I was able to get a pedicure, a much needed treat for my feet after 9 months of pregnancy and nonstop tennis shoes for the last month. Miranda even treated Jaida and let her get her toes done! Gunner got to choose my polish color and of course choose green. Jaida said it was Grinch Green and I think if looks like hulk it dragon green! We then got to eat lunch with Miranda and Val and then did some swimming. While it was a fun day together I missed Kyler terribly and checked in with Mike often. Mike was very thoughtful and sent me pictures of Kyler throughout the day and we even Facetimed a couple times. I am excited to get back to smother him in kisses tomorrow evening after Jaidas game! Thank you all so much for the love, support, and prayers for our family.
Today reminded me of Chutes and Ladders. At times you can make advances and then suddenly you hit a chute. You know the chutes are there but landing on one still can take you by surprise. Today our chute was too big but it is bigger than we would have liked. Kyler had a decent night and too between 20ml and 30ml for his bottles. In the morning he didn't take much from me either. Mike arrived just before his noon feeding at which Kyler was really not very interested in eating. In an attempt to wake him up and make him more alert to eat, I changed his diaper and stripped him down. While he was bare, Mike noticed that his chest was caving in quite a bit in the center. I had noticed before but it did seem more pronounced today. I hadn't thought much of it because he doesn't have a lot in his chest and I assumed it was because there wasn't much there to help it push out. Then nurse went ahead and called in to the doctor who said they knew about it and it was pretty common with CDH babies and they didn't seem concerned. We left to grab lunch and get me packed up and ready to head home. After doing those two things we we back to see baby boy again before I hit the road. Mike dropped me off at the front doors and as I got to his room right as his milk warmer sounded off, I was met by an X-ray tech there to take pictures of his chest and abdomen. Turns out after we left the doctor called back and wanted to do X-rays to make sure they weren't missing something. After they got done I peeked a look at the screen and from my untrained eye it looked like the left lung was not expanded and filled with air. The X-ray tech was done and gone before Mike was able to park and get up to the room. So where my plan had been to kiss baby and then head out, I had decided to stay for a while to wait and hear back from the doctor. They also took his blood to do blood gases to check levels. The blood has came back good but the X-ray showed that part of his right lung had started to collapse also. "Chute", they ordered for him to be placed back on the high flow cannula at 2 liters. This change will give him quite a bit more air support in the form of pressure to help his body keep his lungs inflated. There are a few reasons it may have collapsed such as fluid pressure, over exertion, or possibly micro aspiration. They told us at the time that he could still do bottles but after I had left and had called Mike to check in, they had changed his orders and are going to give him some rest days from the bottle so they can get this issue sorted out. In the grad scheme of this this isn't a huge setback and consider all of the amazing things he's find so far it is almost as if he was due for some setbacks. Oxygen support is pretty much top of the list of needs for a baby with CDH and I hope he can heal and wean back down but it seems like our little warrior was just pushing too hard, he wants to come home as soon as possible too! Speaking of home it is comforting yet odd to be back in my house after being away for over a month. It's nice to be in my familiar spaces and yet sad that two parts of my heart are still in KC. I struggled with leaving Kyker much more than I thought I would and the lung issue doesn't help, though I know he's in good hands with God, his daddy, and the amazing doctors at Children's Mercy. I am so excited to spend the day doing whatever we want tomorrow and just being home for a small time! Please send up some extra prayers for Kyler with this current lung issue.
Love, The Moran's Today has been an exciting one after not the best night. Last night Kyler gave the nurse a fit and refused to take pretty much anything by bottle. He would gag every time she tried so he ended up getting all his feeds through his tube. We had a good morning and had one time where he only took 20ml. The rest of the day was spent snuggling. Then the first exciting thing happened. Paul Rudd walked by with a group doing a tour and paused outside of Kyler's room and smiled at us. It didn't dawn on me who he was until he had started walking away. He is in town with a bunch of other celebrities like Eric Stonestreet and Jason Sudeikis for a charity fundraiser called Big Slick Kansas City. So it was really neat seeing him and I wish I'd have recognized him sooner but you don't think about seeing someone famous out of the blue like that! The next exciting thing today was that our little warrior drank his WHOLE bottle!! I am so excited I could scream it from the roof top!! He promptly passed out and was in total milk coma mode! I am just so excited. The nurses have mentioned that he does his best eating for me and nights are definitely worse so I am thinking that we may need to look into me staying the night to do his feedings if that would help him get stronger and make it possible to go home sooner but hopefully he will start eating well for others. We are so thankful for your continued prayers, they are working!
11:45pm He did it again!! He took another bottle completely!! He did have some spit up but the nurse and I think it was from getting the residual multivitamin pushed into his tube on an empty stomach. I hope he does well for the nurse tonight, she watched me do his 9:00 feed and I tried to give her tips for handling his cues! Kyler had another good night with one small emesis. His emesis lately have been caused by mucus and haven't been very large in amounts so while the nurses still track them they aren't appearing to be concerned by them anymore! He is making small gains on his feedings and today he had 3 feedings that he took 48-50ml! On Kyler's side there wasn't much excitement today and he is just having calm days of progress. On my side today there was a little excitement and I am using that term lightly. Around early afternoon I had been talking on my phone and got the low battery signal. This wasn't a surprise because I last got a phone when Gunner was not quite a year old and I have been getting that message regularly for a while now. So often that I have taken to carrying a charger or battery pack with me almost everywhere, like seriously I have 1 in my pumping bag, one in the car, and one charger plus a battery pack in my day bag. Anyways I finished my call and put my phone in my day bag and went through the Orbits cafeteria here at Children's Mercy. After I got seated I pulled it out to check out Facebook while I ate. It wouldn't turn on, again no big shock to me so I pull out the charger and luckily was sitting next to a wall outlet. Nothing happened. If you didn't know I am pretty decent with electronics and computers so I assume the outlet doesn't work. After eating I plug it into a couple different outlets in Kylers room. Still nothing. So after trying my last attempt at reviving the phone by factory reset(which didn't work) I was finally resigned to the fact that my phone was done, finite, beyond saving. I have to say the phone did pretty darn good to last as long as it did, especially considering his almost exactly a year ago it accidentally fell out of my back pocket into the toilet! So here I am in KC with no phone. Luckily today was a day I had brought my laptop up with me and I was able to use the messages app to let Mike know what happened so he wouldn't be worried when he tried to get a hold of me and couldn't. Next step was to figure out where a store was so I could get a replacement. Oh and I had to drive there with out GPS! I was able to find a store in an area of town that I had just been to in Sunday and I was able to print directions and a map-it felt so retro! Thankfully last week I noticed the phone doing some odd things and I backed it up that night(so glad I didn't procrastinate on that one!) so I didn't lose very much. I decided I jinxed myself because while visiting with Uncle Billy yesterday I mentioned how I had just backed mine up because I thought it was acting up and then the phone ended up working just fine. So here I sit rocking baby boy to sleep after I was able to get a replacement and some dinner!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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