May 29, 2013
It has been a few eventful days.
Respiratory Development: I had a few rough days after my first attempt at taking my vent out. It tooks me 3 days to get back to where I was before the extubation and then 3 days to grow and get stronger until this morning when I just pulled my ET tube out myself - the docs said "let's go ahead and see if he is telling us something." Sure enough I was and now I am on only a nasal cannula that still gives me respiratory support but there is not a big tube down my throat.
Mom and Dad can now hear me cry which is novel right now...in a few months at 3am, they will probably long for the tube.
Growth: I am up to 0.98KG or 2.2lbs - I am huge!
Feeding: I am now 100% on breast milk, no more IV supplements! They took out my last IV and now everything goes through my feeding tube or meds go in orally. I am a free man!
So now I just need to grow a bunch and let my lungs finish developing and start feeding not out of the tube. Still a ways to go but definetly progressing.
Thanks for all your prayers - they have helped so much!!!
Wednesday, May 29, 2013
Saturday, May 25, 2013
May 25, 2013 - Happy 5 Year Anniversary Mom and Dad
May 25, 2013
Well, I finally started to recover yesterday from the vent extubation attempt. It really wore me out. What really helped was when Mom and I kangarooed for 2 hours again - we have now deemed the 4 hours around kangaroo care, the time when I am on a "kangaroo high." My oxygen needs go down dramatically, my heart rate, temperature, and blood pressure are really low - it is like a drug, everyone should try it!
The day before was really rough - I needed more blood since during the extubation they had to test my blood a lot more often so I needed a little boost via the blood transfusion. Unfortunately, that meant I needed a new IV. It took them three times to get the IV in and that means three sticks - I was not happy!!! So, today, I let them know it. Every time they tried to come into my incubator, my heart rate went up and my oxygen levels dropped- basically my way of saying "don't you even think of sticking me again!"
Growth: Well, the extubation meant that they had to stop my breast milk feeds so I dropped back down a little in weight. They have decided to wait a week or so to try extubation again because I REALLY need to gain some weight. They are beefing up my milk feeds now with lipids and fortified calcium so I can start packing on the pounds. A lot of my issues right now come because I am too small to handle a lot of added stress, so hopefully they can push me a little more as I get bigger.
Yesterday was also Mom and Dad's 5 year anniversary. We spent the afternoon visiting and then Mom and Dad went out to dinner at Leon's just the two of them (they hadn't been out just the two of them since January). I heard it was fun but Mom started falling asleep at the table at 9pm - they were in bed by 10pm.
Well, I finally started to recover yesterday from the vent extubation attempt. It really wore me out. What really helped was when Mom and I kangarooed for 2 hours again - we have now deemed the 4 hours around kangaroo care, the time when I am on a "kangaroo high." My oxygen needs go down dramatically, my heart rate, temperature, and blood pressure are really low - it is like a drug, everyone should try it!
The day before was really rough - I needed more blood since during the extubation they had to test my blood a lot more often so I needed a little boost via the blood transfusion. Unfortunately, that meant I needed a new IV. It took them three times to get the IV in and that means three sticks - I was not happy!!! So, today, I let them know it. Every time they tried to come into my incubator, my heart rate went up and my oxygen levels dropped- basically my way of saying "don't you even think of sticking me again!"
Growth: Well, the extubation meant that they had to stop my breast milk feeds so I dropped back down a little in weight. They have decided to wait a week or so to try extubation again because I REALLY need to gain some weight. They are beefing up my milk feeds now with lipids and fortified calcium so I can start packing on the pounds. A lot of my issues right now come because I am too small to handle a lot of added stress, so hopefully they can push me a little more as I get bigger.
Yesterday was also Mom and Dad's 5 year anniversary. We spent the afternoon visiting and then Mom and Dad went out to dinner at Leon's just the two of them (they hadn't been out just the two of them since January). I heard it was fun but Mom started falling asleep at the table at 9pm - they were in bed by 10pm.
