Tuesday, October 1, 2013
Night Walk
We love our neighborhood! Wetlands and lagoon make for a fun family walk and inspiration for coloring.
Friday, September 27, 2013
Luke Thomas Turns 1
Okay, so I obviously haven't blogged in awhile...hopefully now that we are getting settled in Florida, I will keep up better again. There is alot to update you on, but for today, I am going to focus on and celebrate LUKE!
As I reflected this week about Luke's birthday, I was reminded by my sister how different Luke's "birth day" was from most. On birthdays, we usually reflect on the joy experienced as our newborn finally enters the world, after much anticipation. This week, as we remembered Luke's birth, it brought back so many emotions that I had to decipher them all again and remember that today is ultimately a day to celebrate! I want to share Luke's story because I want everyone to know that he is a miracle from God, and even though he has been closer to death than most of us will ever come (until actual death), God saved him. God SAVED him...I don't know the how or why, but I am filled with eternal gratitude, and will share Luke's story as much as I can, with hope that it may bring one person one step closer to knowing Christ. It has been a difficult year, and I hope and pray that our family doesn't have to endure trials like that again for a long time. But through it all, God was with us. Here is a brief recap of our life last year:
A year ago today, I had been on hospital bedrest for 28 days and had an ultrasound before 6am. The ultrasound confirmed what we expected: my amniotic fluid was low again and Luke was going to be born today. Andy was planning to get Eli on the bus and drop Jordan and Drew off with a friend before coming to the hospital. They scheduled my c-section for 11:00 am, but by 9am they were "prepping me" for an emergency c-section because Luke was showing signs of distress. Andy wasn't there yet, but was on his way. I remember thinking that maybe we waited too long to get him out. It was such a constant internal struggle to determine if he was better off in utero for longer, or if he needed to come out. Andy made it as they were rolling me into the OR and was there to welcome our little 3lb 5oz miracle into the world. It wasn't the wonderful, joyous entrance into the world that parents imagine. It took the staff awhile to get Luke intubated, and he was struggling. It wasn't the first time we would pray for him to live, and it wouldn't be the last.
Since he was born, Luke has spent 79 days in the hospital (NICU and PICU combined). It has been a rough year for sure, which is why we are celebrating so much today. We wondered many times if his first birthday would be a time of joy or sorrow. We have known both. We thank God everyday that this day is one of JOY for us. I am thankful for every moment I am able to rock him, play with him, feed him, make him laugh, and so much more. I took time to jog to the ocean this morning, and saw a nun on the boardwalk. I love the creative ways that God shows me that He is always with us, helping us through our struggles and celebrating with us in our joy.
We couldn't love Luke more, and have had a great day celebrating (with more fun tomorrow). Grandpa and GG arrived from Indiana, and the cards, gifts and well wishes have been coming in all week. Thanks to each of you and so many more who had a role in our lives this past year. We are eternally grateful. As his older siblings say, "cutie" melts our hearts daily and completes our family perfectly. HAPPY 1ST BIRTHDAY LUKE THOMAS!!
Fun Luke Facts:
Weight: 18 lbs (on the scale with me this morning)
Favorites: those baby puffs, chewing on everything, laughing at his older siblings, bathtime, jumping like crazy in his jumperoo, mirrors, and of course, his Mama
He has 7 teeth; says dadadada, and a few other sounds sometimes; he claps and waves; sits up well on his own, even reaching for toys without falling, likes to stand for short times alone, and just this week started the motion of steps when standing.
He does NOT sleep through the night; still loves his animal pacifiers, takes 2 naps a day, can fall asleep anywhere if being held my Mommy and tired enough, has bright blue eyes that people comment on when they meet him all the time.
Still is on a pulsoximeter and heart monitor at night, and still on his pulmonary hypertension medication. He drinks soy formula and eats baby food, plus some table foods (pancakes, cheerios, toast, and more).
He cries often when Mommy walks out of the room and he still has a temper, even though his demeanor has mellowed out tremendously and he is more flexible than when he first came home from the PICU.
