Last night was probably the worst night of our lives so far. Lucas had another episode where his stats went really bad. We had just gotten to the hospital and everything went downhill. The doctor came into the room and told us that we needed to think making some decisions about what to do if his stats go down again. No parent should ever have to think about that kind of decision. His doctor said he is more than maxed out on the types of support we can give him. He is already on support levels enough for an adult. They put him in a paralytic state to help things and have him very heavily sedated.
I held his sweet little hand and told him that as long as he wants to keep fighting, I would fight with him and for him. But if the pain was too much and he needed to let go, I understood and I would see him someday in
heaven.
Currently he is in stable but very critical condition. He is on a lot of medicines and support. The next 24 hours are a critical time. We definitely need all the prayers for these sweet boys that we can get. Please pray specifically that his lungs recover as well as his kidneys (he went into kidney failure last night but it seems to be improving slightly, as he is producing small amounts of urine with a catheter). Pray for peace for our family. Pray pray pray that Lucas recovers from this and gets stronger each day. Pray for his twin brother Miller who is doing better. Pray for the amazing nurses and doctors who work with him daily. Just please pray. We believe in the power of prayer and that God can do things that surpass all understanding. The name Lucas means "light" and I feel that his name fits him. He lights up our lives. He is amazing.
Thursday, May 9, 2013
Wednesday, May 8, 2013
A few steps back
Over the past couple of days both of our boys have had some major set backs. Monday night we were told that Miller had some bloody stools, had stopped breathing 6 times that day, and had brachycardia spells. These are all signs of NEC, which is a serious infection of the gut. By Tuesday he had gotten the official diagnosis of stage 2 NEC (stage 2 means symptoms + bloody stools). There are 3 stages of NEC. We were told that only about 15% of babies with NEC progress from stage 2 to stage 3, so hopefully it will not get worse. Right now he is being treated with a couple of antibiotics and pain meds. So far he is responding to the antibiotics. If it does get worse he will have to have surgery to remove the infected areas of the gut and fix any perforations that could arise.
On Tuesday Luke had some upper GI and skeletal x-rays. Everything went fine with the skeletal x-rays. However, with the upper GI x-rays, they had to inject a barium contrast through his G-tube to check his surgery site. The barium went into his lungs and he started suffocating. They said he was basically drowning.
They rushed him back to his room and got him stable. They had to put him on more oxygen and give him some antibiotics. Around 8:00 pm, I left his room for just a second to go to the bathroom. When I came back his room was full of doctors and nurses. His heart rate and oxygen levels dropped very low. I looked around the people standing over him and saw that he was blue. I lost it. My heart sank and I immediately began praying for my little boy. I prayed that God would take me instead. One of the doctors came over to talk to us and told us he was very critical and may not make it. We called my parents and told them to come
up here ASAP. Over the next 20 minutes (which felt like forever) they slowly got his heart rate and oxygen levels up after giving him surfactant for his lungs. Currently he is still in very critical condition. After talking to the doctors this morning during their rounds, they told us that hopefully we will see improvements over the next 48 hours. He will need some major recovery time for this.
For anyone who prays, please keep our boys in your prayers. They are facing a lot and have a long road ahead of them.
On Tuesday Luke had some upper GI and skeletal x-rays. Everything went fine with the skeletal x-rays. However, with the upper GI x-rays, they had to inject a barium contrast through his G-tube to check his surgery site. The barium went into his lungs and he started suffocating. They said he was basically drowning.
They rushed him back to his room and got him stable. They had to put him on more oxygen and give him some antibiotics. Around 8:00 pm, I left his room for just a second to go to the bathroom. When I came back his room was full of doctors and nurses. His heart rate and oxygen levels dropped very low. I looked around the people standing over him and saw that he was blue. I lost it. My heart sank and I immediately began praying for my little boy. I prayed that God would take me instead. One of the doctors came over to talk to us and told us he was very critical and may not make it. We called my parents and told them to come
up here ASAP. Over the next 20 minutes (which felt like forever) they slowly got his heart rate and oxygen levels up after giving him surfactant for his lungs. Currently he is still in very critical condition. After talking to the doctors this morning during their rounds, they told us that hopefully we will see improvements over the next 48 hours. He will need some major recovery time for this.
For anyone who prays, please keep our boys in your prayers. They are facing a lot and have a long road ahead of them.
Friday, May 3, 2013
My pregnacy- a little background
On October 27, 2012 we found out I was pregnant again just 5 months after Declan was born. Boy were we surprised- happy and filled with joy, but surprised. You can imagine how even more surprised we were when we found out on November 9 that we were expecting TWO little bundles of joy. That day in the ultrasound room is one that I will never forget. The ultrasound tech was very quiet and I was worried that something was wrong when Tom said, "Uh.... Are there TWO babies in there?" and the tech said, "Yup. You're having twins!" I sat there stunned and Tom laughed for like 10 minutes. Nobody believed us at first when we told them. Tom's mom and my mom thought we were joking at first.
