It's been too long

It has been awhile since I have done an updated post. It seems like these days I devote all my time to holding and rocking my boys now that I can anytime I want. Yes, they are going to be extremely spoiled and want held all the time when we get to go home. So much has happened since my last post. So much we are so thankful for. The boys are 8 weeks old, we have been here 57 days now. Blair is 5lbs 9.8 oz and Jace is4lbs 6.6 oz. Jace went into an open crib on the 16th of this month and he has been on room air with no oxygen since the 22nd. It is amazing to see these things I thought would never be here, happening. It is amazing to see the growth and progress of these little babies. Both boys are eating from a bottle every other feed. They are fed every 3 hours, so they try eating from a bottle one feed and then are gavaged through their tube the next feed. Jace has been doing exceptionally well with bottle feeding. He will eat a full bottle almost everytime he tries. Blair gets a little too interested in everything else going on in the room and likes to look around rather than suck on a bottle. I think he has it figured out that it's just easier to have the food delivered straight to his belly through his tube. He is still doing well though, usually eating about half of his feed from his bottle once we get him convinced to start. We did get some news last week that Both boy's routine blood work has been showing low white blood cell counts. The neonatologist called me and informed me of this and told me the counts are pretty abnormally low and they don't usually see this in babies as old as ours are. Blair's white blood cells had been low for about 3 weeks now at that point, so they called a hematologist/oncologist to come do a workup on him. She looked him over and decided she wanted to do another CBC in one week and see what the numbers were then. Today was the follow up CBC and both boy's white blood cells are still going down. They had the pediatric hematologist come in again today and talk with us and look the boys over. They have decided to do another blood test to see if the boys have got what's called transient neutropenia. This is caused by the parents blood cells not being compatible. So the babies have blood cells of one parent and the other parents antibodies attack the cells because they are not compatible with each other. If this is the case, we will be lucky because it resolves itself within 6-12 weeks and the numbers usually start rising back up. The test results will take about 1-2 weeks to come back. If it is not the transient neutropenia then they will have to do more extensive testing and find out what is either causing the bone marrow to not make enough white blood cells or what is attacking them and killing them. We are hoping and praying it is the transient neutropenia and our boys can overcome this with a little time rather than have a lifelong disease. The unknown is a very scary thing for me. I don't deal well with unknowns. And I am a natural worrier of all things so this has caused me a great deal of worry. I am the type of person that wants answers and wants to know everything can be fixed. I am having to learn to have a lot of patience through this. I am also having to learn to not worry about the "what ifs" until they are actually a reality. This has been very very hard for me because I guess for me I feel like if I worry about the what ifs and I think about the worst case scenerio maybe I will be more prepared if I do get bad news. That's not the case though, Worrying won't better prepare a person for bad news and I know if I can overcome this I will learn to enjoy today and today only and not worry about tomorrow until it's here. Anyway, please say a little prayer for the boys that this will not be something lifelong and that they will overcome it. They have done so well and still are continuing to do so well despite the very low white blood cells. I feel so blessed to have this be the only trial we have faced so far with these two. They have defied all odds. I read stories about families losing babies or children losing a mom or dad and it just breaks my heart and makes me realize how easy my trial has been. I hope one day we all are given an understanding of why things happen the way they happen. As for today I am just thankful I have 3 happy children to call mine. 

Jace

Jace is such a sweetheart. He is usually so content and laid back. 

Jace

Look mom! No oxygen!! 

Sweet boy Jace eating his bottle. 

Blair is a little more impatient, he does not like his diaper changed, his temperature taken, or his blood pressure taken but he sure does LOVE being held and snuggled. He is such a sweet little boy. 

Blair

Blair loving daddy.

I just love Blair's chubby cheeks!! 

And I always have to put up pictures of the best big sister in the world. She LOVES grandmas kitties right now!!!

I took her to disney on ice and to say she loved it would be an understatement!!  

She will sit in the hospital waiting room for hours and be so good. She is such a good girl and has so much more patience than her mama does. I love her more than words can say. I am so thankful for children who help make me a stronger person everyday. 

Pretty big deal!

I decided to do another post tonight because Blair has been doing some pretty awesome things the past couple days. He graduated to an open crib yesterday and has been doing awesome keeping his temperature stable. He also ate from a bottle for the first time today!! He didn't really know what to do the first time we gave it to him and didn't eat a whole lot of it but by the 6:30 pm feeding (the 3rd time we tried him with a bottle) he ate 24mL of his 37mL feeding. Yay!! This is HUGE!! He is doing so good!! Jace has got to get a little more stable on his oxygen needs before we can try to feed him but that is okay because they normally don't even allow you to start trying until they are 34 weeks gestational age anyway, so Blair is just a little early. Hopefully a couple more weeks and we can get Jace doing some of the same things. Tyson also got them both out today and held them side by side. It's fun to see the actual size difference when they are laying together. It is amazing how big of a difference one pound makes in these little guys. Blair is 4lbs 7.3 oz today and Jace is 3lb 6.3 oz. sure do love these sweet little guys!!

Eating is just exhausting!!

And one of this girl because she is always so funny.

The boys are doing well!

The boys have been doing well! We have really just been in quite an un-eventful phase. Which is extremely boring but I am grateful for un-eventful! They will be 33 weeks gestational age tomorrow and 6 weeks old on Monday. Everything inside the nicu pretty well goes by gestational age though. They have both been switched over to a lower level incubator. They took Blair off oxygen on Monday the 6th and he has been doing very well with that ever since! That is a HUGE step to not have to require oxygen! They took Jace off his RAM cannula on Tuesday the 7th and trialed him on a high flow nasal cannula but he just isn't quite ready for that respiratory wise so they had to put him back on the RAM cannula again yesterday morning. He has been having a lot of apnea spells the 3 days and they told me today his hematocrit was pretty low so that could be contributing to it. They will check his hematocrit again Monday and keep following it. The nurse practitioner told me they try to hold off as long as possible on giving them blood transfusions because they really want their body to try hard and re create their own red blood cells and if they have a transfusion their body thinks it doesn't need to make red blood cells. So we are hoping for that to go up and for his body to keep working at it on making those cells. They will both get their eyes checked again next Tuesday the 14th. Other than that we are just watching them eat, sleep, and grow! We have been here 40 days and hopefully the rest go by fast!! 

And another picture overload:

Blairs first outfit.

I made some decorations for the boys nicu room 

Blair

I get to hold this cute boy whenever I want now 

Cute little Jace 

And some of maddie