Today was frustrating. There is nothing worse than seeing your baby in pain and not being able to do anything about it. First thing this morning while getting his feed ready to hook up, I noticed the spot where his bottom sutures enter his belly were discolored and had pus around them. The area was slight red too. I showed it to the nurse and she got some soapy water and sterile water to clean it. Kyler screamed every time the Q-tip touched anywhere near the area. I had just gotten the area cleaned up and dried when the surgery team stopped in for rounds. I showed them and said it was common and then after seeing one of the spots really pus up they decided to take that one side out. I continued to clean it the rest of the day, pretty frequently, and it started to look better. While surgery was doing rounds they said that they would try Kyler with no oxygen support! They also said that he would get an echo to check his pulmonary hypertension to see if he would even be able to stay off oxygen but he could start trying to be off it and the echo would be done later. They also said that we might be looking at going home THIS WEEK! Of course it all depends on Kyler and the way the rest of day went left me feeling like we may not get to go home this week after all. First Kyler was super uncomfortable from the g tube pretty much all day. It was red and the slightest touch near it made him cry. As the day went on and by the evening the last suture was starting to leak pus and look bad too. Luckily they said that they would take that one out tomorrow since its getting red and pus filled. At 10:30 am they took him off oxygen and removed the hose from his face! We watched his stats and the clock pretty closely for a few hours. He did great! His stats stayed in the upper 90's and mostly at 100% all day. His heart rate was higher still and his respiratory rate was higher but it had been higher since the surgery so we aren't sure if that is from the no oxygen support or just a reaction to the pain and tenderness of his tummy. A little after lunch the surgery nurse practitioner came by and talked with me. She said that they were going to wait until the morning to do the echo so I will be heading over pretty early to be there for that. Kyler had thrown up a couple time in the morning so I mentioned that to her while we were talking. The last one he had thrown up had brown specks in it. She said it was left over old blood from his surgery. As the day went on Kyler continued vomit pretty bad. We went through 5 outfits before I left him in just a diaper and a hospital sleep sack. This was the frustrating part of the day. I had really grand hopes that getting the G tube would help with some many things and so far I haven't seen much benefit. Kyler is cranky, sore, vomity, and just inconsolable at times and it breaks my heart. He is also pretty much refusing all bottle attempts which is very disheartening to me. I had so hoped that getting the G tube would relieve some pressure and he would start taking off with bottle feeds. We ended up asking the doctors to sow his feeds down to an hour instead of half hour to try to get his vomiting under control. I know his tummy hurts and I think we are forcing(that what the pump does) too much in right now. One of the team members I talked to today mentioned that the balloon that hold the Mickey button in place takes up stomach space and Kyler will have to adjust and let his stomach grow to accommodate the volume of milk he's been getting plus the balloon. I am having such a hard time processing and trying to figure out what's the right thing for Kyler with his feeds. We are walking a very thin line of not pressuring him to take a bottle for fear of making him have aversions to the bottle(they are supposed to be pleasurable events and forcing him makes them negative) and encouraging him to try so that he doesn't lose his oral skills. There is also the high possibility of gagging him when trying to encourage him. It is stressful for me and 1/2 the time I just want to say forget the bottle and do all tube feeds and the other 1/2 of the time, I am desperately trying to get him to like his bottle. I try to tell myself that it's okay and the worse case scenario is that he will just get all his food through the tube because there really are worse things but it doesn't make it any easier knowing that my baby struggles so much with something that most people don't have to even think twice about. The once positive from today was the mentioning of going home this week, emphasized with a big MAYBE. The weekly plan is to see how Kyler does off oxygen(make sure the Echo doesn't show a need due to pulmonary hypertension) and then work towards getting home at the end of the week. From what I can piece together, because nobody is talking specifics yet, there are plenty of things that need to happen. #1 They had to decide how Kyler will go home(oxygen or no oxygen) and what medical supplies we will be needing at home. #2 They have to work with our insurance to contract through a medical supply company to get said supplies to us at the hospital and then on a long term delivery set up at our house. #3 Kyler will have to pass a car seat test. This includes his car seat first being run through a database to make sure there haven't been any recalls or issues. Then he will have to sit in the car seat, in the hospital, and attached to monitors for about 3 hours to make sure he can safely make the trip home without his stats dropping. #4 PCU-I have not idea what that stands for but it is where we have to stay the night in a "parent room" with Kyler to prove that we are competent and able to take care of his special needs. He will not be hooked up to monitors and the nurses will only be there if we have a question. It's basically a trial to your first night without a nurse taking care of the baby but having them there in case something comes up.
