http://randtmakesthree.blogspot.com
If you would like to keep following our little family, be sure to check out the new blog. I am making a goal of posting at least twice a week. Hopefully I can stick to that!
Monday, August 5, 2013
Tuesday, July 30, 2013
A new blog... maybe....
So I'm thinking of starting a new blog. Just maybe. I like going back and reading and remembering different milestones the boys had. It is easy to document the little things.
Writing is also pretty therapeutic to me. When I get upset with someone, I always write them a letter and say everything I want to say. Then I tear up the letter and throw it away. Usually, I get all my venting out in the letter and I'm ready to move on without needing to confront the person. That's how writing is for me. Therapy. And since we are going through a roller coaster of emotions, it could be good for me to have an outlet.
So, the past couple of weeks have been.... well... rough. I have gone to the cemetery several times. I don't like the word cemetery. I think I prefer to call it Lucas's garden. Butterflies seem to be a recurring thing there. My whole family sees them all the time.
Yesterday I was in Lucas's garden, sitting on the grass crying and a butterfly floats around me and lands next to me on the grass.
We have also seen several deer. The second or third time I went, my mom and I saw 7 deer there.
I have found myself getting very agitated lately. Things that normally don't bother me that much do now. Like the other day, we were grocery shopping and the woman at the checkout saw Miller and said to Tom, "How cute! How old is the baby?" So we answered her. Then she turns to me and says, "And how old is Mommy?" is a very condescending tone. Yes, I look younger than I am. But, really? Anyway, normally things like this (and this happens fairly often) don't bother me much. But it really irritated me that day.
And we went back to church for the first time Sunday. My dear friend Heather brought her new baby girl and I brought Miller. The two babies are about the same size. A man came up and said, "Two for one, huh?" I started crying. This man had no idea what had happened, but it hurt nevertheless.
We start grief counseling soon. Maybe this will help with my agitation and my anxiety.
On a different note, Declan and Miller are doing great. These boys can make me smile even through the roughest of days. Declan will pat my back when I'm upset. Melts my heart. He is on a Thomas the Train kick. I got him a Thomas the Train book the other day and he is completely obsessed with it.
Miller is a whopping 8 lbs 9 oz now and 20 1/2 inches long. When we brought him home on June 13, he only weighed 5 lbs 4 oz! The boy sure does enjoy eating!
So, yeah. We are just taking it one day at a time. Sometimes one hour at a time. I'm working on starting a new blog. For those that wish to follow, check back in a couple of weeks for a link. It is taking me a while to get stuff done, between taking care of the boys, writing thank you cards, dishes, laundry, and moving in a couple of weeks... we have our hands very full!
Writing is also pretty therapeutic to me. When I get upset with someone, I always write them a letter and say everything I want to say. Then I tear up the letter and throw it away. Usually, I get all my venting out in the letter and I'm ready to move on without needing to confront the person. That's how writing is for me. Therapy. And since we are going through a roller coaster of emotions, it could be good for me to have an outlet.
So, the past couple of weeks have been.... well... rough. I have gone to the cemetery several times. I don't like the word cemetery. I think I prefer to call it Lucas's garden. Butterflies seem to be a recurring thing there. My whole family sees them all the time.
Yesterday I was in Lucas's garden, sitting on the grass crying and a butterfly floats around me and lands next to me on the grass.
We have also seen several deer. The second or third time I went, my mom and I saw 7 deer there.
I have found myself getting very agitated lately. Things that normally don't bother me that much do now. Like the other day, we were grocery shopping and the woman at the checkout saw Miller and said to Tom, "How cute! How old is the baby?" So we answered her. Then she turns to me and says, "And how old is Mommy?" is a very condescending tone. Yes, I look younger than I am. But, really? Anyway, normally things like this (and this happens fairly often) don't bother me much. But it really irritated me that day.
And we went back to church for the first time Sunday. My dear friend Heather brought her new baby girl and I brought Miller. The two babies are about the same size. A man came up and said, "Two for one, huh?" I started crying. This man had no idea what had happened, but it hurt nevertheless.
We start grief counseling soon. Maybe this will help with my agitation and my anxiety.
On a different note, Declan and Miller are doing great. These boys can make me smile even through the roughest of days. Declan will pat my back when I'm upset. Melts my heart. He is on a Thomas the Train kick. I got him a Thomas the Train book the other day and he is completely obsessed with it.
Miller is a whopping 8 lbs 9 oz now and 20 1/2 inches long. When we brought him home on June 13, he only weighed 5 lbs 4 oz! The boy sure does enjoy eating!
So, yeah. We are just taking it one day at a time. Sometimes one hour at a time. I'm working on starting a new blog. For those that wish to follow, check back in a couple of weeks for a link. It is taking me a while to get stuff done, between taking care of the boys, writing thank you cards, dishes, laundry, and moving in a couple of weeks... we have our hands very full!
Monday, July 15, 2013
One day at a time
A lot of people have asked how we are doing. It is really hard to answer that question because honestly, we feel so empty and heart broken. We miss our sweet Lucas. We are comforted by the fact that he is in heaven, perfectly healed and perfectly happy. Those of us still here though are broken. Another question we are asked a lot is how Miller is doing. Miller is grieving in his own little newborn way. The hours before Lucas went to heaven, my mom said Miller was inconsolable. At the time that Lucas went into Jesus's arms, she said that Miller suddenly stopped crying and looked up towards the ceiling and smiled. I like to believe that Lucas let Miller know at that moment that he was ok now. He was perfectly healthy and going to see Jesus. I've always heard that twins have a special connection and now I believe that more than ever.
It was really hard to look at Miller the couple days after. Most people that lose a child don't have another one that looks exactly like the child they lost. It is hard, yet a blessing at the same time to see so much of Lucas when I look at Miller.
Of course we will never be the same again. Lucas changed our lives in so many ways. We learned a whole new level of love. We love all of our children equally, but loving a chronically sick child teaches you so much about love. I would have given anything to have Lucas healed here on earth and come home with us.
Another question we have gotten is what exactly happened. I don't think I am ready to talk about it, and I may never be ready. Losing a child is traumatic. I will say that he passed away in our arms, with us telling him how much we love him and that we would see him again in heaven someday.
We are so thankful that we got to spend 76 precious days with our beautiful Lucas. I will cherish that time always. We are thankful for the abundant prayers, hugs, meals, offers to baby-sit, and donations. I am thankful that because of people's generosity, even people we have never met, that the entire cost of the funeral was taken care of. I'm not sure that we will keep blogging on this blog. We may start a new one, as we are starting a new chapter in our lives. If we do, we will post our new blog site on here. One thing I can promise, though, is that we will speak of Lucas often and tell the world about how he changed our lives. He will always be such a beautiful part of our lives.
