I hope everyone had a wonderful Christmas yesterday! I was able to go home for a few hours both on Christmas Eve Day and Christmas morning. We opened some gifts both days since we had all of our family exchange gifts from both sides of the family. We also were able to attend a Christmas Eve candlelight ceremony at Acts 2, which was very special since we usually are not in town on Christmas, and because this is our last Christmas in Oklahoma. Christ has used the people of this church to help us grow in our faith so much these past 6 years, and to help us through so many difficult times. We were running late (surprise) so we ended up in the front row. We let the kids each have their own candle too, so you can imagine what a spectacle we were! :) I am just thankful we were all able to celebrate Jesus' birth together. We, of course, wished Luke was with us, but the reality is that we wouldn't have taken him anyway with the crowd and his prematurity.
Highlights from the kids gifts for this year:
Eli got a Skylanders starter pack from Santa and lots of Skylander characters from family. He also got a drum set and some Lego sets that he has already put together! He also got Battleship, a science experiment set, and Whac-a-mole card game.
Drew got a sword from Santa because his from last year got broken. He also has recently become interested in trains, and got some Thomas trains and a small track. He has a couple new floor puzzles to do and a Lego Duplo set. Nana and Papa got him a new harmonica too, which he loves!
Jordan got a Baby Alive from Santa and loves her! She has asked for a doll "that pees and poops" for as long as I can remember! She has a high chair to put her and her two other new dolls in, thanks to Grandpa and GG. She also got a Tinkerbelle movie, a Barbie guitar, a hairstyling kit and a pillow pet night light.
Luke's gifts got opened by the big kids since they would have anyway! He got some clothes and fun toys, a name block like his siblings and a homemade blanket.
As far as Luke's progress, there is some, but not a lot to report since the last post. He is having trouble keeping his oxygen levels up, so they haven't been able to wean him from the ventilator any. They turned down his nitric oxide only to turn it back up yesterday, but turned it back down today. He is off the paralytic, so that is wonderful news! He is able to wiggle around and shows us his beautiful bright eyes once in awhile. He has at least one time each day when he really is awake, and he is agitated. I am usually able to soothe him with my singing (scary I know!) and soothing touch when he gets upset, but we usually have to give him a bolus of pain meds to calm him down from those big awake times.
Other changes include increasing his pulmonary hypertension medicine twice. They hope that with the increase of this medicine, that they can decrease his nitric oxide and get him off of it soon. They also ordered another echo of his heart, and this time, put in a cardio consult, so Dr Shaw will be by in the morning to see Luke. His X-ray looks better today than it has in a long time, and everyone say his lungs sound great, so I hope that these improvements will show clinically soon and he will show us that he is ready to start doing more breathing on his own.
I still stay here most of the time, and feel that I need to be here to be Luke's voice. With the holidays and being here for almost 2 weeks, we are seeing new staff who don't know Luke, and my presence and recollection has been useful a few times. He likes to keep teaching them that every kid is different! :) When he has a repetitive problem, I like to make sure we look at how it was addressed last time by a different doctor, nurse or therapist , so that we aren't always going back to square one. Also, the boy tends to act up every time I do leave! Stinker!
Thanks again to everyone for everything. We can't say that enough! We continue to try to be patient and open to the path we are chosen to take. Sometimes it is easier than others. I will try to post some Christmas pictures on here soon, but those of you on Facebook have already seen some. I forgot to mention that we got some snow! Just enough to cover the ground, but the kids had a blast in it nonetheless.
Wednesday, December 26, 2012
Sunday, December 23, 2012
Pneumonia and Mistletoe
Even though we tried to avoid it, Luke managed to get pneumonia for Christmas. I can think of a thousand better gifts, but it is non-refundable, so we are keeping it and going to kick its booty!! They have him on 2 strong antibiotics, steroids, and every treatment the respitory therapists can do to help get rid of it and clear up his lungs. Today has been the first somewhat calm day since Tuesday, and I am so thankful for it. This Mommy is tired. Here is yesterday's recap: Luke had been having low oxygen levels, so they gave him a fluid bolus and re-adjusted his vent tube placement (3 times). That seemed to do the trick for a few hours. Then on Saturday morning, he started having low blood pressures, got really cold and pale, and had low O2 levels. They tried 2 fluid boluses, but they didn't help. They started him on the new antibiotics and we had to use a special heater to get him warmed up (just like the day we came here). Talk about giving Mommy some anxiety! They finally had to start liquid nitric oxide, which is given through his ventilator. This is used to treat pulmonary hypertension, but is also used for sick lungs. It began working within minutes. So, he is on it for awhile so his lungs can heal. It will need to be weaned slowly, as will his narcotics. So, we are here awhile. Dr said that his pneumonia is bad and that he will be pretty fragile the next couple of days, and that it will take at least a week to get over it. They said the episode yesterday was a classic pulmonary hypertension episode, so they ordered another echo of his heart. We haven't gotten the official results yet, but the resident told me that it looked like only mild swelling on his right side, so mild pulmonary hypertension caused by the pneumonia and not the full chronic disease.
