Saturday, July 16, 2011

Day 10

Landry had a great day today.  He barely even needed any sugar water to calm him because he was so content on his own.  The nurse that he had today said that she was a little leery about the group she was assigned to because she had heard so much crying from the three babies the day before but was pleasantly surprised by how easy they were to take care of and how happy they were.  I wanted to tell her it was because the previous day's nurse didn't know what the heck she was doing!  I was able to speak with the surgeon who said that she hoped to have the surgery in three weeks from his first one - not four.  She has the final say in when things progress so I was excited to hear that!  She also said that they were not going to re-feed what is coming out into the colostomy bag into the lower part of his intestines because the majority of his intestines are already being used.  She said that the tear occurred near that very end so it is such a small portion that it is not really worth it.  His body is able to absorb most of the nutrients that it would normally if his intestines were connected.  That was interesting to hear - I never thought to ask where the tear occurred other than just knowing it was in the small intestine.  His feedings are up to 4cc's an hour and steadily progressing, even though it is in very small amounts.  I can't wait to get back and see him tomorrow!

I know some people were having trouble leaving comments - I've changed the settings so anyone can leave a comment now.  Sorry about that!

So alert!

I looooove to be snuggled!

Tiny, tiny, kissable toes

Friday, July 15, 2011

Day 9

Today was another good day for Landry.  His feedings were up'd to 3cc's an hour.  Altogether, he is getting 87ccs a day if you count the bottle feedings, which is almost 3ozs a day.  A typical newborn eats 3 ozs  every two hours so this amount is still so tiny.  He had a new nurse today and for several reasons, I did not feel comfortable with her talking care of him.  After my morning visit, I called the NICU to ask that Landry not have her be his nurse in the future.  After I discussed my issues, the director told me that she was not a regular NICU nurse and that he would not have her again.  She was also going to speak with her and check in on Landry throughout the day.  I am glad that he won't have her anymore.  The other nurses have been so wonderful.  We were able to speak with the other neonatologist who works in the NICU during our afternoon visit.  She will be on for the next ten days.  We liked her a lot.  She said that the surgeon had mentioned that she wanted to do the next surgery in three weeks.  This is a week later than we had hoped for but it is essential that his intestines have returned to their respective sizes for the surgery to be successful.  Hopefully he will be given a much greater amount of food by this point so he isn't so hungry all the time.

Grandma Jane and Grandpa Scott

Zero tummy time but he can already hold his head up!  Told ya he was strong!

Thursday, July 14, 2011

Day 8

There isn't much new information to share today.  I went in to visit Landry in the morning with my mom.  He had gotten his stitches removed and was giving some extra strong sugar water for the procedure which put him right to sleep since he was so relaxed.  He slept through most of our first visit but both my mom and I held him.  Tyler and I came back in the afternoon.  He was swinging in his swing when we got there.  Tyler was able to snuggle him up for a while.  We had a talk with the nurse before we left about where we are headed in the next few weeks.  She said that the neonatologist wanted to try to put what is coming out into the colostomy back in through the other opening that leads through the rest of his intestines, into his colon, and out.  At first this might sound strange to essentially be putting his "poop" back into his body but this is the path it would normally take if he all his intestines were connected.  In doing this, they can see that the lower half of the intestines are doing what they should and it also gives his body a chance to absorb the additional nutrients and water.  It will be a good test run for when he is all put back together.  The nurse also talked with us about being prepared for backslides along the way as well as dealing with the second surgery.  It will be difficult to see him right back where he was after the first surgery.  The good thing is, once he recovers, he will be good to go.  The nurse also talked with us in more detail about why he needed the blood transfusions after the first surgery.  I feel like the doctors and nurses do an excellent job of only telling you the information you need to know in the moment and give you the other information when you are more able to cope with it.

Hello world!! 

Just chillin'

They already make the same expressions!

I want more fooooood!

Wednesday, July 13, 2011

Day 7 - Afternoon Visit

Tyler and I came back this afternoon for a visit with Landry.  We got to give him a sponge bath and then wash his hair in the sink.  He got the deluxe treatment. =)  Tyler then was able to hold him and give him a bottle.  His feeding tube needed to be switched so we were able to get some shots of him with nothing on his face.  We haven't seen him like that since he was born!  We are both getting more comfortable holding and moving him which is nice.  It is pretty intimidating with all the wires, stitches, colostomy, etc but we are getting the hang of it.  The nurses are so good about encouraging us to change his diaper, pick him up ourselves, swaddle him, and so on.  They are amazing nurses and it is so comforting to know he is receiving excellent care when we aren't there.  Landry didn't need any tylenol today, just sugar water to soothe him from the hunger pangs which is a great step!  

