People have asked me as I go back to work: how do you do it? It must be so hard. To them I respond. I don't think about what I don't have anymore very much. It is much more joyful to think about what I do have:
A loving husband. Over the past 6 months, Hoyt and I have gotten into maybe 3 disagreements. The rest has been nothing but pure love. So many people get divorced over an experience like this, it has made us stronger.
Two beautiful sons. Miles is obviously a blessing and miracle but Townes through all of this has been so patient and kind. He makes me laugh almost daily. What a blessing it is to have him as my son.
Family Support. Moms, Dad, Sister and Brothers who have been there with us through all of this. They have been our rocks and we are so blessed to have such a loving family.
A Good Job and Great Team at a Great Company: I get to have the pleasure of working and getting paid well at a company that saves kids like Miles everyday. They gave me 5 months off, 3 months paid to get Miles adjusted. Yes, to be independently wealthy would be AWESOME, but I am so appreciative of the work I do have.
My Health: I have had some bouts with illness over the past several years but in general I am in pretty good health. I am so thankful that God has given this body and soul to live in this world with.
A New Understanding: I was not very religious before this journey but this journey was indescribable and so surreal. The connectedness of each moment was nonsensical. It was like when you see the Rockies for the first time and you are in awe at the beauty and you realize that happenstance could not have created that kind of beauty. I am so blessed to have had an experience that leaves me no choice to believe.
Saturday, September 14, 2013
September 14, 2013 - 7 Weeks Old, Mom Back to Work, Doing Great
September 14, 2013
Well, Mom only as time to write for a few minutes every now and then now that she has gone back to work. I went to the pulmonologist this past week and they are trying me off of the oxygen! I have to be on another monitor for 24 hours to make sure everything is ok but if so, no more oxygen!
Latest update overall:
Weight: 10lbs 3oz
Height: 21 inches
HC: 15.5 inches
Still on the monitor but that is ok and now off of oxygen for the time being.
Developmentally: The state offers a free service for all babies who were born medically fragile like me. They will send a physical therapist evaluator to your home to determine if I need services and if so, the services are provided at your house at a very low rate. The good news is that I am developmentally on track for my adjusted age. They track my development from my due date until I am 2. I am a little behind in my fine motor skills but everything else looked aok!
Sleeping: I have not graced my parents with more than 5 hours of sleep yet but I find that generous. I still have some reflux and gas issues so that keeps them up at night.
Mom went back to work and things are crazy. Two kids I guess is a lot more difficult to one. Everything is on a strict schedule. Bath time, dinner time, story time, all have to be in sync so that the house can go to bed by 930pm.
We have been doing lots of fun things on the weekends though. Lots of hiking. I have already been on 3 hikes! Lots of cooking and then of course lots of hanging out with the neighbors.
Life overall is pretty great for Team Sloan!
Well, Mom only as time to write for a few minutes every now and then now that she has gone back to work. I went to the pulmonologist this past week and they are trying me off of the oxygen! I have to be on another monitor for 24 hours to make sure everything is ok but if so, no more oxygen!
Latest update overall:
Weight: 10lbs 3oz
Height: 21 inches
HC: 15.5 inches
Still on the monitor but that is ok and now off of oxygen for the time being.
Developmentally: The state offers a free service for all babies who were born medically fragile like me. They will send a physical therapist evaluator to your home to determine if I need services and if so, the services are provided at your house at a very low rate. The good news is that I am developmentally on track for my adjusted age. They track my development from my due date until I am 2. I am a little behind in my fine motor skills but everything else looked aok!
Sleeping: I have not graced my parents with more than 5 hours of sleep yet but I find that generous. I still have some reflux and gas issues so that keeps them up at night.
Mom went back to work and things are crazy. Two kids I guess is a lot more difficult to one. Everything is on a strict schedule. Bath time, dinner time, story time, all have to be in sync so that the house can go to bed by 930pm.
We have been doing lots of fun things on the weekends though. Lots of hiking. I have already been on 3 hikes! Lots of cooking and then of course lots of hanging out with the neighbors.
Life overall is pretty great for Team Sloan!
Tuesday, August 20, 2013
August 20, 2013 - 2.5 Weeks Home and Doing Great!
