Tuesday, August 14, 2012

Day 72-112!!! We are home!!

First week of Hayden's life!! About 3 days old!!
Hayden now!! 7 pounds!!
We are so very sorry about not keeping you all very well up to date. Mister Hayden has had quite and adventure in the last few weeks. We finally got to bring our little man home on July 23 and we were soo sooooo excited!! But let me go back a little bit and update you on what has happened in Hayden's life since we posted last.

A few days after our last post, Hayden had his circumcision and they found a little surprise...he had two double hernias on each side that were rather large and would require surgery. We were a little upset about it because we were so close to coming home but we tried to be optimistic. They told us that they were going to send him by ambulance to Roanoke Memorial Hospital and have their surgeon look and him and decide what to do. So we went with him to Roanoke and stayed with my grandparents while he had his short trip to a brand new NICU. Well, long story short, he stayed at Roanoke Memorial for a week and they could never find the hernias again! So we ended up going straight home from that hospital. We were so very very excited to finally have Hayden home!!

Great-grandpa holding Hayden
When we finally took him home he weighed 5 lbs. and 10 ozs!! Such a big boy he was! He was also now up to eating 2 ozs. every three hours. They also found that he was allergic to something in my breast milk that I was eating so they put him on a special (very expensive) kind of hypoallergenic formula and referred him to a pediatric gastroenterologist. The specialist is now in the process of trying to wean him to Similac Alimentum which is much more accessible (because you can buy it in the store instead of having to order through the pharmacy) and much more affordable. He is doing pretty good with it and so far no allergic reaction.

We had him home about 2 days when we had our first pediatricians appointment just to check and see how he was doing. They said in the two days he was home, he had gained up to 6lbs. and 1oz!! We were shocked that he gained 6 ozs. in two days! The pediatrician also had other news for us....he had found Hayden's hernia again. So this time he referred us to a surgeon at University of Virginia to see if they could check him out and see what was going on. He gave us an appointment for the 17th of August and sent us on home.

Well everything went really well for about two weeks and then Tim and I were giving him a bath one morning and noticed a huge lump in his stomach. He was crying and couldn't keep down his food, so once again we took him to the pediatrician to be looked at. They sent us immediately to University of Virginia for emergency hernia surgery. He was admitted and had the surgery the next day. They said that both of the hernias were very large and it was a good thing that he went ahead and had the surgery done. The incisions are so small they said he probably wouldn't even have scars. When they weighed him there before surgery, He weighed 7 lbs and 1 oz!! Our teeny tiny 2 pounder!! They went ahead and sent him back home the next day and we have had no problems since then.

Hayden has been home with us for about a week since his surgery and we are LOVING it! He is a very good baby. He takes long naps and rarely cries unless he is hungry or his stitches hurt. He is loving and smart. We are so blessed to have him and he truly is a miracle. God brought us so far!! Through almost 3 months of NICU here in Lynchburg, 1 week of NICU in Roanoke, and surgery at UVA, he made it through it all with flying colors. No more heart murmurs, no breathing or lung problems, no problems eating, gaining weight, eyes perfect, ears perfect. He is truly a miracle and we are so thankful for him. Thank you everyone for following his journey and ours as well as we went through this tough time in our lives. We love you all and appreciate you so very much!!

Tim, Hilary, and (now home) HAYDEN!!!!
BIG smiles!!

Thursday, July 5, 2012

Days 62-71

Sorry again about not updating you all on Hayden's progress for so long. You all know about the terrible Lynchburg power outages that we have been experiencing lately and that is mostly to blame. But the good news is that my computer is back in working order and so now hopefully the blog posts will be more regular. Today is up to day 71 (gosh I knew there was a reason that I preferred to think about it in terms of months instead of days!) and we are still trucking but hoping to make it to the home stretch soon. We have so so much good news to report to you since last time we posted!

First of all, Hayden failed his last count down and had another event so we had to start a new count down. We have now made it to day 4 of 8 on that count down. They figured out that it was his being so anemic that was causing the events with his heart so they went ahead and gave him another blood transfusion which helped a whole whole lot. He is acting like a brand new baby now. He hasn't had any more events since the transfusion. Also, I wanted to mention, Virginia Baptist Hospital is hosting a blood drive with the Red Cross on July 10th from 11:30 to 5:30 in the Craddock Auditorium. So I am encouraging everyone to go out and give blood for those who need it because there is a national blood shortage. The blood has saved Hayden's life and I will never be able to express my thanks to the person who gave it to him. So please just consider making a difference for someone else (maybe even a baby like Hayden). Tim is also going to donate and I really wanted to but they wouldn't let me because its too soon after having Hayden.

He also now weighs 4 lbs. and 5 ozs! Yay!! But they are saying that he is still gaining weight a little slowly for his age and that they would like for him to start putting on weight a little more quickly. So please pray that Hayden would start beefing up a little bit more and that he would keep on the weight that he has put on already. Losing his weight is another of his little problems but we are working through it slowly and surely.

