Big Leaps, Minor Setbacks, and some VIDEOS to view!
Posted by Kaycie and Charley at 8/31/2007 6:15 PM and is filed under uncategorized 
It is exactly as the title reads... big leaps and some minor setbacks...welcome to the life of a Preemie in the NICU!
So, last weekend, Addy went off Oxygen (O2). She went to an Oxyhood so the nurses could better control her pressures without disturbing her and she only needed that for about a day. Then, within a few days, she also got bumped to every other feeding by bottle and then to an open crib...all in a matter of 72 hours or less...WAY TOO MUCH FOR A LITTLE 29 WEEK BABY THAT IS ONLY 4 weeks old! And, not to mention, she got moved to level I care early Wednesday morning....
So, within the past few days she has had some setbacks. The first day in the open crib was pretty uneventful. Her temperatures stayed pretty well and she nippled most, if not all, of her feedings that she got by bottle. Then, the following Wednesday, Dr. Maria Del Rio (hence the name Maria! She obviously has a little soft spot for Addy because her middle name is Maria and my mom's name is Maria!) noticed how sluggish her nippling looked. I didn't really notice it as the nurses had kept telling me to push her a little. And, you ARE supposed to push them with nippling and there are things you do to help them with the suck, swallow, breathe reflex, but Addy was pretty much lethargic and nothing was making her suck and she was having Brady's while eating (that was my first clue, but it didn't happen until her 2nd bottle feeding after 24 hours into an open crib). So, Dr. Del Rio took a 2nd look at her chart and they backed off. We were told not to push her feedings and to let her nipple what she wants, push her a little, but stop when she basically gives up and NG (put it in her tube) the rest of her formula.
The next night, Dr. Del Rio looked at her again. In that conversation, a doctor FINALLY believed me when she was conceived and what her actual gestational age was. She was a 29week and 2 day baby, but all the ultrasounds showed the girls at 30w0d. So, Dr. Del Rio changed her chart. So, she was 4 weeks yesterday and her gestational age should of been 33w2d as of yesterday. So, she's doing FANTASTIC for what she's doing. Her hemoglobins were a little low, so she now gets Iron with her bottle during her 9am feed. They put her back on the oxygen blender last night. This is a constant flow of oxygen to the back of her throat to help her take deep breathes. The oxygen tank just wasn't cutting it. The tank was just a small whisp and because she kept going on and off of the tank, the Neo said that something wasn't matching up there. They were catching her doing Periodic breathing and a few Brady's a day, which neither should be happening if her need was for the oxygen tank. (Periodic breathing is where she takes normal breaths and then takes very shallow breaths which then cause her oxygen saturation to plummet and then if it continues she forgets to breathe and she has a Brady & O2 tanks are usually used for babies who were vented for long periods of time or had CLD-Chronic Lung Disease) Essentially, she's on room air, but she needs the flow to keep her from doing the periodic breathing. This helps her take those big deep breaths and she avoids shallow breathing this way too. She's at a 1/2 L of O2, but again it's at room air (21%) or she sometimes goes up to 25% air..which isn't much. They also have backed off her feedings pretty good. She gets 35ccs every 3 hours either by bottle or tube. We were told to absolutely not force her in anyway to get her 35ccs. She's on a strick 30 minute time limit for feeding (merely because she will expend more energy by going past 30 minutes than she is receiving in calories).
Her weight has been slow-going, as expected. She weighed in as follows:
Tuesday- 4lb 1.2oz
Wednesday- 4lb 0.8oz
Thursday- 4lb 1.5oz
Friday - 4lb 2.1oz
So, she lost a little, but then started gaining, but that has a lot to do with them not pushing her feedings.
Her feedings have been as follows:
9am feeds - Around 20-35ccs
3pm feeds - Around 15-20ccs
9pm feeds - Around 10-20ccs
3am feeds - 7ccs & 10ccs - plum pitiful since she used to take a full 35ccs at 3am....
A brief NICU rant....
