7-13-08

Marie "Mimi" and Blake

Uncle Jeff and Blake

"Please, no pictures!"

(this is the only sleeper outfit that actually fits him, it shrunk a lot)

Uncle Jeff and Blake again.

Blake and his bottle

Me feeding Blake

Kisses

Go night-night little man

Blake trying really hard to stay awake

I did not get much sleep last night. I went up there at 12:30 am and he was so hungry. He has to get used to having the feeling of hunger, because he has never felt it before since all his feeds went into his intestines. Now he is getting it and he is so cranky. His nurse was able to talk the doctor into letting him have an extra bottle and he took the whole 10 and then when I gave him his passy to suck on he got so angry once he figured out nothing was coming out of it. He wanted that bottle back so bad. So he basically threw a fit from around 2:00 till 3:30 in the morning. He would calm down for 5 minutes and then back to screaming again. His nurse and I took turns trying to comfort him. I finally got him to quiet down and got him into bed sometime around 4 and was able to go home and go to bed. Wow I was tired. I looked like a walking zombie. I got a little upset while at the NICU last night. Isabelle, the little twin that survived was having a bad night and had to be put back on the ventilator. They were having a hard time keeping her stable. All I could do was stare at her and think of how Blake was the same size of her and how he went through a lot of the same stuff. He was so small and looking at her brought back all the memories and I started getting sad and upset. I looked at him and thanked God for our little angel and the blessings he is bringing us every day. His nurse talked to the doctor this morning and they went up on his bottle feedings to 30 cc's twice a day and the rest is through his tube. He loves it. It wears him out and he goes right to sleep. Rob's mom and brother came to visit today. They both got to hold him and visit. It was the first time Jeff had seen him. They are all saying his has my eyes. Lovely aren't they haha. Oh they did up his reflux meds to try and help with all the reflux he has been having. It has seemed to help and he has not had as much residual the past few days. They also had me sign approvals for him to be able to be vaccinated. He is getting to be a big boy now. He weighed in at 4 lbs 8 oz last night and tonight 4.9, he gained an ounce today. He had been staying around 4.6 this whole week and had lost several grams but it looks like he has come back up, or they could have just weighed him right after he ate. Poor Rob had to work this weekend. He picked up an extra on call that was available to try and get some overtime to help us out, so he did not come up. He did however have to deal with my pet rat…yes I said rat dying last night. I have had her for about 3 1/2 years. She was my classroom pet for the kindergarten class I taught back in The Woodlands. She was the sweetest thing and loved attention. They only live about 3 years so she had a long life. Rob had a hard time with it because he was scared to tell me and the fact that he saw her not feeling well and went over and got her out to give her some love. He put her back and she started begging for him to pet her again and was breathing hard. He petted her and closed her cage and when he walked back by she was laying down in the same spot but not alive this time. He is such a great husband and loving man. He has been so strong this whole time for me and I guess it finally just all hit him at once and he broke down. He has done so much for our family and I love him more than anything for it. Ok I am being all mushy and stuff so I will stop. So we are hoping to be out in the next three weeks. Fingers crossed. I am so scared to leave but at the same time, so excited. I can't wait to be home with Rob and our friends and family. Ok so this evening he got upset again because he wanted a bottle. I kept trying to rock him to sleep and he wanted nothing to do with that. I changed his diaper which helped him calm down. Then I sat him up and that to see if he just wanted to sit up and sure enough, he wanted to hang out with the big kids. Haha. He sat up for about 30 minutes or so just watching everybody else, grunting, burping, and chillin’ out. He loved it. He also loves to be bounced, vibrated and patted on the back. Those vibrating seats and beds are going to come in very handy…ooh which reminds me I need to get his pac-n’-play. That is kinda of a play-yard/sleeping bed but for infants and has a changing table attached so you can use it anywhere in the house and take it on trips. The bed vibrates and plays tunes, gotta love it. I need to make a list of everything I am going to need before we go home, find a pediatrician, get my house cleaned “sterilized”, see an Internal Specialist, and much-much more. Ahhh how long till he gets out??? So maybe I have 3 weeks. Oh my goodness, I am going to be busy.

