Turkey, little man and I took off for Denver the middle of December. We planned on staying 2 weeks. James had to work but was able to get Christmas off to fly down and be with us. My folks drove over and met us there to help me with the kids.
Little man and me were at the hospital from 7-7 everyday. We originally went down for allergy testing. After getting looked at and going everything they decided he needed to be seen by a neurologist, gastroenterologist, pulmonologist, immunologist, ENT and the allergist.
Little man was scoped on both ends and had a pH probe placed. When they scoped him the took biopsies to check for various things. The pH probe was placed through his nose and it went down into his stomach. It monitored the acid reflux and how often it happen. He had to keep the probe in his nose for 24 hours. In that 24 hour period he had over 70 reflux moments that went at least throat high. That was also while he was on massive doses of reflux medicine.
He had about every test under the sun done. He did a swallow study which showed he doesn't swallow right and is high risk for liquids to go into his lungs. They did a chest x-ray and found scarring from aspirating stomach acid and formula. They also found out he has asthma. He doesn't talk or make a whole lot of noise so they checked his vocal cords. That test was positive! His vocal cords work great and have no damage. He had an EEG done which came back normal, his seizures are still unexplained but that means he might be able to grow out of them. They did a emptying study to see how fast his stomach drains. On a liquid diet a baby his age should have about 1/2 their stomach drain in 60 minutes, little mans stomach drained by 1/2 in 182 minutes.
He has what is called delayed gastric emptying. He eats and his formula just sits in his stomach. He never cried when he was hungry so I always fed him every 3-4 hours and he always slept. He was rocking 5+ naps a day and sleeping through the night. His stomach was always full.
We went through skin testing for some allergies and even a few food challenges. When we left Denver he was approved to eat: sweet potatoes, white potatoes, carrots, apples, rice, peas, and pears.
After many meetings and tests we sat down with the GI doctor and the lung doctor. Because of the damage to little mans lungs something needed to be done. His GI doctor suggested a Nissen fundoplication and a G tube.
The Nissen is where the surgeon goes in and tightens the top of the stomach to help stop/reduce the reflux. Little mans stomach never really closed on the top. Then they would put in a G tube to help with gas and if he eats to much because of the delayed emptying. We decided it was the best choice and we did the surgery.
Everything went well with the surgery and he came home two days later. By this time we had been in Denver well over a month. In the months time we had found out so much about little mans health.
He has some protein issues that make it so he is unable to ate meats. He is a grain free vegan at this point in his life.
We have to go back this summer for more testing and follow ups. They will redo his biopsies to see if anything has changed. He will go do more allergy testing and hopefully be able to add more foods to his list!
Denver changed our lives and little mans quality of life. He is now up to 12 foods he can safely eat, he is able to play with other children, he has started saying mum and hi, he has been able to get rid of majority of his medications! He does have a feeding pump to help him get what he needs in calories everyday. After his surgery he has had some struggles with eating but we expected that.
Our lives are becoming more normal. He has become quite a monkey who likes to climb and attack Turkey. He thinks she is the best big sister a boy could ask for. Turkey has been through so much with little man being sick and she has been a trooper! She loves that my mom comes and spends time with her and I find time to sneak away for special dates.
I think I am caught up on all that has happened in the last 18 months of our lives.
Wednesday, April 10, 2013
The bumps in our road
Once we brought little man home he was growing and doing awesome! We had been out 2 weeks when everything changed. I noticed his diapers were not normal and had bits of blood in them. I went from having an alert baby to a baby that was lethargic and non responsive. We rushed him up the the ER where they started IVs and ran tons of tests. His iron levels were extremely low and he was allergic to cows milk. I was breastfeeding him and he also had fortified bottles to add some extra calories. I stopped drinking and eating anything that had cows milk and we switch formulas. He spent several days in the NICU until his iron levels went up a little.
He was put on a hypoallergenic formula since he had issues with others. After we got out of the hospital again we spent 3 more weeks at my folks before we headed home. Our normal 2 day trip back to North Dakota took 3 days. Day 2 of our trip little mans oxygen monitor stopped working. Luckily we were able to find a place to get a new one. Traveling without a monitor is scary. Because of the altitude changes he needed more oxygen.