It was really hard to look at Miller the couple days after. Most people that lose a child don't have another one that looks exactly like the child they lost. It is hard, yet a blessing at the same time to see so much of Lucas when I look at Miller.
Of course we will never be the same again. Lucas changed our lives in so many ways. We learned a whole new level of love. We love all of our children equally, but loving a chronically sick child teaches you so much about love. I would have given anything to have Lucas healed here on earth and come home with us.
Another question we have gotten is what exactly happened. I don't think I am ready to talk about it, and I may never be ready. Losing a child is traumatic. I will say that he passed away in our arms, with us telling him how much we love him and that we would see him again in heaven someday.
We are so thankful that we got to spend 76 precious days with our beautiful Lucas. I will cherish that time always. We are thankful for the abundant prayers, hugs, meals, offers to baby-sit, and donations. I am thankful that because of people's generosity, even people we have never met, that the entire cost of the funeral was taken care of. I'm not sure that we will keep blogging on this blog. We may start a new one, as we are starting a new chapter in our lives. If we do, we will post our new blog site on here. One thing I can promise, though, is that we will speak of Lucas often and tell the world about how he changed our lives. He will always be such a beautiful part of our lives.
Sunday, July 7, 2013
Heaven gained an angel baby
Our precious Lucas went to be with Jesus early this morning. My sweet baby passed away in my arms. We are absolutely devastated and heartbroken. This is the worst kind of pain and grief. We are comforted by the fact that Lucas is no longer struggling or in pain, but we miss him so very much. Thank you all for your continued thoughts and prayers. Our family needs them right now, more than ever.
Thursday, July 4, 2013
Time
It's very hard to find the time to blog these days with 2 boys at home and 1 in the NICU, but I'm going to try to be better at it. Miller is doing great at home. He is eating like a champ. Man, this kid loves to eat! He is growing so much and changing each day. He always looks so serious except for a few moments a day when he grins really big. Declan is completely fascinated with Miller. It is so sweet.
Lucas is still having a hard time. We learned that he is currently the sickest baby in the LeBonheur NICU which made my stomach turn when I heard that. He may be the sickest baby, but I guarantee he is the toughest baby there! He is currently battling a couple of different infections, persistent pulmonary hypertension, barium insult to his right lung, possible pneumothorax, grade 1 IVH (mild bleeding of the brain, but this can be reversible and is to be expected of a preemie who has crashed so many times), and esophageal atresia. So, yeah, he has a lot going on. He has been on small feedings of breast milk for a few days now and is doing well with that. They wanted to fortify the breast milk with human milk fortifier for extra calories, but we declined that for now since it increases his chance of getting NEC. I do not want to take any chances of him getting NEC. NEC is absolutely terrifying and a very dangerous infection. Miller had NEC, but thankfully only needed a round of antibiotics to treat it.
For all of you who are praying for Lucas, we thank you from the bottom of our hearts. He needs a lot of prayers. Please pray that the infections respond to the antibiotics, for a way to treat the pulmonary hypertension, for his lungs to heal, and that he doesn't get NEC, as these are the biggest issues he is facing.
Lucas is still having a hard time. We learned that he is currently the sickest baby in the LeBonheur NICU which made my stomach turn when I heard that. He may be the sickest baby, but I guarantee he is the toughest baby there! He is currently battling a couple of different infections, persistent pulmonary hypertension, barium insult to his right lung, possible pneumothorax, grade 1 IVH (mild bleeding of the brain, but this can be reversible and is to be expected of a preemie who has crashed so many times), and esophageal atresia. So, yeah, he has a lot going on. He has been on small feedings of breast milk for a few days now and is doing well with that. They wanted to fortify the breast milk with human milk fortifier for extra calories, but we declined that for now since it increases his chance of getting NEC. I do not want to take any chances of him getting NEC. NEC is absolutely terrifying and a very dangerous infection. Miller had NEC, but thankfully only needed a round of antibiotics to treat it.
For all of you who are praying for Lucas, we thank you from the bottom of our hearts. He needs a lot of prayers. Please pray that the infections respond to the antibiotics, for a way to treat the pulmonary hypertension, for his lungs to heal, and that he doesn't get NEC, as these are the biggest issues he is facing.
Monday, June 24, 2013
2 months!
The twins turned 2 months old on the 22nd. I can't believe my little twinkies are already 2 months old!
Miller,
You are 2 months old! Wow, time is flying by! This month you got to come home and we are loving every minute with you. You now weigh 6 lbs 2 oz and are 19 and 1/2 inches long. Big boy! You are still in preemie diapers but you have moved up to newborn size clothes. You are taking about 2 and 1/2 oz of breast milk every 3-4 hours. You are still a little feisty man. Bath time is a dreaded event in our house because you hate it so much! The past couple of weeks have been busy for you. You had an eye exam last week and it was terrible for mommy to watch. You screamed so much. You have gone to the pediatrician a couple of times and are gaining weight like a champ. We love you so much!
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Lucas,
You are 2 months old, baby boy! Luke, you are so amazing. The doctors and nurses continue to talk about what a little fighter you are. Over the last month you have had another surgery, gotten off the oscillator, and come down on some of your ventilator settings. Your stats go back and forth, but one day we walked into your room and your oxygen saturation was at 100%! We tried to snap a picture of it, but it changed as soon as we got the camera out. Your weight is around 5 lbs, but due to fluid retention we aren't quite sure exactly how much you weigh. You are very tall (I think you are even longer than Miller) and have some big feet! You seem to like it when mommy sings to you and when we talk to you in a soft voice. You don't like loud noises or a lot of commotion. You have started quite the stuffed animal collection. My sweet boy, you are so amazing and so loved.
Miller,
You are 2 months old! Wow, time is flying by! This month you got to come home and we are loving every minute with you. You now weigh 6 lbs 2 oz and are 19 and 1/2 inches long. Big boy! You are still in preemie diapers but you have moved up to newborn size clothes. You are taking about 2 and 1/2 oz of breast milk every 3-4 hours. You are still a little feisty man. Bath time is a dreaded event in our house because you hate it so much! The past couple of weeks have been busy for you. You had an eye exam last week and it was terrible for mommy to watch. You screamed so much. You have gone to the pediatrician a couple of times and are gaining weight like a champ. We love you so much!