7-12-08

Me giving Blake his bottle, he has to be sideline while feeding....day I had my seizure, don't I look bad haha

Full and sleeping

Throwing a fit

Happier now

It has been a couple days...sorry about that. By the time I get home from going back and forth to the hospital so much every day, I am exhausted and just want to go to bed. Ok just to explain a little about the first pic, that morning I woke up and had a small seizure. I am epileptic, but I have not had a grand-mal seizure since I was 12. So the good news is I did not have a grand-mal one but I did black out and lost about 10 minutes or so. When I came to I was a little disoriented and didn't know what happened. Once I realized I did my best to rest the rest of the day. For the rest of the day I was having small ones where I was awake, but I my mind would stray and have small what I call dreams with a twist. My mind goes off into a tantrum and all of a sudden I remember dreams that I supposedly had but never blacked out for. At the same time I am confused about my surroundings. It is hard to explain. I had one similar, but worse, last year when I was dehydrated and tired so I figured I just pumped too much and am not drinking enough to rehydrate. Kind of pointless to go to the doctor because the last time they could not find anything, they never can unless you are actually having the seizure at that time. So that is why I look so out of it in the pic. I went to take milk, saw him for a minute and went home for the rest of the day to rest. Next day I felt good as new, scared of having another one because it is really freaky, but much better. Anyway, let's see. Blake has been doing well. He got to take his first bottle the other day. The speech therapist gave him his first one of 10 cc's and I got to give him his night one. He is getting bolas feeds now where he gets all 32 cc's over 1 hr through his feeding tube. They then stepped him up to 44 over 1 1/2 hrs. So he is handling it pretty well. They started the bottles on 10 cc's so that he could just get used to sucking swallowing and breathing. He LOVED the bottle. He took all of the milk. He still spits up and actually threw up all over the place yesterday but I think it was because we had been moving him around too much. I gave him his bath Friday night and he decided to poop in his nice clean blanket and cover himself in it after the bath so I had to wipe him down again before I could get him dressed. He's a pooper, just like his daddy.lol He has also given me several peepee showers. I have learned and cover his little peter up before each diaper change so he can't get me. He did get his nurse last night though and covered his bed so she had to change the blankets.

7-9-08

Nurse taking his nasal canular off for pictures

Wide eye'd awake...poor stretched out nostrils

Trying to smile

What's up little man?

Talking to us...

Blake mad...his bed and mobile that he loves to stare at

Blake looking at his daddy

Me Blake and Rob

Blake at 10 weeks

Happy Daddy

The pics above are from this past weekend when Rob was here. They took his nasal canular off for pics. He did good for a little bit and then started to d-sat some so they put the oxygen back on. We are getting there though. So not too many changes since I posted the other day. Blake is 4 lbs 6 oz. He is gaining mini ounces. He has gone from 4 lbs 6.4 oz slowly up to tonight he was 4 lbs 6.9 oz so hopefully tomorrow he will hit 4 lbs 7 oz. His bed has been moved a couple times. I said before he was moved down a couple spaces. Then last night they needed a place for a new admit so I volunteered to get moved into the isolation room because he would have his own room to himself. So last night we were in there. The 24 week twins that they were making room for by moving Blake the first time were born Monday night so when I came in yesterday they were there and a lot of commotion was going on. There was a little boy and a little girl. They were the same size as Blake had been 1.3 and 1.4. The little boy was really sick and the doctors were saying it wasn't looking good. Before they moved us to the isolation room I was rocking Blake and the nurse had pulled the curtains around me because there was so much going on next to us with the twins. They brought the mom and grandmother in and I could hear her talking to the little girl and asking all the same questions I had asked. I was looking at Blake and tearing up because I knew what they were going through. I just held him tight and stared at him. They called for the dad to come up because they were not sure if the boy would make it or not. They did everything they could for him so it was just a matter of his strength. The parents are mine and Rob's age. Last night on the way out I ran into the grandmother and I talked with her and let her know that they were really good there and how Blake had been 1.4 and now is 4 lbs and doing so good. She said she really needed to hear from someone that a baby their size can pull through it. I told her if they needed anything to let me know. I have been here long enough to know what everything is. She told me that the little boy was really sick and had an infection because his sac had broken and he developed and infection while in utero and his lung collapsed. Well when I came in this afternoon I immediately saw that his isolet was no longer there (his was in Blake's old spot) but his sister's was still in her spot. My heart sank for them because I knew what that meant. I looked a little further over and saw they had moved Blake back into his spot again. He was back where he was before but under bad circumstances. Apparently there was a baby that came in that needed to be in isolation so they moved Blake back to where he had originally been since the little boy died. Yes I liked my old spot where he had been for the past 10 weeks but I would rather that the little baby boy that passed away be back there, than be in that spot. The parents came in later to visit the little girl Isabella and the nurse went through everything with them that they had gone through with us. They asked all the same questions we had gone through. I heard the nurses tell them stuff that I know they had told me, but I was so out of it and in shock after his birth I couldn't remember them telling me those things. I know they had, but it was all a blur. So I understand completely what they are going through and it is so hard to watch other people go through it. I try to keep Blake quiet while they are in there because I know it will upset them that another baby is where their son should be. I try to whisper to him and not laugh or be silly with him either because I don't want to upset them. They need time to deal with it. I know it took me a while and Blake was still alive and it took me a long time with both my miscarriages, especially the second one.

