A step closer to home

We had our care conference on Monday. We met with one of Wesley's main doctors, primary day nurse, social worker, occupational therapist, respiratory therapist, and pediatrician they have been consulting recently. We discussed the necessary steps and medical attention needed to bring him home. I must say it is a blessing to hear them talk about getting him home, not just measures for survival. It's no longer "if" he gets to come home, it's now "when" he gets to come home. We know where he has been medically. The main problem has been with his lungs. That is still an ongoing battle and will continue even after he comes home. But for the good news.... He had an eye exam on Monday. One problem with preemies is that their retina can become detached since it did not have as much time to form in the womb. Their eyesight can also be damaged due to the high oxygen levels received through the ventilator. He was getting the eye exams about every 2 weeks. The doctor said his eyes look great, and he doesn't have to have another eye exam for a year!!! So it appears we have avoided eye problems. Another thing we have to be thankful for is that it appears we have avoided any serious brain damage. Only time will truly tell on that one. They have monitored him for hemorrhaging to make sure there has not been any bleeding on the brain. It appears there has been none. The occupational therapist is very pleased with his responses. She said that he responds well to voices and tracks people with his eyes. He follows doctors and nurses in and out of the room and responds to other stimuli. It may be too soon to say that he has no brain damage, but at this time, all things are looking positive.

Now, to the not so fun part. Wesley has been receiving his feeds through a feeding tube dropped through his mouth or his nose. It will still be a while before he can take feedings directly from a bottle. Even once he can start feeding from a bottle, he may not take enough from the bottle to give proper nutrition. He may tire out from doing this, and at this time, we need to be able to allow Wesley to focus his energy into breathing. We discussed our options with the doctor, and he strongly suggested that we surgically place a feeding tube through his stomach. The doctor suggested to perform a gastrostomy to insert the feeding tube. The tube will eventually be replaced with a Mic-key button that can be closed and more flush with the skin. They would also be tightening the entry to the stomach to prevent any reflux back towards the lungs. Along with this surgery he suggested to fix Wesley's hernias. We all agreed on that. With the need for surgery, he also needed a way to receive IV fluids since he would not be receiving any feedings before the surgery or for a while after the surgery while his stomach healed. They said he would need another central IV line which would mean another broviac line. They wanted to do all of these surgeries at the same time. The second thing the doctor wanted to discuss with us was the options for the trach. We are still torn on this option. Wesley has already proved he can do well on the c-pap, but the pulmonologist would rather proceed with the trach in case they need immediate access. The problem with this is that if we proceed with the trach, it will have to stay in for several years, most likely for around 3 years. It would be placed below his voice box, so it would not affect his speech, but he would not be able to talk or make noise while the trach is in place. He can place an artificial speaking button at the trach entrance after he no longer needs it for constant ventilator support. There are just a lot of issues we foresee with the trach and would prefer to avoid any more surgeries. So after leaving the meeting, the only thing determined is that we would proceed forward with the first surgery and give him some recovery time before addressing the trach surgery again. He will also need to get his vaccinations soon, so we will do that once he recovers from the stomach surgery.

A few hours after we left the conference, the doctor called me and gave me the report from the surgeon. We were planning to schedule the first surgery for some time within the next week. The surgeon we wanted to perform the surgery had an opening the next day (on Tuesday) or would have to wait until after he came back from vacation, which would be another 2 to 3 weeks. At this point in time, there is no reason to delay the surgery and the sooner it is done, the sooner he should ideally be able to come home. So we agreed to have the surgery on Tuesday.