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Lucas,
You are 2 months old, baby boy! Luke, you are so amazing. The doctors and nurses continue to talk about what a little fighter you are. Over the last month you have had another surgery, gotten off the oscillator, and come down on some of your ventilator settings. Your stats go back and forth, but one day we walked into your room and your oxygen saturation was at 100%! We tried to snap a picture of it, but it changed as soon as we got the camera out. Your weight is around 5 lbs, but due to fluid retention we aren't quite sure exactly how much you weigh. You are very tall (I think you are even longer than Miller) and have some big feet! You seem to like it when mommy sings to you and when we talk to you in a soft voice. You don't like loud noises or a lot of commotion. You have started quite the stuffed animal collection. My sweet boy, you are so amazing and so loved.
Wednesday, June 19, 2013
A new job
So I have a new job. I am a stay-at-home mommy now. And boy do I have so much more respect for stay-at-home parents now. I thought my days would consist of cuddling both boys that are at home, calling to check on Luke, and maybe a couple loads of laundry here and there. Nope. My days consist of chasing a very active toddler around, trying to feed Declan and nurse Miller at the exact same time, somehow finding 5 minutes to shower and get dressed for the day, calling to check on Luke while Declan screams at me... But you know what? I am loving every minute of it. I'm not saying I won't have days where I feel overwhelmed. But I think after everything we have been through, I am so so so grateful to be spending this time with my boys. It really does make you look at things differently. The house may not be spotless. We may have laundry piled up. Oh well. It'll get done when it gets done.
Luke has had another rough stretch. The infectious disease doctors talked to Tom yesterday. Luke has something but they don't know what. He is on more antibiotics and steroids. His left lung isn't looking as good. It has started to deflate a little bit, so they started a steroid in hopes of getting it back to full capacity. The doctors say that the next 3 or 4 days are very critical for him. They say it will give us a better idea on his survival and what long term problems he may have. I literally felt sick when I heard all of this. I would give anything to take this struggle myself. If I could trade places with him, I would in a heartbeat.
Today I spent a good majority of the day with Luke. One of the respiratory therapists told me for what it's worth, she thought he looked better today. She also told me about a set of twins that were struggling like Luke and they came to visit today, at ages 2 and 1/2, and they are happy, healthy kids. I needed that. I know the severity of the situation, but we need some hope to cling to. I sang to Lucas today. He seemed to like that. I am by no means a great singer, but I just felt the need to sing to him. I talked to him a lot and prayed over him.
Back at home, Miller is chowing down and gaining weight like a champ. He left the NICU weighing 5 lbs 4 oz and now he is up to 5 lbs 11 oz! Miller loves to cuddle. He positively hates bath time, making it a miserable process for both of us. Unfortunately, due to him peeing on his head almost every day this week, he has gotten a few baths. He has outgrown his preemie clothes and is now into newborn sizes, though they are slightly too big for him. The pants are especially big since this little guy has some skinny legs. He is still in preemie diapers. Little guy loves to be swaddled. Good thing that Tom is an expert swaddler. I, on the other hand, am not very good at swaddling. We are getting there though.
Big brother Declan is very curious about Miller. He has some moments of jealously, but they are few and far between. Every time Miller makes a noise, Declan says brother, or "bruh-ba." It is so cute. Declan is so close to walking. I think if we had carpet instead of hardwood floors, he would be walking already.
Luke has had another rough stretch. The infectious disease doctors talked to Tom yesterday. Luke has something but they don't know what. He is on more antibiotics and steroids. His left lung isn't looking as good. It has started to deflate a little bit, so they started a steroid in hopes of getting it back to full capacity. The doctors say that the next 3 or 4 days are very critical for him. They say it will give us a better idea on his survival and what long term problems he may have. I literally felt sick when I heard all of this. I would give anything to take this struggle myself. If I could trade places with him, I would in a heartbeat.
Today I spent a good majority of the day with Luke. One of the respiratory therapists told me for what it's worth, she thought he looked better today. She also told me about a set of twins that were struggling like Luke and they came to visit today, at ages 2 and 1/2, and they are happy, healthy kids. I needed that. I know the severity of the situation, but we need some hope to cling to. I sang to Lucas today. He seemed to like that. I am by no means a great singer, but I just felt the need to sing to him. I talked to him a lot and prayed over him.
Back at home, Miller is chowing down and gaining weight like a champ. He left the NICU weighing 5 lbs 4 oz and now he is up to 5 lbs 11 oz! Miller loves to cuddle. He positively hates bath time, making it a miserable process for both of us. Unfortunately, due to him peeing on his head almost every day this week, he has gotten a few baths. He has outgrown his preemie clothes and is now into newborn sizes, though they are slightly too big for him. The pants are especially big since this little guy has some skinny legs. He is still in preemie diapers. Little guy loves to be swaddled. Good thing that Tom is an expert swaddler. I, on the other hand, am not very good at swaddling. We are getting there though.
Big brother Declan is very curious about Miller. He has some moments of jealously, but they are few and far between. Every time Miller makes a noise, Declan says brother, or "bruh-ba." It is so cute. Declan is so close to walking. I think if we had carpet instead of hardwood floors, he would be walking already.
Love this little guy so much!
Sunday, June 16, 2013
Miller's big day continued
On Tuesday this week Tom and I got to the hospital to see the boys and the nurse that day said, "How would you guys like to take Miller home on Thursday?" We were pretty surprised because we thought it would be at least next week before he could come home. Of course we were thrilled to take him home sooner than we thought. Wednesday was a busy day. We took infant CPR classes, which I think every parent should take. I didn't know how to do infant CPR until now and I feel much better knowing how to do it now. Miller had to do the car seat challenge too. This is where they put him in his car seat for a while (he was in there for an hour) while he is hooked up to his monitors and they see how he handles it. If they don't pass, they are given a car bed to ride in. Miller did great on his car seat challenge.
Next we packed up his room and got quizzed on how to take care of a new baby. Miller then got all of his monitors off. He did not like this, of course. He wiggled around in protest.
The boys' primary nurse, Becky, was on the other side of the NICU working with a different group of babies. She came by to see Miller though. This woman is an amazing nurse. She has what you can't teach. She is a God send.
Now we are at home adjusting to life with two babies at home and going to see this sweet little peanut in the hospital.
Lucas is getting over his last infection which came back as MRSA pneumonia. Friday his oxygen saturation was a little low. It was staying in the 70s and low 80s. Right now his saturation is in the 90s and I have even seen it at 100% a couple of times. They have him on 75% oxygen and on the oscillator. He was in a paralysis state so that he wouldn't move and get agitated, but they took him off that and now he is wiggling around and opens his sweet little eyes when I talk to him. Sweet boy. I cannot wait to hold him again.
Next we packed up his room and got quizzed on how to take care of a new baby. Miller then got all of his monitors off. He did not like this, of course. He wiggled around in protest.
