Walks and Transfusions

This is Jack getting his first transfusion since leaving the NICU. I take him up every 4th day to the Rapid Treatment Unit. It is a very long day for both of us. My mom, Grandma, went with me to help and we're going again tomorrow.

Daddy Joe walkin' his boy.

I LOVE my jogger! Hopefully I'll be able to actually jog with it soon.

Another picture of little man getting his transfusion. He's such a trooper! He only cries while they put the IV in and right afterwards he's happy again. As soon as they alcohol prep his arm for the IV he starts to cry because he knows what comes next. OUCH!

Jack loves to hold his face. His little hands are always at his face. He's such a good baby. Last night he slept for 6 hours! We are so lucky to get such good sleep.

"Elvis" has left the building!!!!

He is HOME!!! We got the ol' boot yesterday around 4 pm. During rounds the doctor said he could go home. It took us 6 hours to go through all the paper work and passing things off to go home. Oh, and a hearing test.

He LOVES, LOVES, LOVES his swing. The nurses found him one to use next to his hospital crib and he sure loved that one too.

Doing his car seat test. He ended up being in it for twice the amount of time because they did his hearing test in it as well. The first hour he was awake and looking around, the second half he just slept and slept. I guess he doesn't mind his car seat. Vacations here we come!!

He also likes to hang out under his play mat and look at all the cool stuff that hangs.

Needless to say we are ecstatic to have our little boy home. Thanks to everyone who helped us during these two hard weeks.

He is still going to have to have his platelets drawn every 2 days. His pediatrician is 3 minutes from our house and that's where we'll do it. Once a week he'll need a transfusion, so we'll have to go back to Primary's for that. We also have to follow up with neurology with an another MRI for his brain bleed in November. We are so blessed to have him and cherish every second!!

Day 11

Seriously the cutest baby ever in the whole world!!!
Grandma loves to hold baby Jack. She'll even change his diaper.
Daddy "pope" kisses are the best!!
That binki is bigger than he is.
Today was an uneventful day, which is good, his platelets barely dropped. At rounds they said if he keeps gaining weight and his platelets come back in the morning and they've stayed around where they were today that he could come home tomorrow or even the next day for sure. He didn't do too good on his feedings today because he was very sleepy. Tomorrow I'm taking his car seat to do a "test" run beside his crib to make sure he keeps his heart rate normal and his breathing normal. They have this long list of things you have to pass off before you can take your baby home.

*has to hold temperature with a night gown on.
*has to be in a crib
*has to pass the car seat test
*parents have to watch a movie on "shaken baby syndrome"
*parents have to watch a video on infant CPR
*parents have to certify at infant CPR
*has to gain weight every day for 5 consecutive days

I'm sure I'm missing one or two. And for Jack his platelets have to drop at a slow rate or grow on some days. When he does go home I'll be bringing him back to Primary's every other day to get his platelets checked and maybe get a transfusion every 7th or 8th day depending on how quickly he drops down below 50,000. Today was a good day!!

Jack Day 10.......Has it been that long?!!!

Daddy and baby are tired. Joe is very patient when feeding Jack. Jack is a slow eater because he really likes to look around and be burped every 2 minutes. The nurses kind of give up on him too quickly and so they say he's falling behind on his feedings. If he doesn't keep up on feedings they'll have to put his NG tube back in and force feed him. I know he can do it on his own. He's such a big boy!
Poor Joe had a rotation shift he had to work today. He was bumbed and only got to spend a few hours with Jack today. (those are not the scrubs he did surgery in today, he changed into clean ones before he left)
Aaawwwwwwwwww....................... CUTE!!!!!!!!!!!!!!!!!!!!!
Lookin' around.
Lookin' at me.

Today was a good day at the ol' NICU. Jack didn't have an IV in and it was easier to pick him up and not worry about it getting pulled out. His platelet count went down to 82,000 from 112,000 this morning. But this afternoon it only went down to 78,000. So hopefully they will start dropping slower and we can take him home soon and come in on an "out-patient" basis and get his platelets drawn every other day and get a transfusion every 7th or something like that. The Attending Doc said they are pretty sure that he's got the HLA version of thrombocytopenia. Which is so rare that even his nurse today had never heard of it. And the Attending couldn't remember what HLA stood for. He says that Jack can go home when the platelets start dropping less and less. I'm shooting for Saturday!!! GOOOOO JACK!!!!!!!

