Good morning Mommy and Daddy! I weigh 1040 grams (2 lb 4.7 oz) today, up 50 grams (1.8 oz) from yesterday's weight. I gained an average of 15.7 grams (0.6 oz) per day over the past 7 days. I'm starting to do better in terms of my weight, but I think I'll check with my nurses and doctors and see if they can help me gain some more.
I received feedings by pump yesterday at a rate of 6-6.5 ml/hr and I received a total amount of 154 ml (5.2 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Keep up the good work Mom -- I really appreciate that great breastmilk! Since yesterday morning, I pooped twice and the last time was around 4 PM.
As of 6 AM, I was on a mechanical ventilator with 31% oxygen. I had 1 apnea/bradycardia spell yesterday, and I've had none so far today. My nurses and doctors say that these spells are so common in premies that they'd be surprised if I wasn't having the spells.
Bye-bye Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
I'll love you always,
John Michael
Saturday, March 31, 2012
Friday, March 30, 2012
Day 44
Happy Friday Mommy and Daddy! I weigh 990 grams (2 lb 2.9 oz) today, down 10 grams (0.4 oz) from yesterday's weight. I gained an average of 25.7 grams (0.9 oz) per day over the past 7 days. Aren't you proud of the way I'm gaining weight!
I received feedings by pump yesterday at a rate of 5.5-6 ml/hr and I received a total amount of 142 ml (4.8 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 38% oxygen.
See you later Mommy and Daddy. Your visits make my day!
Lots of love,
John Michael
I received feedings by pump yesterday at a rate of 5.5-6 ml/hr and I received a total amount of 142 ml (4.8 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 38% oxygen.
See you later Mommy and Daddy. Your visits make my day!
Lots of love,
John Michael
Thursday, March 29, 2012
Day 43
Good morning Mommy and Daddy! I weigh 1000 grams (2 lb 3.3 oz) today, up 10 grams (0.4 oz) from yesterday's weight. I gained an average of 20.0 grams (0.7 oz) per day over the past 7 days. Not a bad weight gain, but maybe I can do a little better.
I received feedings by pump yesterday at a rate of 5-5.5 ml/hr and I received a total amount of 132 ml (4.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped 3 times and the last time was around 8 PM.
As of 5 AM, I was on a mechanical ventilator with 54% oxygen.
Au revoir Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
With all my love,
John Michael
I received feedings by pump yesterday at a rate of 5-5.5 ml/hr and I received a total amount of 132 ml (4.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped 3 times and the last time was around 8 PM.
As of 5 AM, I was on a mechanical ventilator with 54% oxygen.
Au revoir Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
With all my love,
John Michael
Wednesday, March 28, 2012
Superman!
It's a bird, it's a plane, it's . . . Me, John Michael.
If I put both of my arms out I can fly. That's the advantage of being so little. It doesn't take as much effort as it would if I was bigger. Mommy thinks I look just like Superman. See daddy you should have named me Clark, just like Superman. You know that's what my girlfriend called me before she left me. My kryptonite is my lungs though. I can't fly very far hooked up to this darn ventilator. These tubes only let me get so far. Hopefully after my next dose of steroids I can go wireless.
I take that back. My kryptonite is this darn frog. Every time I get up and ready to fly they put this dang frog on top of me!
If I put both of my arms out I can fly. That's the advantage of being so little. It doesn't take as much effort as it would if I was bigger. Mommy thinks I look just like Superman. See daddy you should have named me Clark, just like Superman. You know that's what my girlfriend called me before she left me. My kryptonite is my lungs though. I can't fly very far hooked up to this darn ventilator. These tubes only let me get so far. Hopefully after my next dose of steroids I can go wireless.
I take that back. My kryptonite is this darn frog. Every time I get up and ready to fly they put this dang frog on top of me!
Day 42
Good morning Mommy and Daddy! I weigh 990 grams (2 lb 2.9 oz) today, up 10 grams (0.4 oz) from yesterday's weight. I gained an average of 34.3 grams (1.2 oz) per day over the past 7 days. You should be impressed by the way I'm gaining. This is just grand!
I received feedings by pump yesterday at a rate of 4.5-5 ml/hr and I received a total amount of 117 ml (4.0 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped once around 4 PM.
As of 6 AM, I was on a mechanical ventilator with 55% oxygen.
Ta-ta Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
With all my heart,
John Michael
I received feedings by pump yesterday at a rate of 4.5-5 ml/hr and I received a total amount of 117 ml (4.0 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped once around 4 PM.
As of 6 AM, I was on a mechanical ventilator with 55% oxygen.
Ta-ta Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
With all my heart,
John Michael
Tuesday, March 27, 2012
Happy Birthday Papa
Happy Birthday to you. Happy Birthday to you. Happy Birthday Dear Papa Happy Birthday to you. That's what I'd sing if I could. But I can't even cry yet so don't push it.
Once again I'd buy you a card but until the girl scouts start selling cards from crib to crib this post will have to do.
They let girl scouts in here? Hurry Em put on one of those green uniforms and pretend you're a girl scout.
Dang, the nurse just burst my bubble only the big ones in the other room get the girl scouts. I can't even get you cookies Papa. :(
Well you'd all make me broke anyway between all of these birthdays and anniversaries. Sorry for the ADD. It must be from the steroids.
Love,
John Michael
Once again I'd buy you a card but until the girl scouts start selling cards from crib to crib this post will have to do.
They let girl scouts in here? Hurry Em put on one of those green uniforms and pretend you're a girl scout.
Dang, the nurse just burst my bubble only the big ones in the other room get the girl scouts. I can't even get you cookies Papa. :(
Well you'd all make me broke anyway between all of these birthdays and anniversaries. Sorry for the ADD. It must be from the steroids.
Love,
John Michael
Day 41
Good morning Mommy and Daddy! I weigh 980 grams (2 lb 2.6 oz) today, up 50 grams (1.8 oz) from yesterday's weight. I gained an average of 31.4 grams (1.1 oz) per day over the past 7 days. I'm gaining so well that the nurses want me to teach some of the other babies how to gain weight.
I received feedings by pump yesterday at a rate of 1.2-4.5 ml/hr and I received a total amount of 55 ml (1.8 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped twice and the last time was around 8 PM.
My last bilirubin was 0.6 on 3/26 at 5 AM and that's OK in my book.
As of 4 AM, I was on a mechanical ventilator with 47% oxygen.
Au revoir Mommy and Daddy. I think I need some pictures around me, so please bring me some.
Hugs, kisses, and more hugs and kisses,
John Michael
I received feedings by pump yesterday at a rate of 1.2-4.5 ml/hr and I received a total amount of 55 ml (1.8 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped twice and the last time was around 8 PM.
My last bilirubin was 0.6 on 3/26 at 5 AM and that's OK in my book.
As of 4 AM, I was on a mechanical ventilator with 47% oxygen.