The boys' primary nurse, Becky, was on the other side of the NICU working with a different group of babies. She came by to see Miller though. This woman is an amazing nurse. She has what you can't teach. She is a God send.
Lucas is getting over his last infection which came back as MRSA pneumonia. Friday his oxygen saturation was a little low. It was staying in the 70s and low 80s. Right now his saturation is in the 90s and I have even seen it at 100% a couple of times. They have him on 75% oxygen and on the oscillator. He was in a paralysis state so that he wouldn't move and get agitated, but they took him off that and now he is wiggling around and opens his sweet little eyes when I talk to him. Sweet boy. I cannot wait to hold him again.
Thursday, June 13, 2013
Miller's big day
Guess what...
Miller came home today! We are THRILLED to have him home, although we would give anything to have Lucas home as well.
Miller came home today! We are THRILLED to have him home, although we would give anything to have Lucas home as well.
Sunday, June 9, 2013
Random thoughts
We went to church today for the first time in several weeks. We are part of a wonderful church. So many people, even people we have never met, came up to us and told us they have been praying for our family. That really touched me. Declan went to the nursery today. I snuck out of service to go check on him at some point and saw him sharing his cheerios with another boy in his nursery class. He is such a sweet little boy. Every day when we go to the hospital he starts saying "bru-ba" (brother) when we get to the boys' rooms. It is so sweet. He got a helicopter toy for his birthday and I heard him playing in the floor imitating the helicopter sounds.
After church we headed down to the hospital. Of course as soon as we get there, my sweet Declan went crazy. He was grumpy and crying and just CRAZY. Miller wanted nothing to do with his bottle today when I tried to feed him. One of the nurse practitioners said today that the feeding situation is basically the only thing keeping Miller from coming home. He is gaining weight consistently. He weighs 4 lbs 15 oz now. Now he just needs to take a bottle consistently at every feeding. He is still ahead of his gestational age for feedings. Most babies don't get the bottle thing until 36-38 week mark and he will be 36 weeks tomorrow. I'm just ready for Miller man to get to come home.
Lucas is still resting and recovering. They are weening him off his pain medications over the next few days. The next steps will be weening off the ventilator and begin feedings through his MIC-KEY button. When I went into his room today, he was wide awake and looking around. He has been so sedated lately that I rarely see him with his eyes open. It was so sweet to see him looking at me while I talked to him. During his operation this week, they gave him a new kind of feeding tube called a MIC-KEY button. It is a type of g-tube that the nurses say is easier to clean and use. They all love the MIC-KEY buttons. After some googling, I discovered several websites that make cute little MIC-KEY button covers. I found some clothes that have flaps that snap over the g-tube site too.
We have all done some talking and we want to make sure Lucas has as much of a normal childhood as possible. Yes, he does have special needs. But is still a little boy and I will do everything possible to make sure he gets to lead a safe and normal childhood. Lucas is so amazing. He has changed my life in so many ways. He is so beautiful.
Tomorrow I start back to work so I'm sure this week will be crazy busy. It will definitely take some time to get a good schedule down. Working 10 hour days Monday-Thursday, taking care of a very active 1 year old, going to see the twins every day, and keeping up with things like laundry and sleep.... It is going to be so busy!
Friday, June 7, 2013
Recovery and jamming to some music
Lucas had his surgery to repair the TE fistula on Wednesday. I was nervous about it because it is a very serious surgery, but I had prayed a lot and felt that God gave me a sense of peace about it. I felt like it was going to be ok. Wednesday morning I got the hospital early that morning and sat with Lucas and told him how proud we are of him and that he was going to do so well during surgery.
The surgery team came up to the room around 11 that morning and got him prepped and ready. They let me walk with them down to the surgery area and I got to pick out a stuffed animal for him. I got him a teddy bear and took it back to his room. I waited in Miller's room while they did the surgery and next thing I know they are calling me telling me that he did great and was on the way back upstairs. We are so proud of our little Lucas!
The surgery team came up to the room around 11 that morning and got him prepped and ready. They let me walk with them down to the surgery area and I got to pick out a stuffed animal for him. I got him a teddy bear and took it back to his room. I waited in Miller's room while they did the surgery and next thing I know they are calling me telling me that he did great and was on the way back upstairs. We are so proud of our little Lucas!
Luke's teddy bear
Thursday I walked into Miller's room and see this-
Miller had a radio in his room and was jamming out to some country music. It tickled me. I think he liked it too because he was very calm that day. Our nurse said we could bring some CDs in for him to listen to. We will most likely have to buy a CD for him since I'm sure he won't be calm listening to the type of music that Tom likes. I have discovered a lullaby CD set called Rockabye Baby which is lullaby renditions of classic rock. Maybe Miller will like some lullabies to Queen music.
The boys got their first round of vaccinations this week. Miller had another eye exam and passed with flying colors again. They didn't do Lucas' eye exam since he is still recovering from surgery but they expect his to be good too.
The boys got their first round of vaccinations this week. Miller had another eye exam and passed with flying colors again. They didn't do Lucas' eye exam since he is still recovering from surgery but they expect his to be good too.
Wednesday, June 5, 2013
He's a fighter!
Just a quick update. We will post details soon. Lucas had a successful surgery today! His TE fistula has been fixed and he had a new PICC line and G-tube put in as well. Little man is recovering now. Thank God for a successful surgery!
Tuesday, June 4, 2013
Birthday gift
So today is my birthday and this is the wonderful gift I got today-
I got to hold my sweet Lucas for the very first time. After 43 long days I finally got to hold my precious baby boy. I cried so many tears of joy. Words cannot describe the pure joy the first time a mother gets to hold her baby. This was most definitely one of the sweetest and best moments of my life. It seems like lately I've done more pleading than praising God, but today I have praised Him for the beautiful blessings He has given me. I am so thankful for all my boys. I am so thankful that I got to hold precious Lucas.
Tomorrow morning Lucas will have surgery to correct the TE fistula and to place a more secure PICC line. Please pray that the surgery goes well. Pray for the medical team doing the surgery. Pray for strength for our family. We are scared and nervous. Pray that Lucas recovers quickly.
The past two nights Tom and I have both stayed the night at the hospital and taken care of Miller. We have gotten to bathe him, take his temperature, weigh him, dress him, change his diaper, and given him his bottles. He is getting better each day at feeding from a bottle. One of the sweet nurses sat down with me and gave me some pointers for feeding a preemie. After using some of her techniques, Miller started to be more interested in his feedings. We are so proud of our boys!
I got to hold my sweet Lucas for the very first time. After 43 long days I finally got to hold my precious baby boy. I cried so many tears of joy. Words cannot describe the pure joy the first time a mother gets to hold her baby. This was most definitely one of the sweetest and best moments of my life. It seems like lately I've done more pleading than praising God, but today I have praised Him for the beautiful blessings He has given me. I am so thankful for all my boys. I am so thankful that I got to hold precious Lucas.