August 20, 2013
This could be a long post. We finally came home on August 2, 2013. Final Stats:
98 Days in NICU
Birth Date: April 27, 2013
Due Date: July 23, 2013
Discharge Date: August 2nd, 2013
Birth Weight: 650g, 1lb, 70z
Discharge Weight: 2430g, 5lb and 5oz
Birth Height: 12 inches
Discharge Height: 17 inches
Complications:
In the last couple of weeks, the final push seemed unbearable. Hoyt and I traded off staying at the hospital for the last 2 weeks, working on getting little bit to gain weight, take all his feeds by bottle and get ready to go home.
There were a couple of setbacks at the end...they took him off the vent for a couple of days and thought he was going to be able to make it home without any support but after 4 days he got really tired from the feeding and growing and started to struggle a bit so they put him back on the low flow cannula and I was devastated. I thought we were never going home but the next day the doctor assured me that we were still set for the next week going home but we should plan to go home on a monitor and oxygen. That was fine with me. It just meant that he could slow down a bit, get bigger and in time get off everything when he was absolutely 100% better.
Then, we were all set to go home on Wednesday. We had been staying at the hospital for two weeks. Switching sleeping there and that was a nightmare. No sleep whatsoever. The nurses check vitals every 3 hours and that wakes up Miles and then it takes him an hour to get back to sleep and then takes you another 30 minutes after that and so you get an hour here and there. Needless to say we were really tired and frustrated that we were still in the hospital. Then on Wednesday morning the doctor said that they couldn't let him leave because he was having bradycardia episodes (drops in his heart rate). He had been having these for weeks but they had not studies them to find out what the problem was which was around feeding - he was having reflux and was not fully coordinated with his feedings, so he would not breathe and eat too much and then drop his heart rate.
So, they put him on a special monitor that monitors the drops in heart rates to make sure that there was nothing out of the ordinary i.e. not feeding/reflux related. He had to be on this monitor for 48 hours before we could go home. He sailed through that.
This could be a long post. We finally came home on August 2, 2013. Final Stats:
98 Days in NICU
Birth Date: April 27, 2013
Due Date: July 23, 2013
Discharge Date: August 2nd, 2013
Birth Weight: 650g, 1lb, 70z
Discharge Weight: 2430g, 5lb and 5oz
Birth Height: 12 inches
Discharge Height: 17 inches
Complications:
- Chronic Lung Disease - 35 days on vent, 40 days on CPAP, 7 Days on High Flow Cannula, 10 days on low flow cannula, 4 days off all support, tired out and so went home on 100ml of oxygen through low flow cannula
- 10-15 blood transfusions
- 3 rounds of antibiotics
- Low Thyroid so put on Synthroid
- No brain bleed, no infections, no NEC, no ROP (stage 0 both eyes)
In the last couple of weeks, the final push seemed unbearable. Hoyt and I traded off staying at the hospital for the last 2 weeks, working on getting little bit to gain weight, take all his feeds by bottle and get ready to go home.
There were a couple of setbacks at the end...they took him off the vent for a couple of days and thought he was going to be able to make it home without any support but after 4 days he got really tired from the feeding and growing and started to struggle a bit so they put him back on the low flow cannula and I was devastated. I thought we were never going home but the next day the doctor assured me that we were still set for the next week going home but we should plan to go home on a monitor and oxygen. That was fine with me. It just meant that he could slow down a bit, get bigger and in time get off everything when he was absolutely 100% better.
Then, we were all set to go home on Wednesday. We had been staying at the hospital for two weeks. Switching sleeping there and that was a nightmare. No sleep whatsoever. The nurses check vitals every 3 hours and that wakes up Miles and then it takes him an hour to get back to sleep and then takes you another 30 minutes after that and so you get an hour here and there. Needless to say we were really tired and frustrated that we were still in the hospital. Then on Wednesday morning the doctor said that they couldn't let him leave because he was having bradycardia episodes (drops in his heart rate). He had been having these for weeks but they had not studies them to find out what the problem was which was around feeding - he was having reflux and was not fully coordinated with his feedings, so he would not breathe and eat too much and then drop his heart rate.
So, they put him on a special monitor that monitors the drops in heart rates to make sure that there was nothing out of the ordinary i.e. not feeding/reflux related. He had to be on this monitor for 48 hours before we could go home. He sailed through that.
Saturday, July 27, 2013
July 27, 2013 - we are going home on Wednesday!
