It was a sultry Midwestern Summer night, and KelliAnne Race was feeling a bit spry for her age. She may have been fueled by the excitement of another 1oz weight gain earlier that day, or even the pride in taking a much needed poop that had evaded her all day. Perhaps it was the chance to quiet her critics and do what many babies her age struggle to do every day. The stage was set.
KelliAnne vs. the Graco SnugRide car seat...
Her nurse woke her from a 3 hour slumber, changed her dirty diaper, and gave her one last meal before she was to approach her opponent for the first time. At 11:30PM CST KelliAnne was lifted from her crib and taken to her temporary resting spot, and one that she hopes to know well after she escapes the hospital walls. KelliAnne ain't no fool though; she knows respect is earned.
The nurse said that as she set KelliAnne in the seat she had a different look about her, as if a wave of confidence you rarely see in a baby still 5 weeks befor their actual due date will demonstrate. KelliAnne quietly tapped her chest, through a prayer to the Lord and took her seat for 90 minutes of adrenaline charged car seat time.
Then, it happened. She quickly drifted to sleep, and was resting so peacefully the nurse dared not wake her, rather they grabbed her from her seat 2.5 hours later when it was time to wake again for more delicious food. The Mighty SnugRide fell in defeat and agreed to be KelliAnne's companion during the next couple years worth of road trips to the lake.
As for KelliAnne she crossed this hurdle off her list and added this accomplishment to her impressive resume.
Remaining items on to do list:
- eat more food
- gain weight
6.30.2012
6.29.2012
Other Good Stuff going on
- She is actually getting her car seat test tonight - to leave the hospital the baby must be able to sit in their car seat for 90 minutes without experiencing any bradycardia or oxygen desats. She gets put to the test at 11PM tonight. "Why is she taking that test?", you may ask yourself. It is because she is nearing the end my friends.
- feeding 3 times a day orally. She will need to be more consistent with oral feedings and demonstrate she is trending towards 8 full feedings orally, while still gaining weight. We will see what she is capable of this weekend when mom can be there for more feedings.
- they have weened her off of the extra calorie supplement added to her tube feedings, and removed the extra protein as well.
- Oh yea, she is no longer in an incubator. She is in a regular crib now and doing pretty well with the temp control. If they could figure out how to regulate the temp in that room, she would do even better. I am pretty sure when Robin and I are cold sitting there, that the AC is a little strong. They claim it is a solid 74 degrees at all times. Just strange that our cold skin seems to be in sync with when she fails her temperature tests. I'm not saying anything......... I'm just saying.
Now don't jump the gun here folks, we don't have any solid dates, but they have told us to prepare our home for the arrival of a baby sometime soon. If she does what is required of her over the next few days, they will welcome Robin and I to stay in the hospital for 48 hours and take care of her ourselves in a our own room. They do this so that we get comfortable with around the clock care, and so we learn to use the monitors she will be going home with.
Baby's to do list - pass car seat test, eat more, gain more weight, and do the last two at the same time. Easier said than done, but she has already done more than most babies twice her size, I've seen it. ;)
So much to remember...
Ok folks, I feel like I am starting all of my posts with an apology owed for neglecting the blog and your needs for information about our precious baby. The thing is, we have really settled into a routine with our odd lifestyle, and there has not been much time for me to update the blog when had the energy to do so. Wake up, go to work, straight to hospital, get home around 930, eat dinner, and go to bed. Not complaining about the routine, but it just has not left much time for reflection.
The last couple weeks have been pretty enjoyable, and wildly successful in terms of baby developments. Robin is now going into the hospital before work for a feeding so she has that added task during her day on top of the pumping every 3 hours through the work day and night. For both of us though, we have our favorite part of the day which for Robin is heading to the hospital in the mornings to start her day, and for me it is making the drive to the hospital. I can't leave work fast enough. I know why my co-workers with kids are so happy to get home (most nights). It is just completely bizarre that going to the hospital highlights our lives. I am not sure how that has replaced drinking some beers or playing kickball with 'Menace 2 Sobriety', but it has. That is probably because KelliAnne has changed so much and seems so healthy now. (I can't flip this pic over, feel free to either stand on your head or flip your screen)
The last couple weeks have been pretty enjoyable, and wildly successful in terms of baby developments. Robin is now going into the hospital before work for a feeding so she has that added task during her day on top of the pumping every 3 hours through the work day and night. For both of us though, we have our favorite part of the day which for Robin is heading to the hospital in the mornings to start her day, and for me it is making the drive to the hospital. I can't leave work fast enough. I know why my co-workers with kids are so happy to get home (most nights). It is just completely bizarre that going to the hospital highlights our lives. I am not sure how that has replaced drinking some beers or playing kickball with 'Menace 2 Sobriety', but it has. That is probably because KelliAnne has changed so much and seems so healthy now. (I can't flip this pic over, feel free to either stand on your head or flip your screen)
You may not be able to see the number on that scale, but it says 4 lb 1 oz. KelliAnne has packed on the weight the last couple weeks. She has really picked up her ability to nurse, and they have continued to increase her tube feedings. She has exceeded our expectations, and the doctors as well.