Tomorrow morning Lucas will have surgery to correct the TE fistula and to place a more secure PICC line. Please pray that the surgery goes well. Pray for the medical team doing the surgery. Pray for strength for our family. We are scared and nervous. Pray that Lucas recovers quickly.
The past two nights Tom and I have both stayed the night at the hospital and taken care of Miller. We have gotten to bathe him, take his temperature, weigh him, dress him, change his diaper, and given him his bottles. He is getting better each day at feeding from a bottle. One of the sweet nurses sat down with me and gave me some pointers for feeding a preemie. After using some of her techniques, Miller started to be more interested in his feedings. We are so proud of our boys!
Saturday, June 1, 2013
What's in a name?
A lot of people have asked us lately where we got the boys' names so I thought I'd share :)
Our oldest boy is Declan Thomas. Most people think Declan is a family name, but it isn't. Way back before we were even expecting him we saw a movie that had a character named Declan. We loved the name! We looked it up and it was Irish and means "full of goodness." Even better. It had a great meaning. It is pronounced Deck-lin. Recently we have seen the name around a lot, like in the TV shows Revenge and Criminal Minds. His middle name, Thomas, is my hubby's name.
Our twin boys are Miller James and Lucas Rolland. Miller is a family name on my dad's side of the family. My great-grandfather's name was Miller and it is my little brother's middle name. I have always loved the name Miller but it took some convincing on Tom's part. He didn't like it at first (but he loves it now!). His middle name, James, is Tom's dad's middle name. The name Lucas was chosen because it means "light." And our little Luke is a light in our lives. Lucas' middle name is Rolland which is Tom's middle name and Tom's grandfather's name. It is pronounced Ral-land.
So there's a little background to our boys' names :)
Our oldest boy is Declan Thomas. Most people think Declan is a family name, but it isn't. Way back before we were even expecting him we saw a movie that had a character named Declan. We loved the name! We looked it up and it was Irish and means "full of goodness." Even better. It had a great meaning. It is pronounced Deck-lin. Recently we have seen the name around a lot, like in the TV shows Revenge and Criminal Minds. His middle name, Thomas, is my hubby's name.
Our twin boys are Miller James and Lucas Rolland. Miller is a family name on my dad's side of the family. My great-grandfather's name was Miller and it is my little brother's middle name. I have always loved the name Miller but it took some convincing on Tom's part. He didn't like it at first (but he loves it now!). His middle name, James, is Tom's dad's middle name. The name Lucas was chosen because it means "light." And our little Luke is a light in our lives. Lucas' middle name is Rolland which is Tom's middle name and Tom's grandfather's name. It is pronounced Ral-land.
So there's a little background to our boys' names :)
Friday, May 31, 2013
Open crib
Look who is in an open crib!
AND Miller is wearing baby clothes for the first time!
The boys have had a fairly good couple of days. Miller is still trying to take a bottle at every feeding. Sometimes he does really well and sometimes he gets too tired and just falls asleep. The nurses say this is normal, that learning to use a bottle is hard work for a preemie.
Lucas' blood culture showed that the staph infection that he has is MRSA. This made me worried because I know about MRSA and it can be very serious. The nurse said that he is responding to antibiotics though. He will have a spinal tap soon to rule out meningitis, although they don't think it is meningitis. This is just precautionary. Our nurse Becky said a spinal tap for babies is no more stressful to them than a heel prick. As long as the spinal tap comes back clear of meningitis, Lucas will have surgery on Wednesday to fix the TE fistula.
AND Miller is wearing baby clothes for the first time!
The boys have had a fairly good couple of days. Miller is still trying to take a bottle at every feeding. Sometimes he does really well and sometimes he gets too tired and just falls asleep. The nurses say this is normal, that learning to use a bottle is hard work for a preemie.
Lucas' blood culture showed that the staph infection that he has is MRSA. This made me worried because I know about MRSA and it can be very serious. The nurse said that he is responding to antibiotics though. He will have a spinal tap soon to rule out meningitis, although they don't think it is meningitis. This is just precautionary. Our nurse Becky said a spinal tap for babies is no more stressful to them than a heel prick. As long as the spinal tap comes back clear of meningitis, Lucas will have surgery on Wednesday to fix the TE fistula.
Wednesday, May 29, 2013
Birthday!
This little cutie turned 1 year old today! As you can tell in the adorable picture that my long time friend Heather (who had the same due date as me!) took, Declan LOVES cake. He demolished that cake and we spent a long time cleaning up green icing out of his hair, behind his ears, in between his toes.... lots of icing!
The twins have both had pretty good nights. Last night Miller got his second bottle and he took 27 ccs out of 29. While he takes a bottle, the nurses watch for his heart rate and oxygen saturation. Usually most babies at this gestational age get stressed out and really tired. Their heart rates usually get high and their oxygen saturation usually drops. But our little Miller man handled it so well- no change in heart rate or oxygen saturation! He is doing so well on the bottle that he has been given the okay to have a bottle at every feeding. This is a big deal! He has skipped over the usual process of 1 bottle a day for a few days, then 2 bottles for a few days, then a bottle at every other feeding, etc. The doctor said not to be surprised if he doesn't do this well after a few days since it is very tiring for babies to learn to take a bottle. Hopefully Miller will keep up the good work! We are so proud of him. We were also told that they would soon be weening him out of the isolette into an open bed. This is another really big step. He has to learn how to keep his body temperature up. When he gets moved into his new bed, we can start dressing him! I am so excited to put some cute clothes and hats on our little guy!
Lucas has been resting and recovering the past few days. Poor little guy has had a rough week. He is doing better though, and the doctors are hoping to do the TE fistula surgery either the end of this week or early next week. Thank you all for your continued prayers. Please pray that Luke continues to recover well so that he can get this operation that he desperately needs. Please pray for the surgeons and doctors working with him, that they have the wisdom and compassion that Luke needs. Pray for God to calm Tom and me. We are so nervous and scared for our little boy to have another surgery. Pray that Lucas' lungs get better and that the chronic lung disease in his left lung clears up, since this is the only lung that is working well. Pray that the antibiotics continue to work on the bacterial infection. And pray that Miller continues to do well!
Tuesday, May 28, 2013
When it rains, it pours
Today during rounds the doctors told me that they thought Lucas had some sort of infection, either meningitis or staph infection. They had done a blood culture and it showed growth. Luckily they had already started him on antibiotics and by the time they did a second culture, the growth had stopped. I am just so disheartened that my little boy keeps getting these set backs. I wish I could take them from him. I would gladly trade places with him. Why should a little baby have to go through this? I am trying to trust that God knows what He is doing. After all, God loves Lucas even more than I do. But it is hard to understand why this is happening.