Once we made it home we had to get back into our routines and get Turkey back in school. I have some amazing friends up here. I had friends bring us dinners, some helped clean, some helped with Turkey, and some helped my sanity. A good friend of mine has a son who is a NICU baby. She would come over and just talk and help. I was still having some health issues and had appointments where I couldn't bring little man. She was always there to watch him for me.
Two weeks after being home we had another scare. It was a Friday afternoon and I took little man into the doctor because something wasn't right. The doctor thought he might just be getting a cold and to keep an eye on him. By Saturday morning he was completely limp, like scary limp. I rushed him to the ER where they did an emergency blood transfusion. His poor little body couldn't keep up with making enough blood. He had half what he should of had. We found out he had also started bleeding in his intestines and bowels. After many tests he was officially diagnosed with acid reflux/GERD and severe allergies. We found out he was allergic to milk, soy, and eggs. My breast milk was destroying my little man. I was eating only veggies and rice when I had to quit breastfeeding him. My health started to suffer because I wasn't able to eat much.
The doctors put him on a prescription elemental formula. After his blood transfusion he was taken off oxygen and started to grow. They did blood draws often to make sure his levels were staying up. He still struggles with his iron levels.
We spent lots of time in doctors offices. It was an exciting day if we made it a week without going to the ER or doctor. He was hospitalized for pneumonia in January. He went back on oxygen for a little while with that. It just seemed never ending.
He finally started to do well once spring came around. The end of April we introduced him to his first food, bananas. He seemed to like them at first.
The beginning of May came around and little man started having seizures. He would be hanging out playing on the floor and start to shake. Turkey noticed it one day while playing next to him. He had a seizure in my arms while I was feeding him one afternoon. After that the doctors started him on seizure medication to help control them.
After starting his new medicine we had to travel back to Utah for follow ups and to celebrate my Poppas 90th birthday. The kids went to their first baseball games and we had a great time with family. It was nice to get away from doctors.
We spent the summer visiting family and enjoying the gorgeous weather. After we had finished up our travels for the summer little man had surgery to put tubes in his ears. He has chronic ear infections and just couldn't kick it. It was amazing after the surgery to watch him. Before the surgery they did a hearing test and told me he might be deaf. We found out his ear drums worked but he just couldn't hear. A few days after his surgery we went to church, it was amazing to watch his face light up when he heard the piano for the first time. Every sound was new to him. It was amazing how much of a difference two little tubes made.
Little man started new foods and everything we tried ended badly. He started breaking out in hives, blisters, or rash every time he had foods. We stopped trying new foods and stuck to formula until we could get answers.
Turkey spent her summer doing summer camps and T-ball! She loved all the activities that our small town has during the summer. She would rather be outside playing then home.
In the fall Turkey started kindergarten. It was lonely at home, little man and me missed her. She loves school! She is in a private school and keeps pretty busy.
Little man spent most of the fall sick with one thing or another. Our doctors agreed he needed to be seen by specialist somewhere else. We got the call the week before Thanksgiving that we were headed to Denver.
He was put on a hypoallergenic formula since he had issues with others. After we got out of the hospital again we spent 3 more weeks at my folks before we headed home. Our normal 2 day trip back to North Dakota took 3 days. Day 2 of our trip little mans oxygen monitor stopped working. Luckily we were able to find a place to get a new one. Traveling without a monitor is scary. Because of the altitude changes he needed more oxygen.
Once we made it home we had to get back into our routines and get Turkey back in school. I have some amazing friends up here. I had friends bring us dinners, some helped clean, some helped with Turkey, and some helped my sanity. A good friend of mine has a son who is a NICU baby. She would come over and just talk and help. I was still having some health issues and had appointments where I couldn't bring little man. She was always there to watch him for me.
Two weeks after being home we had another scare. It was a Friday afternoon and I took little man into the doctor because something wasn't right. The doctor thought he might just be getting a cold and to keep an eye on him. By Saturday morning he was completely limp, like scary limp. I rushed him to the ER where they did an emergency blood transfusion. His poor little body couldn't keep up with making enough blood. He had half what he should of had. We found out he had also started bleeding in his intestines and bowels. After many tests he was officially diagnosed with acid reflux/GERD and severe allergies. We found out he was allergic to milk, soy, and eggs. My breast milk was destroying my little man. I was eating only veggies and rice when I had to quit breastfeeding him. My health started to suffer because I wasn't able to eat much.
