8-23-08 weekend

The PICU ward here is brand new, so they don't have that many patients. When we first got here it was Blake and one other girl. A few more kids came and went during the week but now he is the only one. This afternoon there were three nurses on so he was getting pretty spoiled. He has been holding down his feeds this week. He had one or two large vomits at the beginning of the week so they knew I wasn't making stuff up. The nurses were joking saying he was having excercist projectile vomits. The only thing missing was the head spinning. All his tests came back pretty good. They think he might have had a viral infection that wore out of his system by the time we got him in and settled. They also think his meds were causing havic with his reflux. He has seen many specialists. His Pulminary specialist came and saw him and took him off his Theophllyne. That was the med that helped him with his caffeine level and respiratory additive. With out it in his system he began having apneas. He thinks it was making his reflux worse. A side effect of the meds is hypertension and aggitation of his reflux. So his bp has been better with it out of his system. They did an oxi test the night before and found he does a lot of periodic breathing so they put him on oxygen Friday and did another oxi to see if it made a difference. It did help reduce breathing issues so the Pulmanologist is going to keep him on the oxygen. He said since Blake's lungs are underdeveloped still it is going to have to be something he grows out of. Basically he thinks Blake will have to be on oxygen for the next 2 months, but could get off of it sooner. They have also stopped his BP medicine because his bp has dropped into normal range since being off the Theo. Now we are just down to 2 reflux meds, vitamins/iron and a stool softner. Poor man had to have a supository every night because the soy was backing him up and he would scream from not being able to go. Boy did he go once he got it. Blake got to meet all the many specialists possible that an infant can see. We will have to follow up with them so they can monitor his progress.


Dad is doing good. His surgery went great and he is back at home now. He still has to have a nurse come to the house every day and give him shots of thinner and Kumadin and draw his blood. We are going to fly to Ohio for Labor Day. The doctors gave us the all clear so my my dad will finally get to see Blake. He hasn't seen him since he was 3 weeks old.

8-15-08

Well little Mr. man has been having some troubles. He isn't holding down his feeds very well so we went back to the pediatrician. He even vomited up the bottle he ate while he was there all over the room we were in and on daddy. Nice. So she believed us when we said he was vomiting everything. She switched him to a non milk base formula called Nutramagen. We thought that would work. He seemed to do better on Saturday but by Sunday he could not hold down any of his feeds and all his meds came up with them. His doc called every day to check on him. By Monday morning he was very dehydrated. His pediatrician had us come in. He hadn't gained any weight and had some apnea while at home that morning. I am glad he was on his monitor because that sucker went off and I had to wake him up because he ws not breathing. So while we waited at the office to see her I overheard someone asking how long the wait would be. The nurse said she didn't know becuase there were four patients in front of them and they had to admit one. I thought to myself "man I wonder who is getting admitted?". HAHA boy was I surprised when she walked in and told me that I needed to take him directly over to the hospital where he was going to be admitted into the PICU (pediatric ICU). He had another short apnea spell while I was checking out. His pedi came over right after the office closed to check on him. She told me I was not allowed to stay the night because I looked like crap and I needed to go home and get some good sleep...which I had yet to get. He is always waking up needing to be burped through out the night becuase of his reflux. He has yet to have a good comfortable sleep. So once they got him settled in I went home that night and slept till 10 the next morning, fell back asleep till 2. I had no idea how tired I was.

8-13-08

Blake saw the Ophlamologist today. Due to my backgroudn and genetics...he has reallly bad eyes. I prayed and prayed he would never get my eyes, but he did. First his eyes moved back to a stage 2 which is not good, but that is not the part she is concerned with. Apparently he is very very far sighted. She did some tests that showed he is a +7 in both eyes. If it is not treated he will develop a lazy eye and it will cross making him loose vision in that eye. So to correct the problem he is going to have to be put in hard contacts. Yes I said contacts. He could get glasses but they will be to thick and will put too much pressure on his little nose closing off his tiny nostrils making it hard to breathe.

Oh my dad got put back in ICU. They found more clots in his lungs so they are going to do surgery tomorrow and put a filter in by his heart to make sure if any ever break free they won't get into his heart. They are treating him with thinners again.

8-12-08 First visit to the Pediatrician

Blake met his Pediatrician today. I absolutely love her. The Neonatologists from St. David's called and filled her in on his history so she was well informed about him before she met him. She is very caring and listened to all my concerns. He weighed in at 7 lbs. 4 oz. and 19 inches long I believe.