Today, they have given him a break from his lasiks and gave him another blood transfusion. They also had to increase his versed because even though he is on a paralytic, he is moving some today when we mess with him. He remains on the ventilator and is getting a lot of assistance from it for now. We are so thankful for technology, great doctors and nurses, and good insurance through the Air Force.
In more fun and exciting news, Andy's parents arrived tonight! Yesterday, Andy and the big kids got to attend a special event here at the hospital. They met all of the Oklahoma Thunder players and are in some photos and videos on the team's FB page. Eli even got Russell Westbrook to sign a Thunder shirt for him!
Today, they have given him a break from his lasiks and gave him another blood transfusion. They also had to increase his versed because even though he is on a paralytic, he is moving some today when we mess with him. He remains on the ventilator and is getting a lot of assistance from it for now. We are so thankful for technology, great doctors and nurses, and good insurance through the Air Force.
In more fun and exciting news, Andy's parents arrived tonight! Yesterday, Andy and the big kids got to attend a special event here at the hospital. They met all of the Oklahoma Thunder players and are in some photos and videos on the team's FB page. Eli even got Russell Westbrook to sign a Thunder shirt for him!
Friday, December 21, 2012
A week in the PICU
I apologize that I haven't updated in a couple days. Luke has kept us on our toes, and thus, I have been a bit exhausted when I finally get into my pull-out bed here in his hospital room. It really isn't that bad of a bed...
Okay, I know what you want is an update on Luke! He remains stable, still on a ventilator. They had to increase his vent settings on Wednesday and are hoping to start weaning them again today (Fri). He had a rough start to his day on Wednesday because his central line, which is what he gets all of his iv meds through, and they draw his blood from, was leaking. The nurses tried 3 times for a regular iv and were unsuccessful. Then, our PICC nurse came and looked and said there was nowhere for her to do a PICC. So, they called the NICU and they tried twice to get a PICC placed, with no success. Finally, Dr Carroll was able to guide a wire through the current central line and put a new one in the same spot. This all happened before noon!
Overall, we are still in a waiting pattern. We change one medicine to correct something, and that causes something else we need to fix. It's just going to be that way for now. For example, his CO2 is high, which is because his bicarbonate is high, which is because of the lasiks he is taking (and needs to keep his fluid retention down so he doesn't get pneumonia). So, we back off the lasiks and then his lung X-rays show that they are hazy, so we treat that....and the cycle continues.
They did start him on a medicine that is used to treat pulmonary hypertension. They don't feel like he has this disease, but he did show symptoms of it when we got here last week. The doctors explained that some kids have pulmonary hypertension when they get sick, even when there is no sign of it when they are healthy. He is going to be a child who gets sick quickly and it's going to affect him more significantly than other kids. Its a bummer for him, but I like that they are talking about his future!! Also, he got a blood transfusion yesterday to help build his volume back up and give him a boost so his lungs can heal. Essentially, that is what we are waiting on. His lungs are not in good shape. They are still doing his lung conditioning and have added in lung PT, where they use a soft tool to hit his chest rapidly to try to help him break up his congestion. It is working. Also, they have put him back on albuterol inhaler puff every 4 hours to try to help.
As for the rest of us, we are good. Aunt Kelly has been here this week from Indiana to help out and we are so thankful for the extra help. She made cut out cookies with the kids last night, did gingerbread houses with Jordan and Drew, and helped Andy with bedtime and morning routines daily. The Allen's are coming through town today and picking her up on their way to Indiana for the holidays. We are sad not to be traveling with them, but Andy's parents are heading our way this weekend and will stay through Christmas. The big kids are super excited. I have had their gifts wrapped and under the tree since last Wednesday, so they are ready to see what is in them! :) They were able to come up to visit on Tuesday night and did great. We brought them in one at a time while the others made Christmas cards for their teachers in the waiting room. None of them acted scared or intimidated by all the machines, just curious. They all told Luke how much they loved him (unprompted), which melted my heart. He is such a big part of our family already, even though he is still so small (6 lbs, 6 oz to be exact).
Thanks again to all for your continued prayers, thoughts, play dates, hospital visits, Starbucks... We are blessed beyond measure to have so many praying for our little Luke. I hope to update again soon, but if it doesn't happen, please have a wonderful and Merry Christmas!!
Okay, I know what you want is an update on Luke! He remains stable, still on a ventilator. They had to increase his vent settings on Wednesday and are hoping to start weaning them again today (Fri). He had a rough start to his day on Wednesday because his central line, which is what he gets all of his iv meds through, and they draw his blood from, was leaking. The nurses tried 3 times for a regular iv and were unsuccessful. Then, our PICC nurse came and looked and said there was nowhere for her to do a PICC. So, they called the NICU and they tried twice to get a PICC placed, with no success. Finally, Dr Carroll was able to guide a wire through the current central line and put a new one in the same spot. This all happened before noon!
Overall, we are still in a waiting pattern. We change one medicine to correct something, and that causes something else we need to fix. It's just going to be that way for now. For example, his CO2 is high, which is because his bicarbonate is high, which is because of the lasiks he is taking (and needs to keep his fluid retention down so he doesn't get pneumonia). So, we back off the lasiks and then his lung X-rays show that they are hazy, so we treat that....and the cycle continues.