As I reflected this week about Luke's birthday, I was reminded by my sister how different Luke's "birth day" was from most. On birthdays, we usually reflect on the joy experienced as our newborn finally enters the world, after much anticipation. This week, as we remembered Luke's birth, it brought back so many emotions that I had to decipher them all again and remember that today is ultimately a day to celebrate! I want to share Luke's story because I want everyone to know that he is a miracle from God, and even though he has been closer to death than most of us will ever come (until actual death), God saved him. God SAVED him...I don't know the how or why, but I am filled with eternal gratitude, and will share Luke's story as much as I can, with hope that it may bring one person one step closer to knowing Christ. It has been a difficult year, and I hope and pray that our family doesn't have to endure trials like that again for a long time. But through it all, God was with us. Here is a brief recap of our life last year:
A year ago today, I had been on hospital bedrest for 28 days and had an ultrasound before 6am. The ultrasound confirmed what we expected: my amniotic fluid was low again and Luke was going to be born today. Andy was planning to get Eli on the bus and drop Jordan and Drew off with a friend before coming to the hospital. They scheduled my c-section for 11:00 am, but by 9am they were "prepping me" for an emergency c-section because Luke was showing signs of distress. Andy wasn't there yet, but was on his way. I remember thinking that maybe we waited too long to get him out. It was such a constant internal struggle to determine if he was better off in utero for longer, or if he needed to come out. Andy made it as they were rolling me into the OR and was there to welcome our little 3lb 5oz miracle into the world. It wasn't the wonderful, joyous entrance into the world that parents imagine. It took the staff awhile to get Luke intubated, and he was struggling. It wasn't the first time we would pray for him to live, and it wouldn't be the last.
Since he was born, Luke has spent 79 days in the hospital (NICU and PICU combined). It has been a rough year for sure, which is why we are celebrating so much today. We wondered many times if his first birthday would be a time of joy or sorrow. We have known both. We thank God everyday that this day is one of JOY for us. I am thankful for every moment I am able to rock him, play with him, feed him, make him laugh, and so much more. I took time to jog to the ocean this morning, and saw a nun on the boardwalk. I love the creative ways that God shows me that He is always with us, helping us through our struggles and celebrating with us in our joy.
We couldn't love Luke more, and have had a great day celebrating (with more fun tomorrow). Grandpa and GG arrived from Indiana, and the cards, gifts and well wishes have been coming in all week. Thanks to each of you and so many more who had a role in our lives this past year. We are eternally grateful. As his older siblings say, "cutie" melts our hearts daily and completes our family perfectly. HAPPY 1ST BIRTHDAY LUKE THOMAS!!
Fun Luke Facts:
Weight: 18 lbs (on the scale with me this morning)
Favorites: those baby puffs, chewing on everything, laughing at his older siblings, bathtime, jumping like crazy in his jumperoo, mirrors, and of course, his Mama
He has 7 teeth; says dadadada, and a few other sounds sometimes; he claps and waves; sits up well on his own, even reaching for toys without falling, likes to stand for short times alone, and just this week started the motion of steps when standing.
He does NOT sleep through the night; still loves his animal pacifiers, takes 2 naps a day, can fall asleep anywhere if being held my Mommy and tired enough, has bright blue eyes that people comment on when they meet him all the time.
Still is on a pulsoximeter and heart monitor at night, and still on his pulmonary hypertension medication. He drinks soy formula and eats baby food, plus some table foods (pancakes, cheerios, toast, and more).
He cries often when Mommy walks out of the room and he still has a temper, even though his demeanor has mellowed out tremendously and he is more flexible than when he first came home from the PICU.