6.17.2012
Best Father's Day gift ever... here are some pics to prove it
33 Weeks
KelliAnne has continued to progress as the doctors have expected. She is pooping like a baby, eating a full ounce every feeding now, and has become quite vocal and demanding when she wants (or doesn't want something).
The doctors told us early this week that everything is going very great, except for being slightly anemic, which is very common for a baby her age, and they need to see more weight gain. KelliAnne started the week at 2lb 14oz, only 10oz over her birth weight. They expect her to be gaining about 25g per day on average, we were not quite at that. She was listening and turned on the weight gain nearly every day, and as of the evening of 6/16 she was up to 3lb 6oz! She gained over an ounce per day average, and it shows. She is starting to look so big and healthy to us even, and we see her every day.
Now she needs to start producing more mature red blood cells and getting her iron levels up on her own, otherwise a blood transfusion could be in her future. Keep your thoughts on KelliAnne Wed morning as she gets tested for red blood count again.
The most fun part of this week was the eye exam on Wednesday. I worked from the hospital so I could be there to help her stay a little calm, because they told us that the babies do not appreciate stuff shoved in their eye. The doctors were looking to see how her eye is maturing. Since babies eyes are one of the last parts to develop since they don't freaking need them at this point usually, they can sometimes stop developing, and the blood vessels may just stop growing that connect their retinas to the back of the eye. They checked them out, pissed her off, and then I held her for a couple hours and she was all good. Her eyes are about where they would expect, so we get to do the same thing the next two weeks to make sure all continues as planned.
Especially with returning to work, we treasure each time we get to spend with KelliAnne and we have captured some great moments from the last week we will share here.
The doctors told us early this week that everything is going very great, except for being slightly anemic, which is very common for a baby her age, and they need to see more weight gain. KelliAnne started the week at 2lb 14oz, only 10oz over her birth weight. They expect her to be gaining about 25g per day on average, we were not quite at that. She was listening and turned on the weight gain nearly every day, and as of the evening of 6/16 she was up to 3lb 6oz! She gained over an ounce per day average, and it shows. She is starting to look so big and healthy to us even, and we see her every day.
Now she needs to start producing more mature red blood cells and getting her iron levels up on her own, otherwise a blood transfusion could be in her future. Keep your thoughts on KelliAnne Wed morning as she gets tested for red blood count again.
The most fun part of this week was the eye exam on Wednesday. I worked from the hospital so I could be there to help her stay a little calm, because they told us that the babies do not appreciate stuff shoved in their eye. The doctors were looking to see how her eye is maturing. Since babies eyes are one of the last parts to develop since they don't freaking need them at this point usually, they can sometimes stop developing, and the blood vessels may just stop growing that connect their retinas to the back of the eye. They checked them out, pissed her off, and then I held her for a couple hours and she was all good. Her eyes are about where they would expect, so we get to do the same thing the next two weeks to make sure all continues as planned.
Especially with returning to work, we treasure each time we get to spend with KelliAnne and we have captured some great moments from the last week we will share here.
Back to Work
We had an interesting and hectic week returning back to our jobs and life away from the home and hospital. I returned to work on Monday, and Robin went back to work on Wednesday. Robin returned to work exactly 4 weeks after the baby was born.... after a wickedly fast and rough c-section. The woman is a superhero. She did this so she will have plenty of time to continue the bonding and help welcome home KelliAnne when she is able to leave the hospital. Without doing this, her FMLA time would have been exhausted most likely before baby girl even left the hospital.