I have been spending around 14 hours at the hospital everyday now. I bring work with me and I feed her at 9am, 3pm, and 9pm. I love being there and I break often for lunch and dinner and also to do some other things, but it's all quite frustrating and tiring at times. Level I is an entirely new experience...a frustrating one at that. You see one too many parents up there who probably shouldn't be parents and you see a LOT of parents that do NOT understand the NICU experience. They are in there for such a short period of time that they think it's the worst feeling ever leaving the hospital without their child (but yes, it's difficult - I got wheeled out of the hospital with Reagan's memory box on my lap..so I DO understand that feeling!) OR they are so incredibly disrespectful of other babies in the NICU not necessarily because they are trying to be, but because they just don't "understand" the severity of some of those babies' problems. That may sound harsh, but I do think there is some truth that parents with short-term NICU stays have it harder than parents with long-term NICU stays. Why? Because when you KNOW your baby is going to be there for several weeks...you accept it right away. The closer you move to the front of the NICU, the more you see these kinds of parents that think a 5 day or even a 10 day stay are excruiating and they have no idea how sick babies in that NICU really are. It's because they aren't experiencing that and I thank God they are spared the emotions of a long-term NICU experience. Addy is spending her 30th day in the NICU tomorrow. She'll celebrate her 1 month birthday on Sunday, still in the hospital. She's likely to even celebrate her 2 month birthday in the hospital. And, if she doesn't do that, she'll come home on an apnea monitor (no matter how long she stays in the hospital), that now seems inevitable. Which means that we (and anyone that will be responsible for her care - like grandparents, etc.) will be required to take an infant CPR class and we will also be required to stay in the parent care room for at least 1 evening, possibly 2, to ensure we are capable of caring for her and are comfortable with her monitors. We'll work with a company to process her apnea monitor information daily and we'll be trained by individuals on how to ensure her leads to her machine are connected. Yes, it's reassuring to us for her to come home on this, especially with all her Bradycardia spells, but it's another piece of the puzzle that a lot of parents in level I just don't understand. That's not really mean to be mean, but it's the unfortunate part of the NICU. It seems a lot of babies in the NICU in level I are there for jaundice, slow feeders, or low birth weight. The majority of Level II and III are babies who were born early for things such as pre-term labor, pre-eclampsia, gestational diabetes, etc..etc.. Those babies are far more critical. What I mean by parents not understanding in Level I, if they don't understand how too much stimulation for some babies in level I and level II is hard on Preemies. There are quite a few full-term babies in Level I, and there sits Addy... She cannot even begin to compete with the lungs of the 36, 37, 38, & 39 weekers in there. She's only 33 weeks and 3 days gestation and all of 4lbs.. I think I've only heard her scream during a bath when she's super cold. Not to mention that I was so uncomfortable with her nurse today that I stayed in the NICU nearly all day and I held her for 3 straight hours. I have NEVER felt uncomfortable like that EVER before...I think she's been pushed up to level I entirely too quickly and that she's not doing well with things not only because of the changes in her own area (O2 & open crib & feedings), but because of all the noise and stimulation that her little body is not ready for...
But, on with some fun stuff........
Tonight, I gave her a bath and we stripped all the tubes and fuss off her face and cleaned her up good. Charley got a picture of that, so I'll have to load that tomorrow. She looks REALLY good with no oxygen or feeding tubes or stickies on her face. I was giving her a good bath and I didn't realize the soap bottle was still open and I went to wash her back as I know it hasn't gotten a good clean bath in a while and some soap fell smack into BOTH her little eyes! Oh boy...did I feel AWFUL! I know it's tear-free, but still.. poor baby. I quickly wiped her eyes clean with wet cotton balls..but it took her a good 10 minutes before she would open her eyes back up. I tried to look in them and see if I got it all out and I dried them pretty good and the nurse reassured me she was fine, but it was still the point of how it happened. Plus, everything that was on her shelf above her crib just wanted to fall on her...bulb syringe, pacy, feeding tube, etc..etc..etc... And, she ended up getting her bath about 30 minutes early tonight because she pooped so bad!! She's on a special formula, EnfaCare22 which has 22 calories/ounce. It smells awful...no one knows why! But, the poop smells even WORSE! I could smell her from pretty far away.. When I had walked into see her around 8pm, she's just laying there..wide awake..looking around.. and very calm and quiet. Poor girl either doesn't mind a dirty diaper, or simply cannot cry loud enough to let a nurse know she's dirty.. *sigh* It was so smelly the trash can had to be emptied almost immediately after. Thanks to EnfaCare her excretions stink, but thanks to EnfaCare..she's gaining weight! Certainly an eventual end to my already emotional day!