And now....drum roll please....the biggest news of all.....................NO MORE FEEDING TUBE!! He is now taking all of his feedings by bottle all by himself. He hasn't quite gotten the hang of breastfeeding yet but they are hoping that will be in the near future as well. So we are soooo excited at his awesome progress. I wish I had a picture of his brand new look without the tubes but I don't have one on my camera yet. As soon as I get a picture though, I will post one. He looks so handsome!

He also had another eye exam the other day and it turned out perfect! His eyes are now totally mature so they don't have to do any more exams. He also had another head ultrasound that showed that the bleeding on his brain was gone!! And he had another heart ultrasound to check and see if he still has his slight murmur. We haven't gotten the results of that one yet but will let you know when we do.

The only other thing he is having problems with right now is that he is having some blood in his stool still which they think is being caused by the lactose in the formula that they are using to supplement him with. So they switched him today to a special non-lactose formula that they are supplementing the breast milk with. Hopefully this will help but they want to watch him for a few days and not feed him any breast milk just to isolate what it is that is making his stomach hurt. So they are only feeding him this special formula for the next couple of days to see if it helps.

Sorry about how long this post was, I guess it is because we have missed a few days with the posts. But we appreciate all of your prayers and just keep praying for Hayden and that maybe he will get to come home by his due date (which is now only three weeks away). We love you all!!

Tim, Hilary, and Hayden

Monday, June 25, 2012

Day 58-61

Wow I am so bad at this. I have missed another 4 days on Haydens blog, Every time I have the Internet I forget to post and every time I remember to post I have no Internet.

Well anyways Hayden is now 2 months old and he is doing very well the Dr. even said the words "when you get to take him home" it is the first time anyone has said that to us. He is on day 5 of his 12 day countdown. They just took him off his caffeine he has to do good with no events for the next 12 days after that it puts him one day closer to coming home. the two main things they are looking for before Hayden gets to come home are no Heart rate drops, no O2 drops, and he has to get his weight up over 4 lbs.

Hayden is on 35 mls. of milk every three hours. also he is still getting fed every other feeding by bottle, that is when he isn't too sleepy. Last time we were told he weighed 3 lbs. and 14 oz.

Please keep Hayden in your prayers that he will keep doing well and that he will get to come home soon.

Thanks everyone

Tim Hilary and Hayden.

Thursday, June 21, 2012

Days 55-57

OK so here goes on day 55-57.

Hayden has been doing very well (but we won't tell him that) cause if we do he gets a big head and shows them just how bad he can be. He has been doing well with his feedings and guess what he finally gets to eat through a BOTTLE twice a day yeah. The first time he ate about 17 mls. with the nurse, the next time he ate about 22 mls.for Hilary, but the last feeding he had I got to feed him and He ate about 27 mls. I was such a proud daddy My little baby boy made me so proud.

They are going to do another blood count tomorrow to see if he is able to bring up his blood count by himself. I have a feeling that he has cause he has not had an event for such a long time.

We wanna thank everyone for joining us on our little adventure, thanks for all your prayers and support we love you all and keep the prayers coming.

Tim Hilary and HAYDEN :-) :-)

Sunday, June 17, 2012

Days 49-54

This is the only recent picture I have of him but he is getting so big and soooo handsome!!!
Sorry that its been so long on the posts everyone, same trouble as we have been having. My computer is still out of service (hopefully now not that much longer since my uncle found out what was wrong with it). So I am currently at my parents house using one of their computers. I have to fill you in on days 49, 50, 51, 52, 53 and today being 54. So I am going to summarize all of the days together.

Ok so, since we last updated, Hayden has had a setback and then made a comeback. He had to go back on oxygen for about a day and a half because they told us that he was not being able to breathe very well since they moved his feeding tube into his nose. They said though that they had to keep the tube in his nose because he would not be able to nurse if it would be in his mouth. Since then, he has managed to come back off the oxygen and to only have a couple of events.

He is still doing pretty well with his feedings. They tried to treat him like a big boy and go to the bolus feedings spread out over an hour with a two hour break but his tummy did not like that at all. He has managed to keep it at a feeding spread over 2 hours with a break of one hour. The main point is that he is no longer on continuous feedings which is a great great accomplishment. He is also doing well with his nursing that he gets to try twice a day which is great! We are really hoping that maybe by next week he will be on all bottle feedings. He also now weighs 3 lbs. and 7 ozs.!!!!!!!!!!!!!!!!! Awesome!!!!!

His biggest problem right now is that he is anemic. They have already given him two blood transfusions and they have helped but he is still too small to keep his blood supply up all by himself. I believe they said that the normal red blood cell count was around 46? (it was either 45 or 46) and that his level was 25. So he needs to make more red blood cells. They don't want to give him another transfusion unless they have to because they said that it sends a signal to his body not to make more. They are hoping that his body will get the hint and start to make more on its own over the next couple of days.

