5-31-08

Yesterday, we got to have back one of our favorite nurses and Blake greeted her with the "biggest poopy diaper" that she said she had ever seen on a preemie his size. It was so bad she had to change his bedding because it got all over everything. Robert laughed and said "That's my boy!" Gross. I don't know if I said this in the day before, but the doctor took him off his diaretics. They said that his sodium is too low and is remaining low no matter the amount they try to suppliment him with because he is releasing so much fluid. So they stopped the diaretic meds so that his body can normalize. The down side to it is that now he has to have more oxygen given to him. The diaretics were helping him to get rid of water that is on his lungs. Without the meds, the water sits on his lungs making it harder to breathe so that he needs more oxygen. He is also retaining fluid so his little legs and feet are so swolen, but according to one of the nurses he looks better than he did last night. She said his hands were swollen and his feet were much worse, so he is releasing it slowly. That is good. I just feel so bad for him. So for one trade off we have to have another. He is now up to 2 lbs 5 oz. He has gained a whole pound since birth 5 weeks ago. I can not believe it has already been that long. Of course I was in the hospital for 3 weeks of that time. lol I started trying to walk a little more today. My bp didn't like that too much and went up, but I rested and got it back down so it's all good. So Robert got to kangaroo hold Blake tonight. He was soooo nervous and the first few pictures I took show it in his face. Poor thing I rubbed his neck and back and did everything I could to get him to relax. He finally did and enjoyed every minute of getting to hold his son. Robert is a human heater and when we went to take Blake off him to put back in the incubator they were both sweaty. But Blake enjoyed himself. It took him a little while to get used to being on someone new, but once he got comfy he went to sleep and rested nicely. He stayed awake for a long time and then would go in and out of conciousness to see what was going on. Some of the nurses from the front made him a little knitted hat. It is almost too small for him now. Oh and he is soon going to out grow the tiny diapers he has been in. His little tummy is getting big and the straps are barely reaching around. Robert is going home tomorrow. His stay went so fast. On top of all that my dog Mason has a horrible ear infection and his tear ducts are not working and his eyes are clotting up so my mother-in-law had to take him to the vet and that cost $300 we hadn't planned on. They said if they can not get the infection to heal, they are going to have to amputate his ear because it is so bad. I feel so horrible, because while I was home before all this I was able to care for his ears every day as usual, but being up here I have not been able to so it has just gotten worse and worse and now I can not take care of him because I am taking care of Blake. Mason was our "first baby" Robert got him for my birthday when we started dating. I feel bad that I can't be in both places at once.

Oh and the last thing on Blake. His eyes and movement are developing more and more. When the RT came to suction him tonight, she pulled back the cover from his isolet and turned on the overhead light which is really bright. He was laying on his back looking straight up and when the light came on he immediately turned his head away from the light and towards us with a mad look on his face. The OT gave us a list with things he should be able to do by certain times and he is up to date on most, behind on others and ahead on one: movement. He shouldn't be able to turn his head from midline to side until 33 weeks and he is 30 1/2. That is really good that he is ahead on that. He is so feisty and wants things his way. It is amazing how big he looks to us but is still so tiny. Every day is a real blessing.

5-29-08

We were on a rollercoaster today. His oxygen sats were kind of all over the place. Having the feeding tube in his intestines definitely helped with his breathing. Now that it came out and is back in his stomach, it is showing a big difference and his breathing has worsened. Hopefully the tube will work its way back down into the intestines and his breathing will improve again. They took him off the antibiotics today and are increasing his sodium suppliment in his feeds. I got to hold him for about 45 minutes today. Then, I got to put him back into the incubator for the first time by myself. The nurse stood by to help with the chords. Of course as soon as we got done, he had a poopy diaper and needed to be changed. The nurse laughed and said he must be really comfotable to go potty while laying on my chest. We ran into my doctor in the halls at the hospital today and he said it was ok for me to walk a little around the house and NICU. He said to do it in baby steps. I am so tired of not being able to take care of myself so he is allowing me to get out of the wheel chair from time to time using baby steps to try and see how my body handles it. I did ok a couple times while in the NICU and around the house, but then my body started wearing out and my bp went up some so that was enough for me and mom made me get back in the wheel chair and sit down. I am struggling to keep up with Blake on milk. This bp medicine is draining me of fluids and if I can ever get off of it, they are not sure that my body will recover and produce more. That stinks for me because it makes me feel like a failure when I see all these moms bringing in completely filled bottles to their babies and mine are like one quarter filled. There is a medicine that moms can use to promote milk, but I can not get on it due to my bp and even when it settles down they said I still can not take it. I am even getting up around 3am to start pumping and every two hours there after to try and get in enough pumps. Robert is coming up tomorrow and sometime this weekend is going to get to hold Blake if he wants. They said he can start kangarooing as well. He is so excited. The nurses love Blake. The charge nurse told us today that several nurses have requested to be scheduled with Blake because he is such a doll. He's our little man. They are going to try and start scheduling him with a block of certain nurses. That way, we do not have to go through too many 'one-time' nurses and have to explain his background of likes and dislikes to each one that comes through. We will have more of a stable communication line and they will know him like the back of their hands. That made me feel better since we are going to be here for so long. They have all been wonderful...each member of the staff and we appreciate all they are doing for him and the great care they are giving him.