Those are the rough steps for us to get discharged from the hospital. Since hearing that we are possibly that close to going home, I have been doing some slight panicking. I am worried about Kyler coming home on no oxygen and no monitors(although I am very excited about no wires to mess with). I have been considering getting an Owlet pulse oximeter to be able to "spot check" his stats at home, especially during times where he sounds congested or may be appearing to have trouble breathing. I do not want to have to wait until I see him in complete distress to know he is struggling and needing assistance sooner rather than later. I also have been wondering if I need to get a video monitor to be able to keep a better eye on him. We have an audio one but my fear is that he is "silent puker" and I will not be able to tell by listening if he has thrown up whereas on a video monitor I could visually see. I am not 100% sure these things are needed and if it wasn't for his condition I wouldn't even consider them but I do worry with him. I am also trying to visualize what life at home is going to be like now. Where will I put all of his g tube stuff, where and how will I set up his feeding area, etc. If you haven't been able to tell from any of my posts in the past, I am a planner and not knowing the best way to plan for this unknown territory is hard for me. Things as simple as clothes for Kyler now have to be given extra thought. Regular onesies don't accommodate the g tube easily so I have found some side snap onesies online and I will be attempting to sew "button holes" in some of his regular onesies to allow the g tube connection hose to connect without having to undress him each feeding. I will be relying on my mom and grandma's help with learning how to do that. While I am excited at the idea of getting to come home soon, I am also very nervous. I am also worried that my hopes have been raised about getting to go home soon and then with all of the puking Kyler did today, I am afraid that is going to push our home date back. Tonight I am asking for prayers for Kyler's tummy to heal and stop causing him pain, for his vomiting to lessen(I don't think it will go away completely for quite a while), and for his echo to show that his pulmonary hypertension is minimal or nonexistent. Thank you all so very much for the continued support and prayers, they really do mean so much to us!
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Today had a challenge that wasn't exactly related to Kyler but it did have to do with him. We had an issue with his assigned nurse. I have to say that in our time here almost all of our nurses have been good and most I would go as far as saying were great. Today's nurse did not fit in those two categories. We have had this nurse a few times and each time was stressful. The first couple times we had her she was very scattered in what she did, never wrote anything down, and then kept asking me at the END of her shift when Kyler did certain things like poop and how much he at a certain time. I thought that was pretty crazy since that is kinda the part of the job that I can't do for them(because I am doing most everything else). This is also the same nurse we had when Kyler got moved from the ECMO suite to E44 and she didn't notify us like she was supposed to do(we had gone to dinner and came back to an empty room). We had her again once we moved to our current bed space. That day Mike walked in to find Kyler all twisted up in the wires, diaper wide open, and laying in a pile of his own vomit. He had been that way for a while because he was fast asleep when Mike found him. Today we had her again. Mike was over with Kyler early again and his alarms were going crazy for at least 5 minutes while she never came to check on Kyler at all. When she finally did come over and started his assessment before his feeding, Kyler needed a new diaper. In the middle of her changing Kyler's big poop filled diaper the baby next to us(her primary) had alarms start going off. She stopped mid diaper change, left him wide open, and went to deal with the other baby. Kyler ended up having poop all over his identification tag and the blankets under him. Mike said something to her about it and that we needed a new nurse. We have not been pleased with the care she is giving Kyler. I got there shortly after that happened and I didn't even see her until 11:30 when she quickly dropped Kyler's milk in the warmer and then ran out again. During the time she was MIA, Kyler had pooped and vomited. Both of which are things she needs to chart. Finally the head nurse came to talk to us(she must have called them) and asked if we needed a new nurse because the nurse we had was under that impression. We explained briefly that we have had issues on the other days we have had her and we were ready for someone new. She said that she would make a "baby for baby" switch with one of the other nurses on the floor. While we were talking to her I requested to have a nurse by the name of Carol as our primary. She is who we have had a lot when we were on E44 since she was the primary for the baby in the same room as us. I had never felt like we needed a primary until now. Mike and I had run into Carol the day or two after we moved rooms and she had asked if she could be our primary cause her current primary was getting ready to go home. Carol is a very experienced nurse and she has helped me tremendously with learning about the feeding tubes(ng and g) and she knows Kyler really well and is just really pleasant to have as a nurse. The head nurse took our request and said she would see what she could do. We got another nurse and the rest of the day the old nurse continued to care for her primary right beside us. It was not a comfortable feeling seeing her all day. I felt bad for us having asked for a different nurse. I don't like that we probably made her feel bad or upset her but we needed to have someone we felt confident with leaving Kyler with(even though we only leave for short periods of time).
