I love my boy

These were taken a little while ago, but I never posted them 8-) And I love them! Sammy seems to be doing well. He already sounds much less congested. He did have a loose stool yesterday but they were normal today. Grandma and Papa watched them for a while today as we went out to eat and to a movie for Matt's birthday. They were well behaved and had a blast with Grandma and Papa. And Matt and I had a nice time actually being together as a couple, I can't even remember how long it has been since we did something without the kids.
We have started giving Sam the multiple probiotics again, in an effort to prevent C. Diff. Please pray against the C diff. He seems to be feeling already much better, thank you Lord. Sophia woke up all sniffly today so please keep her in your prayers.

?Low tone with Failure to thrive

Any one out there who has become aware of this blog becuase of Sophia and her failure to thrive: Have you had a diagnosis of Low tone for a reason for the FTT? We had an occupational therapist come out two weeks ago that questioned whether we are having such a difficult time feeding her because of some type of low tone in her mouth/tongue. She gave me several ideas to try, and then came back today with a whole new bag of ideas and tricks to try. Now she is wondering if there is a strenght issue, whether or not her tongue, jaw etc is strong enough to chew the food and move it side to side and swallow it normally. I find all of this truly interesting because no one has really questioned anything like this before, and everyone has kind of thrown their hands up in the air and been like we just don't know... So anyways after she watched Sophia again today she felt that it probably isn't a low tone issue, as she is not drooling alot nor does she have her mouth hanging open or anything similiar
So now she is recommending some type of swallow eval or something along that line. Or at least to have someone come and watch her chew and swallow that specializes in that type of thing to determine whether it is a tone issue or a strength issue. Oh joy! More doctors and testing...
In other news we started the albuterol for Sam yesterday and have been having to give it to him every four hours. Not sure why seeing how he is supposedly not allergic to anything that is blossoming right now but we shall see. He has been very quiet and mellow these last few days, I feel like all of this bronchospasm is sapping his energy. We aren't to our "bad week" yet, and I can only imagine how that will be next week. So prayerfully things will get better and not worse. We don't go back to immunology for another two weeks. Scared to know what his IgG levels are, but also scared not to know. I wonder when this gets easier?

Nutritionist

Well the visit with the nutritionist was ok. I am so nervous about feeding Sam though now and keeping him healthy. She should/told me how he had fallen off his growth curve. I had already been wondering about that, but noone had said it out loud yet. I told her the things he likes to eat, and the things he doesn't. She is very concerned with him getting enough fat and protein. So this shall be intersting. He is so picky about certain thigns and others he is fine with. Got any great ideas for milk free high fat high protein food?

Tomorrow is the Day

Hey everyone. Please say some special prayers for Sammy tomorrow and friday. WE go to CHildren's tomorrow and they will be putting in an NG tube and IV. THey will be giving him some medicine through the NG tube and then have the IV to keep him hydrated since he won't be able to eat. Please pray that the tube isn't necessary or that if it is that it goes in easy and it isn't too terrible for him, that the IV goes in easily, and that the scopes that they are doing on friday will go quickly and easily. And that they will figure out what is making him have so many problems. Also please pray for Miss Sophia as this will be hard for both of us as she will be away from home for the first time.
These are some pics from the last week, as well as more from her dedication (thanks Paula). Didn't they come out amazing? Oops they won't upload will try again later.
Sam seems to be doing okay. He at least ate a little today, and drank better than yesterday. Tomorrow until we go he can only have clear liquids so hopefully that will go okay. He is just so sweet. I feel so sad for him, I don't want all of this medical stuff to be normal for him. I don't want anything but normal and happy for him. I just wish that I could take it all away and that I could go through it instead of him

So very thankful

Today as I look back on the past few years of Sam's life all I am is amazed and thankful at God's goodness and provision. Sam's labor and delivery was so hard, as he had to be resusitated and then spent that time in the NICU. The first year of Sam's life was such a roller-coaster ride for us with all of his illnesses and being in the hospital and stuff. And then we started the transfusions almost exactly a year ago. And this second year of his life he has been so amazingly healthy. We have had a few scared here and there, but I am just so thankful to God that He has placed us here and that we have the medical specialists that Sammy needs to be healthy. He is such a joy to me. He says so many words now, and loves to laugh and run and climb things like a little monkey. I am just so blessed to be able to say that I am his mommy.

