My CPAP settings went down some more today and there is some new good news also! I am now 1110 grams (2 pounds 7.5 ounces) and I started wearing clothes for the first time today! My mom had to go home and wash some of my little onsies so that I could have them in the nicu with me. Tomorrow I am also going to be moved from the isolation room into the main room, right by the nurses station. Since I am older and more stable, I have been much more curious. I am spending more time awake and looking around, so... the nurses think it is time for me to interact with everyone else! Such exciting things are happening.
Alexander is doing very well. He is breathing a little bit better, and growing. He is now 1045 grams and will be weighed every couple days. He also is getting baths more often since he is stable enough to be removed from his isolate more.
Bathtime in the nicu
As I sit here and write that yet again everything in the nicu is going well, I realize that I have been thinking a lot about the past two months. Just over two months ago I went to the doctor for what I thought would be a routine checkup. We even brought my step-daughter so that she could see the ultrasound for the first time. That day is one that I will not soon forget. As I sat in the doctors office with my husband and step-daughter, the doctor began to ask me questions that I just knew couldn't mean anything good. He asked about my job, and how a typical day went. I answered and then watched him leave the room for a while. As my family and I sat there, my husband told me that I would not be going to work on Monday. He was right... but little did I know what our lives were going to become.
I was only 24 weeks a 4 days pregnant. I knew that nothing good could come out of problems this early with my pregnancy. We didn't have a name for our son, his soon to be room was full of stuff as the house is being rennovated. We didn't have a crib, a car seat, or even clothes. We were just not ready. When the doctor came back, he told me that he was going to admit me to the hospital, and that he wanted to get some more tests. The next few hours consisted of blood work and many people in and out, the whole time I didn't really understand what was going on. I knew I just wanted to go home. The next day, the doctor told us that I wouldn't be going home until I delivered my baby. I calmly told them that wouldn't be until August, and their response was that I was wrong.
For eight days I stayed in the hospital... trying my hardest to believe that everything was going to be ok. The nicu doctor came in and told us that if my baby was born then, there would be about a 60% survival rate. He said some more things, but all of that is still a blur in my mind. Finally, the doctors decided that my body and my babies would not survive if they didn't deliver. I had two hours notice that I would be having a c-section. I remember the few calls I made in those two hours. The doctors came in and out, more tests were done, and many nurses came to see me. All I remember was fear... not for myself, but for my son. I felt as if I had let him down. I had read about preemies on the internet while I was in the hospital, and was very aware of the difficult journey he was about to face.
At 2:30 my son was born, weighing 1 pound 6 ounces. Now, I had never really understood the life of a preemie. I had never seen a preemie right after birth, except for on TV. You hear those stories and feel bad for those people. You think how hard it must be for them. Until now, I didn't understand. My husband went to see our son after 2 hours. He was stable in the nicu, and was able to see people. I was unable to see him until the next day. It isn't normal not to hold your child when they are born and although all I wanted to do was stay in my hospital bed, I had to go and see him.
When I first saw him, I couldn't believe how small he was. Babies aren't that little... I couldn't believe that a human being could be that small. I was afraid to touch him, and cried when I saw the number of cords and tubes that were in his tiny body. The nurses told us a lot of information about what they were doing, but to be very honest... it is now all a blur.
Since that day we have survivied a lot. Two days after he was born, the nurses woke me up and told me that he wasn't doing well. That I must go to the nicu. I don't know what happened that day, but the doctor says that when my husband and I arrived, all of his vital stats came back up. Since then, we have had our ups and downs. Through infections, ventilators, feedings, and medications... he has come out on top. He is going to survive... and he is going to do great things. I believe he is meant to be here for some reason yet to be seen. No one starts life this way and doesn't make a difference in this world. Don't feel bad for us.. I don't. I was wrong to feel bad for anyone who goes through an experience like this. This has made me a better person. I am stronger and humbled by what both positive thoughts and modern medicine can do.
Alexander grows healthier and stronger each day. It has been 60 days since he was born, and he still wasn't supposed to be in the world for another 41 days... but he is here. And he is wonderful, and he is perfect. I know that our journey is far from over... but our family, with the support and help from our friends can face this journey and everything that it brings us. Alexander taught me that.
It is time for some new pictures of me. Some of my mom's co-workers had a nice shower for me today and I may just be the best dressed baby... when I am big enough to fit into all my new clothes! Thank you so much for the great gifts. My new stroller is going to be a great ride! When mom came to visit me, they were about to change my bed, so mom was able to hold me while they did that. The nurses are saying that I am much more curious now and looking around more (That's cause I am older and bigger!) No other changes, my CPAP settings are still good and I am breathing well!!! Thanks again for the beautiful gifts!