Friday, May 10, 2013
Thursday, April 11, 2013
Tuesday, March 19, 2013
Are They Twins? Yes...and No
Today is the 4th Anniversary of our sweet Brady's death. So much has happened in those 4 years, but it is a day that Andy and I will remember vividly forever. We had decided the previous day to have Brady baptized (not because we thought he needed it to enter Heaven, but as a wonderful way to celebrate his short life before he died) and then to remove him from the ventilator that was breathing for him. Pastor Mark, and many of our family were able to be there that day and we video taped his baptism. I usually watch it today every year, and will again as time permits later today. After he was baptized, our family went to the waiting room, and the medical staff helped us get Brady unhooked from all of his machines. They used a bag to keep him breathing so that we could go to a private room and Andy could hold him before he passed away. I had the honor of holding him once during Kangaroo Care before he got his infection. Once we were in the room, they unhooked the bag and gave him some extra pain medicine, because I insisted that I did not want him to suffer at all before he died. He only lived for a few minutes, and it was awful, and wonderful all at the same time. After Andy and I said goodbye to him, we dressed and wrapped him in a tiny blue blanket, and let Eli come in and see him. He reacted like any 2 year old-with interest for about a second. :) Then, other family who wanted to, came in to hold him and say their goodbyes. We did footprints and bathed him off afterwards, and I will forever cherish that time with him. It was so hard to let them take him, but thankfully, God, in His grace and mercy, gave us two other blessings who needed our care and attention (3 counting Eli)!
We truly felt then, and still do today, that God saved Brady's life long enough for Jordan and Drew to be the healthy, happy kids they are today. He also answered our prayers. He always does. While we prayed for his miraculous healing and for time here on Earth, we also prayed for Brady to not have a life of pain and suffering. God healed him by taking him to Heaven, and it is with HOPE that we await getting to see him again. That is what Easter is about. The hope that was created through Jesus' death and resurrection.
When people ask if Jordan and Drew are twins, we all usually say "yes". Because for all practical reasons, they are. They will grow up together, in the same class, be the same age, and people will notice that. So, when someone in the grocery store asks if they are twins, I say that they are. But sometimes, when I know that I am meeting someone who is going to be a part of our lives in some way, I reply, "Well, they are actually surviving triplets." That allows me to share Brady's story with them, so that he is remembered and his story can still bring someone to Christ, through the help of the Holy Spirit. During my quiet reflection time this morning (while rocking Luke), I imagined Jordan and Drew when they are older. They go on a first date, and as they sit in a restaurant talking and getting to know their love interest, they share Brady's story and share what a huge part of our life he was and is. He will never be forgotten, and while we do not understand it all, we do trust that God is in control. He healed Brady one way, and Luke in another. Andy and I are forever thankful for both of these sons; for the time we got with Brady, and continue to get to spend with Luke.
We truly felt then, and still do today, that God saved Brady's life long enough for Jordan and Drew to be the healthy, happy kids they are today. He also answered our prayers. He always does. While we prayed for his miraculous healing and for time here on Earth, we also prayed for Brady to not have a life of pain and suffering. God healed him by taking him to Heaven, and it is with HOPE that we await getting to see him again. That is what Easter is about. The hope that was created through Jesus' death and resurrection.
When people ask if Jordan and Drew are twins, we all usually say "yes". Because for all practical reasons, they are. They will grow up together, in the same class, be the same age, and people will notice that. So, when someone in the grocery store asks if they are twins, I say that they are. But sometimes, when I know that I am meeting someone who is going to be a part of our lives in some way, I reply, "Well, they are actually surviving triplets." That allows me to share Brady's story with them, so that he is remembered and his story can still bring someone to Christ, through the help of the Holy Spirit. During my quiet reflection time this morning (while rocking Luke), I imagined Jordan and Drew when they are older. They go on a first date, and as they sit in a restaurant talking and getting to know their love interest, they share Brady's story and share what a huge part of our life he was and is. He will never be forgotten, and while we do not understand it all, we do trust that God is in control. He healed Brady one way, and Luke in another. Andy and I are forever thankful for both of these sons; for the time we got with Brady, and continue to get to spend with Luke.
Sunday, March 17, 2013
God's Healing Touch
The three big kids and I went to church for the first time I a long time on Friday night. Since Luke has been home, we have really limited our exposure to the germs of the outside world. But as Luke gets older, stronger and healthier, we are able to do some of the things we love once again. Yes, church is one of them. We LOVE our church home at Acts 2 UMC. When Luke first came home and was in the hospital, Eli would get upset when he had to miss church and would ask us each week if we could go.