Anyway, it was a week full of rapid clean up around the house, and prep to even be ready to go back to work. Cleaning out emails for me, and for Robin, preparing mentally for a new job (same company, new role). This also entailed Robin refining her wardrobe. I don't think she found that to be very fun, but she was absolutely beautiful for her first few days back in the office. It was the first time she had really had to get up and get dressed nice, put on make up for quite some time considering she had been on bed rest prior to the baby coming. She looked great, had a pretty good week getting to know her boss and some co-workers.
Leaving for work for me on Monday, and Wednesday for Robin, was a daunting task as we both have become so accustomed to sitting near KelliAnne's incubator for so long, and watching her monitors. We have also enjoyed getting her out every three hours for feedings, diaper and kangaroo care. We will not be there for as much of that going forward, but we were able to hustle out of work every night and get to the hospital by 5PM for her feeding and time to be awake and visit with us.
I think KelliAnne knew we returning to work this week, so she made it a little easier. Her bradychardia has decreased to just 5 or 6 episodes per day, which is lower than you would expect for a baby her age. She has not desaturated in over a week now. I mentioned last week the nasal prongs came out, so no more assistance to breathe. She went 7 full days without desatting so they are no longer monitoring her oxygen saturation levels. All good stuff and steps in the right direction.
Anyway, it was a week full of rapid clean up around the house, and prep to even be ready to go back to work. Cleaning out emails for me, and for Robin, preparing mentally for a new job (same company, new role). This also entailed Robin refining her wardrobe. I don't think she found that to be very fun, but she was absolutely beautiful for her first few days back in the office. It was the first time she had really had to get up and get dressed nice, put on make up for quite some time considering she had been on bed rest prior to the baby coming. She looked great, had a pretty good week getting to know her boss and some co-workers.
Leaving for work for me on Monday, and Wednesday for Robin, was a daunting task as we both have become so accustomed to sitting near KelliAnne's incubator for so long, and watching her monitors. We have also enjoyed getting her out every three hours for feedings, diaper and kangaroo care. We will not be there for as much of that going forward, but we were able to hustle out of work every night and get to the hospital by 5PM for her feeding and time to be awake and visit with us.
I think KelliAnne knew we returning to work this week, so she made it a little easier. Her bradychardia has decreased to just 5 or 6 episodes per day, which is lower than you would expect for a baby her age. She has not desaturated in over a week now. I mentioned last week the nasal prongs came out, so no more assistance to breathe. She went 7 full days without desatting so they are no longer monitoring her oxygen saturation levels. All good stuff and steps in the right direction.
6.08.2012
The herd is moving...
When babies in the NICU are doing very well and reach a status where they are very stable and just need to grow and wait to mature before they can go home, they often move to the 'Grower/Feeder' room. It sounds like we are referring to cattle or some kind of livestock, but in seriousness, this is a very good sign of a baby getting healthy. This move also frees up bed space for sicker and newer babies that are just born or transferred to Saint Luke's on the Plaza, which is a referral center for high risk pregnancies in a 100 mile radius.
This move was made by KelliAnne yesterday. She is in the old NICU at Saint Luke's now that does not have all the bells and whistles because she does not currently need them. We are happy to accommodate new parents and their sick babies because in our opinion the more room at Saint Luke's on the Plaza means a better chance at a good start for a preemie. They are nothing short of miracle workers and it is clear that everyone that works there has been called to do that specific job.
The nurses did caution us that many times babies for whatever reason may take a step back to the main NICU, but we are knocking on wood, and continuing to pray that she can stay here until our calf can move home.
This move was made by KelliAnne yesterday. She is in the old NICU at Saint Luke's now that does not have all the bells and whistles because she does not currently need them. We are happy to accommodate new parents and their sick babies because in our opinion the more room at Saint Luke's on the Plaza means a better chance at a good start for a preemie. They are nothing short of miracle workers and it is clear that everyone that works there has been called to do that specific job.
The nurses did caution us that many times babies for whatever reason may take a step back to the main NICU, but we are knocking on wood, and continuing to pray that she can stay here until our calf can move home.
Rookie Parents and frozen yogurt...
The last few days have been very good for KelliAnne. She had a couple days where she lost weight but that had to do with her getting 'unclogged' a bit. She had not been going '# 2" as frequently as she should so the doctors checked her out. They found quite a bit of air in her belly, which was good, because the alternative they were worried about was some sort of infection to her stomach and intestines that would have been very bad. The other good part about a bunch of air in her belly, is they have ways to get this out. It's called a suppository. This helped get things moving for KelliAnne and resulted in a sligh weight loss over two days. No worries though she gained it back, and is actually up to 2 lb 14 oz. Almost 3 lb now, which will be a big milestone. The nurses have told us once babies hit that weight she should really start gaining regularly.