Here are a few fun videos & pics from the past few days...(I LOVE YOUTUBE!)
Addy's Good Dream (& she smiles!)
Addy WIDE EYED and with HICCUPS!
Addy drinks from a bottle!
Addy gets burped AND plays with her tongue!
And, a few fun photos..
GOT MILK? Trust mom though..this ain't no 2%!!!
Please, don't bother me!
Mommy keeps me warm before the nurse weighs me... she also told me not to pee on her! Then the nurse told her I hadn't pooped in over 24 hours..so then she said I could pee on her, but I couldn't poop! Man, she's picky!
I'm gettin' to be SO BIG!
The nurse sneaks in my Iron to raise my blood counts so that I don't taste it. Then she told mommy that I'll spit 1/2 of it out and it'll stain my clothes.. She wasn't too thrilled...
Check out my pink knee highs! Oh, wait, I mean my socks...and they LOOKED tiny...
Another one of Grandma's outfits! And, yes, I'm still in Preemie size.. I'm just still a little peanut!
Let me show you how I rip my oxygen cannula out! I'm so busted! I'll just look at Grandma and act like I'm just smelling my fingers...
So, last weekend, Addy went off Oxygen (O2). She went to an Oxyhood so the nurses could better control her pressures without disturbing her and she only needed that for about a day. Then, within a few days, she also got bumped to every other feeding by bottle and then to an open crib...all in a matter of 72 hours or less...WAY TOO MUCH FOR A LITTLE 29 WEEK BABY THAT IS ONLY 4 weeks old! And, not to mention, she got moved to level I care early Wednesday morning....
So, within the past few days she has had some setbacks. The first day in the open crib was pretty uneventful. Her temperatures stayed pretty well and she nippled most, if not all, of her feedings that she got by bottle. Then, the following Wednesday, Dr. Maria Del Rio (hence the name Maria! She obviously has a little soft spot for Addy because her middle name is Maria and my mom's name is Maria!) noticed how sluggish her nippling looked. I didn't really notice it as the nurses had kept telling me to push her a little. And, you ARE supposed to push them with nippling and there are things you do to help them with the suck, swallow, breathe reflex, but Addy was pretty much lethargic and nothing was making her suck and she was having Brady's while eating (that was my first clue, but it didn't happen until her 2nd bottle feeding after 24 hours into an open crib). So, Dr. Del Rio took a 2nd look at her chart and they backed off. We were told not to push her feedings and to let her nipple what she wants, push her a little, but stop when she basically gives up and NG (put it in her tube) the rest of her formula.
