6-17-08

Well not too many changes in the last two days. He has had some not so good mornings but does better through out the day. He is still at room air 21% which is good but they have not been able to lower any of the rates yet on the cpap machine. Darn-it. It is ok, we will get there. I forgot to say before that they have moved him up in his diaper size. He still fit "barely" in the teenytiny ones but he was managing to pee out of them so they had to put him in the next size up. We have to fold it over to make it fit and overlap the straps but it works and holds it all in. I had a bad night last night myself. My bp started going up (it did it the night before too and I called the doctor and he said to take an extra 100 mg of my pill so I did). So when it started going up again last night I took one like the night before. He has been trying to wein me down, but it is not working to well. After a little bit I took my bp and it had gone up even more to 157/114. I tried to call my doc but he was off last night. I was also having abdominal pain like I had when I relapsed. I think it was just reflux or something because after several hours and half a bottle of mylanta and a roll of rolaids it finally went away and I was able to go to sleep, but I had a lot of drama dealing with the doctor on call for my doctor. He was pretty much an ass and not very helpful. Anyway, my bp went down some, not all the way but enough for me to not stress over it and I went to sleep, but this morning and all day I have felt horrible and ended up napping a lot. I am going to try and go by my docs office tomorrow and talk to him to see what I should do about my meds. Ok back to Blakey. He did not want his cpap today and kept trying to push it off of his nose when I was holding him. I had to wrap up his arms so he couldn't get to it. Feisty little man. His temp was pretty low today. Not sure why. It was at 96, which is not good at all for babies. The nurse put heated gel pads all around him on his body to see if it would help, then we put him in a little flannel outfit that was huge on him, (pictured above). His legs only came down to the part of the outfit where the knees are supposed to be. It was so big on him but helped warm him up. She swaddled him up and put his hat on him. Then she turned up the air temp a little in his bed to try and help. I guess it worked well because when I came back later his temp was up to 100.7 OK way too high now. LOL he just can not get a break. Good thing he was getting his bath, that helped bring down his temp. I bathed him and he did very well, did not cry much at all. He was wide awake afterwards. His hair was so fuzzy after it dried. The nurse had to give him a supository tonight because he had not pooped. Wow did he ever pooped. I went to change the diaper and the clean one stuck to the dirty one when I picked it up, so of course he started pooping even more and it went all over the bed, his outfit and him. Nice right. I cleaned him up, we changed his bed and changed his clothes, tucked him in and he went right to sleep and was out cold by the time I left. He did have a lot of spit up today and was able to blow some ginormous bubbles. I should rent him out as a bubble machine. Some of the pics above are of when he was getting suctioned. They had to change out his tape so I got to take pics of him with out anything on his face (except his feeding tubes). His poor little nose is so stretched out. He looks like a little piggy. The other is of him in an outfit. That is the smallest one I could find, and it is still too big. They are made really wide for some reason. And of course pics of me and Rob with him.

5-15-08 Happy Father's Day

Happy Father's Day to Robert! He is such a great daddy to Blake. We slept in this morning because we did not leave the hospital last night until after 2am. So we were a little tired. They took him off his IV today and this evening upped his feedings to 9.5 cc's every hour. He is still on a continuous feed but is having a lot of residual coming up. He amazed us again today. When we got there, he was laying on his tummy. He decided he was not happy there anymore and put his arms and hands up by his chest and pushed up his entire upper body and head. Then he layed back down and lifted his head up with out using anything but his neck and willpower. His nurses jaw dropped and so did ours. He is getting very strong in many ways. Just wish his lungs would heal. He had several bradys while Rob held him and then when we put him back up. He was just tired I guess and didn't want to work to breathe anymore. Good news is that he is up to 3 lbs 6 oz and is 15 inches long. Rob left this evening to go back home. We will miss him but the weeks go by pretty quickly so we will see him again next weekend. I thought my bp was holding ok with the 200 mg in the morning and 100 at night, but apparently my body didn't like it too much. I took it this evening and it was 145/109. I called my doctor on his cell and he told me to take the other 100 mg. After a couple of hours it took it down some to 139/93. Geeshy don't know what to. Oh well we are working on both of us I guess.