Sponge bath

Hair wash

Checking out Daddy!

Checking out Mommy!

Yum yum yum!

Day 7 - Morning Visit

Today while Tyler went to work, my parents, brother, Cade, and I went in to see Landry.  My mom and I went back first and were able to speak with the neonatologist.  We had more questions about cystic fibrosis and the likelihood of him having it.  The lab says the results come back in 7-10 days but she hasn't seen them come back on Day 7 before and thought we would hear early next week.   Two minutes after our conversation she came walking around the corner with a piece of paper in her hand.  She pointed to a line on the paper and I read something about mutations....negative.....and more medical words I didn't understand.  I asked her what it meant even though I was pretty sure she was telling me what I had been dying to hear.  THE TEST WAS NEGATIVE PEOPLE!  Soooooooo happy!!!!

First skin to skin time.

Soooo snuggly!

Tuesday, July 12, 2011

Day 6

Landry's day today was another success.  I was able to see him twice.  When I went in in the morning I was able to give him his bottle.  It is such a tiny amount that it basically is just a tease but at least it is a start!  He also gets a continual feed through his tube in his nose.  This amount was set to 1cc an hour but has been up'd to 2cc's an hour.  This is still such a small amount so he feels just so hungry all the time.  It won't be for another week at least until he starts to feel like he is getting full.  He is also on tylenol only as needed which is a huge step up from the morphine he was on continually just a few days ago.  The nurse today felt like he wasn't in pain but that his crying and fussing was only because he is so very hungry.  It is so hard to know that he feels like he is starving.  Poor guy.... I can't wait until he can eat until he feels full.  I was able to speak with both the surgeon and the neonatologist this morning.  The surgeon felt that having him come home in between surgeries was not the best idea.  She was against it because it is such a short amount of time and having to deal with the colostomy bag is a lot.  I want him home with us more than anything but keeping him at the hospital is the best option.  It will be a lot less stressful for us as well.  It will be a sweet, sweet day when we can bring him home with a clean bill of health!  When we came back in the afternoon he was in a swing.  It was neat to see him up and doing normal newborn things instead of laying in his bed all day.  I know he needs to be stimulated so this was nice to see.  

Hi Everybody!

My first time giving him a bottle.

 We were able to get some pretty funny pictures of our little man this afternoon!

Monday, July 11, 2011

Day 5

I can't believe we are only on Day 5 of this journey.  Sure feels like much longer.  I am also glad that it is only day 5 and he has made so much progress.  I was able to see him twice today which was great but it is also hard to have to split my time between Cade and Landry.  It will be great when we can all hang out together.  I briefly spoke with the doctor this morning who called Landry a "rockstar."  She said it is a possibility that we could take Landry home in between surgeries but it all depends on how his body tolerates the feedings and how much nutrition he is able to absorb.  It is a slow wait and see process.  He was still on 1cc an hour though his feeding tube but he is now getting 5cc's 3x a day from the bottle.  This is a tiny, tiny amount that I'm sure leaves him craving more but it is a step closer to getting to nurse. The doctor would like to try having me nurse him (after I pump) just so he can start getting used to the process.  The nurses are confident that he will be a great nurser as he has been vigorously sucking away at his paci.  When I held him this morning he slept the entire time.  When Tyler and I went back in the afternoon he was wide awake.  His big eyes remind me of Cade's but that dark hair sure doesn't!  Tyler was able to give him his bottle.  It was great!

 Morning time visit with the sleepy boy.

 Afternoon visit....wide awake!

 Hi Daddy!

 I think he looks a lot like Cade in this picture.

 First bottle feeding for Daddy.

Precious, precious boy!

Cade is still full of energy and smiles at home.  His favorite "hat" is this colander.  He is a great treat to come home to!

Sunday, July 10, 2011

Day 4

Another great day under our belt for our little man. I know he has a lot of people rooting for him and its really helping! The new milestone that we reached today was starting to feed him my breast milk. He is being fed through a tube in his nose that goes into his tummy. Landry feels like he is starving so if I tried to breastfeed him he would eat way too much. They are starting him out on 1cc an hour just to see how his body tolerates the milk and if the intestines start to absorb it. They will increase the amount as they see he is doing well. Tyler was only able to see him through the window today because he feels like he might be coming down with a cold. Hopefully it is just allergies. I got to change his diaper today which was a little scary since it is right near his broviac line but it all went well. I can't wait until I can start to nurse him myself. The nurses have said that if he continues to do well, we will be able to bring him home in between the surgeries. It would be scary since he would still have the clostomy bag and I think the broviac in but it would be sooooo great! We will see.

Grandma Lu lovin' up Landry