Au revoir Mommy and Daddy. I think I need some pictures around me, so please bring me some.
Hugs, kisses, and more hugs and kisses,
John Michael
Monday, March 26, 2012
I am a VIP, got blood?
Mommy says I'm a VIP (Vampire In Progress). I just had another blood transfusion today. And with that my blood supply is almost gone. Apparently blood expires just like mommy's milk. I don't want a lot of blood, I just need it from one person right now. But hold on to your blood because the doctors say I'll need more in the future. If you are type O+ and have never had CMV, can you spare some for me? If you would like to share some with sweet little me ;) please let me know. That way I only take one person's blood and I don't waste everyone else's. Btw daddy won't let me have an email address yet so you can email him or mommy.
Michael.tully.72@gensler.com
Rrclark1@aol.com
To all of those who have donated already thank you very much. The doctor says you helped make me grow stronger. Don't worry I won't forget all that you have done for me. When my professional baseball carrier takes off I'll save you all an autographed ball.
Peace out,
JM
Michael.tully.72@gensler.com
Rrclark1@aol.com
To all of those who have donated already thank you very much. The doctor says you helped make me grow stronger. Don't worry I won't forget all that you have done for me. When my professional baseball carrier takes off I'll save you all an autographed ball.
Peace out,
JM
Day 40
Good morning Mommy and Daddy! I weigh 930 grams (2 lb 0.8 oz) today, up 10 grams (0.4 oz) from yesterday's weight. I gained an average of 32.9 grams (1.2 oz) per day over the past 7 days. I'm gaining so well that I'm going to be busting out of here pretty soon!
I received feedings by pump yesterday at a rate of 4-4.5 ml/hr and I received a total amount of 103 ml (3.5 oz) for the day. I took all my milk by tube.Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped 3 times and the last time was around 4 AM.
As of 5 AM, I was on a mechanical ventilator with 38% oxygen.
See you soon Mommy and Daddy. The nurses can see how happy I am when you visit.
A big smooch,
John Michael
I received feedings by pump yesterday at a rate of 4-4.5 ml/hr and I received a total amount of 103 ml (3.5 oz) for the day. I took all my milk by tube.Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped 3 times and the last time was around 4 AM.
As of 5 AM, I was on a mechanical ventilator with 38% oxygen.
See you soon Mommy and Daddy. The nurses can see how happy I am when you visit.
A big smooch,
John Michael
Happy anniversary
Happy anniversary mommy and daddy. Can you believe my mommy and daddy were married only a year ago? Daddy, it's a good thing that you didn't have me on your honeymoon. In a few years when I'm big and strong they would think that you married mommy just because I was on the way. ;)
Once again can't get you a card in this joint. Daddy, take mommy someplace nice. And mommy, don't worry I've got plenty of milk so just remember to dump. They say I'm too small for wine.
Once again can't get you a card in this joint. Daddy, take mommy someplace nice. And mommy, don't worry I've got plenty of milk so just remember to dump. They say I'm too small for wine.
Sunday, March 25, 2012
The frog
The frog has crawled on top of me. Someone please help me I can not move with this frog on me. I like to kick and move my hands and this frog has me in a pinned position. I told him that I do not want to wrestle. SOS!!!! 911!!! UNCLE!!!! I give up!!!! What do you say to get it off of me?
Day 39
Good morning Mommy and Daddy! I weigh 920 grams (2 lb 0.5 oz) today, up 30 grams (1.1 oz) from yesterday's weight. I gained an average of 32.9 grams (1.2 oz) per day over the past 7 days. I'm gaining so well that I'm going to be busting out of here pretty soon!
I received feedings by pump yesterday at a rate of 3.5-4 ml/hr and I received a total amount of 94 ml for the day. A fluid oz is about 30 ml so this is about 3.2 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I'm so glad you're giving me breastmilk -- it's the best food for me! Since yesterday morning, I pooped 5 times and the last time was around 4 AM.
As of 7 AM, I was on a mechanical ventilator with 38% oxygen.
Sayanara Mommy and Daddy. I love the way you smell when you visit.
I'll love you always,
John Michael
I received feedings by pump yesterday at a rate of 3.5-4 ml/hr and I received a total amount of 94 ml for the day. A fluid oz is about 30 ml so this is about 3.2 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I'm so glad you're giving me breastmilk -- it's the best food for me! Since yesterday morning, I pooped 5 times and the last time was around 4 AM.
As of 7 AM, I was on a mechanical ventilator with 38% oxygen.
Sayanara Mommy and Daddy. I love the way you smell when you visit.
I'll love you always,
John Michael
Saturday, March 24, 2012
My big sister.
I received more pictures from my big sister. The picture says "dear John, I am so glad you are getting better! I read your blog every day. I hope I will get to see you soon! Love, Emily aka your big sis." They weighed me today and I am 2 pounds. Thank you big sis for all your love. 
I am beefing up.
The nurse from Tuesday came in this morning and had to do a double take. She thought I was a monster. I'm approaching 2 lbs you know. Grandma will be happy to hear. She's always asking mommy about my weight. You know those Italians you didn't have enough to eat until you can't move. You should all be proud I'm up to 4cc per hour now. It seems like eating is the one thing I have mastered. Once again, there is no denying my daddy. He's not Italian, but he knows how to eat like one. Can you bring me in some cannoli, the good ones with the chocolate on top?
Day 38
Good morning Mommy and Daddy! I weigh 890 grams (1 lb 15.4 oz) today, up 10 grams (0.4 oz) from yesterday's weight. I gained an average of 30.0 grams (1.1 oz) per day over the past 7 days. Look at me! I'm growing right in front of your eyes!
I received feedings by pump yesterday at a rate of 3-3.5 ml/hr and I received a total amount of 82 ml for the day. A fluid oz is about 30 ml so this is about 2.8 oz. I took all my milk by tube. Keep the breastmilk coming -- all those wonderful nutrients are so good for me. Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 5 AM, I was on a mechanical ventilator with 42% oxygen.
Farewell Mommy and Daddy. Please tell the family that I love them very much and can't wait until they visit me.
Hugs, kisses, and more hugs and kisses,
John Michael
I received feedings by pump yesterday at a rate of 3-3.5 ml/hr and I received a total amount of 82 ml for the day. A fluid oz is about 30 ml so this is about 2.8 oz. I took all my milk by tube. Keep the breastmilk coming -- all those wonderful nutrients are so good for me. Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 5 AM, I was on a mechanical ventilator with 42% oxygen.
Farewell Mommy and Daddy. Please tell the family that I love them very much and can't wait until they visit me.
Hugs, kisses, and more hugs and kisses,
John Michael
Friday, March 23, 2012
Day 37
Happy Friday Mommy and Daddy! I weigh 880 grams (1 lb 15.0 oz) today, up 60 grams (2.1 oz) from yesterday's weight. I gained an average of 18.6 grams (0.7 oz) per day over the past 7 days. This is an good weight gain, but I might be able to do even better in the days ahead.