5-14-08 7 weeks old

The doctor called and said Blake had a bad morning. He had a lot of dsats and bradys. They are going to switch up his meds and try something new. They are taking him off of the arithromicyn and trying prilosec and one other med that they hope will work better on his reflux and clearing out his tummy. The docs also told us that most babies at his gestational age are off of the cpap at this point, but Blake's lungs are not developing like they should. They are trying everything to help him and they are coming around, just slowly. They said his lungs can not properly heal until his reflux calms down and he is able to hold down his food better and not aspirate it. They messed with his rates on his cpap machine. They lowered one and upped another. It seems to be working bc he has been around room air at 21% most of the time. Rob saw him last night for the first time in two weeks. He is so much bigger than when he last saw him. We made friends with the couple that had a pair of twin boys next to us in the bay. Turns out they are our new next door neighbors at the RMHC. It is funny how they are directly next to us at both places and are around our ages. Anyway, they got moved up to bay 5 which is the next step up to going home. They were only 34 weeks so are much better off than Blake. A newborn baby is now in one of their spots. I walked in and thought that baby was huge compared to blake and he is only a newborn. I get so used to seeing Blake and thinking he looks big, and then you see a normal size baby and realize how small he still is. He is 3 lbs 4 oz now. He still had some barium contrast in his intestines so they gave him a suppository to make him poop. Wow did he poop. He went through 3 diapers. Oh they are putting the bigger diapers on him now too. They are huge on him but he was peeing out of the other ones. Too much peepee and not enough diaper to hold it all in. lol. Rob held him after he got done pooping like crazy and he felt much better. Blake was wide awake the entire time his daddy was holding him. I caught Rob tearing up and crying a little. He loves his little boy. Him and Blake didn't take their eyes off each other. It was adorable. Of course when I went to hold him later that afternoon he was tired and only opened his eyes a few times to peak at me and then fell back asleep. We went back in the evening to give him his bath. Right before he reached up and grabbed onto this rod that holds a syringe that is connected to one of his feeding tubes. It allows for the extra air to escape his belly. Well Blake reached up and grabbed the rod and pulled himself up off his bed. He did a pull up. He is so strong. It amazed us and his nurse. He didn't like getting wet but loved being clean and was happy after it was all done and he was dry. Oh and he is at 8 cc's of milk every hour

6-12-08

Today was pretty good. He only had 6 A&B's (bradys) That is better than the other day. They upped him from 2 to 3 cc's of milk every hour. Still on the IV. I saw the doctor today and he is having me reduce my meds more to try and wein myself off of them. If it doesn't work, than my body has developed cronic hypertension. If I have developed chronic hypertension, and if I get pregnant again later on, my chances of developing superimposed (severe with HELLP and toximia again) preeclampsia is about 80-90%. If I have not developed chronic hypertension and my bp regulates once the preeclampsia is completely out of my system, than my chances of developing regular preeclampsia are about 50%.

6-11-08 We made it to 3 LBS!

Blake had a hard night. He started having a lot of bradys after midnight. All the doctors got together this morning and had a meeting to discuss Blake. He does better when the tube is in his intestines and he is on a continuous feed so they started that again. He is getting 2 cc's every hour (8cc's over 4 hours) on a continuous feed. He is also still on an IV so that he gets all the required nutrients and fluids. They have kept him swaddled in order to keep him from pulling out his tubes. He seems to like being wrapped up all the time. It makes him feel safe. He did good most the day. When I held him he got a little too comfortably sleeping and ended up having a brady attack and stopped breathing. His lips turned purple and I rubbed his chest but it didn't work, so the nurse started tapping on his foot and got him to respond after a little bit. It scared the crap out of me. I was fine till I saw his lips turn blue then purple. The nurse kept reassuring me though so that helped some. She said he would come out of it and he did. It just took a while. I guess it was harder on me because I was holding him. The doctor told me that there is a "thing" ( I do not remember the name) that is right before the duodenum (the entry to the intestines) that they think is spazzing causing the tube and milk to reverse itself allowing milk to enter back into the stomach. As long as the milk goes down his intestines he does good and does not have very many problems. As soon as it comes back up he struggles to breathe. Tonight he hit the 3 lb mark! YEAH he is officially 3 whole pounds. That is so exciting for us!

