It is with great sorrow that I sit here and write this entry. Yesterday, Alexander began a new journey. Last week, the doctors informed us that the continued stress on his lungs has put increased pressure on his heart. Simply put, his heart had been compensating for what his lungs has been unable to do. Over the past six months, his heart has been working hard, but now the pressures on his heart had become too high. On Friday, after a long talk with the doctors, we were told that these pressures could not continue for more than a few weeks. We (his father and I) spent all weekend with him. We spend many hours holding him and smiling with him. He had a wonderful few days. Yesterday, his heart rate began to drop. He was telling us that it was his time to go. He didn't suffer. He was surrounded by many who loved him including his mom, dad, sister, grandma, grandpa, and nurses. After some time in our arms, he let us know that it was ok... and he left to begin his new journey. It all happened very quickly, and knowing that he didn't suffer is the most important thing to us all.
Thursday, October 27, 2011
It has been a long couple of weeks, but the hope, love, and support that everyone has sent me is hopefully helping. The doctors have put me back on steriods, and unfortunatly, this will be a longterm journey. Nobody knows the longterm effects of this, and that scares mom and dad a lot. Hopefully, I can get down to a low enough dose, and then grow enough to be able to breath without the steroids. It took three days on a high steroid dose before some help was seen. My oxygen is now down around 40%, and hopefully Monday I will be put back onto the conventional ventilator. I have gained some weight, and now weight 7 and a half pounds! Continue to send your love... I will be needing it as my journey is still far from over. Lots of love to everyone!
Monday, October 17, 2011
As the course of the NICU goes... I am again having a difficult time. Last week I was retaining a lot of CO2... so the doctors put me back on the oscillator. Since then, my CO2 has come down, but today my oxygen requirements have gone way up. The doctors decided to start steroids again, however, there is no way of knowing if this is going to work. Tomorrow, they are going to do a heart ECHO. If the heart muscles have been working too hard, then the heart will be enlarged and there is not anything that can be done to correct that. Mom and dad are very scared... as the doctors are not sounding very hopeful. This is a very hard time for us all... I will try and keep this updated, however, as things progress... it may become more difficult. Thank you for the continued love and prayers.
Sunday, October 2, 2011
Happy Fall to everyone. As the weather starts to get colder, I hope that everyone stays warm. I am perfectly warm here in the NICU. I am continuing to grow and slowly showing progress with my breathing. I am still on a very small does of steroids, and will be getting off those in about a week. There is always the possiblity of having a set back after the steroids, but hopefully they have had me ween down slow enough that there will not be much of a problem. I am currently on the vent, but with no backup rate. That means that I am doing all of the breathing myself, with pressure support. I now weight 5 pounds 15 ounces, and am as cute as can be :) I had my second trach change yesterday, and all went well. The next change will be in two weeks, and mom and dad are supposed to do that one. They are also starting to do more of the care with me. They are starting to suction the trach and dad will be helping me with a big bath tomorrow night. They are even going to bring my tub from home so that we can have a special bathtime!!! I am up more throughout the day, and when I am awake, I am offered my bottle now. Sometimes I enjoy it... but if I am sleepy, I would rather not take it. Mom and dad also brought me a dvd player and some movies that I can watch throughout the day. This gives me more to look at... I love the colors in Nemo, The Incredibles, Elmo, and Big Bird! So... there is still no timeline as to when I may be coming home, but things are moving along, slow and steady.
|Love from my daddy!|
|I am exhausted|
|I like watching movies!|
Thursday, September 15, 2011
Today I had my first Trach change done by the surgeon. It was really quick and he said that things are healing really well. Mom and dad were both there and able to watch so that they can do trach changes when I come home. The surgeon also said that I do not have any restrictions on me so I can be moved around a lot more and begin bottle feeding again! Things are started to look up... I had a lot of fun today with my nurse and have included some current pictures so everyone can see how much I am growing.
|Sleeping is much easier without the tubes in my face.|
|Army Alexander!!! Everyone thinks I look like grandpa|
|Time to start eating with a bottle again.|
|I like lollipops!!!|
|Long day... time to sleep.|
Wednesday, September 14, 2011
Good Evening everyone. The past week I have spent many hours recovering from my tracheostomy surgery. The surgery went well. Overall it took about 50 minutes and my mom and dad waited for me the whole time outside the NICU. Once it was over they were able to come see me, however, I was pretty sleepy on the medicines. Every since I have not done much but lay still in the bed. The doctor does not want me moving a lot as the trach heals. I am starting to get a little restless though, and hopefully I will be allowed more freedom soon. Tomorrow the surgeon will come back to do the first trach change with my mom and dad there. I still have to get the vent settings down more before I can come home so we are still looking at several weeks at least. Mom is hoping that I can be home for the holiday season. Mom and dad will also have to learn how to take care of me and all my trach equipment. They will spend at least 24 hours with me in the hospital before I am discharged. So... my journey continues... my face is clear at least! I will post pictures next time! Since I am not moving a lot, there are not many new pictures yet... but I know that there will be soon. Thank you for helping me to pull through... though I have a long way still to travel... your love and prayers have helped my family and I so much over the past few weeks!!!
Thursday, September 8, 2011
The past four and a half months have been the most difficult time of our lives. Not many people experience having a baby the way that we have. Since Alexander was born so early, I never really experienced the kicking while he was growing inside me. I have not been able to experience breastfeeding, and still have not slept in the same building as my beautiful baby boy. I always imagined that I would have my baby, and a few days later we would be home.. snuggling in bed and watching him grow. I listen to others talk about how they don't get enough sleep because they are up with their babies. I wish I could say I have had that experience. I don't get enough sleep because I am always worried about my baby. I can't get up in the night and look over to see him sleeping, or even crying. In the past four months my baby has had to fight death twice. However, my baby is a warrior. He is the strongest human being I have ever met, and he has turned death away. Last week, the doctor came into the NICU and told my husband and I that he didn't expect to see Alexander that morning. This is the same doctor who was there the weekend Alexander was born and told us that he didn't think he was going to make it then either. We called on the prayers, love, and support of everyone we know to help us through this amazing difficult time. My family dropped everything in their lives to travel the many hours and be with us and Alexander. To let him know that he is loved and needed in this world. He heard everyones prayers, and he fought his toughest battle... and has been stablized. After facing the possibility of him dying not once, but twice, we have come to a difficult decision. Tomorrow Alexander will get a tracheostomy. This is not what we wanted for our little boy. It is not what any parent wants, however, everyone says it is the best thing for him. The trach will be in place for as long as needed... but we are looking at about two years. The good thing is that he will be able to come home on a vent. The doctor told us today that we still will not hear him cry for a while though, not until he grows more and becomes less dependent on the trach tube for breathing. He is now five and a half pounds, and it breaks my heart to watch him grow in a hospital. It becomes harder each day to leave him and know that I will not come home to him at night. 133 days in the NICU and still counting... and it is exhausting. So we now start our next journey... one that hopefully will bring our baby home so that he can grow surrounded by love of family, and not the sounds of hospital machines, the frequent blood checks and foot pricks. Please continue to pray for and send positive thoughts to Alexander. His war is far from over and I am sure that all the thoughts is what allowed him to defeat death last week. Thank you... from the bottom of my heart for all of it. A special thank you to my family for reminding me the importance of family... and the Kristin (once a mother) for being there for me when I needed someone to understand.
|Alexander Merlin. Sunday September 4, 2011.|
|Alexander two weeks ago... during a tube change with nothing on his face.|
|A visit from family and love from his Aunt and Uncle.|