Also, he had another eye exam that is now showing that he is stage 2-3 immature instead of stage 1. Which means it was good because they didn't see any bleeding or anything out of the order, but also means that they will just have to re-check them again in another 2 weeks to see if they have fully matured.

I think that's about all the updates on mister Hayden. He is doing very well and we are hoping that maybe he can come home sometime towards the middle or the end of July. I hope that he doesn't have to stay there till his due date in August since he is making such good progress. Please keep praying for him that he will continue to do well and that he can come home soon. We love you all very much and thank you for following our blog and praying for our little miracle baby!

Tim, Hilary, and Hayden

Monday, June 11, 2012

Day 48

His first outfit!! Way too big even though it is a preemie!

Today Hayden is having another great day! He has not had any more events since he went off his oxygen almost a week ago! He has some ups and downs with his heart rate and oxygen but he has learned now how to bring it back up all by himself and without any help! So he has made great great progress!!

Tomorrow he will be seven weeks old!! YAY! And on Wednesday his gestational age will be 33 weeks. That leaves seven more weeks till his due date. So if he has to stay until his approximate release date (which is his due date) then we have made it halfway through his hospital stay as of Wednesday. He may be able to leave a couple of weeks early if he keeps doing well, but they have told us not to expect that, to expect his due date instead of getting our hopes up.

He is doing so well with his breathing that there is nothing more to report. He is not needing oxygen and he seems to have learned how to breathe all by himself. So please keep praying that he will continue to do well and continue to stay off his oxygen. His feedings are still continuous but tomorrow they are going to switch back to what they call bolus feedings. This means that they will run his feeding pump over a period of two hours and then give him an hour break before they start another feeding. It just helps his body learn how to get his feedings all at once instead of getting small amounts continuously. They are hoping this will also help him prepare for bottle feedings because he has to be able to get his food into his stomach once every three hours before he can bottle feed. So this is a good step in the right direction and hopefully he will take it well and his problem with reflux will be resolved.

He weighs 3 lbs. and 2 oz. again and they are happy that he has gained that weight back. They said he needs to be about 4 lbs. to 4 and a half before he will be big enough to get out of his isolette and maintain his own body temperature.

Mommy giving Hayden a bath.
We feel like he has made so much progress! They told us when he was born that he had to accomplish 4 major things before he could go home 1.) He had to be able to breathe on his own, 2.) He had to be able to eat on his own, 3.) He had to be big enough to keep up his own body temperature, 4.) He had to be able to do all three of these things at the same time. So far he has accomplished one out of four of these things and he is well on his way to accomplishing the other three. Please continue to keep him in your prayers and keep us in your prayers as well that we will have strength to make it through the other half of his hospital stay. We love you all!!

Tim, Hilary, and Hayden

Sunday, June 10, 2012

Day 46-47

Well today I will try and update you on all the new changes for Hayden for the last couple days. We also have some new pictures for you guys to enjoy (and pictures of Tim's parents getting to hold Hayden).

Yesterday he did pretty well, he gained back another ounce which was really good! That puts him back up to 3 lbs. and 1 ounce! He also did pretty good with his suckling again last night and hopefully sometime this week they will let him start bottle-feeding a little bit. They said that they will start him on one bottle feeding per day and the rest tube feedings and then they will gradually increase him one feeding until he makes it up to taking all 8 of his feedings by bottle. Yesterday they had also increased his feedings to 9 mls. per hour or 27 mls. every three hours.

Today, he has had another great day! I went in and the first thing they told me was "He needs a diaper change and we think its a major stinky!!" So, I changed it and he must have been saving up for me all day! Oh how I wished that Tim had been there to change it and not me (since he has never before in his life changed a stinky diaper). I would've loved to see the look on his face!

Pretty much everything is still the same with him today, he is still getting the same amount of food and he is still doing good breathing on his own. He is having a little trouble with reflux when he eats so that is why they are progressing slower on his feeding process. He is also still on continuous feedings so he has to be able to go every three hours on his feedings before he can bottle feed. Also, I have not had a chance to find out how much he weighs yet so that may be on tomorrow's post.

Its hard to believe that we are already up to 47 days! He will probably be here at least another 47 days before he finally gets home. But that is ok as long as he is healthy and keeps making progress in the right direction. Sometimes it feels endless but we keep trusting God and he is helping us make it through. Through it all, we have to keep remembering to be glad for the small accomplishments and not expecting leaps and bounds. He has done so remarkably well for a baby his size and continues to make the doctors and nurses very impressed with how well he is doing. Please just keep him in your prayers as we still have a long road ahead of us. We love you all!

Tim, Hilary, and Hayden