On a better note, they went up 1 cc to 14 every hour on Blake's feeds. He has been handling his feeds in his belly pretty well. He has had residual when they check it and he has been spitting up when he gets upset. He just has to get used to it....I hope. He is still pooping a lot so I know the food is giong down. I tried explaining to him that we have a schedule to keep and needs to get better so we can be out in the next 4 weeks. Haha, yeah right, he is stubborn and wants to stay till the last day. I am excited that we are getting closer, but I am also scared because I don't know how it will go. I almost want them to send him home with a monitor so I can feel a little bit more secure about things. We will see. But, he is growing every day. Oh yea, I gave him his bath in a tub last night. He liked being in the warm water. He just didn't like when I stopped with the warm water and he got cold. His hair is still sticky from his IV he had in his head...he had a second one the other day, but he is done with his antibiotics so no more IV's...hopefully. Anyway, I apologize for this blog being so long. I just wanted to share about the twins and ask for you to pray for that family. I know they could use them right now. Thank you. I feel so blessed to have such wonderful family and friends that care so much about us. Love you all!

7-7-08

I walked in this morning and they had moved Blake's bed to another spot. It scared the crap out of me. We have been in the same spot for 10 weeks and then all of a sudden he was not there anymore. They had only moved him down 2 spots but it freaked me out to not see him there. They had to make room because they have a mom on bed rest that has 24 week twins that might deliver any minute. They are trying to hold her off but you now how that goes. I found out the hard way. So he is in a different spot that is a little more cramped. The doctor came over and saw him while I was holding him. They changed some of his meds yesterday, took him off some of his meds and changed his milk fortifier to Neosure. Since they had made a lot of changes yesterday they waited till today to pull his feeding tube up to his tummy. He has been doing ok with it that way. He has been having reflux and burping a lot. I have to be careful when I pick him up now, because if I move him too much he burbs up his milk everywhere. I guess he just needs time to adjust to having milk in his belly. We are hoping he gets better with it in the next few days so they can try feeding him by bolis (all his food at once instead of continuous). He finished his antibiotics for his ear infection today and got his IV taken out this evening. We bough a mobile to hang over his crib and he loves it. He watches the black and white circles turn and just focuses in on them as best he can and loves the music as well. It is actually nice classical calming music and not annoying like other mobiles usually are. His head has grown so his ears are smaller now, they fit his head better. When he was born his ears looked huge because his head was so small, but now he has grown into them and they look normal. He is still 15.75 inches long and now weighs 4 lbs 6.6 oz. He will be 26 weeks gestational tomorrow. Wow I can not believe how long we have been here, which means his hospital bill is really really expensive, haha.

7-5-08 10 weeks old

No big changes right now. He gained weight and got up to 4.5 lbs and then lost some weight and then gained again today and he is up to 4 lbs 6 oz. He has been doing good and is getting used to his new crib. Rob came in this weekend and has gotten to see and hold Blake a lot so far. I keep itching to get him back in my arms but I give Rob his time with his baby boy. They are going to take his feeding tube out of his intestines tomorrow and put it in his tummy. Tonight he got a bath. While he was still naked Rob was holding him while I got his diaper out and his blanket so we could get him dressed. I was joking and told Rob to be careful or he would get pee'd on. Well apparently Blake took it to heart but instead pooped all over Robert. Luckily he had a blanket under him so Robert only got half of it on his arms and clothes. But Blake had to get wiped down again because his back was covered in it. His nurse and I got a really good laugh out of it. I told Rob he has officially been christened as a daddy. They are going to check all his blood levels tomorrow to see if they can wean him off of any of the meds and additives that he gets daily.