The other interesting part about a suppository is the amount of garbage that can be produced by this little baby. Yesterday, Robin and I were tag team changing a diaper, as it is pretty tough through the holes of the incubator. KelliAnne had an average size stool. Robin got her cleaned up and had a new diaper already underneath the dirty one so we could just pull it out and strap on the new one. We proceed, and KelliAnne proceeds to fill the new diaper like someone had just flipped the handle on a frozen yogurt machine. She then filled covered a little towel and another diaper. Robin and I were impressed and laughing hysterically. This was one of our finer moments as new parents, and the most we had laughed in quite some time..... The nurses got a kick out of us as well and let us know what we have in store for our future.
Oh yea... we also managed to keep the incubator and all the bed covers clean somehow with all this, and KelliAnne took notice. Once we had all the poo cleaned up, KelliAnne decided to pee straight into the air when Robin was scooting diaper # 3 under her. This got her monitor leads, the bed, the 3rd diaper and her snuggle up bed cover dirty. We tried.
The other interesting part about a suppository is the amount of garbage that can be produced by this little baby. Yesterday, Robin and I were tag team changing a diaper, as it is pretty tough through the holes of the incubator. KelliAnne had an average size stool. Robin got her cleaned up and had a new diaper already underneath the dirty one so we could just pull it out and strap on the new one. We proceed, and KelliAnne proceeds to fill the new diaper like someone had just flipped the handle on a frozen yogurt machine. She then filled covered a little towel and another diaper. Robin and I were impressed and laughing hysterically. This was one of our finer moments as new parents, and the most we had laughed in quite some time..... The nurses got a kick out of us as well and let us know what we have in store for our future.
Oh yea... we also managed to keep the incubator and all the bed covers clean somehow with all this, and KelliAnne took notice. Once we had all the poo cleaned up, KelliAnne decided to pee straight into the air when Robin was scooting diaper # 3 under her. This got her monitor leads, the bed, the 3rd diaper and her snuggle up bed cover dirty. We tried.
6.03.2012
New pics from week 30
https://picasaweb.google.com/116053787981267429805/PicsFromWeek30?authuser=0&authkey=Gv1sRgCIS3o_ipxOHcQQ&feat=directlink
Here is a link to another slideshow of KelliAnne.
Here is a link to another slideshow of KelliAnne.
Week 31 Update
Ok, so sorry for the delay in posting, but we have been waiting for some results of a brain scan on KelliAnne before we wanted to post news of tons of positive steps she has made in the last week. We have nothing but good news this week, starting with the brain scan. KelliAnne had a brain ultrasound on the 23rd that showed she had a slight hemorrhage in her ventricles. I can't remember all the technical details of this, but the doctors actually were quite positive about this, telling us it is very common for a baby born this early. They advised that instead of having a 1 month follow-up scan, that she would need one the following week (May 30). That day was Wednesday, until they literally forgot to do it (good sign they weren't too worried). They finally got around to the scan on Friday and it showed the swelling from the hemorrhage was decreasing as they hoped. There was a big sigh of relief from all of us that were waiting as this was the only thing going that was not extremely great and ahead of the game. So on to that news.
This little baby continues to amaze us with her strength. On her 30 week update I mentioned she was back to her birth weight of 2 lb 4 oz. As of her 31 week (yesterday) she had gained 8 oz and is up to 2 lb 12 oz. We leave the hospital each night around 7 or so and call in about 1030 before we go to bed for updates on her new weight and each night this week they kept giving us the great news. The reason for this is she is handling her feedings (still through a feeding tube) and they continued to increase by 1 mL every 12 hours. She is now getting 22 mL fortified with 4 extra calories, every 3 hours. This is actually enough to give her a very full belly and make her sleep 'like a baby'. They will continue to increase the feeding going forward based on her weight gain and ability to digest without issues.
I mentioned the brady's (b's) before, and those have really slowed down, likely because they figured out her caffeine dosage. She has a few per day, but that is all normal stuff. She has them when she is either very sound asleep or when she has a Desat (further known as d's). A desat is when her oxygen saturation dips below a targeted range. She is having these when she gets a really full belly because it is so hard to take a big breath! They are not worried, so we are learning not to worry.