So began a complicated and high risk pregnancy. The first hurdle was that I had hyperemesis gravidarum. I had it with Declan too. For those that don't know what HG is, it is severe (and I mean severe!) vomiting and nausea during pregnancy. It is NOT morning sickness. I was throwing up between 10 and 20 times a day. I lost about 20 lbs. I threw up so much that it eroded parts of my esophagus. It stripped the enamel off my teeth and I have to get dental work done for the first time in my life. I pulled muscles in my abdomen and chest from throwing up. Since my pregnancy I have learned that I have a hiatal hernia in my esophagus which may be related to HG. I was in the hospital several times for severe dehydration and malnutrition, where they would put me on IV fluids and in the process blow my collapsing veins. At home, I would throw up so much I would pass out and Tom would have to carry me to the bed. It was bad. And unlike morning sickness, HG does not stop at the 12 week mark. Both pregnancies I was this sick until around the 22 week mark.
Right before Christmas we had our first appointment with the high risk doctor. They did an ultrasound and told us that Baby B (Lucas) had a lot of problems. They pointed out a thickened nuchal fold which is a marker for Trisomy 13, Trisomy 18, and Trisomy 21 (down syndrome). They saw a heart defect and fluid in his lungs. They weren't very optimistic that he would make it.
A month later at another ultrasound I was told that we had Twin-to-Twin Transfusion Syndrome. This is where one twin is getting to much blood from the placenta and is at risk for heart failure and the other twin is not getting enough blood and is not growing. Basically the only chance they have is through surgery or by drawing out the excess fluid from the baby who is getting too much. It is a very serious condition. The doctor who delivered the news was cold and just told us and left the room, like we were taking up too much of her time. I refused to ever see this doctor again. We were then sent to LeBonheur Fetal Center to see a specialist who told us that we did not have TTTS. During the month of January, we were also told that Lucas' heart was horizontal and some of his organs were misplaced. We saw a pediatric cardiologist a couple of times over the next few weeks.
In February at 22 weeks pregnant I was in the hospital for signs of preterm labor. I was put on strict bedrest again. Shortly after that I was diagnosed with polyhydramnios which meant that I had too much amniotic fluid. I had enough fluid to support quadruplets. This condition puts the mother at risk for preterm labor and severe bleeding during childbirth. Another big risk with it is that if your water breaks, there can be such a huge gush of fluids that it can pull the cord out before the babies, which can be very dangerous for the babies.
All in all it was a pregnancy with a lot of complications for the babies and myself. Luckily I had two amazing doctors (regular OB and high risk doctor) who took really good care of me.
So began a complicated and high risk pregnancy. The first hurdle was that I had hyperemesis gravidarum. I had it with Declan too. For those that don't know what HG is, it is severe (and I mean severe!) vomiting and nausea during pregnancy. It is NOT morning sickness. I was throwing up between 10 and 20 times a day. I lost about 20 lbs. I threw up so much that it eroded parts of my esophagus. It stripped the enamel off my teeth and I have to get dental work done for the first time in my life. I pulled muscles in my abdomen and chest from throwing up. Since my pregnancy I have learned that I have a hiatal hernia in my esophagus which may be related to HG. I was in the hospital several times for severe dehydration and malnutrition, where they would put me on IV fluids and in the process blow my collapsing veins. At home, I would throw up so much I would pass out and Tom would have to carry me to the bed. It was bad. And unlike morning sickness, HG does not stop at the 12 week mark. Both pregnancies I was this sick until around the 22 week mark.
Right before Christmas we had our first appointment with the high risk doctor. They did an ultrasound and told us that Baby B (Lucas) had a lot of problems. They pointed out a thickened nuchal fold which is a marker for Trisomy 13, Trisomy 18, and Trisomy 21 (down syndrome). They saw a heart defect and fluid in his lungs. They weren't very optimistic that he would make it.
A month later at another ultrasound I was told that we had Twin-to-Twin Transfusion Syndrome. This is where one twin is getting to much blood from the placenta and is at risk for heart failure and the other twin is not getting enough blood and is not growing. Basically the only chance they have is through surgery or by drawing out the excess fluid from the baby who is getting too much. It is a very serious condition. The doctor who delivered the news was cold and just told us and left the room, like we were taking up too much of her time. I refused to ever see this doctor again. We were then sent to LeBonheur Fetal Center to see a specialist who told us that we did not have TTTS. During the month of January, we were also told that Lucas' heart was horizontal and some of his organs were misplaced. We saw a pediatric cardiologist a couple of times over the next few weeks.