6-9-08 & 6-10-08

Nothing really new yesterday. He stayed on his IV and they watched him closely. Today he was much better. His cultures came back with no growth which is good and the antibiotics seemed to knock out the infection he had. So, the doctors decided to start him back up slowly on his feeds, they took him off his antibiotics and is back on the one to help clear out his tummy when he eats. He is getting 4 cc's every 3 hours on a regular feed into his stomach. They are trying to get him used to food on his stomach again. He is still on an IV for nutrients since he is not getting very much food. The nurse told me tonight that the nurses and doctors there in the NICU know of him as the feistiest baby they have. In a way that is good, but also bad because he pulled out his tubes several times everday last week. They were able to go down on his cpap rate to 25. They had taken him back up to 35 because of all the problems he was having, but now they brought him down to 25 (the breaths per minute). He was also at room air (21 %) today. That is great. Well mostly because they withdrew all his feedings and pumped up his rate. His lungs are not having to fight breathing over all the milk he was refluxing and the infection is pretty much gone. Now we just have to get him strong enough to handle the feeds. They are basically starting over from scratch to try and get him to handle them. Tonight he kept pushing back up the small amounts of food they were giving him and his tummy was really hard, so they are watching it tonight to see what it does. He lost an oz but that is ok. So he is at 2 lbs 13 oz and is 14.2 inches long. When I held him this evening, he fell right to sleep as soon as he hit my arms. He had been suctioned right before I got there so they wore him out. When the nurse put him back in his incubator after I held him, he started having a brady attack because water got into his airway from his cpap. He was so tired, he never even woke up during all of it. The picture above was after we got him in his bed and he was passed out cold. He had his little hand over his mouth, it was too cute.

6-8-08

He had a little bit of a hard night after I left. I ended up not going back up last night because I was tired and Rob told me to go to bed. lol. As of 10 this morning, Blake has had 8 bradys (A's & B's) since midnight last night. The doctor called and told me that he started Blake on Azithromycin which is a low dose antibiotic which is also used to help clean out the stomach. Since he was having so many bradys within short periods of time, they increased his rate on his cpap from 20 to 30. I went in around lunch and held him. He was wrapped up like a little burrito and the nurse had changed his little outfit because he had spit up all over the other one. This outfit was so big on him but cute as can be. He high satted the whole time I held him and did a great job.
So I went back to the RMHouse to rest and got another call from his doctor around 4 pm (which is not good to get more than one call a day). He said Blake was having a bad day. Since 1 he has had 6 more brady's. That is 14 total so far. He said Blake was not acting like himself at all and was constantly de-satting and having apnea spells where he stops breathing completely. Some of them would last a whole minute of him not breathing (he still gets air from the cpap machine but it does not fill his lungs completely. He has to do that himself.) So they stimulated him constantly and turned up his oxygen and finally got him to breathe on his own again (well with help from the cpap of course). His doctor stood at his incubator for about 45 minutes watching him closely. His doctor said that they don't know why he is doing this and he might be developing a new infection. He decided to take him off his feeds completely, start him on an IV with fluids and nutrients to replace his food, and they took a blood sample. They are going to run a CBC and a culture to see if any infection grows out of it. They also put in a catheter (how they have one small enough for that little guy is beyond me) to draw urine and check for a urinary tract infection. His temp was low in the 97's earlier and later this evening went up to 99.5 He is not wearing clothes anymore because of his IV and they need to be able to see his chest and belly. They stopped all his other meds and started him on two strong antibiotics. Whatever is wrong with him, his body is not liking it at all and it is showing in his actions and breathing. I went back up this evening twice and held him this last time. I held him really close to me and he snuggled up and high satted the whole time. Oh they have turned his cpap rate up even more to 35 breaths per minute. He really likes to be swaddled and held. He looks so big in the pictures swaddled but it is all blankets. He is still so tiny....and adorable!