They did start him on a medicine that is used to treat pulmonary hypertension. They don't feel like he has this disease, but he did show symptoms of it when we got here last week. The doctors explained that some kids have pulmonary hypertension when they get sick, even when there is no sign of it when they are healthy. He is going to be a child who gets sick quickly and it's going to affect him more significantly than other kids. Its a bummer for him, but I like that they are talking about his future!! Also, he got a blood transfusion yesterday to help build his volume back up and give him a boost so his lungs can heal. Essentially, that is what we are waiting on. His lungs are not in good shape. They are still doing his lung conditioning and have added in lung PT, where they use a soft tool to hit his chest rapidly to try to help him break up his congestion. It is working. Also, they have put him back on albuterol inhaler puff every 4 hours to try to help.
As for the rest of us, we are good. Aunt Kelly has been here this week from Indiana to help out and we are so thankful for the extra help. She made cut out cookies with the kids last night, did gingerbread houses with Jordan and Drew, and helped Andy with bedtime and morning routines daily. The Allen's are coming through town today and picking her up on their way to Indiana for the holidays. We are sad not to be traveling with them, but Andy's parents are heading our way this weekend and will stay through Christmas. The big kids are super excited. I have had their gifts wrapped and under the tree since last Wednesday, so they are ready to see what is in them! :) They were able to come up to visit on Tuesday night and did great. We brought them in one at a time while the others made Christmas cards for their teachers in the waiting room. None of them acted scared or intimidated by all the machines, just curious. They all told Luke how much they loved him (unprompted), which melted my heart. He is such a big part of our family already, even though he is still so small (6 lbs, 6 oz to be exact).
Thanks again to all for your continued prayers, thoughts, play dates, hospital visits, Starbucks... We are blessed beyond measure to have so many praying for our little Luke. I hope to update again soon, but if it doesn't happen, please have a wonderful and Merry Christmas!!
Monday, December 17, 2012
Update on Luke
Luke has been in the hospital for 5 days now and is slowly improving. They have weaned his ventilator settings a few times by turning down his oxygen level needed, and then by turning down the rate at which the vent is breathing for him. They did have to turn it up a bit this morning, but he continues to initiate breaths on his own very often, which is very encouraging.
Yesterday, he was alert and seemed to be uncomfortable and scared more often than I liked. They finally added another medicine in (versed) to help keep him calm and let him rest better. Since then, he has rested very well. He still tends to have bradycardia and desat when they suction him or mess with him, but he recovers more quickly and doesn't do it every time.
He is getting fortified breastmilk through his NG tube and is stooling, which we are happy about because that means his intestines are working. They say that the intestines are the first place to lose blood flow during a cardiac arrest because the blood goes to more important organs, like the heart and brain. He is retaining some fluid, which is normal for kids who are on iv fluids and on a vent. They periodically give him lasiks when he gets too puffy. His lungs continue to improve on his daily X-ray and respitory has begun lung conditioning, where they use the ventilator to open up his lungs and hold some oxygen briefly, like you do when you yawn. His liver numbers are still a bit high, but continuing to go down.
One of the doctors told Andy and I yesterday that they did not expect Luke to survive when he came in on Thursday. His numbers were just too bad...acidity, CO2 and others. While we knew how dire the situation was/is, it is still hard to hear that from a medical professional. I am glad he told us and he did it in an appropriate way, so I am not sharing this to be negative. We are so appreciative of the wonderful care Luke has received, No matter how bad things get, we have hope. I read this week that hope is not the same as wishful thinking. God knew I needed that discernment. We don't come into these stressful situations naïve. We know the possible outcomes, but we choose to remain hopeful that God will work miracles and save Luke's life. He is with us, beside us, giving us peace and grieving with us as we process this event and miss holding our youngest child. Andy and I both feel like Luke will make a full recovery! He has beat the odds before. When I start to feel panicked and defeated, I remember that even though this trial is hard for us to endure, there are many others (some of you reading this), who have endured far more. Please know God is with you, as He is with us.
Yesterday, he was alert and seemed to be uncomfortable and scared more often than I liked. They finally added another medicine in (versed) to help keep him calm and let him rest better. Since then, he has rested very well. He still tends to have bradycardia and desat when they suction him or mess with him, but he recovers more quickly and doesn't do it every time.
He is getting fortified breastmilk through his NG tube and is stooling, which we are happy about because that means his intestines are working. They say that the intestines are the first place to lose blood flow during a cardiac arrest because the blood goes to more important organs, like the heart and brain. He is retaining some fluid, which is normal for kids who are on iv fluids and on a vent. They periodically give him lasiks when he gets too puffy. His lungs continue to improve on his daily X-ray and respitory has begun lung conditioning, where they use the ventilator to open up his lungs and hold some oxygen briefly, like you do when you yawn. His liver numbers are still a bit high, but continuing to go down.