July 27
They have given us our home date! This Wednesday! Woo hoo! It did not come without a little bit of drama, of course!
We were moved to the discharge unit about 10 days ago to work on feeding, growing, and weening off his respiratory support. Last Monday they took him off all oxygen and he did pretty good for about 3 days and then Thursday night he really started to struggle. Basically, they see this happen with kiddos who have had such bad lung issues. He does not have a lot of reserve so if he gets really tired then his breathing is the first thing to go.
It was very disappointing. It felt like a huge setback but as we do we looked at the brighter side of things. The doctor on Friday said that he will go home on oxygen and need it for a few months which is a good thing to prepare for and feels better because we will not push him to be 100% better by the time he comes home. He can heal slowly in the comfort of our home.
He is also not completely eating on his own yet. In the last 24hours he has started to take full feeds by bottle and 50% of his feed from breast but this could take another week or two to get fully going so they will send us home on an ng tube until he has mastered feeding and growing! Hopefully in next two weeks.
He is up to 4lbs and 11oz!!! He is 3.5x bigger than his birth weight. Hard to believe.
They have given us our home date! This Wednesday! Woo hoo! It did not come without a little bit of drama, of course!
We were moved to the discharge unit about 10 days ago to work on feeding, growing, and weening off his respiratory support. Last Monday they took him off all oxygen and he did pretty good for about 3 days and then Thursday night he really started to struggle. Basically, they see this happen with kiddos who have had such bad lung issues. He does not have a lot of reserve so if he gets really tired then his breathing is the first thing to go.
It was very disappointing. It felt like a huge setback but as we do we looked at the brighter side of things. The doctor on Friday said that he will go home on oxygen and need it for a few months which is a good thing to prepare for and feels better because we will not push him to be 100% better by the time he comes home. He can heal slowly in the comfort of our home.
He is also not completely eating on his own yet. In the last 24hours he has started to take full feeds by bottle and 50% of his feed from breast but this could take another week or two to get fully going so they will send us home on an ng tube until he has mastered feeding and growing! Hopefully in next two weeks.
He is up to 4lbs and 11oz!!! He is 3.5x bigger than his birth weight. Hard to believe.
Wednesday, July 10, 2013
July 10, 2013 - Growing, growing, growing strong
July 10, 2013
Well, the last few weeks have been great! I have been growing, growing, growing and the end is in sight!
Growth: I weigh 3lbs 8oz!!! I have almost tripled in size from when I came. As my Mom says - I am huge! I still need to gain another 1/2 pound to be taken out of the isolette but I really have some fat on me now. The weight gain is my biggest challenge because of the IUGR issue which means I was 1/2 the size of a normal baby at 27 weeks and the docs say it will actually take about 2 years for me to really catch up. Every night the night nurse texts Mom and Dad my weight in the middle of the night so they can keep up with it on a real time basis. It is always the biggest news of the day. I have to be able to continuously gain weight to be able to go home, so no more days of dropping a few grams, just an upward trend. It has gotten a lot better over the last couple of weeks.
Respiratory: I am on the last type of support for my lungs called a low-flow cannula. I went off the CPAP last week and did beautifully. Great heart rate, great oxygen saturation. I stayed on the high flow cannula for 6 days and then they moved me onto to this type of support. I have struggled a little for the last 24 hours on this support with some minor drops in my stats but overall good.
Feeding: I started taking Mom's milk via a bottle the last 2 days and have been doing great. I am eating from a bottle 2Xday and the speech therapist comes in to watch how my "suck, swallow, breathe" reflex is going. My problem is that I get so excited that I drink really fast and forget to breathe. I reflux and my heart rate drops but I usually can self recover. This skill is challenging but I am getting there.
Developmental: I am officially acting like a newborn. I cry when I am hungry, have a dirty diaper, or am over tired but every little thing does not send me spinning anymore. I can handle diaper changes although I still hate to get my temperature checked. I LOVE being held and could snuggle with Mom and Dad all day - I can't wait to get home.
So the question of the day is, when will I get home????
Well, it is hard to put a date on it although for sure by August. I have to be able to regulate my own temperature (so need to be at least 4lbs), I need to be able to take all my feeds via bottle and be able to gain weight regularly. I need to not have episodes where I forget to breathe (oops) and ideally I am off all respiratory support. That is a lot for me to put together but I am pretty awesome so I would like to be able to do it the next 3 weeks - everyone pray for home by August 1st!!!
