Wednesday, June 8, 2011
June 8th Evening- Squeaky Kisses
The video is a bit dark but this is how we spent part of our day. We were just kissing on him and he began to react to the "squeaky kisses" we use to give Kaleb. That is where you make squeaky noises in his open mouth as you kiss him. It was a great day and so much fun! Then at the end of the day, they moved us to the less serious side of the NICU. That means they feel his condition is a lot better. We are so thankful today. We will keep you updates. His platelets still have a ways to go, but he is fighting and we are positive that he is on his way in the right direction.
Wednesday June 8th in the morning
It seems that Karsten is about 6 months old, but each night at 9.55 we note that he is another day old. Last night he hit his 3 day. Wow a lot can happen in 3 days. Good news to update. Julie has now been able to feed Karsty on a regular basis and he continues to put on the pounds (actually ounces). He no longer has an IV runing fluid to him and for the most part is functioning much like any 3 day old child. Currently he is up to 6 lbs 7 oz and looking strong as ever! This morning they drew blood again to check the platelet count and as we arrived back in his room around 6.30am this morning, the nurse met us with further great news. The platelet count after a day and a half are stable at 11,000 and have not dropped. This is what the Dr said he was hoping to happen. We are very happy and optimistic, but still taking it in small strides. Karsten slept in a normal crib last night and seemed to continue to rest and gain strength. We are so happy and so grateful for everyones support. If we could thank everyone individually we would but since we can't know that we read every comment on facebook and on the blog and are grateful beyond words. We will keep you posted on the next step. They have mentioned upgrading him and moving him to a transition area in the NICU to prepare him and us for coming home, but no time frame is set. We will continue to wait and see. To be honest the nursing staff is so great that we are considering asking them to keep him until he graduates high school. They help us feed him, monitor his vital signs, a doctor is always close by and I have decent insurance so after about $2000 dollars a year it will all be covered. We can't feed and raise him for that much at home. Ok Ok I am just kidding but good humor and laughing certainly has helped to make the past few days a lot easier. The journey is still early but we have hit a few smooth stretches and it is nice to just hold and kiss that little face. When you get to see him, you will understand. He is a great little boy and we are honored to be able to be his parents.
Tuesday, June 7, 2011
June 7th- An Optimistic Outlook
***An update for today***
We spent a bit of the morning with Kaleb and then got back to the hospital to some really optimistic news. First we got to spend some time with Karsten and hold and kiss him. Then our nurse told us that the Hematologist from Phoenix Children's Hospital that is reviewing Karsty's chart said he is very optimistic and feels it is time to challenge Karsten's body to see how it is doing.
1. They want him off the IV and back to Mommy feeding (Julie is so happy)
2. They are looking to get him out of the fortress crib and back to a normal baby crib.
3. There was then optimistic talk that if his body responds and Julie and I are educated correctly that we might get to see him come home but no time frame was given so that could mean a week or two or it could mean something else all together, we just don't know but are glad it is being discussed.
Good news, though with caution.
Tomorrow, we will get a 2nd read on Little K's platelets. If it goes down the above might not happen or be delayed, but it is good when the Dr, says he is impressed by how good Karsten is doing. He is one tough little boy!
Thanks for the support and we'll have more tomorrow.
Monday June 6th... a greater understanding...
Monday morning was a difficult morning. Still no answers and all the while trying to be supportive not only to Julie but also to a 4 1/2 year old who just doesn't understand what is going on.
After a trip to take Kaleb to school, a visit with a good friend at Starbuck's or as I might refer to it, me crying on the shoulder of a Barista friend, I ended up back in the NICU and Julie and I took hour shifts holding Karsty and giving him as much love as we could.
About mid morning, we had a visit from 2 supportive friends, Brad whom we have a decade of friendship with and Gavin whom we don't know well but are appreciative of his support (and comical relief of our friends in the yellow hospital gowns that they were required to where). They offered both support through their presence and offering words of support and prayer and then we went back to holding our little guy, not knowing if we had a little amount of time or a great amount of time with him.