One of the doctors told Andy and I yesterday that they did not expect Luke to survive when he came in on Thursday. His numbers were just too bad...acidity, CO2 and others. While we knew how dire the situation was/is, it is still hard to hear that from a medical professional. I am glad he told us and he did it in an appropriate way, so I am not sharing this to be negative. We are so appreciative of the wonderful care Luke has received, No matter how bad things get, we have hope. I read this week that hope is not the same as wishful thinking. God knew I needed that discernment. We don't come into these stressful situations naïve. We know the possible outcomes, but we choose to remain hopeful that God will work miracles and save Luke's life. He is with us, beside us, giving us peace and grieving with us as we process this event and miss holding our youngest child. Andy and I both feel like Luke will make a full recovery! He has beat the odds before. When I start to feel panicked and defeated, I remember that even though this trial is hard for us to endure, there are many others (some of you reading this), who have endured far more. Please know God is with you, as He is with us.
Friday, December 14, 2012
Luke's hospitalization
Luke had some cough and congestion earlier this week, so I took him to our pediatrician on Tuesday. His rsv test was negative and his lungs still sounded clear. On Wednesday, his cough sounded worse, but he didn't have a fever, so we just kept a close eye on him. That night, my mom took the first shift and rocked him in the living room. He was too congested to lay down, and he was still connected to his monitors, so we had some reassurance that he was doing okay. He didn't eat all through the night and woke up around 6am and was alert while Nana fixed his bottle. He ate some of it, and when she was burping him, his low heart rate alarm went off. I was in my bedroom sleeping and heard it. I ran out and took Luke from my mom and he was nonresponsive, blue and cold. I immediately had mom call 911 and did CPR until the ambulance arrived. I am still in shock and processing this, and I know that it will take me awhile to cope fully with it. I knew God was with me, and did what I needed to, but it was all out of selfish fear and love. I couldn't fathom the alternative, so I panicked on the inside and did anything possible to save Luke's life so I could keep him here on Earth with me-with our family. God, in his endless mercy, answered my internal prayers that I screamed to Him in my head as I did CPR. He had the monitor in place to get Luke fast help, my mom there to help in a thousand ways, had me trained and there when it happened, and even had the nose bulb sitting right there so I could suction Luke when he threw up from my rescue breaths. God is always with us!
Tonight I sit in the hospital with a very sick little boy. He has enterovirus and rhinovirus, which are very common and usually give people cold symptoms. But because of his premature lungs and immune system, it caused pulmonary hypertension, which is increased pressure in his lungs, which caused increased pressure to the right side of his heart, which caused the cardiac arrest, and is the cause of his blood flow going the wrong way in his heart right now. Hopefully, with time, it will all heal, and he will not have any long term neurological damage from the episode, or from my CPR.
Andy drove back from San Antonio yesterday and will be here until we know Luke is out of the woods. His dr said he will be on the ventilator for at least a week. As always, we have had a wonderful outpouring of love and prayers from those we know and don't know. We appreciate every single one of them! Luke does too.
Tonight I sit in the hospital with a very sick little boy. He has enterovirus and rhinovirus, which are very common and usually give people cold symptoms. But because of his premature lungs and immune system, it caused pulmonary hypertension, which is increased pressure in his lungs, which caused increased pressure to the right side of his heart, which caused the cardiac arrest, and is the cause of his blood flow going the wrong way in his heart right now. Hopefully, with time, it will all heal, and he will not have any long term neurological damage from the episode, or from my CPR.
Andy drove back from San Antonio yesterday and will be here until we know Luke is out of the woods. His dr said he will be on the ventilator for at least a week. As always, we have had a wonderful outpouring of love and prayers from those we know and don't know. We appreciate every single one of them! Luke does too.
Sunday, November 11, 2012
Our 4 kids together
I posted alot of photos on Facebook in a folder titled, "Luke's Homecoming". Here are some more of all the kids together on Saturday, and today. Also, some capturing their willingness to help and take care of "Lukester", as he has been nicknamed by Eli. :) Enjoy!
Saturday, November 10, 2012
LUKE IS HOME!!!
Luke came home yesterday evening (11/9/12)!!! Andy, Jordan, Drew and I went to a Veteran's Day program at Eli's school in the afternoon. It was very nice. The kindergartners recited the Preamble to the Constitution! Also, the kids sang the military branches' songs and God Bless the USA by Lee Greenwood. So cute. Eli really does go to a great school. We are going to miss it when we move.
Afterwards, we dropped the kids off at a friends (Nicole-you rock; as do you, Chantelle)! Andy and I thought it best for us to go get Luke and have the little kids get to meet him at our house. We got to the hospital and fed him his bottle, and after a short while, we were on our way home! He came home on a portable monitor that lets us know if he has any bradycardia or apnea episodes. He had been having a "brady" once a day, or every other day, so they wanted to be safe. The monitor has indicated a low heart rate (brady) a few times now, but some of those times, it also indicated a loose lead, so I think that maybe one of them was real, and the others were false alarms. We prepared the children by telling them how loud it was, and to get Mommy or Daddy if for some reason we weren't in the room when it went off. Eli knows about CPR, so he told us he would do it if needed; thus, we made sure he knew NOT to attempt that. Mommy and Daddy are trained for babies, so only we will do it, IF we need to. When the alarm went off the first time, Eli panicked, and was pacing, saying "I hope Luke doesn't die." :( I know, but we are honest with him and he is a sharp kid, so it doesn't surprise me. We assure him that Luke isn't going to die, but it is just to be safe, but he definitely worries when it goes off. I have no doubt that Brady's death has affected his view of babies dying (we have talked about it often, of course). He knows that it isn't the norm, but he also has lived through it, so it's a very real fear to him.