Other than the nursing issue we had a pretty good day. Kyler got the IV out of his hand and was weaned down to .1 liter oxygen(where he was before surgery). He had some episodes of vomiting and I am not sure if it is from reflux or from his tummy still being tender(having the full amount of milk pressing into his sore stomach and tummy). I was able to get him to lay on my chest, belly to belly, which is the best position for him to not throw up. He seemed to tolerate it fine and it didn't hurt his G tube too much. His heart rate and agitation were higher a couple times today so he got a dose of Tylenol to help make him comfortable. When the surgeon team came by they said that they are going to try him tomorrow with no oxygen tube. I am not sure if they will leave the cannulas in his nose and just turn the flow off or if they will take the hose off his face completely. I am really excited and nervous to see how he does. I don't think he needs the oxygen all of the time but I am nervous for him to come off completely just in case something were to happen. As we get closer to talking about coming home I want to ask about the possibility of having "back up" oxygen for home incase he catches a cold or something that will hinder his breathing. We have a couple more days before the surgeons will take out the sutures around his Mickey(Mic-Key is the real term) button. Once those come out we basically will treat it like a new piercing, keeping it clean and spinning it once a day. I am currently trying to adjust to the extra steps of the G tube like venting(burping) before and after a feeding, clamping when I need to, and also trying to figure out how I am going to set his stuff up at home to make it accessible without it getting overwhelming. Today was a good day for Kyler. Mike got over with him early this morning and then I joined them around 9. Kyler had had a good night and he got weaned down to 1 liter on the high flow machine from 2 liters. His plan for the day was to get a couple 1/2 volume feeds pumped through the g tube before trying any oral feeds. He tolerated the first one fine and the next one they increased him to full volume already with and ok to try oral feed too. He was passed out so he did not take that feed orally. Kyler did have some emesis last night(all mucus) and today (runny and mostly clear with some milk) so we will be watching that still. This afternoon he got switched from the high flow machine to the wall oxygen which is the same amount of support just a smaller air hose. I took advantage of the switch to really see and get a picture of Kyler with nothing on his face. It was so nice to see but unfortunately the oxygen had to go back on again until they decide if they can get him off it. Mike and I took turns during the day doing his feeds with the g tube and hooking it up. The hardest part of the process(so far) is setting the pump which luckily I've been practicing for a while, the g tube part just has different connection points. The worst part of the g tube right now is connecting the tubing. It makes Kyler very uncomfortable and sometimes makes him cry since his tummy is still tender and sore from the surgery. There are thing that I'm sure we will mess up once or twice as we get used to the new process like venting him and clamping and unclamping at the right times to avoid spilling his stomach contents everywhere but it hasn't felt too daunting so far. Sometime
in the afternoon Kyler seemed really agitated and fussy and his heart rate was 175 which is quite a bit higher than it had been. I asked the nurse about giving him some Tylenol(he can have morphine but we are trying to avoid using it) and she got him a dose. Within 20 minutes of getting the Tylenol he settled and his heart rate came down to 130-140s. We got Kyler on the couch and played and read to him for a while and by the time his bath was done in the evening his heart rate was rising and he was becoming agitated again so he was going to get another dose. Hopefully his tummy won't be sore for too much longer. He also got the IV fluids disconnected at 9 since he taking full volume now. Tomorrow the IV in his hand should come out which will make him more comfortable as well. Today I noticed he wasn't as puffy, especially in the area on his head where his soft spot is a little larger than normal. The diarul kicked into gear fairly quickly. Kyler also had some good stools today without the help of a suppository, it would be really nice if they cancel that medicine. After tucking him in for the night we took at trip to our friends house to see their set up for their son Gunar who also has a g tube. It was really helpful to see how they have stuff organized and to be able to pick their brains about some questions for things we might need to know for Kyler's care. Surgery day. We got up super early(in my opinion!) and are over at the hospital. Kyler had a good night after we left. He got his IV and I was surprised to see him in a different bed. The nurse said that it's protocol for babies going to the OR because they can have trouble regulating their temperature after surgery and the other bed has the warmer. It also has a probe plug in that allows them to continuously monitor his temperature afterwards. So now we are just waiting for the surgery and we have plans to take a CPR class this afternoon.