I received feedings by pump yesterday at a rate of 2.5-3 ml/hr and I received a total amount of 71 ml (2.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped once around 4 PM.
My last bilirubin was 0.5 on 3/23 at 4 AM and my nurse seemed very pleased with this result.
As of 5 AM, I was on a mechanical ventilator with 48% oxygen.
Adios Mommy and Daddy. I think I need some pictures around me, so please bring me some.
Love you so much,
John Michael
I received feedings by pump yesterday at a rate of 2.5-3 ml/hr and I received a total amount of 71 ml (2.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped once around 4 PM.
My last bilirubin was 0.5 on 3/23 at 4 AM and my nurse seemed very pleased with this result.
As of 5 AM, I was on a mechanical ventilator with 48% oxygen.
Adios Mommy and Daddy. I think I need some pictures around me, so please bring me some.
Love you so much,
John Michael
Thursday, March 22, 2012
Happy Birthday Poppy!
Dear Poppy,
Mommy told me it was your birthday today. If they had a guitar my size I'd play you the Beatles birthday song. Unfortunately, right now I don't think I could fit my arms around a regular one. I would have gotten you a card but they don't have Hallmark's in this joint. I told Mommy to go buy you something nice with my $40.
Happy Birthday!
Love,
Me
Mommy told me it was your birthday today. If they had a guitar my size I'd play you the Beatles birthday song. Unfortunately, right now I don't think I could fit my arms around a regular one. I would have gotten you a card but they don't have Hallmark's in this joint. I told Mommy to go buy you something nice with my $40.
Happy Birthday!
Love,
Me
JETS
I am flashing my Jets colors today as my favorite player is now on my favorite team. My Nana made me my Jets blanket and she is working on making me a Tim Tebow mini jersey once she finds out his number. 
Day 36
Good morning Mommy and Daddy! I weigh 820 grams (1 lb 12.9 oz) today, down 30 grams (1.1 oz) from yesterday's weight. I gained an average of 22.9 grams (0.8 oz) per day over the past 7 days. I'm getting bigger and bigger day by day. Pretty soon I'll need some new clothes. Be sure to get me some good looking stuff!
I received feedings by pump yesterday at a rate of 2-2.5 ml/hr and I received a total amount of 58 ml for the day. A fluid oz is about 30 ml so this is about 1.9 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thanks for the breastmilk Mommy! I love it! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 45% oxygen.
See you soon Mommy and Daddy. Please tell me things about our family the next time you visit.
Lots of love,
John Michael
I received feedings by pump yesterday at a rate of 2-2.5 ml/hr and I received a total amount of 58 ml for the day. A fluid oz is about 30 ml so this is about 1.9 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thanks for the breastmilk Mommy! I love it! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 45% oxygen.
See you soon Mommy and Daddy. Please tell me things about our family the next time you visit.
Lots of love,
John Michael
Wednesday, March 21, 2012
The Godfather
When mommy came to see me this morning she found envelopes of cash in the draw under my crib. I had some explaining to do. She doesn't understand how hard it is in here when the new monsters role in. Let's face it I've been in this bay the longest and this is my territory. The other preemie babies well, let's just say I made 'em an offer they couldn't refuse. The cash, it's like a life insurance policy. They give it to their nurses who bring it to me. And me, I offer them protection. Let's just say I let those monsters know who's bay this is. And if they don't listen they'll be swimming with the fishes.
Day 35
Good morning Mommy and Daddy! I weigh 850 grams (1 lb 14.0 oz) today, up 110 grams (3.9 oz) from yesterday's weight. I gained an average of 11.4 grams (0.4 oz) per day over the past 7 days. This is an good weight gain, but I might be able to do even better in the days ahead.
I received feedings by pump yesterday at a rate of 2 ml/hr and I received a total amount of 30 ml (1.0 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped 3 times and the last time was around midnight.
As of 5 AM, I was on a mechanical ventilator with 50% oxygen.
So long Mommy and Daddy. Hope to see you soon!
Until I see you.
Love,
John Michael
I received feedings by pump yesterday at a rate of 2 ml/hr and I received a total amount of 30 ml (1.0 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I really appreciate all the breastmilk you are giving me. As the saying goes "Breast is Best"!! Since yesterday morning, I pooped 3 times and the last time was around midnight.
As of 5 AM, I was on a mechanical ventilator with 50% oxygen.
So long Mommy and Daddy. Hope to see you soon!
Until I see you.
Love,
John Michael
Tuesday, March 20, 2012
Baseball star
So apparently I'm not the only baseball star around here. There was a Yogi Berra spotting. Uncle John saw him when he was with Mommy and Poppy. He said he was a big fan. Uncle John, did you have enough nerve to tell him you named your dog after him. Mommy was telling me how Yogi was the best Yankee catcher ever. I wonder if Daddy would mind if I played for the other New York teem in the Bronx that wins. I would still be able to stay home and he could still go to every one of my games.
Mom, send him by my pad the next time you see him. I could use a few pointers. Ask him to tell me about the glory days before the Roids hit baseball.
Mom, send him by my pad the next time you see him. I could use a few pointers. Ask him to tell me about the glory days before the Roids hit baseball.
Day 34
Good morning Mommy and Daddy! I weigh 740 grams (1 lb 10.1 oz) today, up 30 grams (1.1 oz) from yesterday's weight. I lost an average of 7.1 grams (0.3 oz) per day over the past 7 days. I'm going to gain some weight soon, and my doctors and nurses will let you know the plans to help me put on some meat.
I received feedings by pump yesterday at a rate of 1.5-2 ml/hr and I received a total amount of 47 ml (1.6 oz) for the day. I took all my milk by tube. Thanks for the breastmilk, Mommy. You're the only one who can help me in such a special way. I can feel myself growing!! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
I slept so great last night knowing that I got to spend time in your arms Mommy! Thank you for holding me close and tight!
As of 5 AM, I was on a mechanical ventilator with 37% oxygen.
Adios Mommy and Daddy. Your visits are the best!
Love,
John Michael
I received feedings by pump yesterday at a rate of 1.5-2 ml/hr and I received a total amount of 47 ml (1.6 oz) for the day. I took all my milk by tube. Thanks for the breastmilk, Mommy. You're the only one who can help me in such a special way. I can feel myself growing!! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
I slept so great last night knowing that I got to spend time in your arms Mommy! Thank you for holding me close and tight!
As of 5 AM, I was on a mechanical ventilator with 37% oxygen.
Adios Mommy and Daddy. Your visits are the best!
Love,
John Michael
Monday, March 19, 2012
Kangaroo hold
Mommy took me out of my condo to hold me. I like that very much. Daddy read me a story while mommy held me. 