Luke has adjusted to being home great! He was eating so much that they moved him to a 4 hour schedule instead of eating everry 3 hours. We have had some trouble getting him to burp since he's been home, which is funny because the nurses all laughed at how loud (and easily) he burped when in the hospital. I guess Andy and I are out of practice. Hee hee. He tolerates the other kids' noise well, and really is happy when he is alert, and sleeps most of the time between feedings. He takes awhile to eat sometimes, so it is time-consuming, but everyone is patient with us. Andy asked last night how we did it with two, and I told him I never slept!! The kids ran in and were in awe of Luke. They want to help out more than we are ready for them to just yet. Jordan keeps saying that we named him Luke because we didn't have that name yet in our family, and that she suggested Luke as a name! Drew has some congestion, so we won't let him kiss him yet, but he is always touching his hands and forehead (yes, they all know they have to have clean hands first).
I HAVE LOVED TODAY! We just stayed in our pj's, did whatever we wanted, including Andy taking the kids to the Braum's drive thru for ice cream to bring home. :) The kids have played wonderfully together, and I have gotten 4 loads of laundry done, along with dishes and general pick-up; and it was all without guilt about not being with Luke. We peek at him often, and are actually comforted by the monitor (how were we not paranoid with the other two?!). Life is good, and we are eternally grateful to everyone for their thoughts, prayers, love and support. Most of all, we praise God, who knew that our family wasn't complete yet, and who gave us so much peace, patience, and strength to take this journey with HIM as our guide. We have already had so many "just stare at our miracle" moments.... Thanks be to God!!!!
Afterwards, we dropped the kids off at a friends (Nicole-you rock; as do you, Chantelle)! Andy and I thought it best for us to go get Luke and have the little kids get to meet him at our house. We got to the hospital and fed him his bottle, and after a short while, we were on our way home! He came home on a portable monitor that lets us know if he has any bradycardia or apnea episodes. He had been having a "brady" once a day, or every other day, so they wanted to be safe. The monitor has indicated a low heart rate (brady) a few times now, but some of those times, it also indicated a loose lead, so I think that maybe one of them was real, and the others were false alarms. We prepared the children by telling them how loud it was, and to get Mommy or Daddy if for some reason we weren't in the room when it went off. Eli knows about CPR, so he told us he would do it if needed; thus, we made sure he knew NOT to attempt that. Mommy and Daddy are trained for babies, so only we will do it, IF we need to. When the alarm went off the first time, Eli panicked, and was pacing, saying "I hope Luke doesn't die." :( I know, but we are honest with him and he is a sharp kid, so it doesn't surprise me. We assure him that Luke isn't going to die, but it is just to be safe, but he definitely worries when it goes off. I have no doubt that Brady's death has affected his view of babies dying (we have talked about it often, of course). He knows that it isn't the norm, but he also has lived through it, so it's a very real fear to him.
Luke has adjusted to being home great! He was eating so much that they moved him to a 4 hour schedule instead of eating everry 3 hours. We have had some trouble getting him to burp since he's been home, which is funny because the nurses all laughed at how loud (and easily) he burped when in the hospital. I guess Andy and I are out of practice. Hee hee. He tolerates the other kids' noise well, and really is happy when he is alert, and sleeps most of the time between feedings. He takes awhile to eat sometimes, so it is time-consuming, but everyone is patient with us. Andy asked last night how we did it with two, and I told him I never slept!! The kids ran in and were in awe of Luke. They want to help out more than we are ready for them to just yet. Jordan keeps saying that we named him Luke because we didn't have that name yet in our family, and that she suggested Luke as a name! Drew has some congestion, so we won't let him kiss him yet, but he is always touching his hands and forehead (yes, they all know they have to have clean hands first).
I HAVE LOVED TODAY! We just stayed in our pj's, did whatever we wanted, including Andy taking the kids to the Braum's drive thru for ice cream to bring home. :) The kids have played wonderfully together, and I have gotten 4 loads of laundry done, along with dishes and general pick-up; and it was all without guilt about not being with Luke. We peek at him often, and are actually comforted by the monitor (how were we not paranoid with the other two?!). Life is good, and we are eternally grateful to everyone for their thoughts, prayers, love and support. Most of all, we praise God, who knew that our family wasn't complete yet, and who gave us so much peace, patience, and strength to take this journey with HIM as our guide. We have already had so many "just stare at our miracle" moments.... Thanks be to God!!!!
Wednesday, November 7, 2012
Hope to all be together Friday!
Luke got his feeding tube out in the night last night! He looks so big sometimes, yet so little others. He now weighs 4 lbs, 6 oz! He is doing great, and we were able to talk with the doctor and nurse practictioner today about our discharge plan. They tested his hematocrit, and it was on the low side, so they were planning to do a blood transfusion before discharge. However, after some discussion with Andy and I (okay, I talked and Andy nodded his head a few times), we are holding off on that for now. He will get his hematocrit level checked in a week by our pediatrician and if it has gone down more, we will go ahead and take him in to get the transfusion. I truly want what is best for Luke, and there were a few factors that led me to feel like he didn't need one just yet. He made it this entire hospitalization without one, and his level was just borderline low.