Thursday, May 23, 2013
May 23 - one step forward two steps back
May 23
There is a saying in the NICU..."one step forward, two steps back for a while, then 1:1 and then you will feel only small steps forward." We'll, the last few days it felt like only progress-gaining weight, going down in vent settings, like it was uphill. Then, yesterday they tried to take me off the vent. I went onto another machine called a CPAP which meant no tube in my throat but tubes in my nose which allows me to do more of the breathing work. Well, I really tried but it just exhausted me. It was like doing an iron man and I was more in marathon shape. So they had to put me back on the vent at 12am. Argh! Thy day that this happens often, it takes one or two times to actually be able to get off the vent. Then today all my stats are a mess because it is like the day after a marathon- I am really tired! So I have to get another blood!transfusion, they stopped my feeds until tonight. I have had to get lots off blood drawn and so didn't have very good sleep except when mom and I kangarooed for 2 hours!!!
On a positive note, I hit 0.9kg today or 2.01 lbs!!!!
There is a saying in the NICU..."one step forward, two steps back for a while, then 1:1 and then you will feel only small steps forward." We'll, the last few days it felt like only progress-gaining weight, going down in vent settings, like it was uphill. Then, yesterday they tried to take me off the vent. I went onto another machine called a CPAP which meant no tube in my throat but tubes in my nose which allows me to do more of the breathing work. Well, I really tried but it just exhausted me. It was like doing an iron man and I was more in marathon shape. So they had to put me back on the vent at 12am. Argh! Thy day that this happens often, it takes one or two times to actually be able to get off the vent. Then today all my stats are a mess because it is like the day after a marathon- I am really tired! So I have to get another blood!transfusion, they stopped my feeds until tonight. I have had to get lots off blood drawn and so didn't have very good sleep except when mom and I kangarooed for 2 hours!!!
On a positive note, I hit 0.9kg today or 2.01 lbs!!!!
Tuesday, May 21, 2013
May 21
May 21, 2013
Lungs: today my doc mentioned that I only have a couple of more days on the vent!!!! That will be a big step!
Growth: Up to 0.84kg. 2lbs here I come.
Feeding: up to 10 cc/feeding. Yum!
Mom and I are getting ready to kangaroo so have to sign off!
Lungs: today my doc mentioned that I only have a couple of more days on the vent!!!! That will be a big step!
Growth: Up to 0.84kg. 2lbs here I come.
Feeding: up to 10 cc/feeding. Yum!
Mom and I are getting ready to kangaroo so have to sign off!
Monday, May 20, 2013
May 20 - What it takes for me to go home? Link to growth chart...
A few days have gone by and Mom keeps forgetting to bring her computer to update the blog. So, there are a few days of updates coming. This past weekend I got to kangaroo with Dad for the first time - it was awesome and makes me really happy when I get to snuggle.
There are three key things that I need to be able to show to be able to go home (which is not going to happen until July most likely!):
LUNG DEVELOPMENT: They have been able to wean me more and more off the vent with my rate today being around 29 (when I first came, my rate was 60)! I need to get down to 20 and be there comfortably without lots of desats to be able to come off the vent. So a while longer but making progress on that front.
FEEDING: I am not up to 1oz/day of food - up from .2 oz only 3 days ago.
That is the excitement - hope all is well with you.
There are three key things that I need to be able to show to be able to go home (which is not going to happen until July most likely!):
- LUNG DEVELOPMENT:Get off vent, then get off CPAP (the next lung support machine), then get off oxygen completely. So I will give a daily report on this from now on. I am still at step 1 but progressing.
- FEEDING: I am now eating breast milk as well as the TPN (synthesized nutrients). I need to be completely on breast milk, right now I am getting 50% of calories from breast milk - up from 0% as of last week. I get all my food through tubes and IVs now - I have to be able to feed on a bottle or breast by the time I leave.
- GROWTH: I came in at 1.4lbs and now am at 1.8lbs. I really need to gain a few more pounds to be able to go home so this is going to be a slow progress. Here is a link to my weight chart: Miles Weight Chart
LUNG DEVELOPMENT: They have been able to wean me more and more off the vent with my rate today being around 29 (when I first came, my rate was 60)! I need to get down to 20 and be there comfortably without lots of desats to be able to come off the vent. So a while longer but making progress on that front.