Later in the morning we had another visit from the AZ family and while we were in conversation with them, the nurse came in and cleared the room except for me and Karsten (Julie was with her doctor) My heart leapt with fear at first, but the nurse quickly said "you aren't out of the water but this will be Good News." my heart settled.
Our Doctor came in and began to explain what he thinks is going on in terms that I might understand. His diagnosis which is going to be either confirmed or not through blood tests in the next few days is a disorder called, "Neonatal alloimmune thrombocytopenia" (now I am not a big believer in Wikipedia, but this will somewhat explain it to you http://en.wikipedia.org/wiki/Neonatal_alloimmune_thrombocytopenia) What he thinks is happening is that Karsten's platelets are different than Julie's and somewhere in the process of pregnancy, some of Julie's antibodies slipped into Karsten through the umbilical chord. Because Julie's platelets are negative and Karsten's are positive, the antibodies are attaching his positive platelets. The good news is that Julie's platelets cannot survive forever in him (maybe 6 months max). the other good news is that they can transfuse negative platelets into him and if his body accepts them, Julie's antibodies should not be able to kill them off.
So to confirm this theory of the Doctor, they have taken blood test from all 3 of us to see if this is happening. If so then he thinks we are on the right course and in his experience with this disorder, he has seen 5 children go through this and make it through. Once the antibodies are gone, it should be done and he should be a normal infant/toddler at that time. If the test don't confirm this then he could be back to the drawing board (but he seems confidant)
The next step for the day was a platelet transfusion and then 8 hour of waiting and holding him to see if the count goes up. As of Midnight on Monday he was up to 10,000 and even better news at 4am Tuesday morning it had grown to 11,000.
Of course again we wait, but this time with a greater understanding and a wonderful support system of friends and family. Our goal is to update daily on this blog to keep you posted and if we don't return calls or texts very quickly, please understand that we are appreciative but we don't always know what to do.
Sunday June 5th... an unexpected turn...
Sunday began as an incredible day. First we had the introduction of Kaleb (big brother) and Karsten (little brother) or as Kaleb likes to call them, Big K and Little K. Karsten also met his Grandma Godwin who is in town from Ohio to help out with Big K. We also had a visit from our friend Kristy Wood, and that was followed visit by our friends Craig, Stephanie and Caitlyn Barton. Later in the day we had our last visit from our Arizona family, Galen, Vera and Erica Yoder. It was amazingly joy-filled full of people who will be a part of our little boy's life. Karsten was handed around and in the fashion that we quickly saw in our little guy, he was calm, quiet and very adaptive (even to big brother trying to take his hat on and off).
Our first visit from the pediatrician did not seem out of the ordinary, except for a small hesitation that Karsten had some small bruising on his body, which we assumed was from birth, but the doctor wanted to have checked. through a quick blood test.
Because nothing seemed out of the ordinary, I headed home to play with Kaleb while Mama spent time with Karsty. Shortly after I arrived home, as I was playing with Kaleb and we were involved in some sort of light saber battle with his toys, the phone rang. This moment was like none I have every experienced. Julie had hesitation and emotion in her voice that made me immediately drop what I was doing with a quick kiss and apology to Kaleb headed quickly back to the hospital. During that 10 miles of uncertainly, all I knew was that Karsten was on his way to the NICU (neonatal intensive care unit) and there was something wrong in his blood.
Once here in the NICU, it was explained to us that Karsten's platelet count was dangerously low. In a healthy human, 150,000 is considered low and under 20,000 is considered critical. Our little boy was at 5000 and by the time we got there he was hooked up to so many machines with needles and other things that we looked that he had been through a battle. (and yet not too may whimpers, which we now were seeing that might not just be a laid back personality but a little boy that was just exhausted). And it was now apparent that this little guy is as tough as they come.
Beyond this we did not have any answers and Julie and I entered a 15 hour period of uncertainty that I have never experienced in 37 years. We did not know what to do, we did not know what to say. All of our previous facebook celebration through pictures seised and we began to wait. We were very fortunate that we were able to hold the little boy and love on him. For about an hour or two we hugged on him and kissed him but then he went back to his baby bed (which is kind of like a safety fortress for infants).
And with many tears, we waited and cried and waited...
June 4th 2011- Hello World
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