5-27-08 & 5-28-08

There weren't too many changes yesterday. Today we spent all day up at the hospital. He was very unstable this morning and around lunch time. He got his shots this morning so he was probably still upset from that. The doctor called me and said that they lowered his feedings a little because he has too much electrolytes and is releasing too much fluids so they want to be able to cut back on the diaretics. So in order to they cut back his feedings. Part of his blood work looks better but there is one other part that shows inflimation so they are going to keep him on another two days worth of antibiotics and then they will probably take him off of it as long as everything looks good. They did a catscan on his brain tissue. It is the 30 day scan to check and see if any of his brain tissue was damaged. It turned out great. No problems and no damage. We are very happy about that. So we were up there from 1pm till 10 pm this evening. The NICU shuts down between certain times to allow for rounds and shift changes. So during one of those times we went down to the admin office to find out info on Blake's social security disability paperwork that we have been waiting on. The lady we had been working with called the austin office to find out why we hadn't heard from them yet. Apparently the Pasadena office that was supposed to send our paperwork here never did and it is missing. Along with that, they deleted our account information from the system completely. So all the work we had done to get the disability for Blake that he qualifies for is gone. Robert is going to have to go back down there and find out who messed up. He is of course not happy right now. All of our originals are gone and can not be found. When preemies are born under 2 lbs they qualify for disability. It is pretty much like getting Medicaid that will cover all the extra bills that our insurance does not cover. With out it we will have to pay A LOT of extra money. SO that is of course one more stress on me. I am trying to not worry about it and just work through it with my mom's help. After all that drama, we went back so I could kangaroo Blake. The nurse had just changed him and of course while I was holding him he pooped so I had to change it again. At 6 we went to a meeting for parents and we met with that Speech Therapist. She gave us really good information on the different developmental stages of preemies and how they are completely different than term babies. Once Blake finally reaches his 40 gestational weeks he will start over and be considered 0 weeks corrected. So he might be 4 months but will be 0 corrected weeks. That is so crazy. They also taught us about self soothing signals, stress signals, rooting (when he searches for something to suck on) and other things.
So when we came back to the bay where his incubator is, he was wide awake and she was getting him ready for me to bath him. When he heard my voice he turned his head all the way to the side to where he could "see" me. The nurse went to lower his incubator down some so that I could reach easier and still sit down if I needed while bathing him. When she did, the feeding machine that is connected to his feeding tube that goes into his intestines managed to vibrate itself right off the counter and hit the floor. When it did it jerked his feeding tube straight out of his intestines and out the mouth. He jumped cause it scared him but he didn't cry or anything. I can't imagine how that must have felt. A tube getting pulled out your intestines and throat really fast. I hope it did not hurt him. He did not seem to act like it did. There is nothing sharp it is just a small skinny tube so the nurse said if anything it would have given him a wierd feeling. I then got to bath him and he of course got upset when the water hit him but calmed down after that. After I bathed him, dried him off, and put on his new diaper he decided he was happy. When the nurse changed out his bedding my mom got to hold him up in her hands so she was happy too. The nurse had to put his tubing back down his throat. Every time she stuck her gloved fingers into his mouth he started sucking on them. We started laughing cause it was so cute. He would take his fingers and stick them in his mouth and try to suck on them. He is showing multiple signs of self soothing which is great. He is also now able to turn his head from one side of the mat all the way over when he is laying on his back. He is building up those muscles. He is going to be so strong and he is already showing what a fighter he is. His eyes are still dialated, but because he had them so wide open tonight we got to see the blue in his eyes. We will see if they change color or not since most all babies are born with blue eyes. He is looking cuter every day. Oh yea he has gained weight. He is up to 2 lbs 4 oz. We are almost at a pound gained. YEAH!

5-26-08

Ok I found out today I have been calling apneas the wrong name. A&B's are apneas and brachycardias and I have been calling the B's the apneas. When I talk about the apneas I should have been saying Brachacardia's or just A&B's so I aplogize for that. I have been mixed up when it comes to the technical terms. I am still learning. So from now on I will say the correct names. I figured this out when I asked his evening nurse how many apneas he has had and she said 10 since her shift started at 7. I totally freaked out. Then once I calmed down I asked her 10 heart rate drops and she said no. So that is when she explained the correct terms to me. We went to see him around lunch and they had lowered some of his rates on his c-pap machine and was also at 21 % room air when we walked in so I was totally excited. I held him and my brother and sister-in-law and my brother's best friend came to see Blake. They each came in one at a time while I was holding him. He woke up for a little bit and then fell back asleep. He high-satted the entire time. He gave me a nice poopy diaper to change once I got done holding him. We left and went back to the house so Rob could get ready to drive home before it got dark. I called to check on him a little while ago and he has been having a hard evening. They had to turn back up the levels on his c-pap machine. He was having a bunch of d-sat episodes. They think he is getting sick and developing a new infection so the doctor started him on antibiotics. I was debating going up and seeing him or going to bed and the nurse told me that I should rest because there is nothing I can do right now. I feel like I should be there because he high sats when I am there but then when I leave his sats drop, so I figured that would be bad for him after all. I want him to stay as stable as possible.