FEEDING: I am not up to 1oz/day of food - up from .2 oz only 3 days ago.
That is the excitement - hope all is well with you.
Thursday, May 16, 2013
May 16
May 16, 2013
Yesterday, was great fun - we had a wonderful kangaroo session and then I had a pretty good night. Today has been a little less fun, they have heard a heart murmur a few times and so I had to have another ECHO - a heart ultrasound I have been pretty fussy since then! It is a rather long scan - 20 minutes and they come and put gel on my little chest and so in general that makes me unhappy.
But this afternoon I am definitely looking forward to some more kangaroo care! Mom also made a chart of my weight so everyone can keep up with my growth!
See today's graph below:
Yesterday, was great fun - we had a wonderful kangaroo session and then I had a pretty good night. Today has been a little less fun, they have heard a heart murmur a few times and so I had to have another ECHO - a heart ultrasound I have been pretty fussy since then! It is a rather long scan - 20 minutes and they come and put gel on my little chest and so in general that makes me unhappy.
But this afternoon I am definitely looking forward to some more kangaroo care! Mom also made a chart of my weight so everyone can keep up with my growth!
See today's graph below:
Wednesday, May 15, 2013
May 15, 2013
Well, the lasts couple of days have been rather eventful. Our "NICU" roller coaster began on Friday. This is the term for babies like me in the first fewonths of life. Generally we have about a week "honeymoon" where everything looks great and then we start a roller coaster ride of really good days and really not so good days. One doctor though said it nicely...she said "hold your heart and get ready for the ride. He will get home just not on a nice long ride through the French countryside."
So I had two days of bad blood gases, the way they tell if my lungs and general health are progressing, so they have me all kind of drugs because they think what happened based on a cortisol number is that my adrenal gland is not fully developed so my stress response is not very good. Thus, I got really stressed out from e dry thing going on and so they gave me lots of drugs to help me chill out. By the time mom got to the hospital on Mother's Day. ,I had a great day. The next two days were touch and go but I am gaining weight, pooping more regularly, and generally think one step forward and two steps back. They say that eventually I will take 2 forward and 1 back and then just 2 forward. But for now just hold your heart and try to be patient with the ride.
Well, the lasts couple of days have been rather eventful. Our "NICU" roller coaster began on Friday. This is the term for babies like me in the first fewonths of life. Generally we have about a week "honeymoon" where everything looks great and then we start a roller coaster ride of really good days and really not so good days. One doctor though said it nicely...she said "hold your heart and get ready for the ride. He will get home just not on a nice long ride through the French countryside."
So I had two days of bad blood gases, the way they tell if my lungs and general health are progressing, so they have me all kind of drugs because they think what happened based on a cortisol number is that my adrenal gland is not fully developed so my stress response is not very good. Thus, I got really stressed out from e dry thing going on and so they gave me lots of drugs to help me chill out. By the time mom got to the hospital on Mother's Day. ,I had a great day. The next two days were touch and go but I am gaining weight, pooping more regularly, and generally think one step forward and two steps back. They say that eventually I will take 2 forward and 1 back and then just 2 forward. But for now just hold your heart and try to be patient with the ride.
Friday, May 10, 2013
May 8,9,and 10
May 8-9
Well, the NICU is a roller coaster with the 8th being a bit of a down day and the 9th being a good day. What constitutes a down day - lots of procedures and so my stats fluctuated a great deal that day. I had a head ultrasound to check for bleeding in the brain - all ok. I had a chest xray to look at my lungs and intestines - all progressing. And I had a blood transfer since they take so much blood from me and I am not big enough to reproduce my own very fast. I was tired from all this so my lungs needed more support and my heartbeat was pretty fast, so we rested in the afternoon, evening, and night.