9:30am Around 9:00 they came to take Kyler down to the OR. We got to go with him and waiting in a holding area until they took him back. The surgeon Dr. Snyder came to visit with us and said they will attempt the g tube laparoscopically and use a camera to see about placing it. There is a small chance that they may have to open him up to get to things and that he may need a tube instead of the Mickey button for a while. We signed paperwork to agree to being part of a preference study in which upon consent the doctor opened up a sealed envelope that had which type of button Kyler would get. At two months he will get it switched out for the other kind(mini). Then at four months we get to choose which kind he will have. They are doing his study to find out what parents like more. They took him back at 9:28 and the procedure should take 30-45 minutes unless they need to do the open incision to get to the stomach. He also is getting his circumcision at the same time so luckily that's one less procedure and pain he will have to deal with in the future. 12:00 pm Mike and I waited in the Ronald McDonald Room while Kyler was in surgery. I was starting to get anxious around 10:20 because we hadn't seen or heard anything yet. At 10:40 Dr. Snyder came and visited with us. He said it went well and they were able to put in the Mickey button laparoscopically so they did not have to do the open incision. They ended up going through his belly button with the camera and the instrument went in just to the right(looking down at him) of the belly button. They intubated him to protect his respiratory status during the procedure and are leaving that breathing tube in until he begins to wake up and they can start weaning the ventilator settings before removing the tube. They are going to be very cautious with this process since he has a lung disease(just what the they call his impaired lung function) and they don't want to take backward steps by trying to wean him too quickly. Dr. Snyder also said that he had an umbilical hernia which is why his belly button pushed out when he breathed so since they went in through the belly button with the camera, they fixed the hernia when they were done. We got back to his room just minutes before they brought Kyler back. They did not have him stay in the OR for recovery and brought him back up to the ICN. It was kinda crazy in here for a while. There were at least 9 people(not counting Mike and I) working on him, getting him situated, getting post op vitals, getting his ventilator set up for staying in the room, and team to team report. Kyler will not get any feeds until tomorrow sometime while he gets time to heal so they will be giving him fluids, TPN, and lipids via IV until he resumes full feeds. He is getting to use the Mickey button(g tube) for venting which is burping him and letting him release any built up gas in his belly. They are starting up his medicines again along with some pain medication for comfort. If he ends up taking longer to extubated(take out the breathing tube) and is too alert and moving they may have to give him some sedation to keep him still and comfortable until it can come out. He is breathing on his own with some help from the ventilator and they had to up the alarm limit because they had it set too low and he was breathing more than what it was set for. It is hard seeing him so restricted again. The last time we saw him like this was in his first couple weeks while he was on and in the ECMO room. He was covered in the antiseptic stuff they use to wipe him clean before surgery so I was excited to get to change his diaper and then use wipes to clean off as much of the yellow gunk as I could. He will have to wait until his external stitches come out(in about 5 days) before he will be able to have a regular bath again. Mike and I will be heading to the CPR class in just a little bit and it turns out to be a good time for it. I wasn't sure if we should do it while he was recovering but we will not be able to hold him until he is extubeated, additionally his tummy is understandably tender so we will be more "hands off" for a little bit. Thank you all for the prayers for his doctors and for him to make it through the surgery well. We will now just be waiting for him to wean off the vent and for him to start feeds through his new g tube and pray that he has no issues with the g tube feedings. 