Wednesday, December 31, 2008
The cultures came back from the staph as well. Nick does have a staph infection. They are going to continue with the course of antibiotics that he is on. They think that the caught it early. The spot that he had, that turned out to be staph isn't even there anymore, so I am hoping they just have to do a short course of antibiotics. The antibiotics have risks to him, so the shorter the course, the better.
All in all, he is doing well. He is a strong little man. Nick is definitely my angel, and I know how incredibly lucky I am to have him.
Tuesday, December 30, 2008
He got weighed again, he is now 2lbs 5 ounces. Three more ounces and he will have gained a whole pound from his birth weight. I am so proud of him.
I can't believe he will be a month old in a few days. Time has gone by so slow, and so fast at the same time. I know it won't be long until I get to bring my little man home and be with him all the time. I can't wait for those days.
Sunday, December 28, 2008
Nick and I did Kangaroo Care yesterday. It was fantastic, as always. He did so well with it. He just slept on my chest. No de-sats or anything. He just slept there. He is such a precious little boy. I am so lucky to have him.
Friday, December 26, 2008
He continues to grow and get big. New weight, 2lbs, 3.2 ounces. He is still getting his feeds, and will go up again today to 6.8 cc's an hour.
Other than that for now, not many changes. He had a lot of visitors yesterday, so I didn't hold him, but plan to try kangaroo care again today. I just love holding him.
Nick got lots of Christmas presents yesterday. Lots of books, clothes, and a rocking horse. I know he will be excited to use these as soon as he gets big. Even though he spent his first Christmas in the NICU, he had a good one.
Wednesday, December 24, 2008
Everything else is still the same. He is tolerating his feedings well, he is up to 6.4 cc's an hour. I think he is at max feeds for his weight, or at least really close to it, so I don't know how much they will increase from here. (A little conversion, 6.4 cc's an hour means he gets about 5 ounces a day)
He is still on the bipap machine and handling it fairly well. I spoke with the respiratory therapist yesterday about the possibility of him going back on the vent. For now, it is still a decent possibility. However, she did say, that while he keeps having the spells, he was having the spells on the vent, so they felt like if he has them on the vent or the bipap, they might as well just leave him on bipap. So for now, he will continue to stay on bipap unless he has a major crash or just seems to be not tolerating it well. The other possibility for going back on the vent is his weight. He has to work hard with the bipap, doing the work himself, and if they feel that he is burning too many calories n the machine, they may have to put him on the vent. For now the most important thing is to make him grow as big and as fast as they can.
So, that is where we are today. Fairly positive. We are all happy with his progress right now. Hope you all have a Merry Christmas.
Tuesday, December 23, 2008
Even though he has had a lot of spells, they have not had to put him on the vent yet. They are really trying everything they can to keep him off of the vent. I just hope he cooperates.
Nick is still tolerating his feeds well. Last night was a weight night, and Nick is now 1lb 1.2 ounces. Small growth, but some is better than none.
Right now, Nick and I both need your prayers so badly. We are both going through so much. I appreciate all of you, and your support.
Sunday, December 21, 2008
Going back on the vent is a mixed blessing. While it seems like it is a step backwards, it may actually help him. Right now, Nick is doing all the work of breathing. So, he is working hard, and burning calories by taking breaths right now. If he were to go back on the vent, then it would do more of the work, and allow him to concentrate more on getting bigger. While I am not happy about the vent, it may be more of what he needs. I am confident that they will do the best thing for him.
Tomorrow will be a big day for both Nick and myself. They want me to start something called "kangaroo care". I have been reading about this for a few weeks now and am very excited to try it. Basically, I sit in a chair and recline a little. Then they will bring Nick to me, and he will lay on my bare chest. We will have skin to skin contact. We will sit like this for about 3-4 hours. I will talk to him, read books and maybe even take a nap together. This allows him to get back on my rhythm. He will hear what he was used to hearing while inside, my heartbeat, stomach noises, just the noises of my body. It has been proven to really help him feel more comfortable, and content. Even if he goes back on the vent, they are going to try to let me do this. They really feel like this would help Nick. If he has a bad day, they may not let me do it, but for now, it sounds promising.