It was wonderful to worship God again! It always renews my soul. This weekend, the sermon was (and is for those reading this today), about healing. God's ability to heal anything. Our job is to pray for healing and accept that we do not and should not understand the how or why of who God heals and who he doesn't. The other point I want to share is that it isn't related to "how much faith you have". People of little or no faith have been healed throughout history, and saints and disciples of Christ have not.
On Friday night, those who wanted to could kneel and ask for specific healing after communion. We all went and knelt together. Eli asked for "Luke's veins" (meaning lungs) to be healed. We also asked for the kids' allergies and Jordan and Drew's asthma to be healed. They get weekly allergy shots and we all would love to be done with them! I asked for healing of my endometriosis so that I don't need surgery in the future.
Our prayers for Luke have been answered!! I know god has been healing his body completely since he got sick in December, but He answered our specific healing prayer this weekend. LAST NIGHT, LUKE WENT ALL NIGHT WITHOUT NEEDING ANY SUPPLEMENTAL OXYGEN!! Not only did he keep his oxygen levels up while he slept, they actually are staying higher than they have ever been, even when he is awake! Praise God and thank you from all or us!!!!
It was wonderful to worship God again! It always renews my soul. This weekend, the sermon was (and is for those reading this today), about healing. God's ability to heal anything. Our job is to pray for healing and accept that we do not and should not understand the how or why of who God heals and who he doesn't. The other point I want to share is that it isn't related to "how much faith you have". People of little or no faith have been healed throughout history, and saints and disciples of Christ have not.
On Friday night, those who wanted to could kneel and ask for specific healing after communion. We all went and knelt together. Eli asked for "Luke's veins" (meaning lungs) to be healed. We also asked for the kids' allergies and Jordan and Drew's asthma to be healed. They get weekly allergy shots and we all would love to be done with them! I asked for healing of my endometriosis so that I don't need surgery in the future.
Our prayers for Luke have been answered!! I know god has been healing his body completely since he got sick in December, but He answered our specific healing prayer this weekend. LAST NIGHT, LUKE WENT ALL NIGHT WITHOUT NEEDING ANY SUPPLEMENTAL OXYGEN!! Not only did he keep his oxygen levels up while he slept, they actually are staying higher than they have ever been, even when he is awake! Praise God and thank you from all or us!!!!
Tuesday, March 5, 2013
Happy Birthday Times 3!
I can't believe that it's been 4 years since I was in the hospital on bedrest carrying triplets!! Tomorrow, I have the joy of hugging Jordan and Drew and smothering them with kisses to celebrate their special day. Their Daddy will be home on Friday, and I am sure he will do the same. We also will light a candle and sing Happy Birthday to our Brady Thomas, who we remember and talk about often at our house. All of the kids mention him more around this time of year, and even more so this year because of Luke Thomas' birth and near death episode in December. Drew asked me at bedtime recently if Brady was still a baby in Heaven, or if he was older like him. Eli has shared how sad he is that he doesn't get to play with him. Jordan talks about how she can't wait to see her triplet brother when she gets to Heaven. Eli even asked what day we could watch "Brady's video", which is a slideshow of photos put to music that we played at his Memorial Service, and which we watch every year on the anniversary of his death. These are the ways we celebrate him and it warms my heart when I hear my children talk about him so openly.
We have been blessed beyond measure! The kids are being spoiled rotten by having several birthday celebrations. One on Sunday so that Grandpa and GG could be part of it, dinner out tomorrow night, and then with Daddy this weekend. All if the kids really have grown up so much the last 6 months, and we are so proud of them and so thankful that God chose us to be their parents!! I have lots of fun photos to share, but that will have to be later because its time to sleep in our house. Being a Mommy to these 4 kids is awesome and exhausting! :)
We have been blessed beyond measure! The kids are being spoiled rotten by having several birthday celebrations. One on Sunday so that Grandpa and GG could be part of it, dinner out tomorrow night, and then with Daddy this weekend. All if the kids really have grown up so much the last 6 months, and we are so proud of them and so thankful that God chose us to be their parents!! I have lots of fun photos to share, but that will have to be later because its time to sleep in our house. Being a Mommy to these 4 kids is awesome and exhausting! :)
Monday, February 18, 2013
Thursday, February 14, 2013
Happy 6th Birthday Eli!