Yesterday, I was much happier and so Mom and I had some kangaroo care time - 1.5 hours of holding which was great. I started feeding yesterday - lots of colostrum breast milk - yum. And I am up 0.8 Kg or 1 lb 12 oz. Mom and Aunt A in the meantime had a little rougher day...Two nights ago on the way home Dad and Mom got pulled over by a cop for not fully stopping at a stop sign. Our license plate was expired as well because Mom has to get her license updated to get the plate updated and this has obviously not been a priority in the last 5 weeks. So, Mom and Aunt A tooks a trip to the DMV to get it all taken care of and after 3 hours of waiting they were driving home and their tire blew out! Another fun adventure in Team Sloan's life!
May 8-9
Well, the NICU is a roller coaster with the 8th being a bit of a down day and the 9th being a good day. What constitutes a down day - lots of procedures and so my stats fluctuated a great deal that day. I had a head ultrasound to check for bleeding in the brain - all ok. I had a chest xray to look at my lungs and intestines - all progressing. And I had a blood transfer since they take so much blood from me and I am not big enough to reproduce my own very fast. I was tired from all this so my lungs needed more support and my heartbeat was pretty fast, so we rested in the afternoon, evening, and night.
Yesterday, I was much happier and so Mom and I had some kangaroo care time - 1.5 hours of holding which was great. I started feeding yesterday - lots of colostrum breast milk - yum. And I am up 0.8 Kg or 1 lb 12 oz. Mom and Aunt A in the meantime had a little rougher day...Two nights ago on the way home Dad and Mom got pulled over by a cop for not fully stopping at a stop sign. Our license plate was expired as well because Mom has to get her license updated to get the plate updated and this has obviously not been a priority in the last 5 weeks. So, Mom and Aunt A tooks a trip to the DMV to get it all taken care of and after 3 hours of waiting they were driving home and their tire blew out! Another fun adventure in Team Sloan's life!
Tuesday, May 7, 2013
IUGR Description and Our Journey
Miles and IUGR Diagnosis
Definition
Intrauterine growth restriction (IUGR) refers to poor growth of a baby while in the mother's womb during pregnancy. The causes can be many, but most often involve poor maternal nutrition or lack of adequate oxygen supply to the fetus.
At least 60% of the 4 million neonatal deaths that occur worldwide every year are associated with low birth weight (LBW), caused by intrauterine growth restriction (IUGR), preterm delivery, and genetic/chromosomal abnormalities,[1] demonstrating that under-nutrition is already a leading health problem at birth.
Our Journey with IUGR
How did Miles get here? It all started with the first trimester screening test. At the first trimester blood screen, I got back a weird test result. They tested Miles for chromosomal abnormalities at that appointment and everything looked chromosomally normal. Many of these tests come up funky with no long-term issues. 10% of the time, the funkiness is related to a placental issue - turns out that Miles' placenta was part of that 10% but we would not know that for a few months. Miles at that point was measuring accordingly and looked really healthy on the ultrasound. This was week 18. But the doctor wanted me to be followed by a specialist, perinatologist, just in case. I was scheduled for an additional ultrasound every 4 weeks starting at 20 weeks.
On Thursday, April 4, I ran into the Perinatologist office to get an ultrasound on the way to my yoga class before our week of beach fun at St Simons Island we had planned. The doctor came in and told me that Miles was measuring 2 weeks behind his gestational age and that the cause was due to placental insufficiency which she could tell because there was absent blood flowing periodically through the umbilical cord. The rest of the conversation was a bit of a blur.
The Hardest Decision a Person Can Make
My doctor suggested that I get admitted at that point and get steroids (to help babies with some of the complications) because if not fetal demise in utero was a significant possibility. There are no articles on how fast the demise can happen. There are babies who demise quickly and there are babies who make it 5-8 weeks. There are no statistics to help with the decision because doctors rarely recommend waiting and seeing because of their malpractice risk. But I was lucky. I had studies NICU babies for 2 years in my time at Texas Children's. I understood what the outcomes of 1 24 week, 495 gram baby would be. Even if he did make it, he would most likely die on the outside or be severely disabled. I strongly believe that God would choose our path. And my time in the NICU had taught me that although "viability" as determined by the legal definition is 24 weeks that outcomes really change and "viability as I define it is 27 weeks. An article that helped me scientifically in this situation is as follows:
Definition
Intrauterine growth restriction (IUGR) refers to poor growth of a baby while in the mother's womb during pregnancy. The causes can be many, but most often involve poor maternal nutrition or lack of adequate oxygen supply to the fetus.
