Update on Wonder Boy

I have had a few requests for new pictures. Kyle continues to do well. He is up to 18cc on his feedings which is a little more than half of an ounce. If he keeps going the way he has he could be up to full feedings by the weekend. He is getting his food through his feeding tube to help him conserve his energy. He is still SUPER sleepy but we do get rare glimpses of his eyes. We continue to be grateful for the progress he is making.

Three Weeks Old

It is amazing the progress that Kyle has made in the last three days. It has not been long since I have posted but as you can see from the following pictures he has made huge strides. I know with all of the miracles we have had happen I should not be surprised anymore. When we got to the hospital on Wednesday Kyle had been moved into a new bed. I was so excited about that for a few reasons. First it meant that he was keeping his temperature up on his own and it also meant that I could get to him a little easier.
A full view of his new diggs. He looks so small in this bed even though it is a smaller than normal crib.
On Thursday we got to the hospital and they had switched him over to a high flow nasal cannula. It was the first time that I could really see his face. The idea was to get him to tolerate the nasal cannula so that he could leave the unit the next day to have an upper GI study.
He seemed to like the nasal cannula and he even sucked on a pacifier.

When we got to the hospital today this is what we found. He was wearing his first little outfit. He really looked so small to me today. He seems really comfortable on the nasal cannula and they decided to restart his feeds without doing the GI study.
His nurse let him try to take his milk from a bottle instead of putting it down his tube and he seemed to do really well. He took about 1 teaspoon and that is a pretty big deal. Now we just have to wait to see how he tolerates it all.
He was more alert today then I have ever seen him. It was nice to see him with his eyes open for more than a few seconds at a time.
Grandpa Manderino came for his first visit and Kyle performed well for him. Kyle seemed to like spending time with his Grandpa but he looked so small next to him.

We are so pleased with the progress Kyle has made. We are praying that he will begin to tolerate his food so that he can come home soon. Everyday we see progress and we are so grateful for that.

Another Big Day!!!

Today Kyle had another big day. When we got to the hospital Kyle was laying on his tummy. It was time for him to have his diaper changed so the nurse turned him onto his back so that I could change him. When I got close to him and was about to take his temperature I heard a very soft but distinct cry. When a baby is intubated they can't make any noise so I knew right away that his tube was no longer in the right place. I told the nurse and sure enough when she listened to him she confirmed it and took out his tube and started to give him some oxygen. I know that this is not the most flattering picture but it was the best I could do while the nurse was getting his oxygen ready. It was the first time that I have seen his face without something on it.
His face did not stay unobstructed for long. This new nifty gadget is called nasal CPAP. It stands for continuous positive airway pressure. What it does it give Kyle a little extra help when he takes his own breathes. He is breathing all on his own but the machine gives him a continuous flow of oxygen to keep his airway open.
He really did not like it too much and I can't say that I blame him. There are two tubes pushed up either nostril and it gives a little piggy nose not to mention the straps that go across his cheeks have to be pretty tight to hold the whole thing in place but I still think that it has to be better than having a tube down your throat. I heard him cry for the first time today. He has a really hoarse cry from having a tube down for 18 days but I think that he also has a pretty good temper. He will probably be pretty loud when his sore throat is gone.
Grandma got to hold Kyle today too. You can see in this picture that he also now takes a pacifier. Hopefully that means that he will start tolerating his feedings. He is have a consult with a GI specialist tomorrow so hopefully we will be able to get some answers. All in all it was a great day.

Eyes Open!!!

This is what we have been treated to the last few times we have gone to visit Kyle. They are turning down his Morphine which means that he can open his eyes for short periods of time. He is also less puffy and it is nice to see some facial features emerging. He seems to have Trevor's forehead and nose. He still sleeps most of the time which is good for him but it is so fun to see his eyes open.
He is still cute with his eyes closed too! He is still making small progress every day. Along with the decrease in the Morphine he has also had is breathing rate on the vent turned down. That means that the machine breathes 5 less times a minute for him and he is able to do more on his own. They are restarting his feedings today and hopefully he will tolerate them a little better. We are grateful for the little improvements everyday and still can't wait to have him home with us.

Father and Son

Today Trevor got his turn to hold Kyle. He still only gets to be held once a day. Kyle has been doing really well. He seems so much more comfortable on the conventional vent. It is a lot more "natural" if any mechanical vent can be natural.

I think that this picture is so cute with his hand up by his face. He likes to grab onto the bar that holds his tube in place. He looks so big in this picture but he is actually shrinking. He is still swollen but it is getting better. We brought in a hat for him to replace the blue and pink one that the hospital provided. We got this hat from one of my nurses and it suits him much better.
This is Kyle's new bed. I know that it is a step forward but I am having issues with it. It is so much harder to get at him. Now I feel like I just have to stare at him through the plastic window. Hopefully it will get better as I get use to it but for today I did not like it. He is doing well and we are grateful everyday for the small improvements.

Big Day!!!