Because of the couple bradycardia episodes and hematocrit level, they have decided that he should come home on monitors. Jordan and Drew did not come home with any, so this will be new to us. However, our twin nephews had them when they were babies, so we are familiar with the logistics of moving him around with them, etc. They said in a week or two, if he doesn't have any apnea or bradycardia episodes, he can get off of them. Also, he is getting his carseat test tonight sometime, so hopefully, he will pass that because the plan is to bring him HOME ON FRIDAY AFTERNOON!!! Eli has a school Veteran's Day program that we would like to go to, so we will go get Luke after that is over. Eli is SO excited about singing his "America" songs for this program. He tried telling us that it was weeks ago! He got confused since he has been practicing them in music for awhile. This morning at breakfast he sang me Lee Greenwood's song, "Proud to be an American". I may cry during it on Friday! :) I taught patients at Shriner's Hospital for Children that song, along with others, right after 9/11 and we performed them for the staff and community leaders. (sniff, sniff)
The kids are BEYOND excited to get Luke home. Tonight, we put together his swing and bouncy seat, and the kids sorted through the huge box of baby toys I have gotten from Brandy and Stephanie and picked out some of their favorites for us to wash up and share with Luke. All others, including all pink, is coming your way, Abby and Chris!! I figure that Luke will be more entertained by his siblings and their toys than he will a small rattle.... Tomorrow night, we make signs and blow up some balloons. We will do our best to capture the family "reunion" on Friday and share it with you all. Until then....
Because of the couple bradycardia episodes and hematocrit level, they have decided that he should come home on monitors. Jordan and Drew did not come home with any, so this will be new to us. However, our twin nephews had them when they were babies, so we are familiar with the logistics of moving him around with them, etc. They said in a week or two, if he doesn't have any apnea or bradycardia episodes, he can get off of them. Also, he is getting his carseat test tonight sometime, so hopefully, he will pass that because the plan is to bring him HOME ON FRIDAY AFTERNOON!!! Eli has a school Veteran's Day program that we would like to go to, so we will go get Luke after that is over. Eli is SO excited about singing his "America" songs for this program. He tried telling us that it was weeks ago! He got confused since he has been practicing them in music for awhile. This morning at breakfast he sang me Lee Greenwood's song, "Proud to be an American". I may cry during it on Friday! :) I taught patients at Shriner's Hospital for Children that song, along with others, right after 9/11 and we performed them for the staff and community leaders. (sniff, sniff)
The kids are BEYOND excited to get Luke home. Tonight, we put together his swing and bouncy seat, and the kids sorted through the huge box of baby toys I have gotten from Brandy and Stephanie and picked out some of their favorites for us to wash up and share with Luke. All others, including all pink, is coming your way, Abby and Chris!! I figure that Luke will be more entertained by his siblings and their toys than he will a small rattle.... Tomorrow night, we make signs and blow up some balloons. We will do our best to capture the family "reunion" on Friday and share it with you all. Until then....
Tuesday, November 6, 2012
Discharge Preparations...
For those who haven't heard, we found out on Monday that Luke should come home on or before Friday of this week!! On Thursday, he will be 6 weeks old. Jordan and Drew were born at 30 weeks gestation also and came home at 7 weeks of age, and weighed 5 lbs. Luke was 4 lbs, 4 oz as of yesterday. They are probably weighing him as I type, so I bet he is up an ounce or two.
Last week, I talked with the doctor about Andy leaving for training the week after Thanksgiving. I truly want what is best for Luke, but prayed that we had some overlap time when Luke was home and so was Andy! They increased his bottle feedings per day, and it's like a ligh bulb clicked after a couple of days. He started taking his required amount of 36 ml, plus whatever extra the nurses had put in (usually 40 ml total)!! He took every bottle offered, so one of the nurses we have had before told me on Sunday night that she was going to offer the bottle if he was awake at his 12:30am feeding, which was supposed to be tube fed. He was awake; she offered; and he downed it!! Since then, he has taken every feeding from a bottle. I was sick on Monday, and I had to stay home. It's the first day that I haven't seen Luke, and it about broke my heart. I am so grateful to be living in the same place as his hospital, and for all the amazing friends who keep my children for extended and repeated playdates so that I can have that time with Luke each day. I called often to check-in, and each time, the news got better and better. "He's getting his immunizations today, and will be circumcised today or tomorrow, bring your carseat tomorrow so we can do his carseat test, sign up for the parent discharge class on Wednesday (not Friday). He is doing so well, he could go home before then!!!" Talk about making me feel better!! I managed to rest in the morning, but kicked that virus to the curb and started preparing the house even more for his homecoming. There were some things that I just wanted to wait on so that it didn't seem like he was there for so long...