9:30pm Once again our amazing little warrior showed how strong he is. When Mike and I returned after the CPR class Kyler was stirring and was breathing better than the vent was making him. The doctors ordered for a blood gas to be taken and after they got the results(which were good), they decided to extubate him! We didn't think that would happen until late tonight but our Kyler is amazing! I video taped the process and got to see his sweet face without anything on it for just a brief moment. I can't wait until I can see it with nothing in the way! We got him comfortable in bed and just let him rest. The NICU was holding another NICU night out so at dinner time Mike and I went to that. After that was over and we got back to the room, Kyler was sleeping soundly on his side. I was surprised he was comfortable laying on the side of his Mickey button. Right around shift change he started stirring and fussing and I asked to hold him. I had the nurse help me get him with all of the tubes and cables on him and his tender areas. He and I rocked for a while until it was time for his bath. We gave him a wipe bath and he handled it pretty good. They have had a vent attached to his Mickey button to help him release air and junk from his tummy. When we started with him the container was empty which I didn't realize was odd seeing as how when they first attached it, it instantly started filling with mucus but now was empty. As we got him unsaddled and ready for the bath I noticed the tube was kinked and as soon as I fixed it the juices began to flow. The secretions were red brown from the blood from his surgery and mixed with more mucus. He also got his suppository again since they also started his meds back up. I thought he was going to have a hard time with that since it would cause him to push and strain against his sore tummy but he did really well with that too. After getting him dresses and having to switch out his fresh sleep sack after a venting accident(I may have let the secretions spill on the sleep sack #lessonlearned) he was ready to go back to sleep. Kyler did have one low score on his blood draw and that was his hemoglobin which was a little low. Tomorrow when they draw again they may decide to give him a transfusion to help with that and it could also aid him in healing. It is also the easier option to raise his hemoglobin vs having to hook him up to TPN and lipids and waiting for his body to produce more. Tomorrow his plan should be to try some feeds but when he will get to try will depend on if he gets the transfusion or not. If he gets one he will have to wait 4-6 hours after getting the transfusion before he can start feeds. We are now going to get some sleep and while Mike will most likely be up super early, I will be sleeping a little later and then heading back up with Kyler. Thank you all so very much for the prayers for Kyler today and for the prayers you continue to send our way! Kyler's 10 week Birthday has started off interesting. When I was leaving the RMH this morning the desk lady called To me and said she needed to talk to me. There were a ton of people and a lot of hustle and bustle going on. Turns out the basement flooded and they are trying to reloacte everyone to the other houses if possible but they aren't sure there are enough rooms. I was asked if we could sleep bedside tonight if we had to and I told them yes. I figure they are trying to get the families that have kids staying with them a room first since kids are not allowed to sleep bedside. Luckily we had already made plans for the kids to stay with Grandma Jody for the weekend so that we can focus on Kyler and his recovery after the G tube surgery. Which comes to the next part. Apparently all week the doctor thought that today was the 28th so Kyler will not be having his surgery today. I am very disappointed and pretty upset that all week I have been told "Thursday" only to find out it was scheduled for the 28th which is Friday. I have been preparing mentally for Thursday and now even though it's only a day later it also means that's an extra day that we don't get to go home. I am so hopeful that this gtube will allow Kyler to get rid of some mucus build up from having that tube down his nasal and throat cavity and then in turn start bottle feeding better. I am getting to the point of getting very tired of being here and it being at home as a whole family. I am also hoping that once the surgery is done then we can start having serious conversations about getting to go home. I would love to be able to bring him home in time to celebrate Gunner's 4th birthday and see both big kids off to their first day of school. So for today we will just be waiting. Waiting to find out if we can sleep at the house and waiting for his surgery. Please say a quick prayer that something else doesn't happen to cause the surgery to be put off any more days.