Other great news: Her PICC line was removed. The PICC is a central IV that was providing her nutrition, but it is no longer needed because she is getting all she needs from the milk her mama is working hard to produce.
She is also now off temp control. We will see how she does with that, but that means she gets to start wearing clothes which makes Robin, the grandmas, and aunts very happy. Luckily, Robin had a shower this weekend with tons of good friends and family that netted lots of baby clothes that we have already cleaned (thanks Grandma Judy) and delivered to KelliAnne's nurses to dress her.
When we get some time, we will add more pics that were taken over the weekend. She continues to look more and more like a baby we are used to seeing. She just looks healthier every day and we love every minute we get to spend with her.
This little baby continues to amaze us with her strength. On her 30 week update I mentioned she was back to her birth weight of 2 lb 4 oz. As of her 31 week (yesterday) she had gained 8 oz and is up to 2 lb 12 oz. We leave the hospital each night around 7 or so and call in about 1030 before we go to bed for updates on her new weight and each night this week they kept giving us the great news. The reason for this is she is handling her feedings (still through a feeding tube) and they continued to increase by 1 mL every 12 hours. She is now getting 22 mL fortified with 4 extra calories, every 3 hours. This is actually enough to give her a very full belly and make her sleep 'like a baby'. They will continue to increase the feeding going forward based on her weight gain and ability to digest without issues.
I mentioned the brady's (b's) before, and those have really slowed down, likely because they figured out her caffeine dosage. She has a few per day, but that is all normal stuff. She has them when she is either very sound asleep or when she has a Desat (further known as d's). A desat is when her oxygen saturation dips below a targeted range. She is having these when she gets a really full belly because it is so hard to take a big breath! They are not worried, so we are learning not to worry.
Other great news: Her PICC line was removed. The PICC is a central IV that was providing her nutrition, but it is no longer needed because she is getting all she needs from the milk her mama is working hard to produce.
She is also now off temp control. We will see how she does with that, but that means she gets to start wearing clothes which makes Robin, the grandmas, and aunts very happy. Luckily, Robin had a shower this weekend with tons of good friends and family that netted lots of baby clothes that we have already cleaned (thanks Grandma Judy) and delivered to KelliAnne's nurses to dress her.
When we get some time, we will add more pics that were taken over the weekend. She continues to look more and more like a baby we are used to seeing. She just looks healthier every day and we love every minute we get to spend with her.
5.28.2012
Hard as a Rock
=Tom
I was thinking about just putting his name here to get the point across regarding how strong Tom has been. However, he deserves more credit for how amazing he has been...more then I could ever give him.
-While in the hospital, almost every night nurse commented on our team work with the three hour pumpings. How great it was that Tom was up with me, cleaning the bottles every time, and then walking them down to the NICU.
-I cannot imagine how scary the first few hours of Miss KelliAnne's life were and Tom handled it like a champ. He did not leave her side and absorbed so much information from the doctors that I felt like I had not missed a beat when I was finally able to go and see her. I could not imagine going through this adventure with anyone else then my Rock, Tom
OK, enough with the mushy stuff!
In an earlier post Tom commented on how great Farmers has been. I need to second that with my employer, Cerner. From day one (way back in April when bedrest began) my leadership team has been amazing and more then understanding. Their number one focus has been me and our baby, no worries about work. We are very blessed to not have to add work stress to our plate!
I was thinking about just putting his name here to get the point across regarding how strong Tom has been. However, he deserves more credit for how amazing he has been...more then I could ever give him.
-While in the hospital, almost every night nurse commented on our team work with the three hour pumpings. How great it was that Tom was up with me, cleaning the bottles every time, and then walking them down to the NICU.
-I cannot imagine how scary the first few hours of Miss KelliAnne's life were and Tom handled it like a champ. He did not leave her side and absorbed so much information from the doctors that I felt like I had not missed a beat when I was finally able to go and see her. I could not imagine going through this adventure with anyone else then my Rock, Tom
OK, enough with the mushy stuff!
In an earlier post Tom commented on how great Farmers has been. I need to second that with my employer, Cerner. From day one (way back in April when bedrest began) my leadership team has been amazing and more then understanding. Their number one focus has been me and our baby, no worries about work. We are very blessed to not have to add work stress to our plate!
Stuff still going pretty well with KelliAnne...