Sammy's Second Birthday

After multiple attempts I finally got the pictures for his birthday uploaded. You know last year I was sad that I didn't get a picture of Sam and I at his birthday, or a picture of Matt, Sam and I together at his birthday. This year I said I want to make sure we do that. Guess what I did this year?!?! I didn't get any of any of us with him:-(

Make an on-line slide show at www.OneTrueMedia.com

Party

Today we celebrated Sam's birthday as many of you know. It was a wonderful crazy hectic day. Sam had so much fun. We did a fire engine theme and he was so excited. We had the cutest cake made by Auntie Lil, Sam just swiped his fingers down the side and thoroughly enjoyed it. He got all kinds of fun trucks and outdoor toys as well as some great books and clothes. Sophia seemed better fussiness wise today, good thing as I couldn't hold her as much as I have the last few days. She did throw up two or three complete feedings though:( She continues to be fussy after eating and appears to get a stomache. She definitely wasn't screaming today as she has been, so prayerfully it is just a bug. I guess we shall see. We took tons of pictures but I am just too tired to upload tonight, tomorrow Stephanie I promise:)

Samuel Lee

Future MD?!?!?! He says that he wants "Heart beeps" and places the stethoscope on his or someone else's chest or abdomen. I guess he has been sick enough to know how to use it.

Both of MY CHILDREN!!!!

Slept through the night last night!!!! I am excited. We shall see if it happens again. Here are some pics from the last few days (prior to the 4th) Sammy finally wasn't nervous to actually feed the goats. And is now trying to tie his own shoe, my baby is growing up.:-(

Auntie Tracy in the NICU

Auntie Tracy came to see us today. It was so nice to have another smiling face. She couldn't believe how small Sammy is as her kids were both over 8 lbs and Jacob was 11lb 2oz. She is super woman, I can't even imagine having an eight pounder never mind an 11 pounder. Sam is doing well. We are now breastfeeding, he isn't quite strong enough to get all the nourishment he needs right from me but then I am able to pump and give him that as well. The IV should be out of his head tomorrow, which I can't wait for. And then hopefully we can transfer closer to home.

Jaundice

Well we are getting closer to being able to go closer to home. I can't wait. We haven't had an episode of bradycardia or apnea in two days, so we may get to go to the H. Hospital on thursday. Sam is now jaundiced so we are now sunbathing. He seems to love it. It is sad to not be able to hold him though. And his poor little feet are so black and blue from all the blood draws that they have to keep doing. He is starting to eat well, finally. They think he was doing so poorly because I was on magnesium and that just makes everyone feel crappy.

NICU

It feels like we might be here forever. The MD says that every time Samuel has an episode of bradycardia or apnea then he will have to stay for 5 more days. I am hoping that we can get transferred closer to home. We are starting to feed him and it is going okay, but sure is slow. He is down to 4lb2oz. They are giving him IV fluids to keep him hydrated. He is so cute and I am so in love with him.

He's Here

Our boy has arrived. Unfortunately he was 5wks early and has had some difficulty figuring out how to suck, swallow, and breath when he needs to. His heart rate has gone down a couple of times, so they are also concerned about that. Everything was so scary. I went to the doctor and found that my bloodwork was really bad, and my blood pressure went through the roof. Hard to believe that there was no blood pressure issues the entire pregnancy and then the day that my blood pressure goes up it is severe enough to have to induce. They said that I had severe pre-eclampsia and HELLP syndrome. They rushed me from our local hospital to a larger hospital where there were all kinds of specialists. I was told by a couple of people that work there that I was the sickest patient that they have had in years. Leave it to me:)

So this little guy is officially Samuel Lee and was 4lb 5oz and 18inches long. They also said that there was probably a small issue with my placenta because he should have been at least 5 and a half pounds. The NICU is wonderful and we are so blessed to have them caring for him, but I sure do want to take him home.

Name game

Matt and I cannot figure out a name for this baby. I like Joshua, Alexander, and Christian. Matt likes Ian, Simon, and Samuel. We think we will use the name Lee as his middle name as it will be after his great grandfather.
I am now 26 weeks and 4 days. I can't believe it. At the ultrasound today the baby weighed 1lb 15oz. I am so excited, this is the first time that he isn't measuring smaller than he should be. I continue to measure small which makes the Dr nervous but at least he is growing.