Today was LJ's first Halloween, and I hope every one after this is a better experience! He was circumsized today, and then he had an eye exam where they dialate his eyes and clamp them open. On top of that, they tried his car seat test, where he has to sit in the car seat for an hour and a half without alarms going off...needless to say they tried it after he was circumsized and he failed. They cancelled the test and will try again when he is feeling better. When I told Matt we tried it, his response was, "Only females would suggest he do anything but sleep!" I guess he is right this time!
There are faries that come out at night. Every day when I walk in, something is different. Sometimes it is major, sometimes something little. The faries bring blankets and clothes. They rearrange furniture. They move LJ's monkey and put clothes on him. Today he had a musical mobile when I walked in. I have come to enjoy the faries, and I am sad to think that they won't be following me home! I have told the nurses about my faries and now when anything happens at night, it is surely the faries who have done it. I hope they play with LJ too!
The Sullivan's
Florida July 2015
Monday, October 31, 2011
Wednesday, October 26, 2011
Our Journey
I have finally had a moment to download a bunch of pictures from the past 5 weeks...as of today LJ is drinking 4 full bottles a day! He had his first full bottle on Friday night...and has progressed since then! The nurse told me today that, providing any setbacks, LJ could be home with us in the next 1-2 weeks!
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| Under the bili-lights when I was less than 10 days old. |
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| Hanging out with Daddy at about 2 weeks old. |
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| Dad and I. |
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| Trying my very first bottle! I got almost half! |
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| My first bottle with Mommy. |
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| Drunk on milk. |
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| Finished my whole bottle with Daddy! |
Friday, October 21, 2011
Leaps and Bounds
Today LJ weighed 5 pounds! The past few days he has made incredible progress after his setbacks last week. THey took him off oxygen again last night, and so far he is doing great again. They have continued to increase his feedings...he is now taking 40 ml 8 times a day. We are working on nutritive breast feeding now...but last night he just figured out what he was supposed to do. He still isn't strong enough to get much, but he's getting there. He is taking about half of one bottle each day too. He just gets too tired to get anymore.
Above are a couple of pictures I took today as I was sitting there. He has seemed so weak and fragile until now. I was playing with him today and realized that he is really starting to relax, fill out, and become more of what I think of when I think of a newborn. He has such a gentle demeanor...he doesn't fuss much. He smiles alot (even if they are just gassy smiles!).
We have also decided that I will not be going back to work. It makes me sad to leave my school of over 7 years, but I am also excited to be able to be home with LJ. Since his immune system will not be mature for quite some time, the thought of sending him to daycare scared us both. A new chapter in our lives begins...
We have also decided that I will not be going back to work. It makes me sad to leave my school of over 7 years, but I am also excited to be able to be home with LJ. Since his immune system will not be mature for quite some time, the thought of sending him to daycare scared us both. A new chapter in our lives begins...
Saturday, October 15, 2011
Along for the Ride
First...random fact of the day. Northside hospital has more babies born than any other hospital in the nation...about 18,000 a year. Makes me feel even better about LJ's care there!
This week was a bit of a roller coaster ride...with all of LJ's progress I guess we were starting to think he was nothing but a rock star (he is) and that he would just continue to make such great progress he would be home well before his due date. Come to find out, as they increased his feedings, there comes a point where he hits a threshold that he cannot take anymore. This happened Wednesday...I was in a panic all day because his oxygen saturation kept dropping and his heartrate kept increasing. The alarms were going off non-stop and by the time Matt joined me that afternoon I was about at my breaking point because the constant beeping was getting to me! They ended up putting him back on oxygen. They don't think it is a respiratory issue but a food issue. He has reflux with the increased feedings and it causes him to be unable to breathe. They have lowered his food intake again, but they have increased the calories that the food contains. This means that he is still gaining weight (he was 4 lbs. 8 oz. today...he has officially gained a pound!), but he is eating less. They say that this is common and that it is just a matter of him growing more before he can tolerate the food. It fasicnates me how they have it all down to an art.
They also gave me the go ahead to start trying nutritive breast feeding today...they weigh him before a feeding and after to see if he has actually gotten any milk. Today he actually lost weight after trying to breast feed because he pooped in the middle of it. We will keep trying. They also will start trying bottles tomorrow. In order to go home, he has to be able to drink 8 bottles a day.