Update Since Kyler's surgery didn't happen, Mike was able to catch some sleep on the couch while I snuggled with Kyler. A little after lunch the RMH called and let us know they had a room for us at the Cherry St. house. We left after Kyler's 3:00 feed to go move our stuff over. It's amazing how much stuff we had collected in our room after staying for 2+ months. As we packed I went ahead and sorted out some stuff to send home that we don't need here anymore. We got moved over and the space isn't as big as we had but there is a bed and a bathroom and that's all we need. After getting stuff moved over and getting dinner, we went back up to Kyler. They had stopped all his medicines in preparation for surgery tomorrow and we fed him early so that he could eat a littler early before midnight when he wouldn't be allowed any food by bottle or tube. He wasn't allowed to have his regular bath due to needing to be washed with special wipes that kill germs and continue to kill germs even after he's dried. I think they were called beta chlorine wipes. He has to have two wipe downs with them 24 hours prior to surgery so he will get another wipe down at 3:00am or 6:00am. After that we tucked him in and headed to the house to sleep so we could be back early before his surgery. He had plans to get an IV for fluids at midnight. Thank you all for the continued prayers and we pray that things go well with this surgery. Especially that he is able to handle the breathing part when they put him under. Exhaustion was the word of the day. After finally getting to bed around 2:30am, I then was back at the hospital at 8:30am. That coupled with the gloomy rainy day here in KC made staying awake extremely difficult. Kyler and I snuggled on the couch for most of the day and after his lunch I put him in his crib to sleep while I tried to sleep on the couch. I was so tired that I let the nurse do his 3:00 feed so that I could sleep a little bit longer. I am a person who enjoys my sleep and needs to get sleep to function. It's like being "hangry" but with sleep instead of hunger. The most exciting part of the day was after Kyler puked all over the day nurse right as her shift was ending(so much she had to switch into a clean shirt) and getting his bath he took 25ml by bottle. This was the most he's taken in a while so that was good. We did end up moving him to a level one nipple for a slightly faster flow on his bottle. It's kinda a fine line line when feeding him. We have to really watch his cues to know when to pull the bottle back if he is getting too much too fast or when he is resting between sucks and he milk is still dropping out from the bottle. Hopefully the G tube will allow him to be less adverse to the bottle and we can make progress that way. As I got back to the house I was very thankful for having gotten my laundry done(even at having to stay up so late to do it) because the whole basement was closed when I got back and I wouldn't haven't been able to do it then.
Today the kids headed home with Grandma and Grandpa. Before they left they all got in some additional snuggles with Kyler this morning. He had a decent night but didn't do much by bottle. When I got to him in the morning he was very fussy and continued to be fussy a good portion of the day. At one point I could feel a trapped gas bubble rolling around in his belly. He wasn't interested in the bottle and only took 3-7ml each time. During his noon feeding he got his two medicines and that darn vitamin hit him hard. He threw up his entire feed and the feeding tube. It was all over him which required a mid day bath. After getting him cleaned up, he and I snuggled. The nurse practitioner came in and I shared with her about him throwing up and she was going to see if they can cancel the vitamin since he is full formula now and should be getting his nutrients from that. I am hoping the doctors agree because Kyler can't stomach it. Before his next feeding I got to put his tube back in. I got it all ready and did the whole thing. The nurse actually thought I might be in the medical field but I told her I've been practicing with the other nurses just incase the g tube doesn't work out and we end up with the ng tube. I feel pretty confident in doing it now and am even able to program the new pump now. After his afternoon feed we got a surprise visit from Grandma Jody. He snuggled with her while trying to work out those gas bubbles and she got to stay for his bath time. After Grandma left, it was time for his bottle. He was really agitated with it but trying to suck on it. I wasn't sure if he was mad because it wasn't giving him the milk quick enough(he is on a premie nipple that slows the flow) or if his tummy still had gas and he was uncomfortable. I feel like it might have been too slow for what he was wanting because when I gave him the pacifier he went nuts and was sucking on it feverishly. Tomorrow when the occupational therapist comes for her visit I am going to ask about it. The hard part is finding the balance because if the nipple flows too fast he gags and chokes on it but if he is having to work too hard to get the milk he tires out or gets frustrated and quits. I don't know what the answer is but perhaps we will give the next size a try and see how he handles it.