The next night, Dr. Del Rio looked at her again. In that conversation, a doctor FINALLY believed me when she was conceived and what her actual gestational age was. She was a 29week and 2 day baby, but all the ultrasounds showed the girls at 30w0d. So, Dr. Del Rio changed her chart. So, she was 4 weeks yesterday and her gestational age should of been 33w2d as of yesterday. So, she's doing FANTASTIC for what she's doing. Her hemoglobins were a little low, so she now gets Iron with her bottle during her 9am feed. They put her back on the oxygen blender last night. This is a constant flow of oxygen to the back of her throat to help her take deep breathes. The oxygen tank just wasn't cutting it. The tank was just a small whisp and because she kept going on and off of the tank, the Neo said that something wasn't matching up there. They were catching her doing Periodic breathing and a few Brady's a day, which neither should be happening if her need was for the oxygen tank. (Periodic breathing is where she takes normal breaths and then takes very shallow breaths which then cause her oxygen saturation to plummet and then if it continues she forgets to breathe and she has a Brady & O2 tanks are usually used for babies who were vented for long periods of time or had CLD-Chronic Lung Disease) Essentially, she's on room air, but she needs the flow to keep her from doing the periodic breathing. This helps her take those big deep breaths and she avoids shallow breathing this way too. She's at a 1/2 L of O2, but again it's at room air (21%) or she sometimes goes up to 25% air..which isn't much. They also have backed off her feedings pretty good. She gets 35ccs every 3 hours either by bottle or tube. We were told to absolutely not force her in anyway to get her 35ccs. She's on a strick 30 minute time limit for feeding (merely because she will expend more energy by going past 30 minutes than she is receiving in calories).
Her weight has been slow-going, as expected. She weighed in as follows:
Tuesday- 4lb 1.2oz
Wednesday- 4lb 0.8oz
Thursday- 4lb 1.5oz
Friday - 4lb 2.1oz
So, she lost a little, but then started gaining, but that has a lot to do with them not pushing her feedings.
Her feedings have been as follows:
9am feeds - Around 20-35ccs
3pm feeds - Around 15-20ccs
9pm feeds - Around 10-20ccs
3am feeds - 7ccs & 10ccs - plum pitiful since she used to take a full 35ccs at 3am....
A brief NICU rant....
I have been spending around 14 hours at the hospital everyday now. I bring work with me and I feed her at 9am, 3pm, and 9pm. I love being there and I break often for lunch and dinner and also to do some other things, but it's all quite frustrating and tiring at times. Level I is an entirely new experience...a frustrating one at that. You see one too many parents up there who probably shouldn't be parents and you see a LOT of parents that do NOT understand the NICU experience. They are in there for such a short period of time that they think it's the worst feeling ever leaving the hospital without their child (but yes, it's difficult - I got wheeled out of the hospital with Reagan's memory box on my lap..so I DO understand that feeling!) OR they are so incredibly disrespectful of other babies in the NICU not necessarily because they are trying to be, but because they just don't "understand" the severity of some of those babies' problems. That may sound harsh, but I do think there is some truth that parents with short-term NICU stays have it harder than parents with long-term NICU stays. Why? Because when you KNOW your baby is going to be there for several weeks...you accept it right away. The closer you move to the front of the NICU, the more you see these kinds of parents that think a 5 day or even a 10 day stay are excruiating and they have no idea how sick babies in that NICU really are. It's because they aren't experiencing that and I thank God they are spared the emotions of a long-term NICU experience. Addy is spending her 30th day in the NICU tomorrow. She'll celebrate her 1 month birthday on Sunday, still in the hospital. She's likely to even celebrate her 2 month birthday in the hospital. And, if she doesn't do that, she'll come home on an apnea monitor (no matter how long she stays in the hospital), that now seems inevitable. Which means that we (and anyone that will be responsible for her care - like grandparents, etc.) will be required to take an infant CPR class and we will also be required to stay in the parent care room for at least 1 evening, possibly 2, to ensure we are capable of caring for her and are comfortable with her monitors. We'll work with a company to process her apnea monitor information daily and we'll be trained by individuals on how to ensure her leads to her machine are connected. Yes, it's reassuring to us for her to come home on this, especially with all her Bradycardia spells, but it's another piece of the puzzle that a lot of parents in level I just don't understand. That's not really mean to be mean, but it's the unfortunate part of the NICU. It seems a lot of babies in the NICU in level I are there for jaundice, slow feeders, or low birth weight. The majority of Level II and III are babies who were born early for things such as pre-term labor, pre-eclampsia, gestational diabetes, etc..etc.. Those babies are far more critical. What I mean by parents not understanding in Level I, if they don't understand how too much stimulation for some babies in level I and level II is hard on Preemies. There are quite a few full-term babies in Level I, and there sits Addy... She cannot even begin to compete with the lungs of the 36, 37, 38, & 39 weekers in there. She's only 33 weeks and 3 days gestation and all of 4lbs.. I think I've only heard her scream during a bath when she's super cold. Not to mention that I was so uncomfortable with her nurse today that I stayed in the NICU nearly all day and I held her for 3 straight hours. I have NEVER felt uncomfortable like that EVER before...I think she's been pushed up to level I entirely too quickly and that she's not doing well with things not only because of the changes in her own area (O2 & open crib & feedings), but because of all the noise and stimulation that her little body is not ready for...