Sunday, January 27, 2013
Blessings Abound
Luke has been home from the hospital for 10 days now and is doing wonderful. The older kids continue to adore him, and he looks with interest at their wild activities and sleeps through their noise. Life is good. We are blessed! It's not easy, but it's our journey and we are grateful to be on it with these gifts God has given us.
Today is Luke's 4 month and my Dad's 60th birthday! It is also a day in which many went to show their love and support to our family because of my Grandma Templeton's passing. Tomorrow morning is her funeral, and we were not able to travel to go to it because of Luke's health. Even though we have been an Air Force family for 14 years now, we have managed to make it back to Indiana for most major family events. It breaks my heart not to be there to hug my family and be a part of my Grandma's funeral, but I know it is the right thing to stay here, and I know she would understand. She is looking down on us from Heaven, so she has gotten to meet Luke and is also with our son, Brady. That gives me peace. I will always remember her and our special time together, especially as I drink hot tea and carry on her traditional baked apples recipe each Christmas.
Today is a big day at our house for other reasons too. Andy is resuming his training tomorrow, and I am left here to hold down the fort. I should be sleeping now, I know, but I am a bit nervous to sleep. I am letting God guide and help me during my times of anxiety, and He is showing me the way for sure! I have been doing much better emontionally than I expected being home. I have been able to leave the house a couple times for errands and let Luke be cared for by others (Andy and Ms DiAnn). I am able to do housework and play with the older kids without worrying about Luke. The monitors and oxygen have helped to give me more peace of mind that he is okay. I am beyond grateful that Luke is home, healthy, and most importantly, still here. I can't say it enough. Praise God for answering our prayers!!
Today is Luke's 4 month and my Dad's 60th birthday! It is also a day in which many went to show their love and support to our family because of my Grandma Templeton's passing. Tomorrow morning is her funeral, and we were not able to travel to go to it because of Luke's health. Even though we have been an Air Force family for 14 years now, we have managed to make it back to Indiana for most major family events. It breaks my heart not to be there to hug my family and be a part of my Grandma's funeral, but I know it is the right thing to stay here, and I know she would understand. She is looking down on us from Heaven, so she has gotten to meet Luke and is also with our son, Brady. That gives me peace. I will always remember her and our special time together, especially as I drink hot tea and carry on her traditional baked apples recipe each Christmas.
Today is a big day at our house for other reasons too. Andy is resuming his training tomorrow, and I am left here to hold down the fort. I should be sleeping now, I know, but I am a bit nervous to sleep. I am letting God guide and help me during my times of anxiety, and He is showing me the way for sure! I have been doing much better emontionally than I expected being home. I have been able to leave the house a couple times for errands and let Luke be cared for by others (Andy and Ms DiAnn). I am able to do housework and play with the older kids without worrying about Luke. The monitors and oxygen have helped to give me more peace of mind that he is okay. I am beyond grateful that Luke is home, healthy, and most importantly, still here. I can't say it enough. Praise God for answering our prayers!!
Thursday, January 17, 2013
Going Home!
Today marks 5 weeks that Luke has been here at OU Children's Hospital. He has improved so much, and has won over the hearts of so many with his infectious smiles!! We are beyond grateful to God for saving his life and allowing us to go on this journey together. We are thankful to all He has provided to help us get through this time-from the firefighter who intubated Luke, to the doctors, nurses, and respitory therapists who helped get him well, to all of you praying for and thinking of us.
We are happy to announce that Luke is getting discharged from the hospital today!!! He will go home on oxygen for awhile to help his lungs get stronger and hopefully keep him from having anymore pulmonary hypertension episodes. He has taken his bottles by mouth for over 24 hours, so we get to take his NG tube out and leave it here!
As you can imagine, everyone at our house is very excited to be together again. We appreciate your continued prayers.