Day 33
Good morning Mommy and Daddy! I weigh 710 grams (1 lb 9.0 oz) today, up 20 grams (0.7 oz) from yesterday's weight. I lost an average of 7.1 grams (0.3 oz) per day over the past 7 days. I'm sure I'll get this gaining-weight thing squared away soon.
I received feedings by pump yesterday at a rate of 1.5 ml/hr and I received a total amount of 30 ml (1.0 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 7 AM, I was on a mechanical ventilator with 30% oxygen.
Adios Mommy and Daddy. Make sure you save my letters to you so that when I am big and strong we will be able to remember my important milestones.
I'll love you always,
John Michael
I received feedings by pump yesterday at a rate of 1.5 ml/hr and I received a total amount of 30 ml (1.0 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 7 AM, I was on a mechanical ventilator with 30% oxygen.
Adios Mommy and Daddy. Make sure you save my letters to you so that when I am big and strong we will be able to remember my important milestones.
I'll love you always,
John Michael
Sunday, March 18, 2012
Day 32
Good morning Mommy and Daddy! I weigh 690 grams (1 lb 8.3 oz) today, down 20 grams (0.7 oz) from yesterday's weight. I gained an average of 2.9 grams (0.1 oz) per day over the past 7 days. When I sleep, I dream of Oreo cookies...... :) See if you can convince my nurse to give me a few!
Since yesterday morning, I pooped 3 times and the last time was around 8 PM.
As of 3 AM, I was on a mechanical ventilator with 37% oxygen.
Goodbye Mommy and Daddy. My nurses and doctors are taking great care of me, but it's your voice I know and love, so please come soon!
Hugs, kisses, and more hugs and kisses,
John Michael
PS: Just because I'm sending you this e-mail doesn't mean I don't want you to call.
Since yesterday morning, I pooped 3 times and the last time was around 8 PM.
As of 3 AM, I was on a mechanical ventilator with 37% oxygen.
Goodbye Mommy and Daddy. My nurses and doctors are taking great care of me, but it's your voice I know and love, so please come soon!
Hugs, kisses, and more hugs and kisses,
John Michael
PS: Just because I'm sending you this e-mail doesn't mean I don't want you to call.
Welcome to Holland
As you all may know I have a special education background. This entire experience reminds me of a poem a professor had given me in college. After you read it you will never forget it.
Here it is.
Regina
Welcome to Holland
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Here it is.
Regina
Welcome to Holland
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Saturday, March 17, 2012
Definitely a Tully
I was diagnosed with a hernia today. They called in the surgeon to take a look he was very nice till he pushed on my intestines. The surgeon pushed my hernia back in and said I do not need surgery yet. Daddy said having a hernia is just being a boy in the Tully family. Daddy has had two, papa has had three, uncle Brian two and cousin Christopher one.
Happy Saint Patrick's Day
I have my green on do you? They are feeding me green milk today, mommy what have you been eating. I think mommy has been eating too much green vegetables. 
Day 31
Good morning Mommy and Daddy! I weigh 710 grams (1 lb 9.0 oz) today, up 40 grams (1.4 oz) from yesterday's weight. I lost an average of 4.3 grams (0.2 oz) per day over the past 7 days. I'm sure I'll get this gaining-weight thing squared away soon.
I received feedings by pump yesterday at a rate of 2-2.5 ml/hr and I received a total amount of 54 ml for the day. A fluid oz is about 30 ml so this is about 1.8 oz. I took all my milk by tube. My last feeding was at 6 AM. I can't figure out when my next feeding will be, so check with my nurse. Thanks for the milk Mommy, it really helps me grow! Since yesterday morning, I pooped once around 8 PM.
As of 5 AM, I was on a mechanical ventilator with 35% oxygen.
Cheerio Mommy and Daddy. Make sure you save my letters to you so that when I am big and strong we will be able to remember my important milestones.
XOXO,
John Michael
I received feedings by pump yesterday at a rate of 2-2.5 ml/hr and I received a total amount of 54 ml for the day. A fluid oz is about 30 ml so this is about 1.8 oz. I took all my milk by tube. My last feeding was at 6 AM. I can't figure out when my next feeding will be, so check with my nurse. Thanks for the milk Mommy, it really helps me grow! Since yesterday morning, I pooped once around 8 PM.
As of 5 AM, I was on a mechanical ventilator with 35% oxygen.
Cheerio Mommy and Daddy. Make sure you save my letters to you so that when I am big and strong we will be able to remember my important milestones.
XOXO,
John Michael
Friday, March 16, 2012
Day 30
Happy Friday Mommy and Daddy! I weigh 670 grams (1 lb 7.6 oz) today, down 20 grams (0.7 oz) from yesterday's weight. I lost an average of 4.3 grams (0.2 oz) per day over the past 7 days. I'm sure I'll get this gaining-weight thing squared away soon.
I'm 1 month old today! Can you believe I'm another month older?
I received feedings by pump yesterday at a rate of 1.5-2 ml/hr. In addition, I received a total amount of 42 ml (1.4 oz) for the day. I took all my milk by tube. Thanks for the breastmilk, Mommy. You're the only one who can help me in such a special way. I can feel myself growing!! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 27% oxygen.
Arrivederci Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
Until I see you. Love,
I'm 1 month old today! Can you believe I'm another month older?
I received feedings by pump yesterday at a rate of 1.5-2 ml/hr. In addition, I received a total amount of 42 ml (1.4 oz) for the day. I took all my milk by tube. Thanks for the breastmilk, Mommy. You're the only one who can help me in such a special way. I can feel myself growing!! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 27% oxygen.
Arrivederci Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
Until I see you. Love,
Thursday, March 15, 2012
Desk space
When my daddy comes to visit all I here is how he is running out of space in his office. He does not think I am listening but I am.
Hey daddy how about these desks in your office. Tomorrow I will work up a test fit of your space but for now take a look at the desk.
Hey daddy how about these desks in your office. Tomorrow I will work up a test fit of your space but for now take a look at the desk.
To my son
Dear John Michael,
Today you are one month old. Many people never thought you'd make it this far. Some even doubted that you'd make it through birth. And now here you are today, still fighting.
It's hard to believe that I went to the hospital 32 days ago, not knowing that you'd come so soon. The doctors really scared us that night when they said you'd have to come then. I didn't sleep at all that night. I just kept praying to get better. When the morning came I was relieved, I had "baby Mikey" for one more day. I tried to hang on as long as could, but after a few days my body just wouldn't let me anymore. You were born on February 16, 2012 @ 23 weeks and 6 days, my little miracle.