7-3-08

Today was a very good day. They moved Blake into an open crib. He has been holding his own temperature. While in his isolet he was getting too warm even with the temp turned down so they are trying him in the open crib to see how he does. So far today he has held his temp, but they are keeping his isolet close by just in case he drops too low. The doctor said don't be surprised if he has to go back in, but they said that about him possibly having to go back on his cpap and he proved them wrong. They said he might stay around the same weight for the first few days because he uses all his energy to keep his temp. Right now he is still 4 lbs 3 oz. He lost 10 grams last night but that is ok. They are going to try and move his feeding tube from his intestines into his stomach this weekend. They will see how he does and if he does not aspirate milk into his lungs they will leave it there. Hopefully if he does well then in the next week or two he will get to start bottle feeding. He is at 35 1/2 weeks gestational and I asked the doctor if he thought Blake would be in the hospital past 40 weeks. He thinks Blake will get out before his 40 week mark, so that is just 4 1/2 weeks away. Yeah oh my gosh I can not believe how fast time has gone by. He is already 2 months old and will be 10 weeks Saturday. Little man has been pooping like a champ. When I came in this morning, his outfit had been changed from the one I put him in last night after his bath. Apparently when his nurse was changing his diaper, he decided he was not done and pooped everywhere. His outfit was covered in it so this morning when I picked it up to put in a bag so I could take it with me to wash, it was hard as a rock where he had gone. Yuck! Wow bet he feels better lol. Ok now that I have grossed everyone out haha sorry. Well daddy is coming tomorrow and has not seen Blake in two weeks. He has changed a lot in two weeks. He is filling out and looking more and more like a baby. My Aunt Cindy and her friend Dee came yesterday to see us, they could not believe how big he has gotten and how different he looks. He looks so big wrapped up in his blanket but then when you lay him down and unwrap him, you can see he is still so tiny. It was nice to see them and get to visit with them. Blake has been awake a lot more now too. He also still has his IV in his foot (they moved it from his scalp to his foot) he finished his ear drops last night and hopefully won't be on his IV antibiotics very much longer. He d-sats a little bit since he is trying to adjust to everything new, but he has been holding his own. Very proud of the little turkey.

7-1-08

We are at 4 lbs. 3 oz. He gained 2 oz over night. I guess it is really helping him gain weight by having me split the milk in to the fore milk that contains no fat and the hind milk that is all fatty. They are still giving him just the hind milk right now. It seems to be puttin weight on him. He actually has some little chubby cheeks and his abdominal area is filling in nicely as well. Before his chest was caved in and you could see his ribs and his tummy poked out. Now, it seems to all be evened out, you can still see his ribs some but not nearly as bad as before. I had to change his diaper like 3 times in a row, because each time I changed it, he pooped again. Poor things tummy must have been hurting. He is doing much better now when I hold him. He has gotten used to the nasal cannula. While I was holding him he turned his head towards my chest and tried to latch on to my t-shirt several times. It made me laugh every time he did it. The doctor said that he could go ahead and try to root and latch whenever I kangaroo held. We are hoping that by the end of the week or next week sometime they will move his feeding tube back into his stomach. Then once it is there they will see how he does. If he handles it well we can start him on bottles soon. Keep your fingers crossed. So he is gestationally 35 weeks today. He is the size of a 33 weeker bc he was two weeks behind when he was born but he is finally putting on some weight. He was fussy for a little bit so I picked him up and started patting his back a little. Wow he let out a huge belch. It was loud enough that his nurse who was sitting two isolets down heard him. She and I both started laughing. This evening I tried doing the whole nuzzling, sucking thing with Blake and he just was not having it, he wanted to suck on his passy instead. I always swore I would never breast feed because it grossed me out, but now I am chaning my mind. It isn't as bad as I thought it would be. He wanted that passy so bad, so I tried to trick him by putting the passy in front of me, got him to suck on it and then snuck it away real quick so he had me instead. Yea that worked all of 5 seconds till he figured it out and threw a fit. Lol he is a smart little cookie. So we will keep trying. Takes practice right. Besides he can't feed yet, so it is just getting him used to it from what the doctor said. Oh they had to move his IV because his veins in his arms were not holding. They put it in his scalp above his forehead. Ouch, it looks painful but doesn't seem to bother him any. Ok so I think I am all caught up for the entire weekend.