We are happy to announce that Luke is getting discharged from the hospital today!!! He will go home on oxygen for awhile to help his lungs get stronger and hopefully keep him from having anymore pulmonary hypertension episodes. He has taken his bottles by mouth for over 24 hours, so we get to take his NG tube out and leave it here!
As you can imagine, everyone at our house is very excited to be together again. We appreciate your continued prayers.
Friday, January 11, 2013
Extubated!
We want to share the news that Luke got extubated (taken off the ventilator) on Tuesday afternoon!! After my last post, we had some rough patches, related to withdrawal from some of his narcotics, and because of gas/constipation/tummy problems. However, it all got resolved and on Monday, they turned his ventilator down so that he was doing all of the work again. They left it like that all day and night, and Luke did great. So, on Tuesday, Andy and I agreed with the doctors that Luke was ready. I must admit that as much as I have been looking forward to this day, I really was anxious about it instead of excited. My Mama Bear instincts made it hard to stand there and watch Luke cry and struggle for an hour before they gave him some morphine to help calm him down. I kept telling Luke (and myself) that it was all going to be worth it, and it was! He didn't have the best blood gas numbers (ph and carbon dioxide) for a few hours, so they wouldn't let me hold him because he wasn't stable enough. He looked good clinically (his oxygen level, respitory and heart rates), so they just gave him some time. When the night shift came on, I asked AGAIN about holding him and they let me. And low and behold, his next blood gas numbers were perfect!! I made sure the staff knew what the change was that made the difference (according to me, of course), so they would consider allowing a mother to hold her baby sooner next time. The doctor jokingly told me that I was here as a mom and not a Child Life Specialist. :) I hadn't told this group of doctors that's what I did, so I guess word got around. While I am on this topic, I want to commend the medical staff for doing such an amazing job caring for Luke and keeping this very attentive Mama in the know. Overall, it has been surprising to me how involved they have let us be in the rounds each morning, and with decisions regarding Luke's care.
Anyway, back to our little miracle. Today, he is on the lowest setting of his high flow oxygen, so he should get switched to just a nasal cannula later today. Once he is only on that, we are ready to leave the PICU and go to another room on the regular unit. It is a step in the right direction, but I will definitely miss the staff and protection of the locked doors here in the PICU. I just want to cover Luke up or put him in a bubble when we go in the hallway to transfer rooms because so many patients have RSV and Luke doesn't! I do NOT want to have to come back and do this again, or stay longer because of someone sharing their cough and germs with us.
The last couple of nights have seemed very long. Luke had a few episodes of intense withdrawal from his fentanyl and versed, as show by his heart rate in the 200's and tremors. It was so hard for me to watch, but they gave what they call "rescue doses" of morphine a couple times to help him through it. He is still on Methadone and Valium, which will slowly be tapered off, but not before we go home. He will have to start taking his bottles again before we can go home. He is just very tired from working so hard to breathe, and his muscles are weak from not being used in a month. He took small amounts yesterday from a bottle twice, and took half of his noon bottle today. I asked for a speech therapy consultation, so they should be by today. I feel like he will catch on again for sure, but don't know how long it will be before he has the stamina to take all of his bottles.
As for the rest of the family, they are doing okay. Eli went back to school this week, and did much better than expected getting up and ready for the bus. Andy doesn't feel well, so he has stayed home with them the past couple of days. He did bring the kids and dinner up to the hospital on Wednesday night. All the kids came back and saw Luke and then I took them to the waiting room and we played while Andy held Luke. (This was before Andy had his sore throat, and he had a mask on the whole time)!
We have met so many families on this journey who are going through the same, or even more stressful situations. We try to encourage and support them as we are able to. There are parents who have been away from their other kids for weeks because they live far away, and parents who have been in and out of here for years with their chronically ill child. And, unfortunately, some parents who had to leave without their child because they didn't win the battle. We pray for them, and ask you to also. We are fully aware of how different this could have gone, and are grateful to God for his mercy and love for us. We know He loves every single child here (and adults too), and we don't pretend to understand the reason that some children live and some die. We just remain faithful and thankful that our prayers were answered in this way, and that Luke will be coming home with us soon. So far, it seems like this past month hasn't had any negative affect on his brain development. Only time will tell for sure, but he sure seems like the smiley, interactive baby that I knew before this happened. And, no matter what, we love and adore him unconditionally, and are beyond thrilled that he is doing so well!