I'm so glad that you got my spunk and Daddy's inability to sit still. I'm so proud of you for fighting so hard and for teaching me so much in this short time. Thanks to you I've learned not to take anything for granted. Each day truly is a gift. For, I am excited about changing your dirty diaper and giving you a "bath" just so I can touch you. I go to the hospital every day just so you are not alone. I talk to you and blow you kisses because I know that you can feel my presence even if they say you don't know I'm there. I long for the next time I get to hold you, to hear the joyful sound of your first cry, and the sleepless nights when you finally come home. All of this I would have never appreciated. Thank you for teaching me these lessons in life.
You may be so small but your impact has been so profound. You are leaving a large footprint on the hearts of those who get to know you. When you get older you'll understand how many people love you and pray for you everyday. It is these prayers that help you get stronger and continue your fight.
Mommy loves you baby Johnny and all of the joy you bring. You are my little angel. I thank God for everyday we have with you and would not change a single thing.
Love,
Mommy
Today you are one month old. Many people never thought you'd make it this far. Some even doubted that you'd make it through birth. And now here you are today, still fighting.
It's hard to believe that I went to the hospital 32 days ago, not knowing that you'd come so soon. The doctors really scared us that night when they said you'd have to come then. I didn't sleep at all that night. I just kept praying to get better. When the morning came I was relieved, I had "baby Mikey" for one more day. I tried to hang on as long as could, but after a few days my body just wouldn't let me anymore. You were born on February 16, 2012 @ 23 weeks and 6 days, my little miracle.
I'm so glad that you got my spunk and Daddy's inability to sit still. I'm so proud of you for fighting so hard and for teaching me so much in this short time. Thanks to you I've learned not to take anything for granted. Each day truly is a gift. For, I am excited about changing your dirty diaper and giving you a "bath" just so I can touch you. I go to the hospital every day just so you are not alone. I talk to you and blow you kisses because I know that you can feel my presence even if they say you don't know I'm there. I long for the next time I get to hold you, to hear the joyful sound of your first cry, and the sleepless nights when you finally come home. All of this I would have never appreciated. Thank you for teaching me these lessons in life.
You may be so small but your impact has been so profound. You are leaving a large footprint on the hearts of those who get to know you. When you get older you'll understand how many people love you and pray for you everyday. It is these prayers that help you get stronger and continue your fight.
Mommy loves you baby Johnny and all of the joy you bring. You are my little angel. I thank God for everyday we have with you and would not change a single thing.
Love,
Mommy
Day 29
Good morning Mommy and Daddy! I weigh 690 grams (1 lb 8.3 oz) today, unchanged from yesterday's weight. I gained an average of 7.1 grams (0.3 oz) per day over the past 7 days. I'm moving in the right direction weight-wise, and maybe I'll surpise you tomorrow.
I received feedings by pump yesterday at a rate of 1-1.5 ml/hr and I received a total amount of 34 ml for the day. A fluid oz is about 30 ml so this is about 1.1 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thanks for the breastmilk, Mommy. You're the only one who can help me in such a special way. I can feel myself growing!! Since yesterday morning, I pooped 4 times and the last time was around midnight.
As of 4 AM, I was on a mechanical ventilator with 36% oxygen.
Arrivederci Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
A million kisses,
John Michael
I received feedings by pump yesterday at a rate of 1-1.5 ml/hr and I received a total amount of 34 ml for the day. A fluid oz is about 30 ml so this is about 1.1 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thanks for the breastmilk, Mommy. You're the only one who can help me in such a special way. I can feel myself growing!! Since yesterday morning, I pooped 4 times and the last time was around midnight.
As of 4 AM, I was on a mechanical ventilator with 36% oxygen.
Arrivederci Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
A million kisses,
John Michael
Wednesday, March 14, 2012
Day 28
Good morning Mommy and Daddy! I weigh 690 grams (1 lb 8.3 oz) today, up 30 grams (1.1 oz) from yesterday's weight. I gained an average of 8.6 grams (0.3 oz) per day over the past 7 days. When I sleep, I dream of Oreo cookies...... :) See if you can convince my nurse to give me a few!
I received feedings by pump yesterday at a rate of 0.5-1 ml/hr and I received a total amount of 21 ml for the day. A fluid oz is about 30 ml so this is about 0.7 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's hard to pump Mom, but please keep working on this -- it really helps me. Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 38% oxygen.
See you soon Mommy and Daddy. Your visits are the best!
Love, love,
John Michael
I received feedings by pump yesterday at a rate of 0.5-1 ml/hr and I received a total amount of 21 ml for the day. A fluid oz is about 30 ml so this is about 0.7 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's hard to pump Mom, but please keep working on this -- it really helps me. Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 4 AM, I was on a mechanical ventilator with 38% oxygen.
See you soon Mommy and Daddy. Your visits are the best!
Love, love,
John Michael
Tuesday, March 13, 2012
Day 27
Good morning Mommy and Daddy! I weigh 660 grams (1 lb 7.3 oz) today, down 100 grams (3.5 oz) from yesterday's weight. I gained an average of 20.0 grams (0.7 oz) per day over the past 7 days. I'm starting to do better in terms of my weight, but I think I'll check with my nurses and doctors and see if they can help me gain some more.
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 12 ml (0.4 oz) for the day. I took all my milk by tube. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped once around 8 AM.
As of 6 AM, I was on a mechanical ventilator with 48% oxygen.
Miss you Mommy and Daddy. Your visits are the best!
Love, love,
John Michael
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 12 ml (0.4 oz) for the day. I took all my milk by tube. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped once around 8 AM.
As of 6 AM, I was on a mechanical ventilator with 48% oxygen.
Miss you Mommy and Daddy. Your visits are the best!
Love, love,
John Michael
Monday, March 12, 2012
Roid rage
Mommy came to visit and I was huge, my muscles were bulging and I was ripping my tubes out. I'm ready to take on one of those monsters, you know one of those full term 7 pound babies. The baby next to me said he'd be my fight manager. The nurses are putting their money on me. They say I'm a natural born fighter. I can see the headlines now "John Michael, king of the little people beats the monster!" I'm a real hero in this place now.
Oh wait, that was just a dream.
Mommy came to visit with Nana and Papa. They did start me on steroids again but there's no effect yet. Actually I'm really tired. Just slept most of the time. Waiting for my next transfusion again. Third one in 3 days. Mommy says I'm not going to get teeth, I'll get fangs. Getting tired again. Hopefully these new meds will work.
Mommy & Daddy, are you going to give me a bath tonight?
Oh wait, that was just a dream.
Mommy came to visit with Nana and Papa. They did start me on steroids again but there's no effect yet. Actually I'm really tired. Just slept most of the time. Waiting for my next transfusion again. Third one in 3 days. Mommy says I'm not going to get teeth, I'll get fangs. Getting tired again. Hopefully these new meds will work.
Mommy & Daddy, are you going to give me a bath tonight?
Day 26
Good morning Mommy and Daddy! I weigh 760 grams (1 lb 10.8 oz) today, up 30 grams (1.1 oz) from yesterday's weight. I gained an average of 15.7 grams (0.6 oz) per day over the past 7 days. This is an good weight gain, but I might be able to do even better in the days ahead.