Friday, December 19, 2008
He is still on cpap and doing well. His nurse told me this morning, that if he does well today, she will let me hold him this afternoon. I am so excited! I can hardly wait for this afternoon. Please keep Nick in your prayers that he does well today. If he has a few de-sat episodes, they will have to put him back on the vent, and I won't be able to hold him. It is completely selfish on my part, but I want to hold him so bad.
I will let you guys know this afternoon how he is doing. I hope to be checking in with a picture of me holding Nick for the very first time.
UPDATE: I got to hold Nick! It was only for about 15 minutes, but I did. It was wonderful. I couldn't believe it. He was all swadled in a blanket, and then put into my arms. He just slept in my arms. He seemed very relaxed. He didn't get agitaed at all. It was really great. I asked the nurse to take some photos, but they didn't turn out. So, I will try to take some more tomorrow to post. For now, he is doing beautiful. No de-sats today.
Thursday, December 18, 2008
If he doesn't handle this well, they will have to reintubate him. That really wouldn't surprise me if they had to, but I am really hoping they don't have to. The longer the vent is in, the higher the risk for chronic lung problems as he gets older. So, we would really like to see the vent come out and stay out.
I will do a few updates through out the day today and let you know how he is doing on the cpap.
UPDATE: So far so good. He has had a really good day today. I almost hate to say that outloud. He is still on cpap, as of 6pm this evening. That is really good. The probability is high that he will have to go back on the vent, but we are really hoping and praying that he doesn't.
I did get the full story of the extubation this morning. Apparently, the docs were rounding this morning. They were standing by Nick, actually rounding on him, when he pulled his vent out. I guess he just wanted his point to be perfectly clear that he no longer wanted to be on it. I think it is pretty funny that he did this in front of every doc. That's my boy.
While I was at the hospital today, I got to hear him whimper and coo a little today. Now that he doesn't have the tube down his throat, he can make a little noise. It was the best sound in the world! I know he was a little mad and upset when he was making the sounds, but it was still wonderful to hear. He was very quiet, probably a little hoarse from having the tube for two weeks, but I heard him. It was the sweetest sound, even if he was mad.
They went up on his feeds again today. They also started the 1/2 breast milk, 1/2 24 calorie formula. So we should see some good weight gain over the next few days, hopefully. They were able to stop the insulin today as well. His sugars have been good.
Tomorrow they will pull out his pic line. That is the line in the top of his head. They will be able to give him any fluids/medications through his feeding tube since his feeds have increased. So, as long as they pull that out, then he will have the small tube that goes down into his belly to feed him, and he will have the cpap, which just goes over his nose and pushes air into his airway.
He has been much more comfortable and less agitated than he was yesterday. I am so happy he has had such a good day today. When they said it would be a roller coaster, they weren't kidding. I am surprised to have such a good day, after such a bad one yesterday. He is fighting though, and that is all that matters right now.
Wednesday, December 17, 2008
Other than that, he is doing well. They went up on the feeds again... 4cc's an hour. He is still handling his food well, and they are very happy with this.
They measured him today. He is 13 1/2 inches. So he has grown a 1/2 an inch. Pretty good for two weeks.
Nick had a pretty rough day today, but we are hoping for better tomorrow.
Tuesday, December 16, 2008
Other than that, he is doing well. He has had some de-sats, but it seems like there is always a reason for them. He had one this evening, but he needed to be suctioned. I am told this is perfectly normal. Since he has the vent, they are giving him humidified air, and that creates a little more fluid. Once he was suctioned, he was fine.
They increased his feeds again today. He is up to 3.6cc's an hour. He also had another bowl movement on his own this morning. His sugars also continue to be lower.