Anyway, back to our little miracle. Today, he is on the lowest setting of his high flow oxygen, so he should get switched to just a nasal cannula later today. Once he is only on that, we are ready to leave the PICU and go to another room on the regular unit. It is a step in the right direction, but I will definitely miss the staff and protection of the locked doors here in the PICU. I just want to cover Luke up or put him in a bubble when we go in the hallway to transfer rooms because so many patients have RSV and Luke doesn't! I do NOT want to have to come back and do this again, or stay longer because of someone sharing their cough and germs with us.
The last couple of nights have seemed very long. Luke had a few episodes of intense withdrawal from his fentanyl and versed, as show by his heart rate in the 200's and tremors. It was so hard for me to watch, but they gave what they call "rescue doses" of morphine a couple times to help him through it. He is still on Methadone and Valium, which will slowly be tapered off, but not before we go home. He will have to start taking his bottles again before we can go home. He is just very tired from working so hard to breathe, and his muscles are weak from not being used in a month. He took small amounts yesterday from a bottle twice, and took half of his noon bottle today. I asked for a speech therapy consultation, so they should be by today. I feel like he will catch on again for sure, but don't know how long it will be before he has the stamina to take all of his bottles.
As for the rest of the family, they are doing okay. Eli went back to school this week, and did much better than expected getting up and ready for the bus. Andy doesn't feel well, so he has stayed home with them the past couple of days. He did bring the kids and dinner up to the hospital on Wednesday night. All the kids came back and saw Luke and then I took them to the waiting room and we played while Andy held Luke. (This was before Andy had his sore throat, and he had a mask on the whole time)!
We have met so many families on this journey who are going through the same, or even more stressful situations. We try to encourage and support them as we are able to. There are parents who have been away from their other kids for weeks because they live far away, and parents who have been in and out of here for years with their chronically ill child. And, unfortunately, some parents who had to leave without their child because they didn't win the battle. We pray for them, and ask you to also. We are fully aware of how different this could have gone, and are grateful to God for his mercy and love for us. We know He loves every single child here (and adults too), and we don't pretend to understand the reason that some children live and some die. We just remain faithful and thankful that our prayers were answered in this way, and that Luke will be coming home with us soon. So far, it seems like this past month hasn't had any negative affect on his brain development. Only time will tell for sure, but he sure seems like the smiley, interactive baby that I knew before this happened. And, no matter what, we love and adore him unconditionally, and are beyond thrilled that he is doing so well!
Friday, January 4, 2013
2013 is Luke's Year!
So sorry for all of you who aren't connected to us through Facebook. I tend to type a lot when I blog, so I end up just putting a short update on FB because I am so tired when I get to bed.
Our latest news is that Luke is doing great! After slowly weaning him from the nitric oxide, he has begun weaning on his ventilator rather quickly. We joke that it was because the doctor mentioned that we should be prepared for Luke to need a tracheotomy. However, if he continues to wean from the vent like he has the last few days, we won't need to do that! Today (Saturday), he has been on the lowest vent settings all day and they did a two hour test by putting the ventilator on pressure support mode. This means that Luke was doing all the work of breathing on his own, and the ventilator would just kick in and help if he needed it. We are almost at the two hour mark now, and he has done great! He hasn't shown any signs of getting tired. They will let him rest tonight and do some longer stretches on pressure support tomorrow. If he continues doing well, he should be off the ventilator within a couple days!! We are beyond thrilled and are trying to remain patient so that its done when he is ready and not before.