Matt got LJ's first explosion today...he was changing his diaper and as he took it off, LJ pooped. It was like nothing I have ever seen! It was all over him, the wall, his cords and wires, the crib and many blankets, his dresser, etc. The poor nurse had to sterilize it all. She set up a blanket shield around him for if he tried to do it again...luckliy for me, who got to change his next diaper, he didn't. I'm sure it won't be the last time and luckily it wasn't at home :) He sure seemed to feel better afterwards though!
Today my wonderful neighbors had a baby shower for me. It was great to hang out for a few hours away from the hospital, and of course, I got spoiled rotten. Between the meals, the gas gift cards, and the shower, I couldn't ask for more supportive friends and family! It has been truly amazing!
The dogs have been great! All four of them know something is going on (well there may be one who lives his life a little clueless), and they don't like being in the basement all day, but Matt comes home and plays with them every night, and they get to smell all of LJ's clothes and blankets every night. They know what he smells like if nothing else. Of course, we will be very watchful of them when LJ gets home, but we think they will all be just fine. They have all been around kids since they were puppies, so they are used to the noises and pulls and tugs that come with little hands...its me and the 6 boys now!
This week was a bit of a roller coaster ride...with all of LJ's progress I guess we were starting to think he was nothing but a rock star (he is) and that he would just continue to make such great progress he would be home well before his due date. Come to find out, as they increased his feedings, there comes a point where he hits a threshold that he cannot take anymore. This happened Wednesday...I was in a panic all day because his oxygen saturation kept dropping and his heartrate kept increasing. The alarms were going off non-stop and by the time Matt joined me that afternoon I was about at my breaking point because the constant beeping was getting to me! They ended up putting him back on oxygen. They don't think it is a respiratory issue but a food issue. He has reflux with the increased feedings and it causes him to be unable to breathe. They have lowered his food intake again, but they have increased the calories that the food contains. This means that he is still gaining weight (he was 4 lbs. 8 oz. today...he has officially gained a pound!), but he is eating less. They say that this is common and that it is just a matter of him growing more before he can tolerate the food. It fasicnates me how they have it all down to an art.
They also gave me the go ahead to start trying nutritive breast feeding today...they weigh him before a feeding and after to see if he has actually gotten any milk. Today he actually lost weight after trying to breast feed because he pooped in the middle of it. We will keep trying. They also will start trying bottles tomorrow. In order to go home, he has to be able to drink 8 bottles a day.
Matt got LJ's first explosion today...he was changing his diaper and as he took it off, LJ pooped. It was like nothing I have ever seen! It was all over him, the wall, his cords and wires, the crib and many blankets, his dresser, etc. The poor nurse had to sterilize it all. She set up a blanket shield around him for if he tried to do it again...luckliy for me, who got to change his next diaper, he didn't. I'm sure it won't be the last time and luckily it wasn't at home :) He sure seemed to feel better afterwards though!
Today my wonderful neighbors had a baby shower for me. It was great to hang out for a few hours away from the hospital, and of course, I got spoiled rotten. Between the meals, the gas gift cards, and the shower, I couldn't ask for more supportive friends and family! It has been truly amazing!
The dogs have been great! All four of them know something is going on (well there may be one who lives his life a little clueless), and they don't like being in the basement all day, but Matt comes home and plays with them every night, and they get to smell all of LJ's clothes and blankets every night. They know what he smells like if nothing else. Of course, we will be very watchful of them when LJ gets home, but we think they will all be just fine. They have all been around kids since they were puppies, so they are used to the noises and pulls and tugs that come with little hands...its me and the 6 boys now!
Tuesday, October 4, 2011
Movin' on up
Today we were reminded just how fragile these little lives can be. We feel so blessed the Lee was born so healthy and that he continues to do so well. Lee is a fighter, and God has allowed him to be with us for a reason. We can't wait to see what he has to hold in store over the coming years.
On Sunday night as we were laying in bed not sleeping again, the phone rang. I sleep with it in the bed with me these days just in case the hospital needs to reach us, but not ever expecting that they would call. At 10 pm the phone rang, and the second I saw that it was the hospital, my heart dropped. Come to find out, everything was great and they were just letting us know that they had moved LJ upstairs to the step-down unit! It doesn't mean the long road is over, but it means that LJ is strong enough to move out of the most critical part of the NICU! He graduated from the 2nd floor to the 7th...this is a big deal in our new world of hospitals! We both felt like we needed to head to the hospital for a late night visit to make sure LJ was adjusting to his new world...some sort of logic prevailed, and we decided to let him be for the night!