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 6 ml (0.2 oz) for the day. I took all my milk by tube. Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped once around 4 PM.
As of 6 AM, I was on a mechanical ventilator with 50% oxygen.
Goodbye Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
Hugs and kisses,
John Michael
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 6 ml (0.2 oz) for the day. I took all my milk by tube. Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped once around 4 PM.
As of 6 AM, I was on a mechanical ventilator with 50% oxygen.
Goodbye Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
Hugs and kisses,
John Michael
Sunday, March 11, 2012
Got my frog today
Thank you mommy for getting me a frog. I am so much more comfortable on it. They do not have these in my hospital. Mommy called different hospitals around to find one. Mommy found one at Beth Israel in Newark. The nurse there knew of another nurse that lived by Mommy and Daddy that nurse was going out with friends from Verona and dropped off the frog last night. For those of you who do not know what I am talking about please cut and paste the link below. http://www.healthcare.philips.com/us_en/products/mother_and_child_care/post_natal_care/nicu/sleep_and_positioning/freddy/index.wpd
Missed church
I was not able to make it to mass today. My daddy went and said that they had an Irish mass today with bag pipes and guys in kilts. My dad emailed me a photo and I posted it below. He said it was a great mass I am sad I missed it. 
Day 25
Good morning Mommy and Daddy! I weigh 730 grams (1 lb 9.7 oz) today, up 40 grams (1.4 oz) from yesterday's weight. I gained an average of 15.7 grams (0.6 oz) per day over the past 7 days. I'm moving in the right direction, weight-wise. I'm thinking that a hamburger would really hit the spot -- hold the onions.
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 12 ml (0.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped once around 4 PM.
As of 5 AM, I was on a mechanical ventilator with 39% oxygen.
Arrivederci Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
I'll love you always,
John Michael
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 12 ml (0.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Thank you so much for giving me breastmilk, Mommy. It really helps me! Since yesterday morning, I pooped once around 4 PM.
As of 5 AM, I was on a mechanical ventilator with 39% oxygen.
Arrivederci Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
I'll love you always,
John Michael
Saturday, March 10, 2012
Another bad day
So Wednesday's nurse is back again. I figured I needed to cause a little mischief to get her attention. So I decided to hold in my pee again. It worked, she came and gave me Dopamine again. She said I'm starting to give her a complex. I just like her and want her to be by me. The only way I can think it get her attention is to get sick. She is a nurse, that's what she's here for right? So Mommy & Daddy came and Mommy said she wouldn't leave until I peed. Well I peed, my when are you gonna leave you're crampin' my style. The nurse will let you know if I need another transfusion.
Pee pee dance, again
It sounds like they're starting the pee pee dance again. My nurse told Mommy I didn't pee much last night. They started me on some pee pee medicine again. So pray for pee and talk to my mommy. I think she's nuts, I never heard someone gets so excited over changing a dirty diaper.
Day 24
Good morning Mommy and Daddy! I weigh 690 grams (1 lb 8.3 oz) today, down 10 grams (0.4 oz) from yesterday's weight. I gained an average of 10.0 grams (0.4 oz) per day over the past 7 days. I've decided to try to gain a little faster, so see if you can sneak me a milkshake and a slice of pepperoni pizza (ha! ha!).
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 11 ml for the day. A fluid oz is about 30 ml so this is about 0.4 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I haven't pooped since yesterday morning, and the last time I went was around noon on 3/8. It's no big deal if I don't poop everyday, so don't worry about this.
As of 4 AM, I was on a mechanical ventilator with 48% oxygen.
Tootle-oo Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
Lots of love,
John Michael
I received feedings by pump yesterday at a rate of 0.5 ml/hr and I received a total amount of 11 ml for the day. A fluid oz is about 30 ml so this is about 0.4 oz. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I haven't pooped since yesterday morning, and the last time I went was around noon on 3/8. It's no big deal if I don't poop everyday, so don't worry about this.
As of 4 AM, I was on a mechanical ventilator with 48% oxygen.
Tootle-oo Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
Lots of love,
John Michael
Friday, March 9, 2012
Day 23
Happy Friday Mommy and Daddy! I am 27 weeks today counting when I started in mommy's belly.
I weigh 700 grams (1 lb 8.7 oz) today, down 20 grams (0.7 oz) from yesterday's weight. I gained an average of 10.0 grams (0.4 oz) per day over the past 7 days. I'm moving in the right direction weight-wise, and maybe I'll surprise you tomorrow.
I wasn't fed milk yesterday, but my doctor said that I can start eating again today! Since yesterday morning, I pooped twice and the last time was around noon.
As of 6 AM, I was on a mechanical ventilator with 46% oxygen.
See you soon Mommy and Daddy. I think I need some pictures around me, so please bring me some.
Hugs and kisses,
John Michael
I weigh 700 grams (1 lb 8.7 oz) today, down 20 grams (0.7 oz) from yesterday's weight. I gained an average of 10.0 grams (0.4 oz) per day over the past 7 days. I'm moving in the right direction weight-wise, and maybe I'll surprise you tomorrow.
I wasn't fed milk yesterday, but my doctor said that I can start eating again today! Since yesterday morning, I pooped twice and the last time was around noon.
As of 6 AM, I was on a mechanical ventilator with 46% oxygen.
See you soon Mommy and Daddy. I think I need some pictures around me, so please bring me some.
Hugs and kisses,
John Michael
Thursday, March 8, 2012
Breakfast order
They tell me that I will be eating again tomorrow morning. Mommy if you could eat two eggs over easy with corned beef hash so I have that flavor in the milk. The doctor said that they will continue to watch my kidneys over the weekend but she said they are getting better. Next week the doctor will come up with a strategy for my lungs but don't worry kids my age always have issues with their lungs. 
Day 22
Good morning Mommy and Daddy! I weigh 720 grams (1 lb 9.4 oz) today, up 80 grams (2.8 oz) from yesterday's weight. I gained an average of 5.7 grams (0.2 oz) per day over the past 7 days. When I sleep, I dream of Oreo cookies...... :) See if you can convince my nurse to give me a few!
I wasn't fed milk yesterday. Since yesterday morning, I pooped twice and the last time was around midnight.
As of 5 AM, I was on a mechanical ventilator with 55% oxygen.
Ciao Mommy and Daddy. Bring a camera with you the next time you visit so that you can show me off to all our friends and family.
Hugs,
John Michael
I wasn't fed milk yesterday. Since yesterday morning, I pooped twice and the last time was around midnight.
As of 5 AM, I was on a mechanical ventilator with 55% oxygen.
Ciao Mommy and Daddy. Bring a camera with you the next time you visit so that you can show me off to all our friends and family.
Hugs,
John Michael
I peed!