8-9-08

Ok let me see if I can remember things here. Blake passed his oxi sleep test so they let us room in on Friday 8-8-08. He had a kinda hard night. We did not get any sleep. He fussed and had a lot of reflux. We learned how to give all his meds and he threw up on me covering my pants one time. lol the nurse got a good laugh from it. We got to go home on Saturday 8-9-08. He did good on the ride home. I was really sad to leave. We had been there so long, the staff was the closest thing I had to family around me. I made a lot of friends and Blake made even more. They took wonderful care of us and I will miss everyone from St. David's NICU like crazy. I got used to calling Austin and the Ronald McDonald House, home. So his ride home went pretty well. Rob rode in the back with him and I drove since I get so car sick. He only had a couple spit ups. We stopped in Brenham at a Dairy Queen to eat and feed Blake. I really appreciate the bathrooms that have the baby changing stations, because that one did not and it really stunk trying to change him in that gross bathroom. So anywa we made it home safe. Rob had my mother-in-law tie blue baloons to the mailbox, in the hallway by the front door and in the living room. They also got us a cookie cake that of course Rob and my brother dug into before I could get a picture of it. Boyboy (our greyhound) welcomed Blake home. Mason and Maddie (the two Shih-Tzu's were at my mother in laws.) He was very careful and causious. He gave him a small sniff and kiss on the back of Blake's head saying welcome and then went and laid down for the rest of the night. He was not too sure what to think about Blake crying. The night went pretty bad and we got no sleep. He was very fussy from pain from his reflux and gas.

back in

Ok just a quick update. They re-admitted him to ICU yesterday. He has not able to hold down any feeds and was having some Apnea. They have started running tests and trying to switch some things around to figure out what is going on. He is probably going to go back on oxygen from the sounds of things but we will see I guess. Wish us luck.

Update coming soon

Hey guys sorry I have not updated. It has been crazy around here. We are at home now and I promise I will be putting an update on here this week. We are not getting much sleep due to Blake's horrible reflux but we are getting by. Hope all is well.

8-6-08 Officially 1 day old

Mommy and Blake

Mr Blake Pokluda- 40 weeks gestational...Due Date

He fell asleep with his paci in the corner of his mouth like a cigar.

Blake getting his hearing test done....hooked up

So since yesterday was Blake's due date, he is supposed to start over on his corrected gestational age. So he is 1 day old! haha even though he is really 15 1/2 weeks old. I think I already said this but they doubled his blood pressure medicine. It seems to be working and is keeping it stable. I hope I can remember all the updates here. Let's see, he had an MRI yesterday. They gave him medicine to make him sleepy but he woke up during the MRI so they had to give him a second dose. I think he had a bad reaction to it because he got a small fever later and began throwing up every time he ate....basically everything he had eaten. Even when he wasn't eating, he threw up. The doctors last night ran his blood and did an xray on his belly. Everything looked ok. They said they are going to run it again tomorrow morning because there was a slight elevation with one thing but they think it will be fine. His MRI was normal, nothing new which is fantastic. He had an eye exam this morning. Before I had explained about the different phases and stages. Well he is now in a phase 3 where he has his periphreal vision. He began at a stage 1, moved to a stage 2 (where there is some scar tissue seen), moved back to stage 1, down to stage 0, and today was back at a stage 1. So he is going to have to get checked again in a week or two by someone in Houston. According to the doctors, he is on an Apnea countdown. That is where they count down 4-5 days from his last A&B. As long as he does not have any with in those days he gets to go home. So far he has been good. If he has one, we have to start all over which would stink. Tomorrow he is getting "snipped" circumcised. They did his hearing test today and he passed. He might have some damage in his left ear because it took a long time to pass the left side, but he will just have to be checked again when we get home. Tomorrow night they are going to do his sleep study. If there are no problems, we get to go home. They are going to do his car seat study during the last few hours they will put him in his car seat and see how he handles it breathing wise. The Theoflin which is the caffeine with a twist has been helping out so much. He is alert more and feeds better. Over the past few days he has been spitting up more and was constipated. The doctor also upped his Reglin and Prilosec because the dose he was on was from when he was around 3 lbs. He had to have a gliserin supository yesterday to help him potty because he was backed up and in pain. Poor thing was constantly crying and hurting. I think his reflux has gotten worse. When he trys to eat he cries with an actual painful cry, not a fake one, and has tears coming out of his little eyes. He is so hungry but it hurts him to eat. I think the increased meds will start to help. We also decided to try something new. I went and bought the Born Free bottle that is supposed to help reduce air. He used it twice today and it was amazing the difference. I was originally so scared to take him home just because of the discomfort he has been in recently during and after eating and all the spit ups and vomits. Well when he drank from the bottle he didn't get any extra air, rarely had to burp and didn't spit anything up. He also ate 90 cc's both times and wanted more. The nurses and I cut him off because we were scared he would throw it up like he has been doing, but nothing came out. I was so excited. It is funny how the littlest thing makes such a big difference. So if he passes his sleep test tomorrow night, we get out Saturday. We have to do a "room in" where we stay there at the hospital for the night with him in a room and we take care of him. We have to get used to giving him all his medicines. He is going home on four meds and a monitor. So it looks like we are finally breaking out of here on his 16 week birthday! Tonight he got his bath and was 6 lbs 5.9 oz.