Today is moms last day of work, so she will be able to update and visit me more often again! Things are still the same for me in the nicu. I now weigh 958 grams (2 pounds 1.8 ounces). The doctors are continuing to say that the most important thing for me is to grow! My blood work is all ok, my liver has appeared to be fixing itself, and I am still tolerating my feedings well. I will have some pictures to post soon, so you all can see how big I am getting!
After coming off the steroids, I struggled a little with the breathing, however, I am doing very well now. The doctors and nurses all tell mom and dad that I look great and things are going great. My oxygen levels have been coming down and I am not needing as much extra pressure from the CPAP to help me breathe. I had about 30 minutes of physical therapy yesterday and that wore me out... so I slept most of the day afterwards. They did increase my feeds to 18 ccs. every three hours. The more I eat, the more I grow!
Good Morning Everyone! I know that I am not updating as much lately, however, my mom went back to work this week so it is a little more difficult. In addition, things here are moving pretty slowly. There isn't much news on a daily basis because I have gotten to a point that the doctors say I just need to grow! I am still on the CPAP and doing ok on it. Other than that, I was weighed last night and... I am offically two pounds!!! After losing that weight about a week and half ago, mom was really sad... but I am back up and actually a weigh a little more than I did before the weight loss. Today they are going to change out my bed and dad is going to help by holding me while they do it. What a happy day!
Good Morning All! Things down in the nicu are moving along. The liver doctor came and looked at my test results, ultrasound, and records and then decided that he did not know what caused my enzymes to increase. In addition, they have repeated some of the tests at the end of the week, and they results are looking better. My enzymes are coming down on their own. So... they have ruled out all the really bad things (ex... hepatitis), and since I am healing myself, they believe that it will be ok. I am starting to have some more problems breathing now though. It has been a week since I started on the CPAP, and I am just getting tired. Because I am so small, it is difficult for me to keep working this hard. I may have to be moved back to the ventilator, however, they will not put me on the one I was one before, they will start me on the conventional one. This is still a step foward for me overall from where I was and that will also allow me time to rest some and grow more.
Not much has changed over the past two days. I am continuing to breath on my own and doing well. They are thinking of stopping the steroids tomorrow, but that could also cause a rebound in my breathing. Keeping my fingers crossed that I am strong enough now to maintain on the CPAP. I also started physical therapy today for my arms and legs. She will come see me three times a week and work with mom and dad so that my muscle tone can develop. They are looking now at my liver because there was an increase in the liver enzymes. No news as to what the test results are for that, but hopefully it isn't anything really big. I am continuing to sleep and grow daily... thank you all for keeping me in your thoughts... it is what helps to keep me going!
After trying the CPAP machine for the weekend things are still going well. I only have to have my blood gas checked every 12 hours instead of every eight hours. That means they prick my foot one less time to take blood each day. I am still breathing on my own and doing well. Mom and dad came to visit me many times this weekend, and mom was able to hold me for the first time. It was so nice to actually be out of my bed and in my mom's arms.
Today is my five week birthday and it was a very busy day. My blood gases have been coming back very good and therefore they lowered my vent settings over night. This morning the doctor decided that it was time to try and take the tube out of my mouth and try to place me on the CPAP machine. This machine has the prongs that go into my nose, but it requires me to breath on my own. They put me on the machine around 11 this morning and did another blood gas at 1 to see if I was doing ok. The results were good and therefore I am going to continue on the CPAP! There is always the chance that I may need to go back to a ventilator as time goes own, but we (the doctors and I) are going to try and do everything we can to keep me on the CPAP. My feedings are up to 16 ccs. and they will not go any higher until I get bigger. I also got to see pictures of my leaf that was donated to the NICU at Danbury. I was so very honored to see this and thank the Praxair Girls for thinking of me so much. I am proud to have a part of supporting other babies who are going through the difficult times that I am. So, it has been a great day and mom and dad are really excited about my progress.
My new CPAP. No tube in my throat!
My leaf - Thank you Praxair Girls... I am honored.
The first time you can see my whole face!
My first pacifier... I have to start to learn how to suck and breath.
Good Afternoon! Today and yesterday have been pretty good days for me. My belly is a little bloated, however, they did an x-ray and it appears to only be air in my belly. The doctor said the just gas and bowel movements will help that go away. They have maxed out with my feedings now at 15 ccs. and at lunch time today the nurse removed my picc line! She said that I was really good about it and there were no problems in getting it out. My vent settings are down a little more today and I am resting very comfortably. We are hoping that this weekend will continue on as well as these past few days have been.