At least 60% of the 4 million neonatal deaths that occur worldwide every year are associated with low birth weight (LBW), caused by intrauterine growth restriction (IUGR), preterm delivery, and genetic/chromosomal abnormalities,[1] demonstrating that under-nutrition is already a leading health problem at birth.
Our Journey with IUGR
How did Miles get here? It all started with the first trimester screening test. At the first trimester blood screen, I got back a weird test result. They tested Miles for chromosomal abnormalities at that appointment and everything looked chromosomally normal. Many of these tests come up funky with no long-term issues. 10% of the time, the funkiness is related to a placental issue - turns out that Miles' placenta was part of that 10% but we would not know that for a few months. Miles at that point was measuring accordingly and looked really healthy on the ultrasound. This was week 18. But the doctor wanted me to be followed by a specialist, perinatologist, just in case. I was scheduled for an additional ultrasound every 4 weeks starting at 20 weeks.
On Thursday, April 4, I ran into the Perinatologist office to get an ultrasound on the way to my yoga class before our week of beach fun at St Simons Island we had planned. The doctor came in and told me that Miles was measuring 2 weeks behind his gestational age and that the cause was due to placental insufficiency which she could tell because there was absent blood flowing periodically through the umbilical cord. The rest of the conversation was a bit of a blur.
The Hardest Decision a Person Can Make
My doctor suggested that I get admitted at that point and get steroids (to help babies with some of the complications) because if not fetal demise in utero was a significant possibility. There are no articles on how fast the demise can happen. There are babies who demise quickly and there are babies who make it 5-8 weeks. There are no statistics to help with the decision because doctors rarely recommend waiting and seeing because of their malpractice risk. But I was lucky. I had studies NICU babies for 2 years in my time at Texas Children's. I understood what the outcomes of 1 24 week, 495 gram baby would be. Even if he did make it, he would most likely die on the outside or be severely disabled. I strongly believe that God would choose our path. And my time in the NICU had taught me that although "viability" as determined by the legal definition is 24 weeks that outcomes really change and "viability as I define it is 27 weeks. An article that helped me scientifically in this situation is as follows:
May 6 & 7
May 6, 2013
Today was a big day - our first day of kangaroo care. Kangaroo care is "Kangaroo care is a technique practiced on newborn, usually preterm, infants wherein the infant is held, skin-to-skin, with an adult. Kangaroo care for pre-term infants may be restricted to a few hours per day, but if they are medically stable that time may be extended. Some parents may keep their babies in-arms for many hours per day. Kangaroo care, named for the similarity to how certain marsupials carry their young, was initially developed to care for preterm infants in areas where incubators are either unavailable or unreliable."
Miles and mommy had 2.5 hours of kangaroo care today. Unfortunately, since the tubes are so small that help me to breathe, one of the tubes got dislodged and at the end and I had to get intubated but the whole experience was amazing! It is hard to envision that being this small it is ok to hold me for so long but it is kind of amazing the things they can do!
I was a bit persnickety after the intubation but now I am good to go. I had some good gases and so they are slowly weaning down my oxygen.
Overall, half of the day was great with a little drama in the second half. We only live in 4 hour increments at this point so one good 4 hour period and one not so good which balances to a 7/10 day!
May 7, 2013
Day 11 - I have gained 4 0Z! I am up to 1lb 11oz. I also had my first poop today - they were worried because I had not passed any poop since delivery but things are moving!
We could not do kangaroo care today because of the rough go yesterday but hopefully tomorrow. They were able to wean me off my vent a little more, especially when they put me on my tummy - that makes me really happy!
Outside of that, not much to report. I might have to have a blood transfusion tomorrow since they took so much blood for my routine blood test today - we will see!