In February at 22 weeks pregnant I was in the hospital for signs of preterm labor. I was put on strict bedrest again. Shortly after that I was diagnosed with polyhydramnios which meant that I had too much amniotic fluid. I had enough fluid to support quadruplets. This condition puts the mother at risk for preterm labor and severe bleeding during childbirth. Another big risk with it is that if your water breaks, there can be such a huge gush of fluids that it can pull the cord out before the babies, which can be very dangerous for the babies.
All in all it was a pregnancy with a lot of complications for the babies and myself. Luckily I had two amazing doctors (regular OB and high risk doctor) who took really good care of me.
Wednesday, May 1, 2013
Holding Miller for the first time
On April 26, when he was 4 days old, we were allowed to hold Miller for the first time. I was so nervous! When Declan was born I thought he was tiny, but this is a whole new level of tiny. Luckily the nurses gave us tips and helped get everyone situated. They wanted me to hold him with his head against my chest so he could hear my heartbeat and feel some of my body heat. Our sweet nurse, Ann, got him all set up with heated blankets and he immediately snuggled up and went to sleep. While I was holding him and talking to him, his oxygen levels got better. Miller likes it when we talk to him and gently pat his back when we hold him. There is nothing like holding your child for the first time. Hopefully soon we will get to hold Lucas. The nurses said he doesn't really like to be touched sometimes and we don't want to stress him out and take a step backwards. But as soon as my little monkey is ready, I will be patiently waiting to hold my littlest man.
Mommy, Daddy, and Miller
The boys are together again!
Both boys are now at LeBonheur in an adjoining room. Miller was transferred last night and did really well on his way over there. It will be so much easier on everyone having them at the same hospital. It was very stressful driving all over town and trying to see both Lucas and Miller everyday while recovering from a c-section. I always felt guilty if I couldn't see both twins every single day. And plus, I'm sure it will be good for the twins to be next to each other. They spent the last 7 months right next to each other in the womb. I feel like they need to be near each other now too.
The boys are doing very well. Lucas had a little bit of a rough night last night. His blood gas levels were a little off so they had to up his oxygen levels a little bit. And his sodium levels were slightly elevated so they will do some more labs today to check them again. Miller is still breathing on his own and taking feedings through a feeding tube. He is tolerating the feedings very well. Each day they increase the amount of milk that he gets. He is also using a pacifier while he gets his feedings. This is so he will associate sucking with getting food. The nurses say that eating from bottle is a big milestone for preemies. They have to learn to suck, swallow, and breathe at the same time which is a big deal. They usually develop this skill at the 34-36 gestational age mark.
We asked the nurses about decorating the boys' room since they will be there for a little while. We were given the okay to bring stuffed animals and decorations. They just can't be in the isolette (the plastic box/bassinet thing) with them. Each boy now has four stuffed animals and a security blanket. I want to make them a cute sign with their names on it. I have been searching for a little framed bible verse to hang in their rooms. All throughout my pregnancy and now, I always thought of Psalm 139: 13-14, "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made..." I always loved that because even when the doctors told me something was wrong with my babies, they were perfect to me. God created these beautiful babies and I would love them no matter what. They were fearfully and wonderfully made.
The boys are doing very well. Lucas had a little bit of a rough night last night. His blood gas levels were a little off so they had to up his oxygen levels a little bit. And his sodium levels were slightly elevated so they will do some more labs today to check them again. Miller is still breathing on his own and taking feedings through a feeding tube. He is tolerating the feedings very well. Each day they increase the amount of milk that he gets. He is also using a pacifier while he gets his feedings. This is so he will associate sucking with getting food. The nurses say that eating from bottle is a big milestone for preemies. They have to learn to suck, swallow, and breathe at the same time which is a big deal. They usually develop this skill at the 34-36 gestational age mark.
We asked the nurses about decorating the boys' room since they will be there for a little while. We were given the okay to bring stuffed animals and decorations. They just can't be in the isolette (the plastic box/bassinet thing) with them. Each boy now has four stuffed animals and a security blanket. I want to make them a cute sign with their names on it. I have been searching for a little framed bible verse to hang in their rooms. All throughout my pregnancy and now, I always thought of Psalm 139: 13-14, "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made..." I always loved that because even when the doctors told me something was wrong with my babies, they were perfect to me. God created these beautiful babies and I would love them no matter what. They were fearfully and wonderfully made.
Sunday, April 28, 2013
Part 3- The day after the twins were born
The day after the twins were born is kind of a blur to me. I was still on pain medication from my surgery and I had little to no sleep the night before. I went down to the NICU to see the boys that morning and then went back up to my room to rest for a little bit. Tom had gone home for a little while to shower and get a change of clothes. Since this all happened so suddenly and early, we did not have a hospital bag packed yet and we had nothing but my purse with us. While he was gone, one of the neonatal nurse practitioners came up to my room and told me that they needed to transfer Lucas to LeBonheur for emergency surgery. They had done some x-rays on him and he had so much air in his body that they could hardly see his organs. The reason he had so much air in his body was because he had a hole in his intestines and this needed to be repaired asap.