The doctor just called us as we were headed out the door to go back to the hospital and gave us the morning update. KelliAnne has gained another 20 grams, which puts her at 110 grams gained in the last 5 days. That is really good. She is now up to 2 lb 6 oz. She has tolerated room air (21% O2) coming through the canula at the lowest level possible, and they increased her caffeine (keeps her from deep deep sleep where she will forget to breathe), and her brady's decreased to only 14 over the last 24 hours. Seems high to me when we are talking about the number of times your heart rate dips dangerously low, however, they said if she was not having them at this gestational age, that would be really weird.
If the doctors are encouraged, we will be as well.
In the next 24 to 48 hours they will be testing KelliAnne off of the canula altogether and just let her breathe regular room air like you and I without assistance.
A few good pictures showing how much she has changed
We love this picture of KelliAnne. We are not supposed to use flash photography because it can stress out little babies, but I accidentally did in this one, and it turned out great. She just looks like a little baby now. She seems to be OK with the camera as well.
Here was another picture we really like. She was waving goodbye to us before we left the other night.
Here was another picture we really like. She was waving goodbye to us before we left the other night.
.. and this one. This was a preemie hat, that is still clearly way to big. I can't decide if she looks like Bob Marley or a chef. Either way, she has options.
5.26.2012
30 weeks today...
KelliAnne hit her 30 week gestation today. That is adjusted given she is not in utero but nonetheless, she is there. We also had good news getting into the hospital earlier today . Her billirubin level was low enough to take her off the lights. I am sure you noticed in the pictures a blue light on her. That business is done, as long as she keeps pooping. Apparently that is how she expels the billirubin.
The other good news is that she has gained some weight and she is actually back above her birth weight. She is still in the 2 lb 4 oz range, but all the way up to 1030 grams. She was born at 1010 grams. She has gained over 2 oz in the last two days. That is because she has handled her milk well allowing the doctors to increase her feedings. She is all the way up to 7 mL of milk every three hours and she has steadily increased every 12 hours. She could be close to a full oz in the next couple weeks at this rate which should help add to her daily calorie intake.
5.25.2012
New Stuff about Preemies we learned
We have been learning quite a bit about the challenges that a baby born this premature faces on a daily basis. They have little hands, feet, arms, legs, hearts, and if that is not enough, little brains. The reason is that some major parts of their brain are not yet developed and were not in the plans until around 36 - 37 weeks. Many of these developments are related to the nervous system. Our nurse explained this like a contract that a baby had, and when they are born early we have 'renegotiated' the terms. When they come out early they have some side effects (clearly) because of this. Here are a couple:
One of the side effects of 'life on the outside' for a baby is that they are used to a tight and confined space with little room to move around. Now they are in a big area and are not squeezed and they will lift and flail their arms and legs quite a bit. This is a sign of stress for a preemie. You want to see them laying with their arms and legs in tight to their bodies, still in the fetal position. Because of that we do a lot of hand containment to make them feel that confinement, we also have pillows and stuff all around her to make her feel there are still some walls around her. When she breaks free of the pillows, we try to get our hands on her as fast as we can.
The other effect of her new living arrangements is pretty major. Babies don't breathe in the womb and aren't asked to do so until about 40 weeks. KelliAnne is breathing room air with a tiny bit of help from a some air into her nose. I think she is doing pretty good considering, however, this exerts a lot of energy which makes it tough for her to gain weight. Her body would be using that energy to grow if still in the womb. The other issue is that the part of her brain that tells her to breathe consistently is not fully developed. No big deal though, she alarms herself, her parents, and the nurse with bradycardia. This started yesterday when her heart rate just dropped from the 150s (normal for a baby her age) into the 60s. Apparently this is normal until her brain development catches up with her required activity of breathing. Luckily she is strong enough to recover and basically wake up immediately and has not yet required the assistance of the nurses. We are told by fellow NICU parents that we can expect some of that in the future, it just happens, but for now to enjoy how she is bringing her heart rate back up on her own. They increased the air pressure on her O2 flow today, which is nothing major as she is still breathing on her own.
It is best to not watch the monitors.... we are still learning.
One of the side effects of 'life on the outside' for a baby is that they are used to a tight and confined space with little room to move around. Now they are in a big area and are not squeezed and they will lift and flail their arms and legs quite a bit. This is a sign of stress for a preemie. You want to see them laying with their arms and legs in tight to their bodies, still in the fetal position. Because of that we do a lot of hand containment to make them feel that confinement, we also have pillows and stuff all around her to make her feel there are still some walls around her. When she breaks free of the pillows, we try to get our hands on her as fast as we can.