May 6, 2013
Today was a big day - our first day of kangaroo care. Kangaroo care is "Kangaroo care is a technique practiced on newborn, usually preterm, infants wherein the infant is held, skin-to-skin, with an adult. Kangaroo care for pre-term infants may be restricted to a few hours per day, but if they are medically stable that time may be extended. Some parents may keep their babies in-arms for many hours per day. Kangaroo care, named for the similarity to how certain marsupials carry their young, was initially developed to care for preterm infants in areas where incubators are either unavailable or unreliable."
Miles and mommy had 2.5 hours of kangaroo care today. Unfortunately, since the tubes are so small that help me to breathe, one of the tubes got dislodged and at the end and I had to get intubated but the whole experience was amazing! It is hard to envision that being this small it is ok to hold me for so long but it is kind of amazing the things they can do!
I was a bit persnickety after the intubation but now I am good to go. I had some good gases and so they are slowly weaning down my oxygen.
Overall, half of the day was great with a little drama in the second half. We only live in 4 hour increments at this point so one good 4 hour period and one not so good which balances to a 7/10 day!
May 7, 2013
Day 11 - I have gained 4 0Z! I am up to 1lb 11oz. I also had my first poop today - they were worried because I had not passed any poop since delivery but things are moving!
We could not do kangaroo care today because of the rough go yesterday but hopefully tomorrow. They were able to wean me off my vent a little more, especially when they put me on my tummy - that makes me really happy!
Outside of that, not much to report. I might have to have a blood transfusion tomorrow since they took so much blood for my routine blood test today - we will see!
Sunday, May 5, 2013
May 5, 2013
Another eventful day in miles life. He had a blood transfusion today because he blood had dropped a bit again overnight. The big event was how mad he got when the blood was complete - the machine's alert was annoying beeping and that really made miles mad! You can tell what he is feeling by his vitals.
Another eventful day in miles life. He had a blood transfusion today because he blood had dropped a bit again overnight. The big event was how mad he got when the blood was complete - the machine's alert was annoying beeping and that really made miles mad! You can tell what he is feeling by his vitals.
Saturday, May 4, 2013
Update: May 4, 2013
Miles is having a good day today. We have had lots of good holding therapy! We can't actually hold him yet but we can gently lay hands on him which provides great comfort to him. Also, some gentle singing and chatting about our Dad is of great comfort.
Medical: his x-ray of abdomen looked normal. Blood gases were a little off and blood count dropped last night so they gave him another little blood transfusion to up the blood. They do this because they stick and poke on him so much and he doesn't have much blood to give so they have to give him a little pick me up sometimes. They upped his oxygen up to 50 but that was most likely needed because of his busy day yesterday with the Fluoroscopy, feeding tube insertion, and arterial line input.
They are going to hold off on feeding for a few days more since he did not take very well to the first go. But he will get there.
Miles is having a good day today. We have had lots of good holding therapy! We can't actually hold him yet but we can gently lay hands on him which provides great comfort to him. Also, some gentle singing and chatting about our Dad is of great comfort.
Medical: his x-ray of abdomen looked normal. Blood gases were a little off and blood count dropped last night so they gave him another little blood transfusion to up the blood. They do this because they stick and poke on him so much and he doesn't have much blood to give so they have to give him a little pick me up sometimes. They upped his oxygen up to 50 but that was most likely needed because of his busy day yesterday with the Fluoroscopy, feeding tube insertion, and arterial line input.
They are going to hold off on feeding for a few days more since he did not take very well to the first go. But he will get there.
Welcome!
Hello All,
Welcome to Miles England Sloan's daily journal of his first few months with us here in this world. The first couple of blogs will be recap and then there will be a daily update so if you want to hear how he is doing, this can be where you check out what is happening!
Thank You for Visiting and Feel Free to Leave A Message for Miles!
Team Sloan (Hoyt, Townes, Miles, Lauren, Porter, and Chow)
Welcome to Miles England Sloan's daily journal of his first few months with us here in this world. The first couple of blogs will be recap and then there will be a daily update so if you want to hear how he is doing, this can be where you check out what is happening!
Thank You for Visiting and Feel Free to Leave A Message for Miles!
Team Sloan (Hoyt, Townes, Miles, Lauren, Porter, and Chow)
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