Thursday, September 15, 2011

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

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

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.

Sunday, September 4, 2011

September 4, 2011

Thank you for all the prayers and positive vibes that have been coming my way. The past five days have been rough, but, I am still fighting. One of the lung cultures came back positive, so hopefully the round of antibiotics will help. We have slowly been able to come down on the oxygen, but it has been a slow course. Today, my tummy isn't feeling too good. The x-ray shows that there appears to be some air in it, and I am having a hard time getting comfortable. Overall, I am doing a little better... but still have a long journey ahead of me. On Thursday, my sister was able to come into the NICU and meet me for the first time. It was nice to know that everyone is pulling for me. Keep the prayers and love coming... thank you so much!!!  

Thursday, September 1, 2011

September 1, 2011

Things here are not going well. After the weekend, the CO2 in Alexander's blood went way up. The doctors were unable to get it back down on the conventional vent... so they placed him back on the oscillator and started another round of steroids. Unfortunatly, Alexander has not responded the way we all hoped. He is currently on very high vent settings and 100% oxygen. The doctor says there is a small chance it could be an infection and has started antibiotics in case... but he believes that his lungs may be starting to fail. Time is the only thing that will tell. Alexander needs all the help he can get to pull through right now.