I left the hospital earlier than normal to get back to house and do laundry. Kyler is down to just a couple shirts(which he could go through very quickly) and my bedding is needing washed after an accident while the kids were here. I got back to the house and took my stuff to the basement to find all of the washers in use so I asked the front desk if I could use the industrial washer the staff uses since it wasn't being used. I wasn't allowed to use it so I looked at how much time the washers had left and went back to my room. After the time had passed I went back down. All three washers finished within minutes of each other. I ended up waiting 45 minutes after they were done washing for someone to come switch them over. I was afraid to pull them out and set them in a dryer for fear of the owner getting mad at me for touching their stuff. So finally I got my stuff washing but will be up for another hour and half waiting for my turn to put my clean clothes in the dryer. Hopefully tomorrow I can rest with Kyler during the day because I think I am going to be one tired mama! Today was a good day for Kyler. He was much more interested in his bottles today and drank some each time. He also was able to keep everything down all day. He had one spit up right after his bath and it looked to be medicine and mucus. He spent the day getting loved on. Since we got moved to a new room I wasn't sure what time the doctors would round and today it ended up being 1:30pm! This was so late compared to 9:00 am like we have been used to. There weren't any changes today but they have decided to attempt to place a G tube. They are working on getting it scheduled for sometime this week. It sounds like they will go in with a scope first and look at his internal organs and then if the surgeon likes what he sees, he will place it, if they don't like what they see then they will back out and not put in the g tube. The doctors today also mentioned trying to wean Kyler off oxygen after his surgery. If he is able to get off the oxygen and get the g tube placed then Kyler will finally be cord free! We have yet to see his sweet little face without something on it and I am looking forward to that moment. I am both excited and nervous about the possibility of him getting off oxygen completely. Most of the time I don't think he needs it but then I really worry about when he catches a cold or if he gets really cranky(he's usually a pretty calm
baby), what is going to happen then ? How quickly will he desat without oxygen there for a boost? All sorts of what ifs that I just haven't worried about asking the doctors yet because it has seemed premature. Tomorrow the big kids will head home with my grandma and grandpa. It has been nice having them up here for a longer stay but they are getting stir crazy. They behave really well most of time(sibling quarrels) but it's hard for them to keep it together for such long times. Tonight I am asking for prayers that the surgeons are able to get is in for the surgery sooner rather than later and Kyler's anatomy is well enough for the G tube to be an option for him. Our first day in the new room was great. We had plenty of space to spread out and enjoy being together. Kyler wasn't too keen on his bottle again today but didn't spit up much either! When Mike got over to the hospital Kyler was pretty tangled up in cords, his air hose was completely out, and he was laying in some spit up. After talking to the nurse about it they moved some of his wires so that they were piled in this bed with him. Later we got him down on the mat and we all played with him on the ground. That ended up wearing him out and he was passed out pretty hard! Later in the afternoon my grandma and grandpa came to visit. Since they are staying a night or two I kept the kids here to have more time with them when Mike headed home to get ready for work tomorrow. I was able to get special permission for both grandparents to come back to bedside at the same time with me. That was really nice because we could sit and visit without trying to rush and switch turns and feeling bad about leaving one person sitting in the waiting room by themselves. After Kyler's bath he took a really good bottle and drank 35ml! He also got upgraded to a big boy pump for his milk. Lately they have been having to do two syringes for his milk since he hasn't been taking much by bottle and the biggest syringe only holds 60ml. The new pump attaches to a bag that holds the formula and then pumps it to his feeding tube. Tomorrow is the day that hopefully we will get to hear from the surgeon who did his CDH repair and find out his thoughts on feeding tubes and see if there are any new plans for the week. Tonight at bath he was measuring 22.5" long and weighed 9#4oz. I am betting his amount of formula will go up tomorrow since it usually happens on Monday's after his weight from Sunday night.