After a long day of worrying everyone I finally peed. Mommy called early this morning. I peed 7cc at midnight and 21cc at 4 am. Boy do I feel better. Holding it in for 24 hours really makes ya gotta go.
Thank you for all of your prayers. They really help me especially when this tiny body doesn't fight as hard as I want.
Oh yeah and thanks to all of those who donated blood for me. They told me that my blood transfusion yesterday was from you. I'm really turning into a vampire with all of this blood. Mommy someone told me about this Twilight book. Maybe you can read it to me.
Thank you for all of your prayers. They really help me especially when this tiny body doesn't fight as hard as I want.
Oh yeah and thanks to all of those who donated blood for me. They told me that my blood transfusion yesterday was from you. I'm really turning into a vampire with all of this blood. Mommy someone told me about this Twilight book. Maybe you can read it to me.
Wednesday, March 7, 2012
Pee
The nurse has told me that I do not get any more food or medicine till I pee. The nurse also told me that I kicked her ass today. She said that after an easy day yesterday she was not prepared for all the work and worry I put her thru.
I am scared
The doctors told my daddy that there is a problem with my kidneys, they are running tests but I'm critical. I need your prayers now more than ever.
Day 21
Good morning Mommy and Daddy! I weigh 640 grams (1 lb 6.6 oz) today, up 40 grams (1.4 oz) from yesterday's weight. I gained an average of 5.7 grams (0.2 oz) per day over the past 7 days. I've decided to try to gain a little faster, so see if you can sneak me a milkshake and a slice of pepperoni pizza (ha! ha!).
I received feedings by pump yesterday at a rate of 2.6 ml/hr and I received a total amount of 62 ml (2.1 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 5 AM, I was on a mechanical ventilator with 45% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Ciao Mommy and Daddy. Hope to see you soon!
A big hug and kiss,
John Michael
I received feedings by pump yesterday at a rate of 2.6 ml/hr and I received a total amount of 62 ml (2.1 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. I know it's a lot of work Mom, but keep on pumping! I'm worth every drop! Since yesterday morning, I pooped 4 times and the last time was around 4 AM.
As of 5 AM, I was on a mechanical ventilator with 45% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Ciao Mommy and Daddy. Hope to see you soon!
A big hug and kiss,
John Michael
Tuesday, March 6, 2012
Me and my Poppy
Mommy and Poppy came to visit me this morning. Mommy showed Poppy how to hold my hand. Sh, don't tell Grandma, she'll get jealous. Mommy tried but I just like big fingers like Daddy's and Poppy's. Mommy I like it when you hold me better. 
Day 20
Good morning Mommy and Daddy! I weigh 600 grams (1 lb 5.2 oz) today, down 20 grams (0.7 oz) from yesterday's weight. I gained an average of 5.7 grams (0.2 oz) per day over the past 7 days. I've decided to try to gain a little faster, so see if you can sneak me a milkshake and a slice of pepperoni pizza (ha! ha!).
I received feedings by pump yesterday at a rate of 2.1-2.6 ml/hr and I received a total amount of 61 ml (2.1 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Mommy, you should be proud of yourself for pumping breastmilk for me -- it's just great! Since yesterday morning, I pooped 3 times and the last time was around 8 PM.
As of 6 AM, I was on a mechanical ventilator with 35% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Miss you Mommy and Daddy. Come visit me soon.
Love,
John Michael
I received feedings by pump yesterday at a rate of 2.1-2.6 ml/hr and I received a total amount of 61 ml (2.1 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I can't figure out when my next feeding will be, so check with my nurse. Mommy, you should be proud of yourself for pumping breastmilk for me -- it's just great! Since yesterday morning, I pooped 3 times and the last time was around 8 PM.
As of 6 AM, I was on a mechanical ventilator with 35% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Miss you Mommy and Daddy. Come visit me soon.
Love,
John Michael
Monday, March 5, 2012
3/5
Let me start by telling you all that I am still fighting as best as my little body allows me to. The doctors are a little disappointed with the effects of the steroids. My lungs just aren't getting strong enough. Now they think I may have an infection. So they stopped the steroids and started antibiotics. Let's hope that works. Hopefully they can start up the 'roids again later in the week. When they do can someone please bring me some weights? I want to get in shape for the ladies this summer.
Daddy I miss you. Get better so you can come and visit me.
Daddy I miss you. Get better so you can come and visit me.
Day 19
Good morning Mommy and Daddy! I weigh 620 grams (1 lb 5.9 oz) today, unchanged from yesterday's weight. I gained an average of 7.1 grams (0.3 oz) per day over the past 7 days. When I sleep, I dream of Oreo cookies...... :) See if you can convince my nurse to give me a few!
I received feedings by pump yesterday at a rate of 1.7-2.1 ml/hr and I received a total amount of 49 ml (1.7 oz) for the day. I took all my milk by tube. Keep up the good work Mom -- I really appreciate that great breastmilk! Since yesterday morning, I pooped 3 times and the last time was around midnight.
As of 5 AM, I was on a mechanical ventilator with 45% oxygen. I had 1 apnea/bradycardia spell yesterday, and I've had none so far today. Don't worry about these. My nurses and doctors say that I will outgrow them in time.
Adios Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
Lots of hugs,
John Michael
I received feedings by pump yesterday at a rate of 1.7-2.1 ml/hr and I received a total amount of 49 ml (1.7 oz) for the day. I took all my milk by tube. Keep up the good work Mom -- I really appreciate that great breastmilk! Since yesterday morning, I pooped 3 times and the last time was around midnight.
As of 5 AM, I was on a mechanical ventilator with 45% oxygen. I had 1 apnea/bradycardia spell yesterday, and I've had none so far today. Don't worry about these. My nurses and doctors say that I will outgrow them in time.
Adios Mommy and Daddy. I love when you come. Your visits calm me down and help me sleep better.
Lots of hugs,
John Michael
Sunday, March 4, 2012
Me & my mommy
Daddy wasn't feeling good so mommy came with her crazy family. She busted me out of this joint to get some snuggle time since daddy was home. I lied on her for almost an hour. I love it when she holds me. The nurse says it's good for me because I'm calm and I actually stay still.
Daddy, the nurse says that tomorrow night you can give me my bath. She also said that you can't be so afraid anymore. I'm a strong boy, especially after these steroids. I'm gonna be like Bam Bam. Love you daddy miss you. See you tomorrow.
Daddy, the nurse says that tomorrow night you can give me my bath. She also said that you can't be so afraid anymore. I'm a strong boy, especially after these steroids. I'm gonna be like Bam Bam. Love you daddy miss you. See you tomorrow.
Day 18
Good morning Mommy and Daddy! I weigh 620 grams (1 lb 5.9 oz) today, down 10 grams (0.4 oz) from yesterday's weight. I gained an average of 10.0 grams (0.4 oz) per day over the past 3 days. I'm moving in the right direction weight-wise, and maybe I'll surpise you tomorrow.