The biggest news is his weight. He was weighed this evening, and has gained another few ounces... 1lb 14 ounces. We are so close to two pounds. I feel like that is such a land mark. I can't wait to get there! That really is the most important thing Nick can do right now is grow. We just want him to keep growing and growing.
I have heard from a lot of you that you would like more photos. I will try to comply with that. Really... I promise to try to take more photos and post.
Monday, December 15, 2008
They have continued to go up on his feeds. He is at 3.3 cc's an hour as of today. They will go up again tomorrow. Then the next day, when they go up on his feeds, they will mix the breast milk with a higher calorie formula. They make a half and half mixture. This gives him more calories and extra calcium to help him grow. Apparently, no matter what I do or eat, breast milk only has a certain number of calories and a certain amount of vitamins. Normally, babies don't need more, but with preemies, they give a little boost to help them grow quicker.
He is still getting the insulin, but they were able to drop it down a bit. His sugars have been good. They just keep him on it while they have him on the steroid.
He ot weighed again last night. He is still gaining, but because of the steroids he didn't gain as much as he has in the past. He is now up to 815 grams, or 1lb 12.8 ounces. Still growing, and that is all that matters right now.
I know I promised you a video, and I did take one, but I can't seem to get it to upload. So, you will just have to make due with a picture. As of today, Nick is two weeks old.
Update: I talked to Nick's nurse tonight to check on him. He had a bowl movement all on his own. I know it seems funny to be excited enough to put this in the blog, but it is a really big deal. So far, he hasn't been able to do that, they have had to give him a suppository to help him along. This is a really big step for him. It also means that so far, his bowls are working great. One less thing for us to worry about. Good job Nick!
Saturday, December 13, 2008
Nick got weighed last night. He is 1lb 12.2 ounces. Still growing. They expect his growth may slow a bit while on the steroids. That is a common side effect. They will continue to weigh him every other day, so we will see.
So, we are still doing okay. Taking it day by day. I am so proud of my little guy. I got a video camera for Christmas. My mom gave it early since Nick was early. I am going to try to remember it for tomorrow, and take some video of Nick that I can post. He is so cute when he wriggles around and kicks his feet up!
Thursday, December 11, 2008
Wednesday, December 10, 2008
I got a little better explanation of what was going on with him yesterday. Apparently, it is just due to his immature lungs. It is something that he will have to grow out of. This will probably last a few weeks. While it is scary and hard to watch, the doctors and nurses have it all under control. They are used to this sort of thing.
Yesterday was hard for me. Watching him was so difficult knowing there was nothing I could do to help him. I know there will be many other days in his life I will have that feeling. I am so thankful that today is better. I only hope that the good days far outweigh the bad.
Tuesday, December 9, 2008
The doctors were expecting this setback, and it is something that happens often. Basically, his lungs are just premature. They explained that this happens in a lot of premature babies, and they are on top of it. That doesn't make it any less upsetting for me to watch, or hear about. I sat with him for a good part of the late morning. His breathing seemed much more labored than it has in the past few days. He is still breathing somewhat on his own, with the vent there to support him. His nurse said he is doing okay, not good, but not bad. So for now, I choose the think of that as good.
We knew that there would be days like this, but really there isn't anything you can do to prepare yourself for it. It is so hard to watch him knowing there is nothing in the world you can do for him, except tell him I love him. I guess that is a lesson in parenthood that I am learning early on. I desperately want to make it better, but I know that at this point, the only thing I can do is pray. I have done that a lot today.