The thunder rolls and the lightning strikes... my day ended with me sprinting from the parking lot through torrential downpour and when I was just steps from the safety and protection of the porch I came to a flood of water covering every access way to the house. There was no avoiding it. Jumping would have probably resulted in a crash and burn style landing so I took as large of steps as possible and made my way through. The water came up to just above my ankle, successfully soaking both of my shoes all the way through.
Earlier in the day Mike and Kyler got to spend a lot of time together. After the kids and I joined them at the hospital and took turns holding Kyler and loving on him we got a visit from Aunt Miranda. After his feeding which he refused to take any by bottle, the kids and I left with Miranda to look for some school clothes for them and me. Mike was left to "man the fort" while we were gone. Kyler was breathing a little faster today and had to skip a feeding due to that and the others he just wasn't really interested in. His best bottle today was at his 9:00 feeding. This morning during rounds there was another surgeon with one of the ones we see pretty often. We have seen him before and he is he surgeon who sat in on our consult meeting back in March. We talked with him about the ng tube vs g tube and he made a little bit of a face at the g tube suggestion but then took the time to look at Kyler's incision and did some feeling around on his tummy to assess him. He then asked our opinion. I was thankful he took the time to ask. I told him that I understand that the g tube is safer if its possible but we would be ok with the ng tube as well. He said that if he will not be needing it in a month then we shouldn't do the g tube but the other surgeon and is agreeed that we think it will take longer than a month to get to full bottle feeds. He also was started talking about how if the ng tube comes out we would have to take Kyler to get it out back in and we shared that I have been practicing putting them in(I got to do it again tonight after he threw it up before his 9:00 feeding). He also said that some parents are really against one or the other but we told him we would deal with whichever was the best route for Kyler. Today had some not some minor annoyances and a change as well. To start with we had a new nurse who was wanting to change all sorts of things like when he got his medicines and how we had his crib(elevated to aid in not puking) and she basically gave Mike the third degree about everything and then when I got to the hospital with the kids she did the same to me but nicer and then said "that's what dad said so he does know what he's talking about". I couldn't believe she would question him like that and then say that to me. The rest of the time I was there I tried to do as much as possible without involving her until absolutely needed. It was interesting. Later after the kids and I returned and we were back hanging out with Mike and Kyler, the nurse got a phone call. She got off the phone and said that the charge nurse was coming to speak to us. I starting trying to figure out if we were breaking any rules or if the kids had done something we didn't see. The she said " I think she's going to make you an offer you can't refuse". The charge nurse wanted to have us move rooms. She asked me to walk with her and look at it and that if we didn't want to we didn't have to. She lead us to the new side if the ICN(NICU) and clear down to the last bed space. It was a room at least double the size of the one we are in now. It had a window that looked out iver the emergency room parking lot, 2 rocking chairs, and a couch. I was sold at the couch! When Mike and the kids are here or any other visitors really one person has to steal the nurses rolling chair or sit on the floor. The kids are usually sprawled out on the big mat we use for Kyler's tummy time and we are pretty cramped. So after taking a picture and talking to Mike, we agreed to move. The charge nurse said she started out with selfish motives and was needing to move babies to help with the nurses loads and needed a baby like Kyler(not as critical is what I took her to mean) to put in that area. Tben she looked at who they had. I think she thought of us because we are up there all the time and she had helped cover Kyler yesterday while the other nurse was on lunch and she saw how little space we had with the kids being around too. So at shift change we made the move over. Gunner was so excited and eager to kid up the wagon with Kyler's things to take over there. The space is great, the view is so much better and we actually get some shelving and storage space for his clothes and such. The only downsides I see at the monent is that the chairs are rocking chairs but do not recline. That is where I spend most of my time when I'm up here alone so I will see how that goes. I may attempt to move the couch closer(it's on wheels) to be able to sit on that. He other downside is that while we have more space, Kyler's cords are hooked up on the wrong side of his crib so it makes our options more limited on where we can sit with him and they don't reach the window so we won't be checking out the view with him. I'm excited to spend some time up there tomorrow where the big kids can spread out and not have to be on top of each other and I won't have to sit on the floor! |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
Hospital Visiting Hours and Rules
9:00am-7:00pm 8:00pm-9:00pm Archives
May 2020
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