When we got to the hospital today this is what we found. Kyle was laying on his side and he had been switched over to a conventional ventilator. Yesterday they told me that he might get switched over to that kind of vent but I did not want to get my hopes up so when I got there today I was so excited. He looked so much better! So much more comfortable. The best part of the new vent is that I got to hold him.

I wish that I could describe the way that it felt to finally hold him. After a week and a half of just starting at him and touching his head it was wonderful to finally hold him.
He kept making funny faces like he was trying to open his eyes but he never quite got them open today.
This is him getting dressed for the first time. As you can tell he was not a fan but once he was all bundled he did not seem to mind too much.
He looked so much better when we left today. His chest tubes have been out for two days now and he has been off his blood pressure medication for almost 24 hours and things are looking good. They weighed him yesterday for the first time and he had gained 740 grams which is equivalent to a pound and a half. The weight gain is all fluid retention so they started him on a medication today to help him pee it out. It is going to make him look like he is shrinking right before my eyes. He is doing really well and his next hurdle will be to conquer eating. No one in my family has trouble eating so hopefully he will catch on quickly. He has made great progress and we know that it is due to all the prayers in his behalf. Thank you all for remembering us in your thoughts and prayers.

School Girls

Both of my girls are in school this year. It is hard to believe that Emma is in the first grade. Maybe it is because all of the time spent getting ready for school I was in the hospital. I missed out on school shopping and taking her on her first day but she did not seem to mind. I am so glad that she likes school and that she does so well. She is setting a great example for her sister and brother. Here she is heading out the door on her first day of school. She got a new backpack with her initials on it and she was pretty excited about it.
Abby started Pre-school with Miss Jamie this year. She has been asking to go to school for the last six months so I am so glad that it is finally time for her to go. She is such a smart little girl and I am excited to watch her learn and get to do new things. Thank you to everyone who made sure that my girls made it to school the first few weeks. Once again we could not have done it without you.

10 Days Old

Kyle is doing well. Today they took out one of his chest tubes and hopefully tomorrow they will take out the last one. He seems to be pretty comfortable for a little guy with so many things sticking into him. He is still really swollen which you can see in the picture below. He is slowly making progress, he is requiring less oxygen and ventilation support every day. Hopefully in the next week or so we will be able to hold him. Right now about all we can do is touch his head. He still does not like his feet touched and up until today his hands both had IV's in them.
Today when we saw him he had his eyes half open. It was so nice to see even just half of a little eye. He even held Grandma's hand for a second.
Here is an eye half open picture. Not the most flattering, you can really see the swelling under his chin but we were so excited to see an eye.

On Saturday Emma got to visit Kyle. She was very gentle and sweet with him. She wanted to know what everything was and what it did. I think that I might have a future health care professional on my hands.This is what I do when I go and visit Kyle. I could stare at him all day. I am so grateful for my little miracle.

It is hard to believe that after 8 weeks in the hospital I am really at home. I don't think that everything has really set in yet but I am really looking forward to sitting at the dinner table tonight and eating with my family. Kyle is doing better. He still has his ups and downs but for the most part he is pretty stable. This is my favorite picture of him. It was the first time I got to see him without his sunglasses on. The tube coming up on the side of his face is one of his chest tubes. He has developed what is called a pneumothorax which is a hole in his lung. The chest tubes are working and the hole will just take some time to heal. He started "feedings" today which really just means that they give him 1ml every 6 hours but it is progress.
Here he is with all of his equipment. It may look bad but they keep him pretty sedated so he is not in any pain.
Trevor and his boy. Sometimes it is hard to find a place to touch him but his head is usually the best place. He does not seem to like to have his feet touched...I wonder where he gets that from???

I really did not want to post this but I promised myself I would. I am SOOOO swollen. This picture does not even do it justice. At least today I can say that most of my pain is getting better I just hope that the swelling is going to get better soon. Now that I am home I promise to be better about posting. Thank you all for your love and all of your support. We still need prayers in the coming weeks and we know that we never would have made it this far without all of you. We love you!

31 Weeks

The view outside Tamar's hospital room. Nice skyline.

Kyle is here. He was born on Friday, September 5th at 5:17 pm. He weighs 4 lbs. 8 oz. I don't like doing this over a computer, however many of you would like an update. Tamar began labor at 3:30 pm and had an emergency C-section at 4:45 pm. Kyle was one pound bigger than they thought, so their incision tore when they delivered him. That ruptured an artery and caused significant bleeding. The doctors felt it was under control and finished the surgery. Overall, Tamar lost 2 liters of blood (1/3 her body volume). She went back into surgery this morning because she was losing more blood overnight. They found the two sources and fixed them. She is stable and sleeping now.

Kyle is early and I provided pictures. He had a rough start, bounced back well, then went downhill. Right now he is doing well. I am told by the doctors that it is hour-by-hour as his condition changes quickly and often. His blood pressure is low, lung function is low, and a possible infection. The doctors say his condition is critical and is very sick. He has a long road ahead of him, and has a lot of work to do, but he is doing some things very well.

Thank you all for your prayers. They have allowed us to get this far. We are grateful to be in Philadelphia for this, as we have many who have helped with dinner, the girls and some have even cleaned our home. Thank you all.