They have also been weaning back Luke's narcotics, which means he has been a lot more alert. He has done very well when awake, surprising the nurses with his big smiles and contentment. Usually babies are very agitated when you start taking away drugs they have become used to! Since he is more stable, they allowed Andy and I both to hold him today. What therapy for us, but I can tell you that it just makes me more anxious to get him off the vent so I can hold him more (and snuggle tighter)! He definitely knows my voice, and I usually get him to smile several times in a row. :)
As for the other kids, they have had an amazing break. The Warran family surprised us and drove out from Indiana! The kids got to swim at the hotel and play together with all their new toys. I got to have some girl time with my dear friend, and Luke got to meet his Uncle Tim. The guys even snuck away for sushi one night. We also got to see the Allen family for a few days on their way back to Altus from Indiana. Watching Olivia and Carter at with our kids brings us so much joy. We will miss being so close to them when we move to Florida!
As for the rest of the month, we continue to take it a day at a time. Andy is still able to be here on emergency leave. Eli starts back to school on Monday. We have decided to pull Jordan and Drew out of school to try to protect them, and Luke from all the germs that are so prevalent this time of year. We plan to just hunker down once Luke gets home and wait to explore once Luke is a little older. They have told us that he will get sick very quickly, and severely compared to other kids because of his immature lungs and the scarring that they have, and also because of his pulmonary hypertension.
As for me, Luke's smiles are very therapeutic. I am still working on my anxiety over taking him home. I still relive the morning he had to come here often, but less than last week, and less than the first week. I don't yet know how I will be able to sleep, but am working through it all with God. He has been with us every step of this journey, and I know He will help me through the next phase too. I am going to be a lot more protective than I was because I have to for Luke's sake. My guess is that it will make the next few months seem lengthy, but he is worth it!
Our latest news is that Luke is doing great! After slowly weaning him from the nitric oxide, he has begun weaning on his ventilator rather quickly. We joke that it was because the doctor mentioned that we should be prepared for Luke to need a tracheotomy. However, if he continues to wean from the vent like he has the last few days, we won't need to do that! Today (Saturday), he has been on the lowest vent settings all day and they did a two hour test by putting the ventilator on pressure support mode. This means that Luke was doing all the work of breathing on his own, and the ventilator would just kick in and help if he needed it. We are almost at the two hour mark now, and he has done great! He hasn't shown any signs of getting tired. They will let him rest tonight and do some longer stretches on pressure support tomorrow. If he continues doing well, he should be off the ventilator within a couple days!! We are beyond thrilled and are trying to remain patient so that its done when he is ready and not before.
They have also been weaning back Luke's narcotics, which means he has been a lot more alert. He has done very well when awake, surprising the nurses with his big smiles and contentment. Usually babies are very agitated when you start taking away drugs they have become used to! Since he is more stable, they allowed Andy and I both to hold him today. What therapy for us, but I can tell you that it just makes me more anxious to get him off the vent so I can hold him more (and snuggle tighter)! He definitely knows my voice, and I usually get him to smile several times in a row. :)
As for the other kids, they have had an amazing break. The Warran family surprised us and drove out from Indiana! The kids got to swim at the hotel and play together with all their new toys. I got to have some girl time with my dear friend, and Luke got to meet his Uncle Tim. The guys even snuck away for sushi one night. We also got to see the Allen family for a few days on their way back to Altus from Indiana. Watching Olivia and Carter at with our kids brings us so much joy. We will miss being so close to them when we move to Florida!
As for the rest of the month, we continue to take it a day at a time. Andy is still able to be here on emergency leave. Eli starts back to school on Monday. We have decided to pull Jordan and Drew out of school to try to protect them, and Luke from all the germs that are so prevalent this time of year. We plan to just hunker down once Luke gets home and wait to explore once Luke is a little older. They have told us that he will get sick very quickly, and severely compared to other kids because of his immature lungs and the scarring that they have, and also because of his pulmonary hypertension.
As for me, Luke's smiles are very therapeutic. I am still working on my anxiety over taking him home. I still relive the morning he had to come here often, but less than last week, and less than the first week. I don't yet know how I will be able to sleep, but am working through it all with God. He has been with us every step of this journey, and I know He will help me through the next phase too. I am going to be a lot more protective than I was because I have to for Luke's sake. My guess is that it will make the next few months seem lengthy, but he is worth it!
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