Well, the last few weeks have been great! I have been growing, growing, growing and the end is in sight!
Growth: I weigh 3lbs 8oz!!! I have almost tripled in size from when I came. As my Mom says - I am huge! I still need to gain another 1/2 pound to be taken out of the isolette but I really have some fat on me now. The weight gain is my biggest challenge because of the IUGR issue which means I was 1/2 the size of a normal baby at 27 weeks and the docs say it will actually take about 2 years for me to really catch up. Every night the night nurse texts Mom and Dad my weight in the middle of the night so they can keep up with it on a real time basis. It is always the biggest news of the day. I have to be able to continuously gain weight to be able to go home, so no more days of dropping a few grams, just an upward trend. It has gotten a lot better over the last couple of weeks.
Respiratory: I am on the last type of support for my lungs called a low-flow cannula. I went off the CPAP last week and did beautifully. Great heart rate, great oxygen saturation. I stayed on the high flow cannula for 6 days and then they moved me onto to this type of support. I have struggled a little for the last 24 hours on this support with some minor drops in my stats but overall good.
Feeding: I started taking Mom's milk via a bottle the last 2 days and have been doing great. I am eating from a bottle 2Xday and the speech therapist comes in to watch how my "suck, swallow, breathe" reflex is going. My problem is that I get so excited that I drink really fast and forget to breathe. I reflux and my heart rate drops but I usually can self recover. This skill is challenging but I am getting there.
Developmental: I am officially acting like a newborn. I cry when I am hungry, have a dirty diaper, or am over tired but every little thing does not send me spinning anymore. I can handle diaper changes although I still hate to get my temperature checked. I LOVE being held and could snuggle with Mom and Dad all day - I can't wait to get home.
So the question of the day is, when will I get home????
Well, it is hard to put a date on it although for sure by August. I have to be able to regulate my own temperature (so need to be at least 4lbs), I need to be able to take all my feeds via bottle and be able to gain weight regularly. I need to not have episodes where I forget to breathe (oops) and ideally I am off all respiratory support. That is a lot for me to put together but I am pretty awesome so I would like to be able to do it the next 3 weeks - everyone pray for home by August 1st!!!
Tuesday, June 25, 2013
June 25, 2013
June 25, 2013
There has not been a great deal that has changed over the past week. I am just trying to get bigger and everything else is on hold as that happens.
Respiratory: I am still on CPAP but hopefully moving onto high flow oxygen later in the week or beginning of next week. My lungs look good though and they are keeping me on it because there is no real reason to get me off since I still have so much more growing to do.
Feeding: They have gone up significant amounts on my feeding as I gain weight. Still fortifying with the safflower oil but outside of that eating away. Next week will probably be the beginning of trying oral feeding (first by bottle and then in 2-3 weeks trying straight from the source!)
Growth: I am a whopping 1280grams or 2lb and 11oz! I have officially doubled in size and approaching the 3lb mark. The biggest issue I have is that it is a %of weight calculation that can predict how much I will gain. So, for example, I should gain about 1.6% of my total weight daily which is about 20g/day. If I was 2000grams it would be more like 30grams/day so I grow slower because I am smaller. Darn!
Developmentally: I am really acting like a baby now though. I cry when I am hungry. I look around and love here my Mom and Dad's voices. I am learning to self soothe and learning to take my pacifier. I even will get to start wearing clothes this week.
Overall, doing well and getting better.
There has not been a great deal that has changed over the past week. I am just trying to get bigger and everything else is on hold as that happens.
Respiratory: I am still on CPAP but hopefully moving onto high flow oxygen later in the week or beginning of next week. My lungs look good though and they are keeping me on it because there is no real reason to get me off since I still have so much more growing to do.
Feeding: They have gone up significant amounts on my feeding as I gain weight. Still fortifying with the safflower oil but outside of that eating away. Next week will probably be the beginning of trying oral feeding (first by bottle and then in 2-3 weeks trying straight from the source!)
Growth: I am a whopping 1280grams or 2lb and 11oz! I have officially doubled in size and approaching the 3lb mark. The biggest issue I have is that it is a %of weight calculation that can predict how much I will gain. So, for example, I should gain about 1.6% of my total weight daily which is about 20g/day. If I was 2000grams it would be more like 30grams/day so I grow slower because I am smaller. Darn!