The other effect of her new living arrangements is pretty major. Babies don't breathe in the womb and aren't asked to do so until about 40 weeks. KelliAnne is breathing room air with a tiny bit of help from a some air into her nose. I think she is doing pretty good considering, however, this exerts a lot of energy which makes it tough for her to gain weight. Her body would be using that energy to grow if still in the womb. The other issue is that the part of her brain that tells her to breathe consistently is not fully developed. No big deal though, she alarms herself, her parents, and the nurse with bradycardia. This started yesterday when her heart rate just dropped from the 150s (normal for a baby her age) into the 60s. Apparently this is normal until her brain development catches up with her required activity of breathing. Luckily she is strong enough to recover and basically wake up immediately and has not yet required the assistance of the nurses. We are told by fellow NICU parents that we can expect some of that in the future, it just happens, but for now to enjoy how she is bringing her heart rate back up on her own. They increased the air pressure on her O2 flow today, which is nothing major as she is still breathing on her own.
It is best to not watch the monitors.... we are still learning.
5.24.2012
The weekend and leaving the hospital...
Over the weekend Robin received tons of flowers and gifts from our friends and family, including lots of pink clothing. We really didn't have any clothing for KelliAnne other than some gender neutral stuff. Robin kind of anticipated on handling that later, as well as getting some stuff at showers and what not. The St. Louis shower was cancelled while Robin was on bedrest, and I believe will take place some time later in the fall.
KelliAnne did great over the weekend, and she began to move around more and more. We became more comfortable with the hand containment and learned more ways on how we can express ourselves to the baby through touch and sound. We also started reviewing the info they gave us explaining the developmental benefits to this interaction. It is remarkable how big of an impact it can have.
The nurses' job is not only to care for KelliAnne, but to make sure we are part of the care they give her as it is part of the bonding with parents. They want us fully prepared to leave their NICU and take care of her like she was a term baby that had no health issues. We are just trying to soak it all up. On Saturday they had us changing diapers, checking temps, and learning how to help control the temp of the isolette. They also asked us to be vocal with the nurses regarding care for KelliAnne. The nurses are on shifts and change out frequently so we will actually start picking up many clues to what she needs that they are not familiar with. One such clue that we advised our Sunday nurse was that she has better stats when laying on her right side, so she rotated her. The reason was supported by the x-ray that showed her left lung was still not inflating all the way. We knew this but the new nurse did not, so they actually listened to us and let us feel more involved.
Later in the day on Sunday, we left the hospital. They kept Robin there an extra day longer than the normal c-section because we had the baby staying behind. Next to seeing how lifeless and sick KelliAnne was on her first day of life, this was extremely tough. The baby was supposed to come home with us in our plan. We headed home where Robin's parents and my mom were waiting to help us get settled. Robin's mom found our cleaning supplies and restored our home to a condition we had not seen it in for quite some time. We were stunned at how clean everything was. It was one less thing to worry about.
We were back at the hospital within a couple hours and stayed there until late that night.
KelliAnne did great over the weekend, and she began to move around more and more. We became more comfortable with the hand containment and learned more ways on how we can express ourselves to the baby through touch and sound. We also started reviewing the info they gave us explaining the developmental benefits to this interaction. It is remarkable how big of an impact it can have.
The nurses' job is not only to care for KelliAnne, but to make sure we are part of the care they give her as it is part of the bonding with parents. They want us fully prepared to leave their NICU and take care of her like she was a term baby that had no health issues. We are just trying to soak it all up. On Saturday they had us changing diapers, checking temps, and learning how to help control the temp of the isolette. They also asked us to be vocal with the nurses regarding care for KelliAnne. The nurses are on shifts and change out frequently so we will actually start picking up many clues to what she needs that they are not familiar with. One such clue that we advised our Sunday nurse was that she has better stats when laying on her right side, so she rotated her. The reason was supported by the x-ray that showed her left lung was still not inflating all the way. We knew this but the new nurse did not, so they actually listened to us and let us feel more involved.
