Happy Boy

Doing Well

The recovery process seems to still be going well. Wesley had his first trach change today and also had his feeding tube replaced with a Mic-key button. He seemed to tolerate everything ok. He has lost weight over the past few days though, he weighed as much as 11 lbs 15 oz, but is down to 11 lbs 3.5 oz tonight. They did remove his broviac IV on Tuesday since it was not fully necessary any longer. He is back on full feeds, but they are giving those to him continuously to avoid putting any stress on him right now. All of his medications are being given orally as well. The hospital confirmed today with Baylor that they want him on a home ventilator with his oxygen needs no higher than 40% before they have him transported there. He is still on a conventional ventilator, but he could very easily be transferred to the home ventilator any time now. His oxygen needs were at 40% yesterday, but he was needing a little extra help tonight and they were up to 60%. Overall though, he seems to be doing well and moving in the right direction. I'm so ready for him to finally come home!!!!

Recovery

Wesley seems to be recovering well from surgery. I actually got a few little smiles out of him last night. He is still on a lot of pain medications, so he is sleeping a lot, but he is very alert during his awake times. He actually gained weight after the surgery, but most of it is fluid retention. He weighed in at 11 lbs 8 oz. Here are a few pictures from yesterday:

Surgery Update

Wesley had his tracheostomy on Tuesday 3/17 at about 5:00pm. Not a great way to spend his first St. Patty's Day, but at least we are moving on to another chapter in his life. He weighed 10 lbs 8.2 oz the night before surgery, down from 10 lbs 12.3 a few nights prior. He will probably remain about the same weight if not lose a little due to the surgery. He is off all feedings, but he is receiving IV fluids. The surgery itself was about 45 minutes and went as well as could be expected. He has been in a lot of pain, so the nurses have kept him on a lot of pain medications as well as a paralytic. He tried to pull out the trach a few times during the first 24 hours after surgery. Obviously, it needs some time to heal, so they had to try to keep him sleeping and not moving for the first few days.They took him off the paralytic today with the intent to have him start breathing on his own again. It breaks my heart to see him how he is right now. Monday night before the surgery, he was full of smiles. He is just now starting to smile, so I don't know when we will get to see another smile. The realization is starting to sink in that we will not hear his little voice again for at least a year. I am trying not to second guess myself about this surgery. I know it is supposed to be in his best interest, but it is killing me to see him so miserable. I really just want to fast forward about a week and see him acting more like himself. Please keep him in your prayers, he needs strength and comfort right now.

Pictures from 03/13 - 6 months old!!!!

Six months old today!!!!!

Trying to suck my thumb:

My first big boy bath:

6 months old!!!!

Wesley is officially 6 months old today!!! He's come such a long way in the past 6 months. This next week will be a big week for all of us. John and I will be going to tour Our Children's House at Baylor on Monday. Wesley will be staying there before coming home. He should only be there for a short time (compared to the time he has spent in the NICU). Of course, we still don't know a date yet on when he will be home. We have opted to have the tracheostomy. Wesley will go in for surgery on Tuesday at 2. Once he is fully healed from that surgery and weaned down to a home ventilator setting, he will then be moved to Baylor. From there, we will be trained on how to take care of his medical needs and work on bringing him home. Once he is home, we will have 24 hour home health care for at least the first few months. Although I am scared for my baby to go in for another surgery, I feel like we have made the right decision and are now one step closer to bringing baby home. I will post pictures soon from his 6 month birthday. Please keep Wesley in your prayers and say a special prayer around 2 on Tuesday.

Swinging Baby!!!

The Trach.....

John and I met with one of Wesley's doctors today along with his care group including his primary nurse, respiratory therapist, occupational therapist, and NICU social worker. Wesley has come a long way, but his progression is still at a very slow pace. We still have a while before he will be able to come home. The meeting today was to discuss the option of a tracheostomy. This would allow him to have his face free of the c-pap, and would move all respiratory support through the base of his neck. It's another surgery, which absolutely scares me to death. Everyone involved in his care that I have talked to recently are all in favor of the trach. A month ago, we had a split decision, some were for the trach while others were against. He has been given a month on just the c-pap, even tried for a few days on the nasal cannula, but he is not progressing. He has been weaned off all steroids, and we do not want to re-introduce those. This is now a decision that John and I have to make, unfortunately, it has been the most difficult decision thus far.

The purpose of the trach would be both for development as well as precaution. Developmentally it would free up his face allowing him to focus his vision rather than having the c-pap as a major blockage. It would also allow the beginning stimulation of his mouth and the ability to teach him to feed. Right now, all feedings are going through his G-tube in his belly and the only oral stimulation he is receiving is from his pacifier. It would also allow the occupational therapist to begin more heavily working on his neck control. She said that he throws his head around a lot when she sits or picks him up because he is trying to look around the c-pap or completely shake it off. She believes that he will excel with the c-pap off and the trach in place. Having the trach would also allow him more freedom to move around as a normal baby would as he continues to progress in age. As for precautionary measures, there are 2 major concerns. The first concern is how hard he has to struggle to breathe. Some days he is fine, other days he wears himself out. The concern is with his heart. Right now he has a healthy heart, but that could change if too much strain is placed on the heart to keep the lungs functioning. By putting Wesley on the trach, we would be able to switch back and forth between a ventilator and a c-pap through the trach rather than intubating and extubating. It would be as simple as switching the tubing attached to his trach. We do not want to add another health issue for Wesley by straining his heart. The other concern is if Wesley is to become sick after he comes home. With him being born so premature and the many lung problems he has had, he will be highly susceptible to respiratory illness. If he were to get sick at any time, he could very well require the support of a ventilator. With this in mind, it would be much more difficult and much more critical to try to intubate Wesley if he were to catch pneumonia again. It would be difficult to intubate because of the swelling, but if he were to have the trach, there would already be immediate access available to his lungs through the trach. He would easily be able to be placed back on a ventilator temporarily.