Luckily John and I were both able to be there before and during the surgery (thanks to John being off work due to the weather and understanding managers at my job). We wanted to hold him before he went in because we won't be able to hold him again until he is fully healed from the surgery. It was a shock to see him because they had him on a different c-pap, so he looked like a little alien baby. The cap had fallen down and was covering his eyes, you can see the pictures below. The surgery was scheduled for 1:00, but the surgeon was delayed and he went in at 2:00. He was in surgery for about 3 hours, then the surgeon came and told us that all went well with the surgery and the nurses would have him back in the nursery soon, they just needed to get him cleaned up. It was a relief that all went well, although it was a relatively routine surgery, we were all scared to put him under. The only problem that happened during surgery was trying to place the broviac. The x-ray machine they had in the operating room apparently stopped working, so they had to get one from the other hospital building. It made the surgery last a little longer, but no harm to Wesley. The broviac was placed again in the middle of his chest and there is another incision on his right shoulder where the needed to place the broviac. He has a large scar running from the middle of his chest down towards his belly button. Then he has the tube coming from the side of his stomach. He also has 2 small scars towards the lower part of his abdomen for the hernias. With the hernias, the surgeon also had to do surgery to re-attach his right testicle as the hernia had pushed it too far down. He will have some pretty serious battle wounds once this all heals. I stayed the night with him yesterday and all day today. He was in a lot of pain, I felt so bad that he had to go through all of that. They had him on a lot of pain medication and a lot of sedation so that he could just sleep through it. They had to put him back on a ventilator for the surgery and are just going to let him relax while he heals. Once he seems to be over the pain of the surgery and begins breathing along with the ventilator, they will move him back on the c-pap. Then we will address the trach issue with the doctor again, but at this point, I would rather not put him back through surgery again. We still have a few weeks, maybe longer before that is addressed again.

Keep little Wesley in your prayers, right now we just want him as comfortable as possible and in as little pain as possible after surgery. Pray that we can avoid any infections and that the surgery all heals well and is truly beneficial for him. I have posted a few pictures below of the new c-pap and his body after the surgery. I did not take any pictures of his boy parts, he may still be a baby, but it just seemed a little inappropriate.



Pictures of my little alien baby:







Day after surgery pictures:

Super Cute and Ventilator FREE!!!!!

So we can now see Wesley's face and hear him cry!!! It is so sweet. He is now on a trial run off the ventilator and on a c-pap. The c-pap still provides some pressure to fill his lungs and is currently giving him 20 "reminder" breaths per minute. He seems to be doing pretty well, but there is still the possibility he will have to go back on the ventilator. I hope and pray he is successful without the ventilator, only time will tell. He is very agitated and does not much care for the tubes in his nose. We can now hear him cry, however his cry is still very faint because his throat is swollen from being intubated so long. He is getting some extra steroids to help his swelling, others to help his lungs, then a lot of different breathing treatments. We have our care conference with the doctors tomorrow. Hopefully they are pleased with his progress and will have good things to tell us. He still has a long way to go, but I'm glad to see how far he has come over the last 4 1/2 months. Spending the last 2 days with him brought on a lot of new feelings. I feel more stressed because he seems so uncomfortable and was crying a lot. I want him to be happy, not spending his waking moments crying. On the other hand, I felt a huge relief while watching over him. He has spent the last 24+ hours breathing without the help of a ventilator. The c-pap is not breathing for him, it's just helping him with a little oxygen and pressure. He is doing it, really doing it. He is breathing!!! God has answered so many prayers. I feel that this is His way of telling me, "This is My gift to you, you're baby will be fine." And we do not know what the future has in store for him, but at least it is finally clear that he will have a future.

Here is the one full face picture we got after a breathing treatment, not a happy boy!!!

Other C-pap pictures:

Can we get rid of the ventilator?

I talked to the doctor today about Wesley's status with moving off the ventilator. He told me they were giving him some steroids today and have been able to wean down his ventilator settings a little more. The intention is to take him off the ventilator tomorrow and move him to c-pap. I'm very nervous but very excited at the same time. If he can maintain his breathing with the c-pap then we won't have to even discuss the trach option!!! That would be a blessing. Keep praying!!!!