Today, I spent all day up there with Luke (major thanks to my friend, Hilary)!! He got circumcised, and wasn't a fan, as you can imagine, so I stayed and rocked him most of the afternoon. He has had a couple of bradycardia episodes the past 2 days, so they are doing some labwork tonight, and now, if he does come home this week, he will most likely be on monitors. He hadn't had any episodes in weeks, so they want to make sure his bloodwork all looks good. He is still little, and young, and we are absolutely okay with waiting to bring him home when HE is ready. They talked today that it was going to be tomorrow after class until he started having these episodes, so I am thankful that they are checking into them and being cautious. I still anticipate that he will come home on Friday, but we just have to wait and see. God calls us often to do that...wait and see. So, we will, and we will do so patiently. We are so, so thankful to God for answering the thousands of prayers said on his behalf these past few months. We praise Him always, in these times of joy, and in our times of sorrow. Andy and I just can't wait to bring Luke home and stare at the miraculous gift God has once again given us. We did it with all of our other children, and I know we will do it again. Just hold him and stare, and praise God. Newborns are so much more fun to watch than any t.v. show!! Okay, I digress. I will do my best to keep everyone posted, and post some great photos soon. You know I take some everyday! :) Happy Election Day...and, no, I didn't vote. I didn't feel like I knew enough facts about each candidate. My husband did though, so good job Andy!
Last week, I talked with the doctor about Andy leaving for training the week after Thanksgiving. I truly want what is best for Luke, but prayed that we had some overlap time when Luke was home and so was Andy! They increased his bottle feedings per day, and it's like a ligh bulb clicked after a couple of days. He started taking his required amount of 36 ml, plus whatever extra the nurses had put in (usually 40 ml total)!! He took every bottle offered, so one of the nurses we have had before told me on Sunday night that she was going to offer the bottle if he was awake at his 12:30am feeding, which was supposed to be tube fed. He was awake; she offered; and he downed it!! Since then, he has taken every feeding from a bottle. I was sick on Monday, and I had to stay home. It's the first day that I haven't seen Luke, and it about broke my heart. I am so grateful to be living in the same place as his hospital, and for all the amazing friends who keep my children for extended and repeated playdates so that I can have that time with Luke each day. I called often to check-in, and each time, the news got better and better. "He's getting his immunizations today, and will be circumcised today or tomorrow, bring your carseat tomorrow so we can do his carseat test, sign up for the parent discharge class on Wednesday (not Friday). He is doing so well, he could go home before then!!!" Talk about making me feel better!! I managed to rest in the morning, but kicked that virus to the curb and started preparing the house even more for his homecoming. There were some things that I just wanted to wait on so that it didn't seem like he was there for so long...
Today, I spent all day up there with Luke (major thanks to my friend, Hilary)!! He got circumcised, and wasn't a fan, as you can imagine, so I stayed and rocked him most of the afternoon. He has had a couple of bradycardia episodes the past 2 days, so they are doing some labwork tonight, and now, if he does come home this week, he will most likely be on monitors. He hadn't had any episodes in weeks, so they want to make sure his bloodwork all looks good. He is still little, and young, and we are absolutely okay with waiting to bring him home when HE is ready. They talked today that it was going to be tomorrow after class until he started having these episodes, so I am thankful that they are checking into them and being cautious. I still anticipate that he will come home on Friday, but we just have to wait and see. God calls us often to do that...wait and see. So, we will, and we will do so patiently. We are so, so thankful to God for answering the thousands of prayers said on his behalf these past few months. We praise Him always, in these times of joy, and in our times of sorrow. Andy and I just can't wait to bring Luke home and stare at the miraculous gift God has once again given us. We did it with all of our other children, and I know we will do it again. Just hold him and stare, and praise God. Newborns are so much more fun to watch than any t.v. show!! Okay, I digress. I will do my best to keep everyone posted, and post some great photos soon. You know I take some everyday! :) Happy Election Day...and, no, I didn't vote. I didn't feel like I knew enough facts about each candidate. My husband did though, so good job Andy!
Thursday, November 1, 2012
5 weeks old and 4 pounds!
Today Luke is 5 weeks old, or 35 weeks gestation if he was still in utero. Tonight, he weighed 4 lbs, 1 oz and they finally moved him into a big boy open air crib. He has been holding his own temperature since they lifted the lid on his isolette awhile ago, but no one ever switched his bed until tonight. The scale on the isolette has been acting up, so we had him out on the regular scale, so another nurse we t and found him a crib. Here are some photos of him from today. He is now on a eat from a bottle two times in a row, then get fed via his tube the third feeding. So, he is eating more often from a bottle, but still doesn't finish every bottle every time. He really is a content baby and I rarely hear him cry. I hope that continues once he is home! :) We still do not know when he will come home, but are so proud of how he is progressing. 
Halloween Fun!
All the kids had a great Halloween season! I say season because we have been celebrating for months now. Eli has inherited his love of this holiday from his Daddy, and asked to get out our Halloween stuff in August! Even though Luke wasn't able to join us for Trick-or-Treating, he still got to dress up for some photos. I took more photos on my other camera, but couldn't get them to upload again.
Real fast update: Luke is finally 4 lbs!! They are also trying more bottles and letting him nurse once a day (which he does great at). Thanks for the continued prayers.
Real fast update: Luke is finally 4 lbs!! They are also trying more bottles and letting him nurse once a day (which he does great at). Thanks for the continued prayers.
Monday, October 29, 2012
Where Did October Go?