Ok so they found more clots in my dad's lungs and have been treating him but he is very stubborn and has not been relaxing like he needs to so the doctors sent him home today after a week in the hospital. They are hoping he will relax better there at home so the medicine can do its job. A nurse is going to go to the house every day to give him meds and shots of Kumadin in his stomach...OUCH! The docs told him he can't fly for several weeks so of course he is livid that he can not come down, but DAD IT IS OK! We will not have the welcome home party till you and mom can come down, I promise! Please please please rest so that you can be top of your game to come visit. Trust me I will let you change all the diapers and give all the feeds in the middle of the night you want haha! And I can tell you first hand your grandson has smelly gas and poops like no other so they are all yours to handle! :) Ok I love you guys and please rest and relax....

Now that I have written a long blog I am going to bed. I have to meet a lady at the hospital at 8 am to pick up Blake's monitor and get trained in how to use it. Night.

8-3-08

Holding Blake after two weeks gone

Rob feeding Blake

Burping Blake

So comfy

Sleeping

Aren't they cute

Sweet baby boy

Well we were supposed to be out by this past week but his blood pressure is not playing nice. They put him on some meds, then doubled the meds then doubled them again today. They were not lasting long enough till his next dose, so we will see how this round of up'd meds goes. They put him back on his Theophylline today. He had a sleep study test done last night and he did good except for his oxygen staturation levels were in the low 90's while he slept and they need to be in the high 90's. His lungs are still not 100% so they put him back on the meds which is caffeine with a twist basically. It is more for respiration rather than plain caffeine. His Dr. did the sleep test just to see how he did so he would know whether to put him on just caffeine or Theo. He got his answer. He has been feeding ok but falling asleep easy or not wanting to wake up at all so that is another reason they put him back on the Theo. Hopefully he will have more energy with the Theo and will take more from his feeds. Rob came up this weekend and saw him. Blake greeted him with some burps and toots. He loved his bath tonight and got upset when I took him out of it. He also did super on eating and ate the most he has ever eaten. He ate 70 cc's. Yeah. I think the Theophylline is helping. As you can tell by the pictures it was all about Robert this weekend. lol just kidding. So we were supposed to originally get out this past week and then they said this coming week, but since they are having to still deal with his bp and raise his meds they are saying next week, but we will see. He didn't get his hearing test done like they said. Guess it got cancelled or something. It is ok cause it will get done before he leaves. If he cooperates and his bp gets under control we might be out by this weekend (I wish, but doubt it). Here's hoping. Oh he is 6 lbs 2 oz as of tonight. He lost an ounce but that is ok. He is going to be walking by the time we get out of here...ahhh stop growing! haha

7-31-08 6 lbs!

Me, Tiffany and Alyssa

Naked boy

Enjoying his paci before his dinner

Whacha lookin' at boy???

Hi sweet pea

He just loves staring at mommy

He hit 6 lbs yesterday! Well actually 6 lbs 0.2 oz. The surgeon saw him and doesn't think he needs surgery...praise the Lord. He said for us to keep an eye on his testicles to make sure it does not get worse. He still thinks it is just a hydroseal and won't be harmful towards Blake. The Nephrologist came and saw him and started him on meds for his blood pressure. They just went up and doubled the dose today because it wasn't lasting long enough in his system and only worked for a couple hours. He weighed in tonight at his bath at 6 lbs. 1.2 oz. So I got a not so great phone call first thing this morning. Some of y'all already know. My dad developed a blood clot in his lungs and was admitted to the ICU there in Ohio. They are going to keep him for about a week on meds that will hopefully dissolve it so he doesn't have to have surgery. Anyway, I am asking for prayers for my dad please. Also one of my best friends dad was in a roll over accident and needs prayers too. His name is Nelson. On a better note my best friend Tiffany is finally pregnant. She announced it today to everyone. Of course I knew the day she found out, but I couldn't say anything so now that I can I am so happy for her. They have been trying for a while. As soon as her and Clint got a foster child she got pregnant...haha can we say nice timing. That is ok I know they will do great and be just fine. Blake gets his hearing test tomorrow. That is a sign that he is going to get to go home soon. He might need that caffeine back that they took him off of. He did not want to wake up all day today. Not even to eat. He just wanted to sleep. Boy needs a shot of espresso, haha. Poor thing has had awful gas...oh my goodness it is stinky. It made the nurse tonight take a step back...I started laughing and told her "I told ya so". Normally he does it just for me, but tonight he blessed her with it. They are going to move him back into Bay 5 later tonight...this morning. They discharged a lot of babies so all the ones they moved to Bay 7 are now going back to Bay 5. I feel sorry for the nurses who have to move him because he has soo much crap that goes with him. He has a bouncer, boppy pillow, clothes bag, socks bag, dirty clothes bag, mobile for his bed, tubs of medicine, and much more. Can we say spoiled? Just a little :)