When we left the hospital this morning, Tom and I got into an accident. Some guy in a big truck hit our car and ran us off the side of the road, almost into a light pole. It tore our tires up and did some damage to our car. We were both okay and I am so glad that Declan wasn't with us. The guy that hit us didn't even stop. He just kept driving. I know the important thing is that we are okay. I know that cars can be fixed or replaced. But still, with all that we have going on, this is not what we needed.
The one silver lining today was this-
Miller's first bottle feeding!
He tolerated it very well. The nurse told us not to expect him to take it, that most babies don't get the suck-swallow-breathe thing down until the 36 week mark but Miller was a champ! He started off with 10 ccs in a bottle and did so well, they tried another 10 ccs. He only got halfway through the second round of milk before he got tired but we are so proud of him. He even burped twice! So now he can have 1 bottle a day and then he will move up to 2 bottles a day when he gets the hang of it. I really like the nurse on day shift today. She encourages me to be very active in Miller's care. Sometimes the nurses just do the things like take his temp, change his diaper, etc., but Keely always asks if I want to do them. And of course, I do! So today I took his temperature, then changed a very stinky diaper, changed the monitor on his foot that tracks his oxygen levels in his blood, gave him a bottle, and burped him. I loved every minute of it.
When we left the hospital this morning, Tom and I got into an accident. Some guy in a big truck hit our car and ran us off the side of the road, almost into a light pole. It tore our tires up and did some damage to our car. We were both okay and I am so glad that Declan wasn't with us. The guy that hit us didn't even stop. He just kept driving. I know the important thing is that we are okay. I know that cars can be fixed or replaced. But still, with all that we have going on, this is not what we needed.
The one silver lining today was this-
Miller's first bottle feeding!
He tolerated it very well. The nurse told us not to expect him to take it, that most babies don't get the suck-swallow-breathe thing down until the 36 week mark but Miller was a champ! He started off with 10 ccs in a bottle and did so well, they tried another 10 ccs. He only got halfway through the second round of milk before he got tired but we are so proud of him. He even burped twice! So now he can have 1 bottle a day and then he will move up to 2 bottles a day when he gets the hang of it. I really like the nurse on day shift today. She encourages me to be very active in Miller's care. Sometimes the nurses just do the things like take his temp, change his diaper, etc., but Keely always asks if I want to do them. And of course, I do! So today I took his temperature, then changed a very stinky diaper, changed the monitor on his foot that tracks his oxygen levels in his blood, gave him a bottle, and burped him. I loved every minute of it.
A little victory
The boys had their first eye exam this week and it went fantastic. The opthalmologist was surprised and very
pleased with their eyes. Both boys' eyes are far more developed than their gestational age (34 weeks) and they have no signs of eye disease!
Lucas had a stable night, thank goodness. Yesterday the day nurse, Becky (love her!), showed us some warning signs that she has picked up with Luke when he starts getting air leaks into his stomach. This is what is causing the sudden crashes. Since he has the TE fistula, not only can things go into his lungs from his stomach, but air can also go into his stomach from his lungs. They have his G-tube set on suction (which sparked a huge argument between the surgeons and neonatologists), but it is not getting the air out fast enough. So we look for signs like a swollen belly and they draw out more air with a syringe. Yesterday Becky told me she drew out over 1000 ccs of air. That is over a liter. So it is evident more than ever that he really needs to have this operation to fix the TE fistula.
Speaking of Becky, I wish this nurse could be here 24/7. She is wonderful. I can tell she loves her job and these babies. While she was on vacation last week, she still called everyday to check on Miller and Lucas. She is encouraging without being overbearing.
Here's hoping and praying for a good day today!
pleased with their eyes. Both boys' eyes are far more developed than their gestational age (34 weeks) and they have no signs of eye disease!
Lucas had a stable night, thank goodness. Yesterday the day nurse, Becky (love her!), showed us some warning signs that she has picked up with Luke when he starts getting air leaks into his stomach. This is what is causing the sudden crashes. Since he has the TE fistula, not only can things go into his lungs from his stomach, but air can also go into his stomach from his lungs. They have his G-tube set on suction (which sparked a huge argument between the surgeons and neonatologists), but it is not getting the air out fast enough. So we look for signs like a swollen belly and they draw out more air with a syringe. Yesterday Becky told me she drew out over 1000 ccs of air. That is over a liter. So it is evident more than ever that he really needs to have this operation to fix the TE fistula.
Speaking of Becky, I wish this nurse could be here 24/7. She is wonderful. I can tell she loves her job and these babies. While she was on vacation last week, she still called everyday to check on Miller and Lucas. She is encouraging without being overbearing.
Here's hoping and praying for a good day today!
Monday, May 27, 2013
And another step back
Yesterday morning around 3 a.m. we get a phone call from my parents (they were staying the night at the hospital) and then a nurse practitioner telling us to get down to the hospital fast. So Tom, Declan, and I hurried downtown. When we got there we were met by the doctor and told that for some unknown reason, Lucas had crashed suddenly. He received 3 epi shots and that got his heart rate up and they did some chest compression and got him stable again. The doctor told us that she could tell we had a tough little guy because he was fighting back and helping them out. And this morning around 4 a.m. we got the same phone call. Lucas had crashed again. This time they were able to get him stable with 1 epi shot.
We all ended up staying the rest of the night at LeBonheur. My parents, Tom, and Declan went home later and I stayed the rest of the day at the hospital. I talked to the doctors during rounds this morning and they said they don't think he is stable enough for surgery this week so it will be postponed until he recovers from this. My heart kind of sank because he was doing so well and now this. And he really needs this surgery to get any better. A lot of people have asked me what exactly Lucas has. He has a tracheoesophageal fistula (TE fistula), esophageal atresia, a small blood vessel between his right lung and heart, and he was born with a right lung that is about 1/2 the size it should be. The TE fistula is an abnormal connection between his trachea and esophagus. This is what's causing stuff to get into his lungs from his stomach. The surgeons will clip the fistula and repair it so that it separates the abnormal connection. Esophageal atresia is when the esophagus is basically an empty sac and doesn't connect to the stomach. He will have to have surgery to connect his esophagus to his stomach. They will most likely put weights in both the stomach and esophagus to stretch them closer to together and then connect them. He also has to have heart surgery to fix the small blood vessel between his heart and lung. It is very overwhelming thinking about all that Luke is facing.