I went in yesterday morning and I felt oddly disoriented. I was getting used to the protocol and routines of the 2nd floor and I had to figure it all out again. I think LJ adjusted better than we did...he was sound asleep when I got there. Actually, I think he is happier in his new apartment. It is much quieter and he seems much more peaceful. I laughed because he was the "easy" baby downstairs, but now it seemed like his alarms were the only ones ever going off. The only time LJ has really cried is when we change his diaper. He hasn't even done that the past 2 days...he seems to have given up the fight. That said, he is so much more alert. When we have been changing him, he will open his eyes and watch us quietly.
LJ continues to make progress...he is still in an isolette, but it is a more basic one...within the next few days, they hope to have him in a crib. They continue to lower the temperature in the isolette. Once he gets to room temperature and he maintains his body temperature for a period, he will move into the crib...he is almost there! They continue to lower the oxygen supply as he tolerates it, and soon he should have the nasal tubes out as well. His jaundice numbers were still good today, and they stopped the iv nutrition today too...he is just getting my milk (granted its the souped up version that has calories and fat added). He is gaining weight after his initial dip, and he is at 3 lbs 11 oz! I told Matt today that he really doesn't seem that small anymore. I was assured I was just getting used to his size :)
I am very excited about tomorrow...I get to start doing non-nutritive breast feeding. Basically, he won't get anything but what he gets from the feeding tube, but he will start practicing a couple times a day. In a couple weeks they will start having him try to breast feed and supplement it through the tube and then a bottle when he will tolerate it.
One of the biggest things in his new place is his need for clothing! They make them wear clothes in the crib, so we are practicing now. The preemie clothes were big! Its very difficult to clothe a baby with a bunch of wires through the arm holes in the isolette, but LJ has been very patient with us and doesn't seem to mind the clothes.
The nurses say that it will still be awhile before everything works together, but every day is a step forward!
Random knowledge of the week...babies don't get nipples until the very end. I assumed they were just covered by the sticky things that hold on the wires...nope. No nipples yet! They should be here soon!
On Sunday night as we were laying in bed not sleeping again, the phone rang. I sleep with it in the bed with me these days just in case the hospital needs to reach us, but not ever expecting that they would call. At 10 pm the phone rang, and the second I saw that it was the hospital, my heart dropped. Come to find out, everything was great and they were just letting us know that they had moved LJ upstairs to the step-down unit! It doesn't mean the long road is over, but it means that LJ is strong enough to move out of the most critical part of the NICU! He graduated from the 2nd floor to the 7th...this is a big deal in our new world of hospitals! We both felt like we needed to head to the hospital for a late night visit to make sure LJ was adjusting to his new world...some sort of logic prevailed, and we decided to let him be for the night!
I went in yesterday morning and I felt oddly disoriented. I was getting used to the protocol and routines of the 2nd floor and I had to figure it all out again. I think LJ adjusted better than we did...he was sound asleep when I got there. Actually, I think he is happier in his new apartment. It is much quieter and he seems much more peaceful. I laughed because he was the "easy" baby downstairs, but now it seemed like his alarms were the only ones ever going off. The only time LJ has really cried is when we change his diaper. He hasn't even done that the past 2 days...he seems to have given up the fight. That said, he is so much more alert. When we have been changing him, he will open his eyes and watch us quietly.
LJ continues to make progress...he is still in an isolette, but it is a more basic one...within the next few days, they hope to have him in a crib. They continue to lower the temperature in the isolette. Once he gets to room temperature and he maintains his body temperature for a period, he will move into the crib...he is almost there! They continue to lower the oxygen supply as he tolerates it, and soon he should have the nasal tubes out as well. His jaundice numbers were still good today, and they stopped the iv nutrition today too...he is just getting my milk (granted its the souped up version that has calories and fat added). He is gaining weight after his initial dip, and he is at 3 lbs 11 oz! I told Matt today that he really doesn't seem that small anymore. I was assured I was just getting used to his size :)
I am very excited about tomorrow...I get to start doing non-nutritive breast feeding. Basically, he won't get anything but what he gets from the feeding tube, but he will start practicing a couple times a day. In a couple weeks they will start having him try to breast feed and supplement it through the tube and then a bottle when he will tolerate it.
One of the biggest things in his new place is his need for clothing! They make them wear clothes in the crib, so we are practicing now. The preemie clothes were big! Its very difficult to clothe a baby with a bunch of wires through the arm holes in the isolette, but LJ has been very patient with us and doesn't seem to mind the clothes.
The nurses say that it will still be awhile before everything works together, but every day is a step forward!
Random knowledge of the week...babies don't get nipples until the very end. I assumed they were just covered by the sticky things that hold on the wires...nope. No nipples yet! They should be here soon!
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