The two major downsides to this are: 1) he will have to go back for another surgery and 2) this will delay speech. Obviously we don't want to send Wesley back in for another surgery. He has already had so many surgical procedures and is not even 6 months old yet. He had a PICC line put in just a few days after birth, that line got infected so it had to be removed. Then he had a broviac line at about 2 weeks old because they attempted another PICC and that would not work. A few days later he had the PDA ligation in his heart. Then he had to have the broviac line removed as it got infected. He did go a few months without any surgeries, but then recently had the major stomach surgery, inserted the G-tube for feeding, another broviac line for IV fluids, and fixed his hernias. Now we are talking yet another surgery. I know the surgeons are very good, but it's not a comforting thought. If he needs it though, I have no right to deny him the surgery for my selfish reasons. My major concern developmentally is his speech. This may just be a selfish reason as well, but I'm concerned about a delay in speech development. The trach will be place below the voice box, so it will not damage his vocal cords, but will block them until the trach is permanently removed. As he gets older, if he still has the trach, we will have an option to plug the trach which will allow some air to pass by his voice box allowing some noise/speech. It would be a while before that would happen though. Depending on how long he has to have the trach, we will most likely be learning some baby sign language to communicate. He will not be able to mimic sounds, but once the trach is removed, he will be able to begin that process. Luckily there is nothing wrong with his hearing, so he will still be able to recognize words, just not be able to say them yet.

All of that being said, John and I know what we need to do for Wesley. We have not officially signed off on the surgery as we want to make sure we have covered all options. We want to talk to the pulmonologist directly as well as visit the children's home that he would be moved to once he stabilizes a few weeks (or possibly longer) after surgery. There is still the option to not proceed with surgery, and there may still be an unexplored or undiscussed option. We just want to make sure we are doing what is best for that little guy.

Brothers Finally Together

The NICU allowed LJ to have a 1 time big brother pass to see Wesley. He has not seen him since September. The unit has a policy that no one under 16 is allowed in from October 1 through April 30 due to RSV. It is a safety precaution to keep elementary and jr high students (who are exposed to crazy amounts of bacteria and viruses) out of the NICU to protect the babies from getting sick. Research has shown that as long as the child coming to visit is not sick, it does not really pose any greater threat to the babies. So, that being said, the NICU still will be enforcing their policy, but they will allow a 1 time pass for any big brother or big sister over the age of 6. LJ finally got to hold his little brother and enjoy some time with him.... pictures are below!

Just a preview

Just playing around to see if this video works here..... it's just a short clip of Wesley.

Decisions.....

When we talked to the doctor on Sunday, he told us that they would be trying Wesley back on the nasal cannula on Monday. When I called to check on him that day, his nurse told me that he was struggling a little, so they opted not to try him on the nasal cannula, but instead increased the pressure of the c-pap from a 5 to a 7. I talked to another doctor yesterday, and he told me that it is time we have another care conference to discuss our options. At this point, Wesley is off the steroids, but still on the c-pap. He is not necessarily regressing, but is not progressing either. We have to decide if it is best to keep him on the c-pap or have him on a trach. Each side has it's positives, but also it's negatives. Ideally, I would prefer to keep him on the c-pap, but that could cause developmental issues for him since he cannot move around like a normal baby. But I fear having another surgery and what may be the long term effects of the trach. We will be having a conference soon with everyone involved in his care, most specifically the pulmonologist and those dealing with Wesley's respiratory issues. I have a HUGE list of questions for them so that we can have all the info before making a decision. Ultimately, we want what is best for Wesley in the long run, not what is best or most convenient for us. He is getting big now, so we will need to make a decision sooner rather than later. He is now 10 lbs 2 oz. He gained over a pound last week alone. Keep him in your prayers!!!!

Let's give it another try....

So the doctor told us today that they will be giving Wesley another shot on the nasal cannula tomorrow. He seems to have done well over the last week while on the c-pap, so they feel it's time to give him another try. If he does not do well, then we will have to address the possibility of going with the trach. So it's my time to ask for more prayers!!!! Pray that he does well on the nasal cannula so that we can get him breathing completely on his own and not have to go back on a ventilator. He's just getting so big that we are starting to run out of time to make the decision. He weighs 9lbs 13 oz as of Saturday night. He has gained a lot of weight this past week, so some of that may just be fluid weight, but either way, he is getting big!!!! I appreciate all the prayers and comments. Please continue to keep him in your prayers, God has truly been watching over that little guy!!!