Good news!

Just a little update on the renal work ups in case anyone was wondering. The nephrologist came and saw the boys today and looked at their ultrasounds and blood work and said their kidneys look fine! They just have really high blood pressures for some reason and he has seen it before, they just don't know why it happens. He says it should go away after about 5-6 months. They will both be on 2 different medications for their blood pressure and we will see the nephrologist here in boise once a month until that evens out for them. Yay for good news!! We are hoping to do a second car seat test on Saturday and if they pass hopefully get to go home Saturday as well. Cross your fingers for Saturday! 

Just one picture today of Jace getting his bath. They love their baths. They put a big heat lamp over them and it's like they are just sunbathing. :)

We are getting closer

It seems like my time just gets away from me so fast and before I know it I haven't updated the blog in a couple weeks! The boys are doing good! As far as an update on their white blood cells and absolute neutrophil counts we still don't know. They did a blood test on them looking for granulocyte antibodies that attack and kill the neutrophils but that test came back negative, which means they did not detect the antibodies. So they decided to do the test on me and see if I have them and for some reason the boys' just weren't detected on the test. I did that Tuesday and we won't have results for a week and a half or so. If mine comes back negative they will do genetic tests on the boys to look for possible congenital diseases that maybe they were born with. The three diseases they will look for are called kostmanns syndrome, cyclic neutropenia, and shwachman diamond syndrome. It is a 1 in a million chance of having one of these syndromes. The good news if it's one of these syndromes is it's treatable, the bad news is it requires a shot everyday for the rest of their life. Our neonatologist honestly thinks it is just a phase they are going through and even though they don't see this hardly ever he seems to think they will just get over it and we will never know why they had the neutropenia. I hope he is right! We will have to keep following up with the hematologist/oncologist here in boise until they figure it out though. The boys both had their first car seat tests on Monday. They have to sit in their car seat and not have any desaturations in oxygen for two hours to pass. They both failed. Jace only sat in his for 30 minutes before they had to take him out and stimulate him. Blair made it the two hours but the neonatologist said his breathing patterns were still a little too premature for his liking. He said if he was really trying to get them home that day he probably would have passed him but where Jace didn't even make it 30 mins and Blair had to stay until Tuesday night anyway for an eye exam he decided to try his test again later on. Both boys now have mature eyes and don't have to have eye exams for 6 months! Yay! We got by with no retinopathy of prematurity!! ROP is extremely common in preemies, especially ones born as early as they were and we feel blessed to have not had to deal with that! They both got their 2 month immunizations today and handled them like champs. They are such strong boys. They both have had really high blood pressures, like adult blood pressures. Blair's has been going on a lot longer than Jace's but they decided to have a nephrologist do a renal workup in them and make sure their kidneys are doing what they're supposed to and not causing the high blood pressure. They did kidney ultrasounds today and will do blood work in the morning and then the nephrologist will come see them tomorrow. We should know results tomorrow sometime. Hopefully that all pans out well. They started them on a low dose of spironolactone though to #1 help the high blood pressure and #2 help bring the swelling down in them. I joked with Tyson today about how they're going to need the weekly medicine organizers with the days of the week on them already as newborns so we don't forget what to give them and when! I am going to have to become one organized mama to remember everything and at what times. Other than that these two boys are  doing great!! Most of the time they are just happy and seem so healthy and doing what newborns do. They are little fighters! They are so strong. They are my little miracles. And we are hoping to have our little miracles home by this weekend as long as they can pass their car seat tests. Unfortunately, until we figure out their white blood cell problem (which is their immune system) we will have to ask that nobody come visit us. The doctors have put us on strict orders to keep the boys confined because if they end up exposed to anything they don't have an immune system to fight it and would most likely end up back in the NICU. We hate to do that because we would love to see everyone and show off our little miracles but we have to do what is best for them.  Thank you everyone for your continued prayers and kind words. We are blessed with the most wonderful family and friends. 

Happy halloween! Cutest little monsters in the NICU! 

Jace

Blair

Jace

Blair bear.

Blair 

Blair

Jace

Jace

Blair loving dad!

Sweet babies together. I love them. 

And I have a feeling this is how I am ever going to get any sleep. Holding both of them in the rocking chair! 

Maddie got a one time visit into the NICU to see her brothers. She loved it! She is going to be such a good big sister! We love her so much. 

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