"Jack, Day of Life 9"

This kid is always smiling, he doesn't mean to, but he does it all the time..........
This is another Jack face that we see on a daily basis.................
and another....................
and another! Lots of cute faces on one little boy.
Whenever the doctors do rounds they always say, "Jack, day of life...(whatever)". I think it sounds so formal and goofy. Today while Joe and I were there he got his blood drawn for his twice daily platelet count. I never asked how they did this. I just assumed they drew blood out of one of his IV's. NO, they stick his heel and squeeze it and drops of blood come out. SOOOOOOO sad. But he's such a brave boy that he just kinda squirms around. He hardly ever cries. We were still there when the findings of that test came back and his count had gone up 5000. So that's good! But I'm not going to hold my breath that they will raise again the next time they do the test. I'll find out when I go tomorrow at 7:30 a.m. Today was a good day!!

Baby Jack Day 8

This is what Jack Jack does best!! SLEEEEEEEEP!!!!!
He is our little Jedi Warrior. He is soooooo tough! But this one sleeps on the job.
He's so used to us taking close-up photos that he's starting to get brave and reach at the camera (the best a 7 day old can)
So, I originally tried to post this when we got home from the hospital at 11pm last night, but I fell asleep holding the laptop. Thursday I think I mentioned that he had to get another platelet transfusion. His count went from 47,000 to 42,000. And you think, hey, that's lower than what he started at, that's not right. Well, you ARE right!! So, we're thinking that MY blood (antigens) pretty much don't like anybody's platelets! Rrrreeeer!!! Hisssss! I have angry blood!!! So, he needed another platelet transfusion immediately following that one Friday morning. Which they added something to it that either protects his platelets from mine or it fights against mine to make the transfusion work better. His count went back up to, I think, around 152,000, which is a good range to be at, and it's 4 am and I just called the nurse and they had only dropped to 147,000. Sounds like they might be dropping at a slower rate now. We'll see......... Tomorrow....(technically TODAY)....is a whole new day.

Jack Day 7

Joe thinks he's a photographer now. He takes the funniest close up shots you've ever seen. Most of them get deleted.
Jack really dislikes getting bugged. Especially to get a blood pressure reading or to take his temperature. He just cries and cries.
Jack holding Daddy's finger.

So little baby Jack's platelets are not cooperating. He had to get another transfusion this afternoon and they said he can't go home until his platelets stay at 100,000 for 5-7 consecutive days. They had dropped to 42,000, which is VERY low. When he was born he had 9,000 which is CRITICALLY low. A normal person has about 150,000 to 250,000 platelets. They are doing a lot of blood work and tests on him all the time. When he was born Friday and they had taken him to Primary's, the pediatrician had my blood drawn to run some tests on me and my platelets. They told me today that my blood makes anti-bodies against his platelets and basically has been eating them my whole pregnancy. He also might have a problem in his bone marrow where platelets are made. He's making red and white blood cells, but they are not sure if it's making platelets. He could possibly have Hemophilia. Or some other coagulation problem. It could honestly be about 100 different things so it may take time to pin it down. Until then we'll continue to drive up there everyday, and sometimes twice, until we can take him home.

Jack Day 6

Now that he's done being jaundice, and out from the lights, we can finally dress him in some onsies. This one is my favorite because Grama bought it for him.
BIG YAWN!!!!
What a funny face he's giving.......
Joe gave him his bath tonight. As you can tell Jack didn't like it. But he sure is cute when he cries. He has gained almost 5 oz. and now weighs 7 pounds 5 ounces. What a fatty. He is still doing really well and they did another CT scan on his brain this morning, and the neurologist says nothing has changed, which is good, cause that means he hasn't had another stroke. His darn platelets keep dropping though and he might need another transfusion. Hopefully his little body will start making its' own platelets. We'll see tomorrow if they've gone down any more in the morning. Jack sure likes to eat and tomorrow they will let him eat a little more.

We sure love this guy and thank our Heavenly Father for giving us such a gift. What an awesome responsibility. We can't wait to bring him home!!!!!