The doctors put him on a prescription elemental formula. After his blood transfusion he was taken off oxygen and started to grow. They did blood draws often to make sure his levels were staying up. He still struggles with his iron levels.
We spent lots of time in doctors offices. It was an exciting day if we made it a week without going to the ER or doctor. He was hospitalized for pneumonia in January. He went back on oxygen for a little while with that. It just seemed never ending.
He finally started to do well once spring came around. The end of April we introduced him to his first food, bananas. He seemed to like them at first.
The beginning of May came around and little man started having seizures. He would be hanging out playing on the floor and start to shake. Turkey noticed it one day while playing next to him. He had a seizure in my arms while I was feeding him one afternoon. After that the doctors started him on seizure medication to help control them.
After starting his new medicine we had to travel back to Utah for follow ups and to celebrate my Poppas 90th birthday. The kids went to their first baseball games and we had a great time with family. It was nice to get away from doctors.
We spent the summer visiting family and enjoying the gorgeous weather. After we had finished up our travels for the summer little man had surgery to put tubes in his ears. He has chronic ear infections and just couldn't kick it. It was amazing after the surgery to watch him. Before the surgery they did a hearing test and told me he might be deaf. We found out his ear drums worked but he just couldn't hear. A few days after his surgery we went to church, it was amazing to watch his face light up when he heard the piano for the first time. Every sound was new to him. It was amazing how much of a difference two little tubes made.
Little man started new foods and everything we tried ended badly. He started breaking out in hives, blisters, or rash every time he had foods. We stopped trying new foods and stuck to formula until we could get answers.
Turkey spent her summer doing summer camps and T-ball! She loved all the activities that our small town has during the summer. She would rather be outside playing then home.
In the fall Turkey started kindergarten. It was lonely at home, little man and me missed her. She loves school! She is in a private school and keeps pretty busy.
Little man spent most of the fall sick with one thing or another. Our doctors agreed he needed to be seen by specialist somewhere else. We got the call the week before Thanksgiving that we were headed to Denver.
The long road that ended with the best miracle
I spent 4 weeks in the hospital on strict bed rest. I was only allowed to get out of bed to go to the restroom. It was one of the hardest thing I have had to do. My family would come down and visit me everyday and bring me a treat or a magazine to read. My sanity was tested daily. I think that if I didn't have the nurses that I did that I wouldn't have done so well. We referred to my room as more of a jail cell then a hospital room. After the first week one of my doctors decided that it would be best if I went for daily wheelchair rides and went outside once a week. My first visit outside was amazing. It made me appreciate the simple things in life. I loved how the sun felt on my legs and how great the fresh air smelled. I could have sat out in the sun for hours.
Every week I went to a Fetal Medicine appointment where they measured the amount of amniotic fluid I had and monitored the baby. Every day we would monitor the baby in the morning and the evening. I had my blood drawn damn near every morning. I found out how crappy my veins were. When they found a good vein they would take blood from it about 8 times before it would blow. My days were filled with doctors and nurses coming and going. Every morning the doctors would stop by and check on me. I had weekly visits from social work, dietitians, physical therapy, child and family life, and a few others that I can't remember at this time.
I felt so unprepared for everything. I hadn't been able to put together my babies nursery or get anything ready. There was a lot of unknown that I was facing. I had one social worker who understood this and made sure I was prepared for anything. I took tours of the NICU and saw babies that were perfectly healthy and were there to grow, I also saw babies that were not healthy and fighting to live. It was heart breaking at times. But it prepared me for things to come. I was able to see what a ventilator looked like, how the feeding tubes worked and how they did IVs on such tiny babies. My social worker would let me sit and talk to the babies and just take it in.
I went into labor several times a week. Sometimes I ended up in Labor & Delivery and other times I stayed in my room. It just depended on how my contractions went. I would make goals some times they were just to make it to tomorrow. I love the show Greys Anatomy, one of my goals was to make it to Thursday so I could watch it. Sometimes my goals were to make it until a certain nurse worked. It helped time go by.
My very best friend Kami would come visit me every week and bring lunch from different yummy places around town. A few times she got to hang out with me in L&D. I think she learned the hospital pretty well.
Closer to the end of my pregnancy I was done. I remember telling my doctor that I was done. My body hurt.