But, on with some fun stuff........
Tonight, I gave her a bath and we stripped all the tubes and fuss off her face and cleaned her up good. Charley got a picture of that, so I'll have to load that tomorrow. She looks REALLY good with no oxygen or feeding tubes or stickies on her face. I was giving her a good bath and I didn't realize the soap bottle was still open and I went to wash her back as I know it hasn't gotten a good clean bath in a while and some soap fell smack into BOTH her little eyes! Oh boy...did I feel AWFUL! I know it's tear-free, but still.. poor baby. I quickly wiped her eyes clean with wet cotton balls..but it took her a good 10 minutes before she would open her eyes back up. I tried to look in them and see if I got it all out and I dried them pretty good and the nurse reassured me she was fine, but it was still the point of how it happened. Plus, everything that was on her shelf above her crib just wanted to fall on her...bulb syringe, pacy, feeding tube, etc..etc..etc... And, she ended up getting her bath about 30 minutes early tonight because she pooped so bad!! She's on a special formula, EnfaCare22 which has 22 calories/ounce. It smells awful...no one knows why! But, the poop smells even WORSE! I could smell her from pretty far away.. When I had walked into see her around 8pm, she's just laying there..wide awake..looking around.. and very calm and quiet. Poor girl either doesn't mind a dirty diaper, or simply cannot cry loud enough to let a nurse know she's dirty.. *sigh* It was so smelly the trash can had to be emptied almost immediately after. Thanks to EnfaCare her excretions stink, but thanks to EnfaCare..she's gaining weight! Certainly an eventual end to my already emotional day!
Here are a few fun videos & pics from the past few days...(I LOVE YOUTUBE!)
Addy's Good Dream (& she smiles!)
Addy WIDE EYED and with HICCUPS!
Addy drinks from a bottle!
Addy gets burped AND plays with her tongue!
And, a few fun photos..
GOT MILK? Trust mom though..this ain't no 2%!!!
Please, don't bother me!
Mommy keeps me warm before the nurse weighs me... she also told me not to pee on her! Then the nurse told her I hadn't pooped in over 24 hours..so then she said I could pee on her, but I couldn't poop! Man, she's picky!
I'm gettin' to be SO BIG!
The nurse sneaks in my Iron to raise my blood counts so that I don't taste it. Then she told mommy that I'll spit 1/2 of it out and it'll stain my clothes.. She wasn't too thrilled...
Check out my pink knee highs! Oh, wait, I mean my socks...and they LOOKED tiny...
Another one of Grandma's outfits! And, yes, I'm still in Preemie size.. I'm just still a little peanut!
Let me show you how I rip my oxygen cannula out!
I'm so busted! I'll just look at Grandma and act like I'm just smelling my fingers...
Kaycie- you have every right to rant....I am sorry that you and Addy (and Charley) are having a rough time. Yes level 1 is a different world....I wish that the nursing staff could be able to get the other parents to understand what you guys have and are going through...maybe they would be a little more understanding, who knows.
On a better note, Addy is just as gorgeous as ever!!!! She is so cute, you just want to scoop her up and cuddle...I am so jealous of those nurses- they better behave, she deserves it! Love the videos, they are precious! Keeping you all in my thoughts, sending you tons of love!
Reply to this
Grandma wants to know why the pictures of the nursery are not posted yet on the website!!!
Reply to this