Jack Jack Day 5

Our first family photo. Complete with I.V.'s and everything.
This kid LOVES his Dad. He only stares like this at Joe. Do ya like Jack's HUGE double chin?
Awwwwww........CUTE
Jack just chillin' in his "crib".
Jack had a busy day today. He had his MRI/MRA done today at 9am. They had to sedate him for the exam and he slept the rest of the day until we fed him at 5pm. Don't worry he didn't starve he's on TPN which means he gets his "cheeseburgers" through his I.V.. This afternoon we got the results from the MRI/MRA. The neurologist said that he had a blood clot in his right temporal lobe of the brain and that it bled behind the blockage. The good news is is that where it happened is not a vital part of the brain. It controls his left arm and hand. He's been checked out and tested by the neurologist many times and she can't find anything wrong with his motor skills or his reflexes. He moves both arms the same. She said that it takes time to see a disability, if there's going to be one, and to start lookig for differences in his strength between the arms at about 6 months of age. If there is a big difference than we would do another MRI. If not than at one year old.

Jack Day 4

A proud Grama. Today was a good day. They put off doing the MRI/MRA until tomorrow. That ment we could play with him all day.
They also allowed him to start eating today. It was soooo funny because he was so excited to eat that while he was eating he forgot to BREATHE!!!!! SOOO funny!
Little Buddy
Daddy feeding him. He's gained 2 oz since he'sbeen there.

Jack Day 3

My little boy is very particular when it comes to sleeping. He HAS to have his little hand fanned out on his cheek like that. OR he has it in a fist up against his cheek. If you move it he puts it right back. So yesterday, and Joe could explain this better than me, because he is not eating, doctor's orders, they started him on TPN. Which is food through the vein. They ruled out that he has a bacterial infection and discontinued his anti-biotics. They are 99% sure he has a virus. So we are still waiting on lab work to find out which one. He gets an MRI/MRA of that spot on his brain Monday afternoon and that should help them figure out what virus it is.
Joe and I went back last night around 9 pm and he was getting his diaper changed and he was awake and looking around. Joe and I got to hold him and play with him. I can't wait to bring him home bacause this little guy is going to breast-feed VERY well. He's only 3 days old and has mastered the binki and opens his mouth REAL wide when you give it to him. He just goes to town on it. He sounds like Maggie Simpson on the Simpson's. Pretty funny!
Oh ya, and in that first picture he has a faux-hawk. He's got such cute hair. He's gonna need a hair cut in a few months!!!

Update on Jack Taylor

I am tired. I can barely keep my eyes open. I think I've slept 5 hours in the past 3 days..But I don't know for sure...What day is it by the way?

I (Joe) spent all day at Primary Children's with Jack. They ran multitudes of blood studies, took a spinal tap, did a ultrasound and a CT scan of his brain, did an X ray of his abdomen, and have 2 I.V.'s, an art line, a ng tube placed in his stomach, and an ekg and pulsoximeter hooked up to his little body. They've had him under a light for a lot of the day to help prevent jaundice, from bilirubin in his blood stream...So here's what we know. Not much.. The don't know list would take up the rest of this post, so I'm not going there.. The Ct scan revealed a little lesion on the right side of his brain. They cant tell us exactly how big, or how he could be affected by it. His platelet count was 300 after his transfusion yesterday, and it stayed there, ruling out most autoimmune disorders we were worried about. So most likely its some kind of a virus they think.

Jack acts like a normal super smart, super cute baby! He doesn't seem to have any brain damage, but you can never really tell until later in life. I find myself staring at this little angel with such intense love, that I never new a love like this could exist for a person that Ive only known for 24 hours. Absolutely AMAZING!

Mom (Megan) was able to come over to Primary's and see Jack for a few hours today. She was ecstatic to see him, and finally see his face without his eyes swollen, and all washed up and clean. It was a fun couple of hours, until alas she had to go back to Alta View for some pain meds.

We still don't know how long Jack will stay in the hospital for, but a week is what were kind of thinking. He ate a little of moms milk today, and seemed happy ... He is a very mellow kid (thank goodness)hardly cries, and snorts when he does cry. We both just cant wait to get him home..Megan will be released tomorrow from Alta View, and we'll head strait up to Primary's...Keep little Jack in your prayers...Thanks to all of those that have helped us thus far.....