Today was my appointment with my regular ob/gyn. She was to remove my staples. So far, I am healing nicely. When she saw my incision, she said, "Wow, you did have an emergency c-section." Not really sure what that means... I asked her if my incision was healing nicely, and how much scaring there would be. She said to consider it my battle wound. Thanks! I did have my staples removed with minimal pain. She is still trying to find out the results of pathology on the placenta. We may never know exactly what went wrong, but they are trying to find out so that we have smaller risks of this happening again in the future. Right now, they are pretty sure it was a problem with the placenta, and not with Nick. So that is good. We were worried about possible genetic problems with him that would have caused all the problems while he was inutero, but that seems to not be the case, so that is good as well.
So, for now, I am resting, or at least trying to. I just spoke with Nick's nurse and there have been no changes this afternoon. I am happy to not have any changes for now. Please keep Nick in your prayers, he will need them over the next few days.
Monday, December 8, 2008
Basically I am just writing to say that as of 9:10 this morning, Nick is one week old. I can't believe the first week is already over. It went by so fast, and so slow at the same time. I hope the coming weeks go faster and faster, until the time when we get to bring him home.
Bryan and I also wanted to take a moment to say thank you to all of you. We were talking last night about all the family and friends that have been supporting us over the last few weeks. These have definitely been the happiest, scariest, and hardest weeks either of us have ever experienced. We are so thankful for the support that each of you has given. We have definitely felt your prayers hard at work, and so has Nick. We are also amazed at the number of people that know each of you, that don't know us, that are praying for us and our Nick. That is very humbling as well as uplifting. It really means so much to us. Please know that you are all in our thoughts and prayers.
Please keep Nick in your prayers. We are only one week into this journey, and I know there will be hard times ahead.
Here are a few more pictures we took this weekend...
So this is for those of you who haven't seen him. Just to give you an idea of how small he really is, this is Nick, next to a dollar bill. He is about a "dollar and a half".
Just a picture of Nick, and my hand. I think it is funny how he is laying, but that is the way he always sleeps. What is even more funny, is Bryan sleeps like that a lot.
Just a photo of his foot. I am obsessed with his feet. They are SO cute. They are so tiny, although they are big compared to the rest of his body. He has big feet! But they are cute feet.
Bryan and I are going up to the hospital later this afternoon, so I will probably have an update on him later today.
PM UPDATE: We went and saw the little man this afternoon. He is doing very well. They are happy with his progress. He is up to eating 1.5cc's of food an hour. He is tolerating his food well, and doing very well on the ventilator. They may even consider taking the vent out and going to a cpap ( I think that is what it is called). Anyway, it is just something that just goes into his nose and pushes oxygen into him. We will see if they go ahead and do this. They were thinking about it, but no decision as of yet.
They took the light off of him that they had for his jaundice. So that was good. Because he didn't have the light, they were able to take off his sunglasses. He was opening his eyes. I know that he can't see anything, but it was neat to see him with his little eyes open. I didn't want to take any photos of him like that, because I didn't want the flash to hurt his eyes. He lookes so cute though. It was awesome to be able to see his whole face.
Sunday, December 7, 2008
They also lowered his vent pressure a bit today. He is getting to the point on the vent that they won't do much else with the vent. He is stable on the vent, so it will basically be there for support for him until his lungs mature more.
So, still hanging in there. Bryan and I are as well. We are so proud of our little man and his progress. We just keep looking forward to the day when we can bring him home.
Saturday, December 6, 2008
You can really see how small Nick is compared to Bryan and I.
Anyway, we were so happy about all of the results today. We just told Nick to keep on doing exactly what he is doing. We are so proud of him.
Update on me: So many people have been curious about how I am doing, thought I should give an update. So, I am home now. I left the hospital Thursday. After being there for so long, I thought I would be excited to leave, but it is really hard to be so far away from Nick. We are doing well though. Bryan and I are able to go down at least once a day, if not twice. I am having some pain, but that is really to be expected. I have realized that the less I do, the better I feel. That is really hard to do. I try to take frequent breaks and rest a lot. I have started pumping to breast feed, and it is going well. I am able to supply Nick with everything he needs and that is a great feeling.
