Wednesday, November 9, 2011

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.

Thursday, October 27, 2011

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

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

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

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.

Sunday, August 28, 2011

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!

Tuesday, August 23, 2011

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!

Saturday, August 20, 2011

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!


Sunday, August 14, 2011

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!!!

Wednesday, August 3, 2011

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!



Monday, July 25, 2011

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!

Tuesday, July 19, 2011

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.

Friday, July 15, 2011

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



Sunday, July 10, 2011

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!

Sunday, July 3, 2011

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!


Tuesday, June 28, 2011

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.

Sunday, June 26, 2011

June 26, 2011 - Looking back over our journey

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.

Wednesday, June 22, 2011

June 22, 2011

Me and My Mom!
The beaituful card on the gifts from my shower
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!

 A great visit while my bed was being cleaned


Mom and I are holding hands!






So curious!


June 22, 2011

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!

Friday, June 17, 2011

June 17, 2011

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!

Wednesday, June 15, 2011

June 15, 2011

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!

Saturday, June 11, 2011

June 11, 2011

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.

Tuesday, June 7, 2011

June 7, 2011

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!

Sunday, June 5, 2011

June 5, 2011



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.
My Mom and I

Friday, June 3, 2011

June 3, 2011

videoToday 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.

Thursday, June 2, 2011

June 2, 2011

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.

Tuesday, May 31, 2011

May 31, 2011

I had an ultrasound of my head done today. Besides the cold goo that they put on my head... the nurse practitioner looked at it and said that any the spot of bleeding that I have had is small and is resolving itself. So there is nothing new with that and, of course, that is very good! Other than that my feedings have continued to go up. I had 11 ccs. today and will increase to 12 ccs. tonight. The doctor said that if I continue to tolerate the increased feedings, then they will probably take out the picc line around Thursday! They decreased my steroids today in order to start getting me off them and in a few days I will be done with them. Hopefully I am able to maintain the good levels that I am at after my steroids.

Monday, May 30, 2011

May 30, 2011

Happy Memorial Day everyone. I spent most of the holiday sleeping and I have had a very good day. My vent settings are down a little more and I have had some really good blood gases. I am still tolerating my feedings and am up to 9 ccs. The doctor wrote an order to increase the feedings 1 cc. every 12 hours. In addition I now weigh 880 grams! That is about 1 pound 15 1/2 ounces. I hope that everyone else has had as nice of a holiday as I have!!!

Sunday, May 29, 2011

May 29, 2011

Happy one month birthday to me! This weekend has been up and down, and according to the doctors and nurses... that is the life of a premee. There is some mucus built up in my lungs and that is causing me to have a few more problems breathing. The nurses turned up the ventilator last night in order to help break up the mucus. However, throughout today my breathing has sounded better and therefore my ventilator settings have come back down. In addition, my feedings are continuing to be increased. I am not getting 7 ccs. and at my 9 o'clock feedings I will be up to 8 ccs! Hopefully this will help me grow faster which the doctors say is the most important thing for me to become healthier. The bigger I am, the better I am going to be able to fight off infection and breath better!

Friday, May 27, 2011

May 27, 2011

Things in the NICU are pretty much the same. My ventilator settings are down a little bit more and I am now up to 5cc. of breast milk! The doctor told mom that it would take 10 cc. for me to be able to maintain hydration without the IV fluids... however, they will probably continue the IV fluids until about 15 cc. feedings. He also said that there is a chance that I could be up to the 10 cc. feedings by early next week. The more I eat the more I grow, and the more I grow the stronger I am. The doctor also told mom that if I get to the 15 cc. feedings, they may take out my picc line. This is a good thing because the more lines I have going into me, the more chance of infections. The doctor also had a talk with the nurse practioner about possibly moving me to the conventional ventilator. They decided to wait a little longer and let me become a little stronger before they do that. The doctors rotate every three weeks, and therefore a new doctor will be starting on Monday. Hopefully he will continue with the same ideas as my current doctor. Today I am four weeks old... I have fought against all the odds and am stronger now than I was. Mom and dad keep saying that I must have been brought here for a reason, and that I teach them each and every day about strength. I may be small, but I have more strength in me then any full grown adult! I hope everyone enjoys their long weekends.