Wow, October has flown by. I guess when you split time between home and the hospital everyday, and try to keep up with the kid's schoolwork, soccer, dance, etc, time goes by quickly! This isn't a complaint though-just a statement of fact. We couldn't be happier with Luke's progress, and the other kids are all healthy and happy (and VERY excited about Halloween)!
Luke Update: He continues to eat from a bottle for 2-3 feedings a day. Some days, he eats the whole thing (just over an ounce) easily, while other days, he only eats half or so. Last night and this morning, he nursed well for the first time! The nurses count it as a "full feeding" if he nurses well for at least 10 minutes. He is getting the specialized high protein, high calorie formula four times a day, and breastmilk four times a day. As of last night at this time, he weighed 3 lbs, 15 oz!! I will call and check on him soon, and see if he has broken the 4 lb mark!
In other news, Eli got his first report card last week and did great. He is reading well above the kindergarten level, but needs to keep working I his fine motor skills. Nothing surprising. We are very proud of him! He has gotten used to being there a full day and gets ready each morning so much better than the beginning of the year.
Drew is still our Drew Bear-just snugly, sweet and ornary! He loves playing outdoors, going to school and play dates, and acting silly. Jordan is sweet as can be, wearing princess dresses daily. She only likes to wear pink socks, so add that to her Christmas list! She "tells stories" all the time, using real people and places, so sometimes, she really sounds convincing!
Also, Andy will leave for training in San Antonio in a month. We really hope and expect Luke to be home by then, and want to enjoy our time together as a family much as we can before he leaves. We haven't told the older kids yet about him leaving, but are going to start preparing them this weekend. I know it will be hard on them, especially since I was gone for a month unexpectedly. We are in our "groove" again, but will adapt as needed next month. We just hope and pray that none of these big transitions affect them negatively behaviorally now or in the future. Oh, and if you feel led to pray for us, please include me (Cathy) in them for patience, health, and sleep in the coming months! We have had so much going on over the past few months that I haven't been able to, nor wanted to, think about this next phase of our journey. I am a bit anxious, but know God will give us guidance and strength to get through it.
Luke Update: He continues to eat from a bottle for 2-3 feedings a day. Some days, he eats the whole thing (just over an ounce) easily, while other days, he only eats half or so. Last night and this morning, he nursed well for the first time! The nurses count it as a "full feeding" if he nurses well for at least 10 minutes. He is getting the specialized high protein, high calorie formula four times a day, and breastmilk four times a day. As of last night at this time, he weighed 3 lbs, 15 oz!! I will call and check on him soon, and see if he has broken the 4 lb mark!
In other news, Eli got his first report card last week and did great. He is reading well above the kindergarten level, but needs to keep working I his fine motor skills. Nothing surprising. We are very proud of him! He has gotten used to being there a full day and gets ready each morning so much better than the beginning of the year.
Drew is still our Drew Bear-just snugly, sweet and ornary! He loves playing outdoors, going to school and play dates, and acting silly. Jordan is sweet as can be, wearing princess dresses daily. She only likes to wear pink socks, so add that to her Christmas list! She "tells stories" all the time, using real people and places, so sometimes, she really sounds convincing!
Also, Andy will leave for training in San Antonio in a month. We really hope and expect Luke to be home by then, and want to enjoy our time together as a family much as we can before he leaves. We haven't told the older kids yet about him leaving, but are going to start preparing them this weekend. I know it will be hard on them, especially since I was gone for a month unexpectedly. We are in our "groove" again, but will adapt as needed next month. We just hope and pray that none of these big transitions affect them negatively behaviorally now or in the future. Oh, and if you feel led to pray for us, please include me (Cathy) in them for patience, health, and sleep in the coming months! We have had so much going on over the past few months that I haven't been able to, nor wanted to, think about this next phase of our journey. I am a bit anxious, but know God will give us guidance and strength to get through it.
Wednesday, October 24, 2012
Bottles, Aunt Brandy, and More!
Luke continues to do well. He weighs 3 lbs, 9 oz tonight, which is the same as yesterday. The doctors are keeping a close eye on his weight gain curve because they think he should be gaining a bit faster than he is. Right now, he gets a high calorie formula twice a day and breastmilk at his 6 other feeding times. They can add another formula feeding in if necessary, so we will see what he does this week. He took his first full bottle from me yesterday, and another one for his nurse. Today, he took one again for me. Then, he took less than half for the nurse, and about 3/4 for Andy tonight. We are allowed to try bottle feedings up to 3 times a day right now. He will have to take all his feedings by bottle before he can go home, so we still have some growing to do.
We had a great visit with Brandy. She amazed me everyday at the amount of things she got done for us! The kids loved her, including Luke, as you can see in these photos. We miss her already!!
I am typing on my phone, so that is all for now. We are all doing great. Watch for Halloween photos next week. Luke has a costume ready that we got from Build-A-Bear!! :)
We had a great visit with Brandy. She amazed me everyday at the amount of things she got done for us! The kids loved her, including Luke, as you can see in these photos. We miss her already!!
I am typing on my phone, so that is all for now. We are all doing great. Watch for Halloween photos next week. Luke has a costume ready that we got from Build-A-Bear!! :)
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