For now, all is great with us. Bryan's Aunt Meaux will be coming in next week, so that I can go to the hospital during the day while Bryan is at work. Then Bryan's mom will be in the next week. In the interim, my mom has been doing some cooking and cleaning for us. We really appreciate all the extra help.
They are going to start feeding him this afternoon. They are going to drop a tube next to his vent, into his tummy, and feed .3 cc of breast milk an hour. We are very excited about this step. We know that they wouldn't feed him if he couldn't handle it. We are hopeful that this will be really good for him, and allow him to grow and get better each day.
UPDATE: Nick has had the feeding tube for 4 hours. He is handling the food well. All is great.
They did have to put in a pic line. His IV line in his belly was leaking which is common. They wanted to start a central line so that they wouldn't have to do IV lines every few days. They were going to start it in his arm, but couldn't get a good spot, so they did the central line in his head. Again, we hate to see it, but we know it is the best thing for him.
Later in the day, they decided to do an ultrasound on his brain to make sure he didn't have any bleeding in his brain. We were very concerned about that. It is common for preemies his age to get brain bleeds. There are 4 levels of bleeds. The first two aren't that concerning (at least that is what they tell us, how a brain bleed can be not concerning is beyond me). Anyway, they usually check for that at the 7 day mark, but some of his blood levels were low, and they thought he might be at risk for a brain bleed.
It was a tense afternoon as we waited for the results, but finally, they came and told us, no bleed. Thank God!! We are thrilled. He still has a risk, but for now, that is really good news. They should do another test on Monday to make sure, then he should be through the critical part of the brain bleed.
All good news for now. We are so thankful.
We hate seeing him with the tube in his mouth, but we know that this is the best thing for him. The least amount of work he has to do on his own, the better for him.
Friday, December 5, 2008
We found out I was pregnant the day before we left for a vacation in Colorado. Both Bryan and I were shocked. We really couldn't believe it. We were really excited. The next few months brought doctors appointments, ultrasounds, and evening sickness. Lots of evening sickness. Despite all of that, we talked about what kind of child we would have, how we would raise them, and what they would be like.
The time finally came, and we found out we were having a boy. We were both so excited. We had a name picked out already for a boy... Nicholas Charles. Both Bryan and I liked the name Nicholas. Charles was after my father, who passed away 4 years ago. We really think we picked the perfect name.
So, there we were, pregnant, planning, and starting to get the room ready, when November 19th rolled around. I had a doctor appointment for an ultrasound. When the tech started the ultrasound, he noticed a few things wrong. First, the fluid around the baby was low. The blood flow between myself and Nick was also low. He consulted the doctor, and they thought it best to admit me to the hospital for observation. I went to UTMB in Galveston that morning and checked in.
Over the next few days, they monitored me, did a few tests and came up with treatment plans. Nicholas proved that what the doctors had planned was not necessarily what he had planned. After more complications, we finally realized that I would be in the hospital until I would have a c-section, sometime in the next week or two.
After almost 2 weeks in the hospital, Nick decided he was ready to make his grand entrance. He certainly made his entrance memorable. After his heart rate dropped, and I was rushed to the operating room for an emergency c-section, Nicholas made his arrival on December 1, 2008 at 9:1o in the morning.
Being only 27 1/2 weeks, there were complications. Nick went immediately to the Infant Special Care Unit. We knew he would be there for many months. We were able to talk to Neo-Natal Doctors before delivery so we would know what to expect in the first few weeks.
We know that the next couple of months are going to be a roller coaster. We are praying for many more "ups" than "downs". I know that each of you reading this has a special place in your heart for Nick, and I know that you as well will be thinking of him and praying for him as well. I hope to update this daily, but you know how life can be.
We are so proud to know this little boy. Bryan and I both have fallen unbelievably in love with him. We hope that you feel all of our joy as we go through the next few months. Please feel free to check back often, as I said, I will try to update daily. Also, feel free to leave comments, we would love to read them.