I don't know if I've ever been so scared in my life. My little boy was less than 24 hours old and 11 weeks premature and he was about to have surgery. We already knew that Luke was a fighter (more on that in a different post, but all throughout my pregnancy we were told he had a lot of complications), but I was so worried.
Lucas was transferred to LeBonheur in an ambulance by a team called Pedi-Flite. These guys were awesome. While they got him stable and ready to move to the ambulance, one of the girls sat with me on the couch and hugged me while I cried. She asked for my cell phone number and promised me she would call me as soon as they got him to LeBonheur. I was not yet released from the hospital following my c-section, so I couldn't go with them. They let Tom ride in the ambulance with them to LeBonheur though. As soon as they arrived there and got Luke stable, that sweet girl did as she promised and called me to let me know that he was ok. The Pedi-Flite team also bought Luke a t-shirt.
That night Lucas had surgery to repair the hole in his intestines and he did great. He is still recovering, but our little guy is tough. He will stay in the NICU at LeBonheur and soon Miller will be transferred there to be with his brother.
I don't know if I've ever been so scared in my life. My little boy was less than 24 hours old and 11 weeks premature and he was about to have surgery. We already knew that Luke was a fighter (more on that in a different post, but all throughout my pregnancy we were told he had a lot of complications), but I was so worried.
Lucas was transferred to LeBonheur in an ambulance by a team called Pedi-Flite. These guys were awesome. While they got him stable and ready to move to the ambulance, one of the girls sat with me on the couch and hugged me while I cried. She asked for my cell phone number and promised me she would call me as soon as they got him to LeBonheur. I was not yet released from the hospital following my c-section, so I couldn't go with them. They let Tom ride in the ambulance with them to LeBonheur though. As soon as they arrived there and got Luke stable, that sweet girl did as she promised and called me to let me know that he was ok. The Pedi-Flite team also bought Luke a t-shirt.
That night Lucas had surgery to repair the hole in his intestines and he did great. He is still recovering, but our little guy is tough. He will stay in the NICU at LeBonheur and soon Miller will be transferred there to be with his brother.
Saturday, April 27, 2013
The twins debut- part 2
The c-section was so quick and before I knew it, both babies were out and had a team of doctors working on them. We were very pleased with their birth weights, especially to be 11 weeks early. Miller was a bit bigger and was crying a little bit, so they let me see him. Lucas needed a little extra TLC so I wasn't able to see him until later that night. I knew they would immediately take the babies to the NICU but I was so sad not to be able to hold my two new sons. I stayed in the labor and delivery room for an hour so they could monitor my immediate recovery. I was thankful that Tom was allowed to be in there with me. The rest of my family wasn't allowed back there at this time though.
After the first hour, I was taken to a postpartum room for the rest of my recovery. I had to stay there for another 4 hours before they would let me go down to the NICU to see the boys. Those 4 hours felt like eternity. All I wanted to do was see my sweet boys. Finally, around 10:30 that night, they let me go to the NICU to see Miller and Lucas. I was not at all prepared for what I saw. They were so tiny and had all kinds of cords and IVs and monitors hooked up to them. I got pretty choked up and emotional seeing my babies like that.
Lucas
Miller
After visiting with the boys for a little while, Tom and I went back up to my room and got probably the worst nights sleep ever. I couldn't stop thinking about Miller and Lucas. And I was in a lot of pain from my c-section. In fact, much of the day they were born and the day after seem like a blur to me. I was running on basically no sleep, had a ton of pain meds from surgery, and was super stressed out. The day after the boys were born would turn out to be one of the most stressful days of our lives. More on that with Part 3 soon.
After the first hour, I was taken to a postpartum room for the rest of my recovery. I had to stay there for another 4 hours before they would let me go down to the NICU to see the boys. Those 4 hours felt like eternity. All I wanted to do was see my sweet boys. Finally, around 10:30 that night, they let me go to the NICU to see Miller and Lucas. I was not at all prepared for what I saw. They were so tiny and had all kinds of cords and IVs and monitors hooked up to them. I got pretty choked up and emotional seeing my babies like that.
Lucas
Miller
After visiting with the boys for a little while, Tom and I went back up to my room and got probably the worst nights sleep ever. I couldn't stop thinking about Miller and Lucas. And I was in a lot of pain from my c-section. In fact, much of the day they were born and the day after seem like a blur to me. I was running on basically no sleep, had a ton of pain meds from surgery, and was super stressed out. The day after the boys were born would turn out to be one of the most stressful days of our lives. More on that with Part 3 soon.
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