I knew it was time on Friday night. I started to feel horrible. By Saturday my stomach was sore to the point that I couldn't have a sheet on me or even my gown. I was miserable and knew something wasn't right. My nurse came in at one point and knew it was time. They did some blood work and my white count was raised. I had started to get an infection. They induced me at 3 am Sunday morning.
I waited until I was completely hooked up and we knew it was for real before calling James and my parents. James had to drive 13+ hours to get to me. My mom came down and was with me until James arrived that night.
Every contraction was horrific because of the pain I had in my stomach. Things were better after I got my epidural. I slept on and off all day. One thing I remember about that day was how we described James to the nurses. We let them know that my husband was on his way and was a panicked grizzly bear. When he finally arrived they didn't even question who he was!
My nurse the evening before I had my sweet boy was the same nurse that helped me the first night I was there. She remembered who I was.
My sweet boy was delivered the next morning at 10:18am. He weighed 4 lbs 15 oz and was 18 inches long.
He came out and made a little noise and was placed on my belly while James cut the cord. He was quickly taken away to be attended to by the NICU staff. He had to be resuscitated and then put on a ventilator to help him breath.
I was taken back to my room and James was shown to the NICU to be with our little boy. Our family came down to see us all afternoon. I wasn't able to go see my little boy until that night. It is a very hard thing to not be able to see your baby. Everyone had been able to see him but me. I struggled emotionally after having him. I just wanted to be with him. Once I was able to be in the NICU with him I spent my days there.
He had his ventilator for only 2 days! That was the best thing to come into see him and the ventilator be gone. He had his ups and downs in the weeks that he was in the NICU.
I stayed in the hospital for 2 weeks before moving to a guest house. I was incredibly hard for me to leave the hospital even just to go grab food. I also did not have very much strength. After spending a month in bed my muscles were gone and I wore out fast. It took everything out of me to walk from my room to the NICU. The first week, maybe longer, I walked with a wheelchair so I had somewhere to sit. Once I moved into the guest house I would walk over every morning and spend the entire day in the NICU. I only left when Turkey and my mom came to visit. I spent one night away at my folks house and cried the entire time.
For our little boy to come home he had to be able to eat every 3 hrs without struggling and without drops on his oxygen. He was a big fan of freaking us out, he would start eating then forget to breath. That was some of my scariest moments. I would be feeding him and look up and his stats dropping and he would go limp. Once he made it 7 days from the last apnea moment he could come home as long as he passed everything else.
The day they told me he might be coming home I had some massive panic attacks. Was I ready to bring home my tiny baby? What if something happened? The hospital was my bubble and safe zone. Leaving was scary.
My mom dropped Turkey off at school that morning and came down and we spent 3 hours shopping for everything we needed to bring him home. Everything I had for him was at my house 13+ hours away. We had to by a special car seat that was made for a baby that was small. The nurses were sweet and gave me a list of things we might need.
The day he came home was unreal. It felt like a dream. I dressed him in a super tiny three piece outfit. It was baby blue with a striped onesie and a baby blue jacket. We got him loaded into the car and never looked back.
We made it probably 15 minutes away when his oxygen levels tanked. My mom had to pull over and we made some adjustments and waited to see if we had to go back. That was the only time on that drive we had an issue.
Once we were at my moms the home health company met us there and set us up with 2 different machines and oxygen tanks.
He had weekly and sometimes twice a week appointments with the peds doctor to make sure he was growing and healthy.
He is my little fighter and miracle baby.
Every week I went to a Fetal Medicine appointment where they measured the amount of amniotic fluid I had and monitored the baby. Every day we would monitor the baby in the morning and the evening. I had my blood drawn damn near every morning. I found out how crappy my veins were. When they found a good vein they would take blood from it about 8 times before it would blow. My days were filled with doctors and nurses coming and going. Every morning the doctors would stop by and check on me. I had weekly visits from social work, dietitians, physical therapy, child and family life, and a few others that I can't remember at this time.
I felt so unprepared for everything. I hadn't been able to put together my babies nursery or get anything ready. There was a lot of unknown that I was facing. I had one social worker who understood this and made sure I was prepared for anything. I took tours of the NICU and saw babies that were perfectly healthy and were there to grow, I also saw babies that were not healthy and fighting to live. It was heart breaking at times. But it prepared me for things to come. I was able to see what a ventilator looked like, how the feeding tubes worked and how they did IVs on such tiny babies. My social worker would let me sit and talk to the babies and just take it in.