I received feedings by pump yesterday at a rate of 1.4-1.7 ml/hr and I received a total amount of 40 ml (1.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I Keep up the good work Mom -- I really appreciate that great breastmilk! Since yesterday morning, I pooped 5 times and the last time was around 8 AM.
As of 8 AM, I was on a mechanical ventilator with 34% oxygen.
See you soon Mommy and Daddy. I love the way you smell when you visit.
Lots of hugs,
John Michael
I received feedings by pump yesterday at a rate of 1.4-1.7 ml/hr and I received a total amount of 40 ml (1.4 oz) for the day. I took all my milk by tube. My last feeding was at 7 AM. I Keep up the good work Mom -- I really appreciate that great breastmilk! Since yesterday morning, I pooped 5 times and the last time was around 8 AM.
As of 8 AM, I was on a mechanical ventilator with 34% oxygen.
See you soon Mommy and Daddy. I love the way you smell when you visit.
Lots of hugs,
John Michael
Saturday, March 3, 2012
Peek a boo
I kept lifting my head and playing peek a boo with daddy. The nurse did not like that very much. I am in a time out with my head tied down to my bed. 
Bath Night
Mommy and Daddy came to give me a bath. I do not like baths! Mommy said that I do not want to be the smelly kid. Mommy washed my body and Daddy did my hair. Mommy brushed my hair when we were all finished. 
Day 17
Good morning Mommy and Daddy! I weigh 630 grams (1 lb 6.2 oz) today, unchanged from yesterday's weight. I gained an average of 23.3 grams (0.8 oz) per day over the past 3 days. I'm getting bigger and bigger day by day. Pretty soon I'll need some new clothes. Be sure to get me some good looking stuff!
I received feedings by pump yesterday at a rate of 1.1-1.4 ml/hr and I received a total amount of 32 ml (1.1 oz) for the day. I took all my milk by tube. Keep up the good work Mom -- I really appreciate that great breastmilk! Since yesterday morning, I pooped twice and the last time was around 4 AM.
As of 6 AM, I was on a mechanical ventilator with 38% oxygen.
See you soon Mommy and Daddy. My nurses and doctors are taking great care of me, but it's your voice I know and love, so please come soon!
Hugs and kisses,
John Michael
I received feedings by pump yesterday at a rate of 1.1-1.4 ml/hr and I received a total amount of 32 ml (1.1 oz) for the day. I took all my milk by tube. Keep up the good work Mom -- I really appreciate that great breastmilk! Since yesterday morning, I pooped twice and the last time was around 4 AM.
As of 6 AM, I was on a mechanical ventilator with 38% oxygen.
See you soon Mommy and Daddy. My nurses and doctors are taking great care of me, but it's your voice I know and love, so please come soon!
Hugs and kisses,
John Michael
Friday, March 2, 2012
Steroid treatment
As I start my steroid treatment I can not help to wonder how this will effect my baseball career. Does anyone have the cell phone number of Ryan Braun's lawyer for future use. I think I saw Dino Laurenzi Jr take my dirty diaper.
While I am thinking about baseball, what is everyone's thoughts on my Mets? I am thinking even with me so small I could play for the Mets and actually help them. I am working with the nurses here to see if I can get a TV for opening day.
While I am thinking about baseball, what is everyone's thoughts on my Mets? I am thinking even with me so small I could play for the Mets and actually help them. I am working with the nurses here to see if I can get a TV for opening day.
Day 16
Happy Friday Mommy and Daddy! I weigh 630 grams (1 lb 6.2 oz) today, down 20 grams (0.7 oz) from yesterday's weight. I gained an average of 26.7 grams (0.9 oz) per day over the past 3 days.
I received feedings by pump yesterday at a rate of 0.8-1.1 ml/hr and I received a total amount of 13 ml (0.4 oz) for the day. I took all my milk by tube. I'm so glad you're giving me breastmilk -- it's the best food for me! Since yesterday morning, I pooped twice and the last time was around 4 AM.
My last bilirubin was 1.3 on 3/1 at 5 PM and that's OK in my book.
As of 6 AM, I was on a mechanical ventilator with 45% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Ta-ta Mommy and Daddy. Your visits make my day!
A big hug and kiss,
John Michael
PS: Just because I'm sending you this e-mail doesn't mean I don't want you to call.
I received feedings by pump yesterday at a rate of 0.8-1.1 ml/hr and I received a total amount of 13 ml (0.4 oz) for the day. I took all my milk by tube. I'm so glad you're giving me breastmilk -- it's the best food for me! Since yesterday morning, I pooped twice and the last time was around 4 AM.
My last bilirubin was 1.3 on 3/1 at 5 PM and that's OK in my book.
As of 6 AM, I was on a mechanical ventilator with 45% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Ta-ta Mommy and Daddy. Your visits make my day!
A big hug and kiss,
John Michael
PS: Just because I'm sending you this e-mail doesn't mean I don't want you to call.
Thursday, March 1, 2012
Please pray for me, mommy & daddy
I really have mommy and daddy worried today. Daddy came to visit this morning and the doctor was there to tell him that I need steroids for my lungs. She told mommy yesterday that she was going to hold out as long as she could at least till I was 2 weeks old. Today is my 2 week birthday. I guess they're just not happy with my lungs. I'm trying guys, I really am fighting. I just get tired sometimes.
Please pray that the steroids work. My mommy is really worried.
Please pray that the steroids work. My mommy is really worried.
Day 15
Good morning Mommy and Daddy! I weigh 650 grams (1 lb 6.9 oz) today, up 50 grams (1.8 oz) from yesterday's weight. I gained an average of 10.0 grams (0.4 oz) per day over the past 3 days. I've decided to try to gain a little faster, so see if you can sneak me a milkshake and a slice of pepperoni pizza (ha! ha!).
I received feedings by pump yesterday at a rate of 0.8 ml/hr. I received a total amount of 16 ml for the day. A fluid oz is about 30 ml so this is about 0.6 oz. I took all my milk by tube. Keep the breastmilk coming -- all those wonderful nutrients are so good for me. Since yesterday morning, I pooped once around midnight.
As of 5 AM, I was on a mechanical ventilator with 60% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Cheerio Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
XOXO,
John Michael
I received feedings by pump yesterday at a rate of 0.8 ml/hr. I received a total amount of 16 ml for the day. A fluid oz is about 30 ml so this is about 0.6 oz. I took all my milk by tube. Keep the breastmilk coming -- all those wonderful nutrients are so good for me. Since yesterday morning, I pooped once around midnight.
As of 5 AM, I was on a mechanical ventilator with 60% oxygen. I had no apnea/bradycardia spells yesterday, and I've had none so far today.
Cheerio Mommy and Daddy. Bring your favorite book to read to me. I will love hearing that story.
XOXO,
John Michael
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