I just sent this to a mom who is going through the first moments of siugr.
We are 28 months past the hardest time in our life. Miles is amazing. Developmentally on track, catching up on height and weight and is the sweetest child on the planet.
Blessed.
Sunday, September 13, 2015
Saturday, May 17, 2014
Miles Sloan Update May 2014
May 17, 2014
I am not sure if Mom's out there get to this page but if they do then I thought I would write a quick update to give some hope and perspective on how babies born so early can be.
We recently went for Miles 1 year/9m appointment. Is on track for all his adjusted age targets and his measurements are:
HC: 18.25inches - 75% for adjusted age
Weight: 18.2 lbs - 20% for adjusted age
Height: 26.25 inches - 2% for adjusted age
He has caught up a great deal although still a little disproportional but we have faith that this will even out over time. I don't think he is going to be 6'5 but oh well!
He made it through his first flu season without ED visits or hospitalization but LOTS of pediatrician appointments. My pediatrician is right down the road so I basically took him in anytime he had a slight cough sound. At one point he did have some bronchitis and we had to give him albuterol for 2 weeks or so but the Synargis shots did their job it seems.
He has been having PT 2X month and he is developmentally on track for his adjusted age, so that has seemed to help alot.
Most importantly he is the sweetest baby in the world. He sleeps well, eats well and has a very easy-going temperament. Big brother and Miles love each other and play together all the time.
All is well and I will post every once in a while to keep an update for those that find their way to this blog.
I am not sure if Mom's out there get to this page but if they do then I thought I would write a quick update to give some hope and perspective on how babies born so early can be.
We recently went for Miles 1 year/9m appointment. Is on track for all his adjusted age targets and his measurements are:
HC: 18.25inches - 75% for adjusted age
Weight: 18.2 lbs - 20% for adjusted age
Height: 26.25 inches - 2% for adjusted age
He has caught up a great deal although still a little disproportional but we have faith that this will even out over time. I don't think he is going to be 6'5 but oh well!
He made it through his first flu season without ED visits or hospitalization but LOTS of pediatrician appointments. My pediatrician is right down the road so I basically took him in anytime he had a slight cough sound. At one point he did have some bronchitis and we had to give him albuterol for 2 weeks or so but the Synargis shots did their job it seems.
He has been having PT 2X month and he is developmentally on track for his adjusted age, so that has seemed to help alot.
Most importantly he is the sweetest baby in the world. He sleeps well, eats well and has a very easy-going temperament. Big brother and Miles love each other and play together all the time.
All is well and I will post every once in a while to keep an update for those that find their way to this blog.
Saturday, September 14, 2013
Reflection by Mom
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.
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.
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!!!
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