Developmentally: I am really acting like a baby now though. I cry when I am hungry. I look around and love here my Mom and Dad's voices. I am learning to self soothe and learning to take my pacifier. I even will get to start wearing clothes this week.
Overall, doing well and getting better.
Monday, June 17, 2013
June 17, 2013 - eye exam, blood transfusion, and weening off of CPAP - oh my!
June 17, 2013
Well, after a week of relaxing and my only job was to grow, they started off with a bang!
Growth: I was up to 1.12kg two days ago and I dropped back down last night to 1.1kg but the dietician is happy because over the week I increased a really good amount from 0.96 to 1.1kg - almost 140 grams! That is a lot for little me.
Respiratory: they have not been working on my lungs of late to focus on my weight so today they weaned me off a little more of the CPAP. They want to get me on the next phase of support (nasal cannula) by the end of the week. From there it is just a few weeks from tube free!
Eyes: the latest check they are doing is on my eyes. The oxygen helps me but is also dangerous for my eyes. There is danger of ROP and they check my eyes to make sure I have not developed this condition. They have conducted a few exams and nothing too concerning so far but my eyes are still not developed enough to completely rule out the issue.
Feeding: they are giving me the max calories a day and I am tolerating that well. I can't start oral feeding though until I get off of the CPAP machine. So cross your fingers I tolerate that well.
Besides all that I had to get one more blood transfusion because my blood count was low. I hope that is the last one! Oh and as you might know mom was diagnosed with hyperthyroidism during pregnancy due to a toxic nodule in her thyroid. My thyroid is a little off now and so they are checking me out for any issues
Well, after a week of relaxing and my only job was to grow, they started off with a bang!
Growth: I was up to 1.12kg two days ago and I dropped back down last night to 1.1kg but the dietician is happy because over the week I increased a really good amount from 0.96 to 1.1kg - almost 140 grams! That is a lot for little me.
Respiratory: they have not been working on my lungs of late to focus on my weight so today they weaned me off a little more of the CPAP. They want to get me on the next phase of support (nasal cannula) by the end of the week. From there it is just a few weeks from tube free!
Eyes: the latest check they are doing is on my eyes. The oxygen helps me but is also dangerous for my eyes. There is danger of ROP and they check my eyes to make sure I have not developed this condition. They have conducted a few exams and nothing too concerning so far but my eyes are still not developed enough to completely rule out the issue.
Feeding: they are giving me the max calories a day and I am tolerating that well. I can't start oral feeding though until I get off of the CPAP machine. So cross your fingers I tolerate that well.
Besides all that I had to get one more blood transfusion because my blood count was low. I hope that is the last one! Oh and as you might know mom was diagnosed with hyperthyroidism during pregnancy due to a toxic nodule in her thyroid. My thyroid is a little off now and so they are checking me out for any issues
Thursday, June 13, 2013
June 13 - day 45 wow!
June 13, 2013
Wow! I can't believe I have been here for 45 days. That at is a long time to be in the hospital! I probably have another good 40 to go :-( I wish I was in mommys tummy instead but cest la vie!
Respiratory wise nothing has changed because they are keeping me on basic oxygen so I can focus in getting bigger which has been a bit of a challenge. I have not gained very much weight in the last 10 days and this is frustrating for everyone. We tried switching me to hind milk which is the last hall of the milk mom pumps which supposedly has more calories...my weight shot up for 2 days and then fell right back down bit that was in a day where I was Really fussy so I could have just burned off more calories that day-the littlest thing can set me off.
So keep praying that I gain weight because that is the key to my success right now.
On a positive note, everything else is going well!
Wow! I can't believe I have been here for 45 days. That at is a long time to be in the hospital! I probably have another good 40 to go :-( I wish I was in mommys tummy instead but cest la vie!
Respiratory wise nothing has changed because they are keeping me on basic oxygen so I can focus in getting bigger which has been a bit of a challenge. I have not gained very much weight in the last 10 days and this is frustrating for everyone. We tried switching me to hind milk which is the last hall of the milk mom pumps which supposedly has more calories...my weight shot up for 2 days and then fell right back down bit that was in a day where I was Really fussy so I could have just burned off more calories that day-the littlest thing can set me off.
So keep praying that I gain weight because that is the key to my success right now.
On a positive note, everything else is going well!
