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.