Hopefully these will be Wesley's last ventilator pictures:

Prayers Still Needed

So, here's the update on baby Wesley. He's starting to get better, but still has a long way to go. He weighs 7 lbs 13 oz. He's still on the ventilator, but they have been able to slowly lower the support he is receiving from it. We actually got to hear him cry for the first time on Friday. The breathing tube blocks his voicebox, so we normally don't hear anything. However, the tube is getting a little too small, so some air is bypassing the tube which allowed us to hear his cry. It was precious. We have a meeting with the doctors next Monday to discuss his progress and continuing treatment plan. He is very close to being able to go on a c-pap and off the ventilator. If we can get him off the ventilator this week then we can avoid the trach. Please say a few extra prayers this week that he may go off the ventilator so that we can avoid more surgery with the trach.

4 months!!!

I got to spend the evening with Wesley, celebrating 4 months today!!!! He weighed in at 7 lbs 5 oz. Most people get fun things for their birthday (or unbirthday), but poor Wesley got an IV in the head!!! It looks like they had trouble finding a good vein because he had 3 other spots on his head that looks like they tried to insert the IV line there. I felt so bad for him. But overall I must say it's a great day. We have been blessed by Wesley's presence for 4 months now. I got very emotional tonight just thinking about it all. I just thought of all we have been through in the past 4 months, all the things he has fought his way through, and all the prayers that lifted him through the good times and the bad. I think about how blessed I am to have him. By all statistical measures, he shouldn't be here. God has big plans for this little guy... I can't wait to see what those plans are. I just stared at my little baby boy tonight and thought of how perfect he is. Yes, he has the tubes for breathing, feeding, and medicine, and of course he has some major medical issues, but those all seem so insignificant in the greater picture. I just couldn't help admiring him tonight. 10 perfectly formed fingers and 10 perfectly shaped toes. Beautiful thick black eyelashes and big bold (appear to be turning green) eyes. Cute little button nose and chubby little baby cheeks. I am so thankful for my time with him, but I truly cannot imagine life without him!!!

4 months tomorrow!!!!

Wesley will be 4 months old tomorrow. He now weighs 7 lbs 4.8 oz. I'm so happy to see him grow, but I'm sad to have to see him grow in the NICU instead of at home. But they provide him all the medical support he needs and has great nurses giving him attention. He is just getting over a urinary tract infection. He actually came down with a fever through all of this. The doctors are a little concerned about how easily he comes down with infections, so they will be keeping him on some antibiotics more long term. The sickness caused a little set back in his breating, but he seems to be getting back to where he was before the infection. We have a meeting with the doctors and other NICU staff on Monday 01/26 to discuss his progress and further treatment plan. He obviously has some major medical issues, and although he could overcome them in time, it will still be a lengthy process. Hopefully he will continue to improve and make his homecoming date sooner rather than later!

Grandma gets to hold

Grandma came up from Tyler on Sunday and got to hold baby for the first time. He was really fussy that day, but he fell asleep as soon as he was being held. Wesley is holding stable right now. They have been able to come down on the ventilator settings a little every day. The last doctor we talked to said we should follow up in about 2 weeks to see if he is a candidate for the trach or if he may be able to come off the ventilator and onto oxygen. Right now, the trach is the more likely solution, but we have to wait and see what happens over the next few weeks. He also had an echo on his heart to make sure everything is okay with his heart. When I called earlier today, the cardiologist had not reviewed the readings, but the nurse had not seen anything to be of any concern. I should know more in the next few days. Here are some pictures of Grandma and Wesley:

Other Wesley pictures:

Happy New Year!!!

So we rang in the new year last night with baby. Very surprised to see that we were the only parents in the NICU at midnight, but we wanted to be there, so we were. Wesley was moved yesterday from a warmer bed to a big boy crib. They put up a mobile for him, and he loves it!!! It's hard to get his attention away from the mobile. Overall the last few days have been pretty good ones. No major changes, just some small changes with the ventilator settings. He is supposed to be off steroids by today, so keep praying that he maintains his progress without those. They have been slowly weaning him off the steroids, so it appears he has maintained well with the lower doses over the past few days. I'll have to post his Baby New Year picture when I get home since the hospital connection is preventing me from uploading it now. So from Wesley and the rest of the family.... Happy New Year!!!

Here are a few pictures of Wesley looking at his mobile.