Wednesday, May 25, 2011

May 25, 2011

The past two days have been going really well for me. The steroids seem to be working well and my oxygen and ventilator settings are continuing to go down. The nurses are saying that they feel I look a lot better and when mom and dad visit me I am more active. They finished the last dose of 2 mg. of the steroids, and today will start six doses of 1 mg. After that they will see how I am doing before making any more decisions. They increased my feedings today from 1 cc. of breast milk to 2 cc. The nurse also was curious as to how much I weigh and so she did a mid-week weighing... I am now 800 grams! (Up 20 grams from Saturday night)


I can see you!!!


Monday, May 23, 2011

May 23, 2011

So... last night the nurses started giving me the steroids. They are going to start with six doses (three days). Since then, my blood gases have come back really good and they have gone down six settings on the ventilator! That is very exciting. We are hoping that the steroids are the right answer and that it helps my lungs enough to move foward and maybe off this ventilator. Mom and dad visit as many times a day as they can and they are keeping their hopes up. So far so good, and its time for me to get some good sleep. Mom said she will try to get some new pictures sometime this week, but it is not really easy always to get pictures in the nicu.

Sunday, May 22, 2011

May 22, 2011

I had a pretty difficult night last night, and spent a lot of today trying to remain calm and stable. The not so good news first, my ventilator settings had to be brought up quite a bit last night and the doctor has decided that it is time to start steroids for my chronic lung disease. I will be starting that tonight. Now, there is some better news... I had a bath last night and did really enjoy that. Also, I now weigh 780 grams (1 pound 12 ounces), so I am continuing to gain weight. Mom and dad are asking that the positive thoughts for me continue, as I need them now as I fight through this rough time. Thanks!

Saturday, May 21, 2011

May 21, 2011

Today was pretty much the same in my life. I am stable and no changes have been made to my medications or ventilator. As much as mom and dad want to hear that I am progressing, they are happy to know that I am stable too. The nurses said they were going to give me a bath tonight! Mom and dad also got my birth certificate and social security card in the mail, so I am an offical US citizen! I am tolerating the feeding well still so I am  hoping to be able to give news on good progress real soon.

Friday, May 20, 2011

May 20, 2011

I am sorry that I was unable to post yesterday. Mom and dad have been working hard to get my house in shape, and the internet had to be unplugged for a day as new carpet was installed into the den and grandma's room. Now, the internet is back and my house is starting to look much better. Now, as for me... I am doing about the same. I started a new antibiotic for what the doctor thinks may be a lung infection (like pnemonia). It will take a few days to see if that is what I really have, and if the antibiotics are working. Other than that, I am still eating and the doctor says that it seems I am tolerating the feeds well. That is super important because I need to grow so that I can fight off infections easier! When mom and dad have visited me today and yesterday, I have been spending a lot of time sleeping. Happy three week birthday to me! Each week is a little closer to coming home to my mom and dad!

Wednesday, May 18, 2011

May 18, 2011


This morning, when mom and dad came to visit me, the nurse told them that I had a little bit of a difficult time last night. My CO2 levels were going up again, therefore, the ventilator settings had to be increased. They started another blood transfusion and were they were going to wait and see how I was doing after that. When mom returned in the afternoon, my ventilator settings had gone down one and I the nurse reported that my CO2 levels were back to normal. Hopefully, all I needed was some more blood and mom and dad are hoping that I am back on an upward spiral. Mom went to visit her students at school today. She told them all about me, one of them asked her to come back. She told them that she couldn't be back yet because she needs to be with me. He stated that he would build me a bed that I could stay in and that his mom is a nurse and both her and I could come be with mom all day at school. Mom was glad to know that her students miss her as she misses them! It was also very nice of them to say that I could come to school too1 Think I am ready for fifth grade yet?
19 days old! I am getting bigger and stronger each and every day.