5-25-08

Luckily the nurse ended up having just enough milk left to feed Blake through the night and morning. We got back just in time to bring in milk for the next feeding. When we came in he was high satting and was on 22% oxygen. YEAH! That is what we want. He had been floating through out the day between 22-28 the nurse said. I held him and he did such a great job. Rob's mom Marie and my mom both saw him awake while I held him. He stayed in the 90's pretty much the entire time on his levels. He got upset when the nurse took him off my chest to put him up in his isolet. After we went back to the house and got some rest Robert and I came went back up to see Blake for his bath. I got to give it to him again. He only got upset when I would squeeze the warm water on his tummy. The whole time I was washing him, he just looked at me. Robert was standing behind me so when he poked his head around my shoulder and said something Blake turned his head a little bit and looked back to where Robert was standing. It was too cute. He was wide awake the whole bath and after. He was very calm and relaxed as I washed him. He just did not like me rinsing him off. Once I dried him and wrapped him up he was happy again. The nurse weighed him and he was 2 lbs 2 oz. Because of the diaretics he is on he has been losing some weight. But he is now 14 inches long, so he is growing. When the nurse does her assessment, I moved around to the other side of the isolet to hold his little hand. His face was turned toward her so when she finished I decided to move back around to the other side so he could see me. When I let go of him and went to grab the chair to move around he started to d-sat and then went into an apnea spell. I opened up the side and started to pat his back and he began to come up some. The nurse rushed in on the other side so I backed off and started talking to him. It took him a while to come out of it. His heart rate went up to 100 and then dropped again and then rose aned dropped several more times. He struggled to pull out of it, but once he finally did, he stayed stable. The RT came to do his suctioning after that. He had a lot of thick mucus that was giving him a hard time. He had an easier time breathing after she suctioned him. He did a great job on his back. That was the longest he has been on his back to date and tolerated it pretty well. We left once he was on his tummy and passed out sleeping. All that work wore him out. My bp on the other hand has stayed in the 90's today. At least it is not any higher than that. It is on its way down.

5-24-08

Blake has been having better days. He went all yesterday without any apneas and then at 10 pm he ended up having 4 within two hours. Oh well that is ok he did great during the day. The shower was great. I got to see all my family. The bad part was my blood pressure sky rocketed. I don't know why. I was sitting almost the entire time. I had to end up going to the bedroom and laying down because it wouldn't stop going up even with me sitting down resting and then laying on the couch. I then laid on the bed and it still was rising so we had to call my doctor's cell. He called us back and he was also out of town so he put in a call to the doctor on call at the hospital. That doctor called us and had me take extra Labadelol. It helped and my bp slowly dropped. By that night we had the bottom number down into the 90's which is way better than what it was. I have to go back and see my doctor on Tuesday. But I enjoyed seeing all my family. Blake is 4 weeks old today. Yeah! Oh the nurse called me and let me know that Blake was out of milk. Ok so I am in Kerville and have no way of getting milk to them. Because I am on diastolics for meds my milk is being drained from me. Since they upped his feedings I am having the hardest time keeping up with him. We tried to call several people that are staying at the Ronald McDonald house to see if they could take some in, but we never got ahold of them. I had to end up giving the nurses the ok to use donor milk from mom's who overproducec and donate it to the "milk bank". They filter the milk and then use it for moms like me. Talk about depressing that I can not keep up.

5-23-08

Robert came in today. I was so glad to see him. Poor thing has been sick this week and has been doing everything in his power to get better so he can see Blake. I went and saw Blake with my mom while Robert rested. He can not go up there until Sunday. He has to be on his antibiotics for at least 6 days. So when I went up there this afternoon I held him and he did great. He has had a pretty great day. No apneas today! YEAH and his oxygen has been between 26-31 percent. He stayed awake (in and out of consciouness) almost the entire time I held him. I would talk to him and kiss the top of his head and I could see his eyes moving. My mom said everytime I did that he tried to look up to see me. He was so cute, just staring as long as he could and then falling back asleep for a few minutes. He is such a joy. He high-satted the entire time I held him and got mad when they went to put him back in his bed. My mom was excited because she got to take him out of his isolate and put him back up. She can not decide on what she wants to be called. She keeps changing her mind. First it was Granna, then Nana and now Grammy. Oooy, what do I do with her. Lol. Since Robert can not see him till Sunday, we have decided to stay the night at my aunt's house tomorrow night after the shower and visit with family, then return Sunday to see Blake. Of course I am making them take me by the hospital before we leave in the morning to see him. I can not go a whole day with out seeing his little face. His hair is getting thicker every day. Robert made the comment when he saw the newest pictures that Blake is finally starting to look like a baby and not a little old man. lol Good thing Monday is a holiday. This way Rob will be able to see Blake Sunday and Monday since he can't till then.