Later in the day on Sunday, we left the hospital. They kept Robin there an extra day longer than the normal c-section because we had the baby staying behind. Next to seeing how lifeless and sick KelliAnne was on her first day of life, this was extremely tough. The baby was supposed to come home with us in our plan. We headed home where Robin's parents and my mom were waiting to help us get settled. Robin's mom found our cleaning supplies and restored our home to a condition we had not seen it in for quite some time. We were stunned at how clean everything was. It was one less thing to worry about.
We were back at the hospital within a couple hours and stayed there until late that night.
Friday.... big day
On Friday, KelliAnne had remained stable and was actually taken off the respirator on put on SEAPAP. She handled this like a champ, likely due to the steroid shot she received for lung development nearly a month prior while we were in the hospital in Springfield. That turned out to be a very big deal potentially as she was breathing better than many '28 weekers'.
She also began her trophic feedings by a feeding tube directly into her belly and had no resistance. 5 days of this are needed before they can begin to increase her food intake by 1 mL every 12 hours if handling it well. They will do this until she is receiving a normal serving of breast mile with each feeding, while decreasing food delivered by IV. Her dependency on the breast mile and acceptance of it, will be a huge factor going forward as it has developmental nutrients you can't duplicate artificially. I have done the research on this... it's true.
I have focused mainly on the development on KelliAnne so far, but while this is going on, Robin and I have pretty much just sat in the chairs near her isolette and watched her, done some hand containment, and read to her as much as possible. Thanks to my sisters from bringing us lots of books to read to KelliAnne.
We have also tried to catch up on sleep. Robin has a better excuse than I considering she had major surgery just two days ago. I just don't sleep well any more. Robin also is awake every 3 hours to get 'milked' as well so no real continuity in our napping any more. That is preparing us for when baby comes home!
She also began her trophic feedings by a feeding tube directly into her belly and had no resistance. 5 days of this are needed before they can begin to increase her food intake by 1 mL every 12 hours if handling it well. They will do this until she is receiving a normal serving of breast mile with each feeding, while decreasing food delivered by IV. Her dependency on the breast mile and acceptance of it, will be a huge factor going forward as it has developmental nutrients you can't duplicate artificially. I have done the research on this... it's true.
I have focused mainly on the development on KelliAnne so far, but while this is going on, Robin and I have pretty much just sat in the chairs near her isolette and watched her, done some hand containment, and read to her as much as possible. Thanks to my sisters from bringing us lots of books to read to KelliAnne.
We have also tried to catch up on sleep. Robin has a better excuse than I considering she had major surgery just two days ago. I just don't sleep well any more. Robin also is awake every 3 hours to get 'milked' as well so no real continuity in our napping any more. That is preparing us for when baby comes home!
Day 2
Day 2 in the NICU had a lot less drama. Robin was feeling better, the baby was wiggling around and acting more like she should, so we were starting to settle in to what things are going to be like for us until KelliAnne can go home. She had some issues with acid in her blood that they were working on the day before, and the medicine they were giving her actually got the acid levels back into an acceptable range by the end of day 2 (May 17th). She was showing signs that her lungs were also in better condition as they were able to reduce the usage of the respirator and let her pick up some of the slack. Much of this day was spent by me asking tons of questions regarding all of the numbers on the monitors, learning what ranges we wanted to see them in, and we also spent a lot of time doing the hand containment.
They explained to us certain milestones they want to see out of KelliAnne to be demonstrating progress. First, less dependent on the respirator so they can work her up to a SEAPAP machine (exactly like what people use for snoring or sleep apnea), then a canula (not sure on spelling). Other movement they wanted to see was a couple days of stability in her other organs (heart, brain, liver, kidneys) before they would start feeding her. Day 2 went well for this category, so she was getting closer to receiving trophic feedings. 1 mL of breast mile every 3 hours. Trophic feedings are to coat the stomach and let the antibodies from Robin help protect the baby from infection.
I am not a real doctor, but I could play one on TV at this point.
They explained to us certain milestones they want to see out of KelliAnne to be demonstrating progress. First, less dependent on the respirator so they can work her up to a SEAPAP machine (exactly like what people use for snoring or sleep apnea), then a canula (not sure on spelling). Other movement they wanted to see was a couple days of stability in her other organs (heart, brain, liver, kidneys) before they would start feeding her. Day 2 went well for this category, so she was getting closer to receiving trophic feedings. 1 mL of breast mile every 3 hours. Trophic feedings are to coat the stomach and let the antibodies from Robin help protect the baby from infection.
I am not a real doctor, but I could play one on TV at this point.
Subscribe to:
Posts (Atom)