I'm trying to stay positive through all of this, but sometimes it is just hard. I look at my little boy struggling through all of this and it just breaks my heart. It is every parent's nightmare seeing their child so sick and struggling. Some days I can be positive and some days the seriousness of it all just gets me down. I'm terrified. I would give anything in the world for my baby to be better. If I could give him my lung, I would cut it out of my own chest. I think a lot of people think that because there are improvements that everything is ok, but it isn't. He is very critical and the doctors remind us of this every day and always tell us the worst case scenario. I know they do this so that we aren't surprised by anything, but now I dread talking to the doctors because I'm afraid of what they are going to say.
For all of those that are praying for our babies, please pray specifically that Lucas gets stable enough for surgery. He needs this surgery to survive. It is a life saving procedure that needs to be done soon. Pray for the doctors and surgeons. And pray for twin brother Miller, that he keeps doing well. Miller is almost up to full feeds now and he is tolerating them well. He has had a couple of times where he has spit up, but those times are few and far between. If he continues to tolerate feedings well, he will try a bottle this week!
I'm trying to stay positive through all of this, but sometimes it is just hard. I look at my little boy struggling through all of this and it just breaks my heart. It is every parent's nightmare seeing their child so sick and struggling. Some days I can be positive and some days the seriousness of it all just gets me down. I'm terrified. I would give anything in the world for my baby to be better. If I could give him my lung, I would cut it out of my own chest. I think a lot of people think that because there are improvements that everything is ok, but it isn't. He is very critical and the doctors remind us of this every day and always tell us the worst case scenario. I know they do this so that we aren't surprised by anything, but now I dread talking to the doctors because I'm afraid of what they are going to say.
For all of those that are praying for our babies, please pray specifically that Lucas gets stable enough for surgery. He needs this surgery to survive. It is a life saving procedure that needs to be done soon. Pray for the doctors and surgeons. And pray for twin brother Miller, that he keeps doing well. Miller is almost up to full feeds now and he is tolerating them well. He has had a couple of times where he has spit up, but those times are few and far between. If he continues to tolerate feedings well, he will try a bottle this week!
Thursday, May 23, 2013
1 month old!
I'm a day late in posting this. Our little twinkies turned 1 month old yesterday! I can't believe it's been a whole month already.
Lucas,
You are a whole month old now! You have overcome so much in your first month. You had a surgery when you were less than 24 hours old and were a champ! You have showed us just how much of a fighter you are. All the nurses and doctors at LeBonheur tell me you are such a fighter. You have more spirit and strength than anyone I know! Right now you weigh about 4 lbs, although some of that is swelling from fluids.
You are wearing a size XS-Preemie diaper, which surprisingly isn't the smallest diaper they have. Mommy and Daddy still haven't gotten to hold you yet, but Mommy got to take your temperature under your arm. You are currently on a regular ventilator at 30% oxygen, which is a big improvement from last week. Sometimes when we talk to you, you wiggle your little hands and feet and open your eyes. It completely melts our hearts! We are so proud of you little man! We love you so much!
Miller,
You are one month old baby boy! You are such a funny and cute little guy. In the past month you have shown us your feisty and adorable little personality. You have no problem letting us know when you don't like something. Your biggest annoyance is getting your diaper changed. You don't like this at all! You love to sleep all stretched out with your arms above your head. You look just like your daddy when you sleep! You had NEC but a round of antibiotics has cleared that up and now you are eating like a champ. You absolutely love your pacifier and if it's not in your incubator you try to chew on anything that's around you. You are notorious for trying to pull your feeding tube out. You are in size XS-Preemie diapers. You weigh 3 lbs 15 oz. We love you, little fiesty man!
Lucas,
You are a whole month old now! You have overcome so much in your first month. You had a surgery when you were less than 24 hours old and were a champ! You have showed us just how much of a fighter you are. All the nurses and doctors at LeBonheur tell me you are such a fighter. You have more spirit and strength than anyone I know! Right now you weigh about 4 lbs, although some of that is swelling from fluids.
You are wearing a size XS-Preemie diaper, which surprisingly isn't the smallest diaper they have. Mommy and Daddy still haven't gotten to hold you yet, but Mommy got to take your temperature under your arm. You are currently on a regular ventilator at 30% oxygen, which is a big improvement from last week. Sometimes when we talk to you, you wiggle your little hands and feet and open your eyes. It completely melts our hearts! We are so proud of you little man! We love you so much!
Miller,
You are one month old baby boy! You are such a funny and cute little guy. In the past month you have shown us your feisty and adorable little personality. You have no problem letting us know when you don't like something. Your biggest annoyance is getting your diaper changed. You don't like this at all! You love to sleep all stretched out with your arms above your head. You look just like your daddy when you sleep! You had NEC but a round of antibiotics has cleared that up and now you are eating like a champ. You absolutely love your pacifier and if it's not in your incubator you try to chew on anything that's around you. You are notorious for trying to pull your feeding tube out. You are in size XS-Preemie diapers. You weigh 3 lbs 15 oz. We love you, little fiesty man!
Tuesday, May 21, 2013
A good week
Overall we have all had a pretty good week. Lucas has been able to stop taking a lot of medicines (he was on 14 different IV lines of meds last week... The most his nurse had ever seen was 16), his blood gases have been excellent, x-rays are looking slightly better, and he is now weened off the nitric oxide. His swelling has gone down a little bit too. They weighed him on Friday and he weighed 4 and 1/2 lbs. Most of that was swelling from fluids. They estimated his dry weight to be around a little over 3 lbs. Right now the plan is to get him weened down on his oxygen, recover from the lung burst and barium in his right lung, and gain weight (he is getting a new TPN with more calories). One of his chest tubes randomly came out on its own yesterday. They did an x-ray and determined that his lung was healing fine without both chest tubes so they left it out.
Little Miller man is doing very well. He had an x-ray and it looks like the NEC has cleared up and he will be starting feedings of milk again today. He has to get a blood transfusion this afternoon. I was a little worried when the nurse called us to ask for our consent for the blood transfusion, but she assured us that nothing was wrong and that it was mainly to help him feel better and give him a little boost. So after his blood transfusion, he will start off very slowly on milk feedings. The first one will only be 2cc but they will gradually increase the amount over the week and hopefully by this weekend he will be taking a bottle. Some of the nurses even think he may get to come home next month. I'm trying not to get my hopes up but it's exciting to think about. It will be so bittersweet though since Lucas will be in the NICU for a while. He still has at least 2 surgeries ahead of him- a heart surgery and surgery to repair his esophagus.