I went into labor several times a week. Sometimes I ended up in Labor & Delivery and other times I stayed in my room. It just depended on how my contractions went. I would make goals some times they were just to make it to tomorrow. I love the show Greys Anatomy, one of my goals was to make it to Thursday so I could watch it. Sometimes my goals were to make it until a certain nurse worked. It helped time go by.
My very best friend Kami would come visit me every week and bring lunch from different yummy places around town. A few times she got to hang out with me in L&D. I think she learned the hospital pretty well.
Closer to the end of my pregnancy I was done. I remember telling my doctor that I was done. My body hurt.
I knew it was time on Friday night. I started to feel horrible. By Saturday my stomach was sore to the point that I couldn't have a sheet on me or even my gown. I was miserable and knew something wasn't right. My nurse came in at one point and knew it was time. They did some blood work and my white count was raised. I had started to get an infection. They induced me at 3 am Sunday morning.
I waited until I was completely hooked up and we knew it was for real before calling James and my parents. James had to drive 13+ hours to get to me. My mom came down and was with me until James arrived that night.
Every contraction was horrific because of the pain I had in my stomach. Things were better after I got my epidural. I slept on and off all day. One thing I remember about that day was how we described James to the nurses. We let them know that my husband was on his way and was a panicked grizzly bear. When he finally arrived they didn't even question who he was!
My nurse the evening before I had my sweet boy was the same nurse that helped me the first night I was there. She remembered who I was.
My sweet boy was delivered the next morning at 10:18am. He weighed 4 lbs 15 oz and was 18 inches long.
He came out and made a little noise and was placed on my belly while James cut the cord. He was quickly taken away to be attended to by the NICU staff. He had to be resuscitated and then put on a ventilator to help him breath.
I was taken back to my room and James was shown to the NICU to be with our little boy. Our family came down to see us all afternoon. I wasn't able to go see my little boy until that night. It is a very hard thing to not be able to see your baby. Everyone had been able to see him but me. I struggled emotionally after having him. I just wanted to be with him. Once I was able to be in the NICU with him I spent my days there.
He had his ventilator for only 2 days! That was the best thing to come into see him and the ventilator be gone. He had his ups and downs in the weeks that he was in the NICU.
I stayed in the hospital for 2 weeks before moving to a guest house. I was incredibly hard for me to leave the hospital even just to go grab food. I also did not have very much strength. After spending a month in bed my muscles were gone and I wore out fast. It took everything out of me to walk from my room to the NICU. The first week, maybe longer, I walked with a wheelchair so I had somewhere to sit. Once I moved into the guest house I would walk over every morning and spend the entire day in the NICU. I only left when Turkey and my mom came to visit. I spent one night away at my folks house and cried the entire time.
For our little boy to come home he had to be able to eat every 3 hrs without struggling and without drops on his oxygen. He was a big fan of freaking us out, he would start eating then forget to breath. That was some of my scariest moments. I would be feeding him and look up and his stats dropping and he would go limp. Once he made it 7 days from the last apnea moment he could come home as long as he passed everything else.
The day they told me he might be coming home I had some massive panic attacks. Was I ready to bring home my tiny baby? What if something happened? The hospital was my bubble and safe zone. Leaving was scary.
My mom dropped Turkey off at school that morning and came down and we spent 3 hours shopping for everything we needed to bring him home. Everything I had for him was at my house 13+ hours away. We had to by a special car seat that was made for a baby that was small. The nurses were sweet and gave me a list of things we might need.
The day he came home was unreal. It felt like a dream. I dressed him in a super tiny three piece outfit. It was baby blue with a striped onesie and a baby blue jacket. We got him loaded into the car and never looked back.
We made it probably 15 minutes away when his oxygen levels tanked. My mom had to pull over and we made some adjustments and waited to see if we had to go back. That was the only time on that drive we had an issue.
Once we were at my moms the home health company met us there and set us up with 2 different machines and oxygen tanks.
He had weekly and sometimes twice a week appointments with the peds doctor to make sure he was growing and healthy.
He is my little fighter and miracle baby.
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