November 9, 2011

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.

Alexander touched many lives in his six months here. He taught us more lessons than I ever knew were possible. We would never trade a moment of time that he blessed our lives with, and we will miss him terribly until we meet again. We thank you for all of the love, prayers, and support throughout this long journey.

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!

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.

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!

Tummy time

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.

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!!!

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.

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!!!  

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.

August 28, 2011

Tomorrow I will be four months old! Over the past week I have lived through an earthquake and a huricane. Neither of which cause any problems for me... and thankfully, my parents. However, I have had a rough week breathing. I had to be put back on the ventilator to help me breath. They are not sure why I keep slipping back and needing so much more support, but the CO2 in my blood is too high. They have tried many different medications, yet none of them seem to be working. Yesterday, they looked at my blood and found that the chloride is too low, and they are saying this could cause my CO2 to be too high. They adjusted the sodium chloride supplement that I receive and increased it quite a bit. It will take two or three days to get all of that leveled out in my body to see if that is the problem, and then hopefully the CO2 will come down. In the meantime, I am sleeping well and trying to grow new lung tissues!
After the hurricane, many trees were knocked down. A huge tree fell across the road right in front of my parents house... but mom says that she went outside to check on my tree (the baby maple tree planted for me as a gift from Betty and Tom) and that baby tree looks great. It must be a sign that things are going to be ok!

August 23, 2011

As the summer comes to an end... I have to say thank you to some amazing people. The Praxair Cancer Center ladies are more amazing than I could imagine! Last week, they held a "grandma" shower for my grandma! I am sure she was very suprised, but she has told me that there are beautiful gifts and thoughts waiting for me in Connecticut. Thank you so much for thinking of me so often and helping me to make it through the first months of my life!!! You are amazing ladies whom I can not wait to have the honor of meeting!

This is the amazing diaper cake that is waiting for me from my grandma shower!

August 20, 2011

Yesterday was my sixteen week birthday. As my grandpa says... I am now actually two weeks old (based on my due date). Again, the NICU has proven to be a roller coaster for me and I am currently back on the CPAP for my breathing. I was on the nasal canuale for two weeks... which is longer than the first time. Hopefully this will be a short break and I can get back to the canuale soon. The postive thing is that in this time, I have grown quite a bit. I am now 4 pounds 8.4 ounces! It is hard to think that sixteen weeks ago, I was only 1 pound 6 ounces... fighting daily for my life. I don't feel that I am fighting for my life any longer... now it is a fight to get home to my family. So many people have stepped up and supported my parents and me throughout the past few months. My mom goes back to work in a week, and I know that is going to be really hard. Just think... next summer I will be home, visiting all my family and friends... hopefully taking a trip to CT and meeting all those who have shown such amazing love to me! I look foward to it!

August 14, 2011

I know that it has been a while since this has been updated... but things have been very busy for me!  I am still in my big boy crib and am doing fine regualting my own temperature. I am also eating two bottles a day now, and doing a good job with them. In addition, I am four pounds... and today they are trying me on the low flow nasal canuale. If I am going to come home on oxygen, this is the type of canuale that it would be... so far I am doing really well on it! I hope to be home with mom and dad soon. I will try and keep everyone posted a little better... and will post some new pictures this week!!!

August 3, 2011

Greetings from the NICU. Things have been going very well for me. In the past week I have been able to come back off the vent... AND... was put back on the nasal canuale on Monday. I am much happier to have the small prongs instead of the large ones from the CPAP machine. Since I have been feeling pretty good, I have had many visitors to the NICU. Mom and dad hold me many times a day, and even visitors are able to hold me too. Today, they moved me into the big crib bed. No more isolate. As long as I can maintain my body temperature I will be able to stay in the crib and be much more social. Overall... things are going well!

July 25, 2011

Good Morning Friends! Things have been going better this week in the NICU. The doctors did a bunch of tests after I had to go back on the ventilator to see if they could figure out why I had slipped back so far. All of the tests came back negative... so there isn't an answer as to what happened. They started a second round of steroids and since then the ventilator settings have come way down. Hopefully I will be back on the CPAP in the next few days. I have been feeling pretty good and have my fiesty attitude back. Still hoping to come home soon, but as the nurses keep letting me know... the road of a preemie is not straight and who knows what is in store for me!

July 19, 2011

I have had a rough couple of days. On Saturday my oxygen requirements started to go way up and therefore the doctors decided to put me back on the ventilator. This means that I now have the tube back in my mouth. Since then, there have not been many changes and they are not sure why I have gone back this far. They are doing as many tests as possible to figure it out, and hopefully we can come up with a solution to get me moving foward again. In the meantime... I need all the positive thoughts and love I can get... it is currently a hard part of my journey.

July 15, 2011 - 11 Weeks Old

Today I am 11 weeks old. This has been a busy week with a few new things going on in my life! They have been working with me to get me on the nasal canuale. I tried it for three days, but got tired... so now I have it for a few hours twice a day. This will allow me time to get used to the canuale slowly. During this time, they are also going to try and teach me to bottle feed! I had my very first bottle this afternoon. It was scary, confusing, and hard work... but I did a good job and was able to get 7 ccs. We will keep on practicing so I am ready when it is time to come home. As always, I am still sleeping and growing and have now gained a total of two pounds since my birth. That gives me a weight of 3 pounds 6 ounces!

May 3, 2011 - About 610 Grams

How I have grown... July 15, 2011 - 1530 Grams

July 10, 2011

This has been kind of a rought week. One of ups and downs... I got an infection this week and needed my CPAP settings to be turned up. The good thing is that the doctors were able to figure out what the infection was quickly and the antibiotics are already kicking in. My CPAP settings are back to where they were before the infection... so I am ready to move foward. I now weight 1390 grams! Still need to meet that four pound goal before they consider sending me home. That, and the whole breathing thing! As for my eyes... the injection into my eyeballs has worked! The specialist came to check them out and said that the ROP is gone. I have to continue with followups for a while, but we are very glad that I did not have to go through laser surgery. Mom and dad still visit all the time, and are holding me daily. I am looking foward to the day when I can come home!

July 3, 2011

Happy Fourth of July

 Good Evening to everyone and I hope that you are all having a good holiday weekend. Things in the nicu are slowly progressing and I am doing well! I am not 35 centimeters long and weigh 1240 grams (2 pounds 11.8 ounces). As I grow, it is becoming clear that I am getting stronger. I had my eyes checked again of Friday, and was diagnosed with stage three ROP (Retinopothy of prematurity). This required some immediate attention, as if it is not treated, there is a chance I could go blind. So... the specialist came to give a second opinion on Saturday and agreed that something needed to be done. Mom and dad agreed to allow the doctor to put a shot in my eyes in hopes that this will stop the ROP. The specialist will return on Wednesday to follow up, so hopefully there will be some good news to report. Otherwise, I am able to be held everyday now, assuming that I am having a good day. I am continuing to be dressed daily and am maintaining my body temperature well. All in all, I am doing well! Still sleeping and growing as I need to be. Enjoy your holiday!



June 28, 2011



Dressed for the first time!

 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.