Saturday, June 8, 2013
June 8, 2013 - Stepping Down...
June 8, 2013
Well, it has been an eventful week. The big event was that I moved out of the Main ICU to what they call the "step-down" unit. There are three units Unit A, the Step-Down Unit, and Unit B (the unit where I will eventually get to go home out of). This is a big graduation. It means that I am pretty stable. Closer to going home.
Respiratory: I am on CPAP for oxygen support but on very low settings. They are not pushing me very hard to get off this machine because it is non-invasive and they want me to focus on growing at this point as the critical step not as much on my lungs - I guess that is a good thing??
Feeding: They had to add safflower oil to my diet - yep, shots of pure fat. They are desperate it seems but I will not complain because I know one day, I will wish fat was a little easier to hide.
Growth: I am still at 0.99KG - I have bounced a great deal this week between 0.94-1.0KG. My doctor assures me that this is normal and that all of the sudden I will start packing on the pounds.I will believe it when I see it.
Development: I am working with my pacifier right now. This is a particularly good device for me because I need to practice sucking for future feeding needs.
Also, I am kangarooing like crazy. So fun!
Well, it has been an eventful week. The big event was that I moved out of the Main ICU to what they call the "step-down" unit. There are three units Unit A, the Step-Down Unit, and Unit B (the unit where I will eventually get to go home out of). This is a big graduation. It means that I am pretty stable. Closer to going home.
Respiratory: I am on CPAP for oxygen support but on very low settings. They are not pushing me very hard to get off this machine because it is non-invasive and they want me to focus on growing at this point as the critical step not as much on my lungs - I guess that is a good thing??
Feeding: They had to add safflower oil to my diet - yep, shots of pure fat. They are desperate it seems but I will not complain because I know one day, I will wish fat was a little easier to hide.
Growth: I am still at 0.99KG - I have bounced a great deal this week between 0.94-1.0KG. My doctor assures me that this is normal and that all of the sudden I will start packing on the pounds.I will believe it when I see it.
Development: I am working with my pacifier right now. This is a particularly good device for me because I need to practice sucking for future feeding needs.
Also, I am kangarooing like crazy. So fun!
Saturday, June 1, 2013
June 1, 2013 - Pacifier, crying for food, etc.
June 1, 2013
The last couple of days were really good. I am still off of my vent and doing much better without the tube down my throat...happiness. My oxygen is stabler, I am eating like crazy and in general feel much better.
Respiratory: As I said, I am now permanently off the vent. There is still some fluid in my lungs so they are going to give me a bit more lasix to help clear up my lungs. But so far so good.
Feeding: I now cry when I am hungry and am at ease after I eat. Which needs to be every 2.5 hours. I am up to 24cal/feed which is great. They have intoduced a pacifier during feeding times so that I start associating sucking with feeding times. To start prepping me for a bottle (about 3 weeks from now). I can't have a bottle until gestational week 34.
Growth: Still slow growth. Up to 0.96 KG or 2.1 lbs. Need to get up to 4 to be able to go home. So need to start packing on the pounds.
Mom and I are up to 3 hours of kangaroo time but it is now frustrating to not just be able to be held all the time. Hopefully, soon we will be able to snuggle more and more.
That is the excitement of the last couple of days. Hope all is well with you.
The last couple of days were really good. I am still off of my vent and doing much better without the tube down my throat...happiness. My oxygen is stabler, I am eating like crazy and in general feel much better.
Respiratory: As I said, I am now permanently off the vent. There is still some fluid in my lungs so they are going to give me a bit more lasix to help clear up my lungs. But so far so good.
Feeding: I now cry when I am hungry and am at ease after I eat. Which needs to be every 2.5 hours. I am up to 24cal/feed which is great. They have intoduced a pacifier during feeding times so that I start associating sucking with feeding times. To start prepping me for a bottle (about 3 weeks from now). I can't have a bottle until gestational week 34.
Growth: Still slow growth. Up to 0.96 KG or 2.1 lbs. Need to get up to 4 to be able to go home. So need to start packing on the pounds.
Mom and I are up to 3 hours of kangaroo time but it is now frustrating to not just be able to be held all the time. Hopefully, soon we will be able to snuggle more and more.
That is the excitement of the last couple of days. Hope all is well with you.
Wednesday, May 29, 2013
May 29 - Off the Vent!
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!!!
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!!!
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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