Update on Todays Appointments

We had appointments with the hematologist and the nephrologist today. We received some pretty good news. They drew the boys' blood and Jace's neutrophils were normal again! This is the second month in a row his have been normal so Dr. Camillo said he did not need to see Jace again. Yay!! Blair's neutrophils were unfortunately low again so we are going to check them here in burley again in 2 weeks and in 4 weeks and see what they do. If he has two consecutive normal levels he will not have to see Dr. Camillo again. If his numbers do not rise or if they go up and back down then we have to bring him back up in 6 weeks to be seen again. We also got the results on Blair's genetic test and it was normal! So exciting. Dr. Camillo suspects this will all disappear for Blair like it did Jace but does not want to release him as a patient until it has gone away for sure. So we are hoping for the next two blood draws to be normal!! 

They also saw their nephrologist today for their blood pressure. They had us stop their blood pressure medication a week ago and both boys' blood pressure was normal today without medication!!! So we don't have to see Dr. Jenkins anymore. He is starting a research project next week with some other doctors though to study this exact issue in premature babies. They don't have any idea why it happens and it always goes away within 5-6 months of age. He comes from Oregon to boise to see Idaho patients and said he only sees about 25 patients a year in Oregon and Idaho with this problem so it's not something extremely common. It will be exciting to see what they can come up with during their research and testing and trying to figure out why it does happen in some premature babies. 

So all in all our day was good!!! Just hoping for Blair's neutrophils to come up.  There hasn't been a whole lot else going on. We pretty well isolate ourselves at home due to all the sicknesses going around. I think some people think I am a crazy weirdo who is extremely over protective of my kids, but being born as premature as they were they're lungs take a long time to fully develop and I don't like to take any risk of sending them back to the hospital. And with low neutrophils on top of that they would not be strong enough to fight an infection or illness. So, unfortunately, Maddie does not get to go play with other kiddos because we don't want her catching something either and bringing it home. Hopefully only a couple more months and most of the flu and rsv will be gone and we can do a little more and be around more people. 

Thank you all again from the bottom of our hearts for all the prayers and thoughts!! Our boys are doing amazing and we couldn't ask for anything better. We are so lucky to have them.

Big boys sitting up in their bumbos! 2-17-15

Watching maddie play outside- 2-17-15

My valentines loves. 2-14-15

Jacer is always so calm and content and Blair is a little turkey. Jace will talk and coo at you and all Blair knows is squawking and screaming. Blair is definitely a feisty little guy and knows what he wants!!! They are both just sweethearts though. 

Uncle Jaxon came home from serving a mission in Arizona!! Waiting at the airport for him. 

Cute little monkeys!! 

And my goofball. I don't know what we would do without this girl in our lives. She is such a joy and we love her so much! 

 

Has it really been 2 months??

Oh my goodness how time gets away from me now. I cannot believe it has been a little over two months since we have been home and since I have blogged anything on here. The boys were both able to come home on November 16th. What a joyous, overwhelming day that was! I never thought I would see the day we got to leave the NICU. As the time goes it seems to drag on, but once you are done and look back it seems like it went by so fast. It was a bittersweet feeling leaving the NICU. I cried. ALOT. I was so happy to bring the boys home and be a family together at home, but I was also so sad to leave the people that had taken care of us and our babies for 2 and 1/2 months. They became our family. The staff at St. Lukes NICU in Boise Idaho will forever hold a special place in our hearts. I will never be able to thank them enough for what they have done for us.
Well to sum up the last couple months, we went home and it was hard. Taking care of two babies is not a piece of cake haha. I hand't gotten the full dose of taking care of them on my own yet where I had nurses to help me or to take care of them while I was not at the hospital. When we came home the boys were on a strict 3 hour schedule. They ate every 3 hours on the dot. And we were so in-experienced at two babies at one time that it seemed like we would get our routine done and just start right over. I don't think I slept for probably 4 or 5 days straight. After a long stretch of no sleep and about having a mental break down Tyson offered to take the middle of the night feeding. That has saved my sanity. At first it was around 3 AM but the boys now will go about 6 hours at night and wake around 7 AM. (we are very lucky.) They are such good babies! They hardly ever fuss and are pretty content almost all the time. Anyway, things have been going great now that we have the feel of taking care of the two of them together. We somewhat have a routine and wonder what we ever did with our time before them. :)
As far as their white blood cells go, we have been seeing the hematologist once a month since we left. We saw him twice for the first month though. They have been checking their neutrophil levels every time we go. The boys left the NICU with very low neutrophils so we knew we had to keep everything completely sanitized, not go anywhere, and not allow anyone sick around us. Needless to say we don't leave the house besides for Dr. Appointments. Both of their neutrophils had somewhat come up around the first of December and we were very optimistic that maybe they were going to start coming up and continue to go up and stay up. Well, when we went for our appointment on December 18th they did a CBC and both their numbers had gone down, Blair's WAY down. It was a little crushing since they had come up and we were hoping to stay up. Needless to say, that day I was a little down. The Dr. decided at that appointment we needed to take the blood and do genetic testing to see if there is a problem in their genetic makeup. They checked for 3 different diseases. Kostmann's syndrome, Cyclic Neutropenia, and Shwachman-diamond syndrome. They told us it would tai e 8-10 weeks to get our results for those and to come back in 4 weeks to check the numbers again and see where they were. We went to see him today and they did the blood work (poor Jace wouldn't bleed and they poked the poor baby 3 different times) and their Neutrophil counts were NORMAL today!!!!! Hallelujah!!! I have never been so excited. Such good news. They have not ever had normal blood counts yet. They also had Jace's Genetic tests results back and it was normal also! I had a huge weight lifted off my shoulders today. We will still be waiting to see what Blair's genetic tests say, but we are optimistic they will be normal as well. Dr. Camillo said if Blair's genetic tests are normal and both boys have normal neutrophil counts again in 4 weeks we do not have to see him anymore and will chalk this up to a transient neutropenia of prematurity. Lets all hope thats what this is and their numbers stay normal this time. It was a great day.
We have also been seen the nephrologist for their high blood pressure. That has been going very well. We were told by him also that if they boys have good blood pressure again in 4 weeks on half the dose of their medication we can stop the medication and won't have to see him either. If all goes well and the way we hope then in 4 weeks could be our last visit to both specialists. Yay!!!
Other than that, life has been good. Maddie loves her little brothers (sometimes a little too much) and they LOVE to watch her. They are so entertained by her.  They are 4 and 1/2 months old now, almost 5 months. They smile a lot and they like to make noises to get your attention. Blair weighs 9 lbs 15 oz (we almost have a 10 pounder holy moly!!) and Jace is weighing in at 9 lbs 1 oz. They have grown SO MUCH. It is amazing how fast you forget how small they really used to be. We are so grateful for these boys and what they bring to our family. We love them with all our hearts and are so happy they are ours.

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.