This has got me thinking lately that we need to buckle down and start buying all the things we never got a chance to buy before the twins were born. I have exactly 2 preemie outfits. I didn't save very many of Declan's newborn outfits either so I am going to have to shop for preemie/newborn clothes. Luckily we got the biggies- a double stroller and new car seats. Now we just have to stock up on diapers and things like that. At Target the other day, the cashier asked me if we would like some coupons for diapers and I was like, "You have no idea how many diapers we will be going through soon."
The boys are overall having a better week. I, on the other hand, am having a worse week, physically. I was doing fine last week and all of a sudden my belly got really tender and sore. Tom says I'm trying to do too much and not resting enough. I have had such a different recovery with this c-section. I've experienced both ways of having a baby and I am having a much more difficult recovery this time. I apparently have developed an allergy to penicillin recently. I took an antibiotic this morning and a few minutes later my throat starting closing up, I started itching like crazy, and I was having problems breathing. Luckily, it went away after a few minutes but it was scary! I called the nurse line at my doctor's office and she said the same thing happened to her after her pregnancy. I was told not to take penicillin anymore. Another weird thing that has happened after this pregnancy is that my hair has gone nuts. It is seriously a completely different texture. I'm so tempted to just cut it all off but I always regret it when I do. Pregnancy has taken such a toll on my body.
Say a prayer that the improvements keep coming! We are hoping for more and more good days!
Little Miller man is doing very well. He had an x-ray and it looks like the NEC has cleared up and he will be starting feedings of milk again today. He has to get a blood transfusion this afternoon. I was a little worried when the nurse called us to ask for our consent for the blood transfusion, but she assured us that nothing was wrong and that it was mainly to help him feel better and give him a little boost. So after his blood transfusion, he will start off very slowly on milk feedings. The first one will only be 2cc but they will gradually increase the amount over the week and hopefully by this weekend he will be taking a bottle. Some of the nurses even think he may get to come home next month. I'm trying not to get my hopes up but it's exciting to think about. It will be so bittersweet though since Lucas will be in the NICU for a while. He still has at least 2 surgeries ahead of him- a heart surgery and surgery to repair his esophagus.
This has got me thinking lately that we need to buckle down and start buying all the things we never got a chance to buy before the twins were born. I have exactly 2 preemie outfits. I didn't save very many of Declan's newborn outfits either so I am going to have to shop for preemie/newborn clothes. Luckily we got the biggies- a double stroller and new car seats. Now we just have to stock up on diapers and things like that. At Target the other day, the cashier asked me if we would like some coupons for diapers and I was like, "You have no idea how many diapers we will be going through soon."
The boys are overall having a better week. I, on the other hand, am having a worse week, physically. I was doing fine last week and all of a sudden my belly got really tender and sore. Tom says I'm trying to do too much and not resting enough. I have had such a different recovery with this c-section. I've experienced both ways of having a baby and I am having a much more difficult recovery this time. I apparently have developed an allergy to penicillin recently. I took an antibiotic this morning and a few minutes later my throat starting closing up, I started itching like crazy, and I was having problems breathing. Luckily, it went away after a few minutes but it was scary! I called the nurse line at my doctor's office and she said the same thing happened to her after her pregnancy. I was told not to take penicillin anymore. Another weird thing that has happened after this pregnancy is that my hair has gone nuts. It is seriously a completely different texture. I'm so tempted to just cut it all off but I always regret it when I do. Pregnancy has taken such a toll on my body.
Say a prayer that the improvements keep coming! We are hoping for more and more good days!
Saturday, May 18, 2013
Family pictures
My good friend Sonya gave us a priceless baby gift- professional pictures of our family. She came down to the hospital and took beautiful pictures of the twins, Declan, and us. She is an amazing photographer and has taken pictures for us on several occasions (including my maternity pics when I was pregnant with Declan and some pictures to send to Tom when he was on deployment). Thank you Sonya (Sonya Balentine Photography) for the sweet pictures of our family.
Tuesday, May 14, 2013
Our boys are tough little guys
Over the past few days we have had a few more setbacks with Lucas, but he has also made some improvements. His kidneys are working again and his urine output is now pretty good. Sunday night was another rough one. His left lung burst and he had to have a chest tube put in to relieve some of the pressure. They said his lung can heal but it will take some time. The doctor is still not hopeful for Luke. He thinks he only has a few days left, but we're not giving up on our little boy. We are going to keep fighting for him.
I sat down beside my precious Lucas and told him that we have been through so much together during the pregnancy and I will be there by his side through this too. He is truly a part of me. I always tell him that he has more spirit and strength than any person I've ever known. Probably one of the most endearing and sweetest moments of motherhood for me happened a couple of days ago when, as I was talking to Luke, he opened his eyes and started wiggling his arms and feet. He knew his mommy was talking to him and it warmed my heart so much for him to respond to my voice.
Miller is responding very well to the antibiotics for the NEC. Hopefully he will be back on milk feedings by the weekend. They will start very slow and work back up. Miller is such a funny little guy. All the nurses talk about what a feisty little boy he is. He hates getting his diaper changed and bath time and is not afraid to let you know that he is not happy. He loves his pacifier and will try to use anything he can as a paci if his is not nearby. Today we caught him pulling out his oxygen tubes from his nose to try to use as a paci.
Declan learned a new word this week- brother. Or bru-ba as he says when he is around the twins. It is so sweet to hear D say bru-ba. I can already tell he is going to be a great big brother.
It's hard to believe that this sweet little guys have only been in our lives for 3 weeks. It feels like they have always been here. They are so much a part of us and I love my sweet family so much.
I sat down beside my precious Lucas and told him that we have been through so much together during the pregnancy and I will be there by his side through this too. He is truly a part of me. I always tell him that he has more spirit and strength than any person I've ever known. Probably one of the most endearing and sweetest moments of motherhood for me happened a couple of days ago when, as I was talking to Luke, he opened his eyes and started wiggling his arms and feet. He knew his mommy was talking to him and it warmed my heart so much for him to respond to my voice.
Miller is responding very well to the antibiotics for the NEC. Hopefully he will be back on milk feedings by the weekend. They will start very slow and work back up. Miller is such a funny little guy. All the nurses talk about what a feisty little boy he is. He hates getting his diaper changed and bath time and is not afraid to let you know that he is not happy. He loves his pacifier and will try to use anything he can as a paci if his is not nearby. Today we caught him pulling out his oxygen tubes from his nose to try to use as a paci.
Declan learned a new word this week- brother. Or bru-ba as he says when he is around the twins. It is so sweet to hear D say bru-ba. I can already tell he is going to be a great big brother.
It's hard to believe that this sweet little guys have only been in our lives for 3 weeks. It feels like they have always been here. They are so much a part of us and I love my sweet family so much.
Thursday, May 9, 2013
A long night
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.
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.
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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