Tuesday, March 31, 2009
public school
We have had to make a very hard decision concerning our 5 oldest children. We're sending them into the public school system...It may not seem like that big of a deal....but this is their first year in a public school, until last year they went to a small private school and last year I home schooled them. I had planned on continuing to home school until high school and then if they wanted to attend the high school they could, if not we'd go on with the homeschooling thing. BUT Obadiah threw a little bit of curve ball in my direction and so we had to figure something else out. Financially we couldn't send all 5 of them back to a private school and no one was jumping up and down to be "our teacher" for a year so that pretty much left us with one option. The public school system. All in all it has been a good experience. They have enjoyed being in the conventional school setting again. Making new friends, school lunches, field trips, and science projects. But they can't wait until next year when they can be home schooled again! They just make my little mommy heart melt. They really liked being home schooled. We did have fun and I got to know my kids a whole lot better during that year than I ever imagined possible. They probably think the same thing about me. This next school year will be a little more challenging because we do have Obadiah and he is a little go getter! He's getting into EVERYTHING and loving every minute of it. Although it may be a little more challenging I'm sure it will be just as rewarding as last year and I can't wait!
Wednesday, March 25, 2009
Home!!
It felt like it had been just about forever since I'd slept in my own bed. I was so thankful to be going home with my whole family. I really almost had to adjust to being in my own home again, isn't that kinda weird? Well this is where the fun begins...
Our first week at home really wasn't that much at home, we had a doctors appointment everyday during that first week...but we did get to sleep in our own beds at night!
When we were at home I was a mess...I was still getting comfortable having a special needs child, pumping breastmilk every 3 hours around the clock, feeding Obadiah every 3 hours around the clock, ( it took me about 30 minutes to pump and clean that stuff and it took an hour to put the breast milk through Obadiah's feeding tube and then I still had to clean that equiptment ) and some how still taking care of the other 6 kids. During those first few weeks I felt like all I was doing was hooking someone up to a pump or cleaning one :) I wish I knew how many times I hooked Obadiah up to the feeding pump and started the feeding only to come back an hour later to find the plug had popped out of his feeding tube and his whole feeding just went all over his bed. Grrrr....
Then there was the breathing treatments, which weren't too bad. And his oral meds, which had to be given through his tube, ended up on his clothes, carseat, or my lap too many times to count. I thought my other babies generated a lot of laundry, nothing compared to this kid :)
But we survived! We somehow, by the gace of God alone, made it through those first weeks. I'm not sure who fed my crew those first couple of weeks, sure hope they ate :) JK. We did have meals brought in by our church family and there's always frozen lasagna in the freezer. The kids and my husband did most of the house work. Mostly because I was so busy with darn pumps.
I realized just how wonderful my kids were through all of this. Not that I didn't know, I was just reminded I guess. Having gone through all of this they didn't complain, fuss, or get angry once.
And they had plenty of reasons to do so. They really gave up so much during those six weeks, we were supposed to be at home enjoying summer break, hanging out with friends, swimming, and playing outside. Not only this but there were days at a time that they would see us for literally 30 minutes in the morning before we went to the hospital. And of course looming above there heads was the fear that they might loose this baby brother that they hadn't even gotten to meet. My older children have since told me that they were afraid every time we came back from the hospital that we were going to tell them that he had passed away.
Sometimes I find myself thinking that it's not fair what my kids have gone through. What other 8 year old knows what a "flush" for a feeding tube is? How many 6 year olds say " mom, is his tube tucked " before picking their brother/sister up? Are there many 9 year olds that worry about their siblings SATS? But then I also realize my kids are stronger because of this, they are closer because of this, and they are more compassionate because of this. Would I change this if I could? Not in a million years....
We are, in part, who we are because of this!
Our first week at home really wasn't that much at home, we had a doctors appointment everyday during that first week...but we did get to sleep in our own beds at night!
When we were at home I was a mess...I was still getting comfortable having a special needs child, pumping breastmilk every 3 hours around the clock, feeding Obadiah every 3 hours around the clock, ( it took me about 30 minutes to pump and clean that stuff and it took an hour to put the breast milk through Obadiah's feeding tube and then I still had to clean that equiptment ) and some how still taking care of the other 6 kids. During those first few weeks I felt like all I was doing was hooking someone up to a pump or cleaning one :) I wish I knew how many times I hooked Obadiah up to the feeding pump and started the feeding only to come back an hour later to find the plug had popped out of his feeding tube and his whole feeding just went all over his bed. Grrrr....
Then there was the breathing treatments, which weren't too bad. And his oral meds, which had to be given through his tube, ended up on his clothes, carseat, or my lap too many times to count. I thought my other babies generated a lot of laundry, nothing compared to this kid :)
But we survived! We somehow, by the gace of God alone, made it through those first weeks. I'm not sure who fed my crew those first couple of weeks, sure hope they ate :) JK. We did have meals brought in by our church family and there's always frozen lasagna in the freezer. The kids and my husband did most of the house work. Mostly because I was so busy with darn pumps.
I realized just how wonderful my kids were through all of this. Not that I didn't know, I was just reminded I guess. Having gone through all of this they didn't complain, fuss, or get angry once.
And they had plenty of reasons to do so. They really gave up so much during those six weeks, we were supposed to be at home enjoying summer break, hanging out with friends, swimming, and playing outside. Not only this but there were days at a time that they would see us for literally 30 minutes in the morning before we went to the hospital. And of course looming above there heads was the fear that they might loose this baby brother that they hadn't even gotten to meet. My older children have since told me that they were afraid every time we came back from the hospital that we were going to tell them that he had passed away.
Sometimes I find myself thinking that it's not fair what my kids have gone through. What other 8 year old knows what a "flush" for a feeding tube is? How many 6 year olds say " mom, is his tube tucked " before picking their brother/sister up? Are there many 9 year olds that worry about their siblings SATS? But then I also realize my kids are stronger because of this, they are closer because of this, and they are more compassionate because of this. Would I change this if I could? Not in a million years....
We are, in part, who we are because of this!
Monday, March 16, 2009
Ronnie Mac aka The Ronald McDonald House
While Obadiah was in the hospital we had the privilege of staying at Ronnie Mac's place. ( aka the Ronald McDonald House ) The sign says "a home away from home" and let me tell you that is exactly what it was for us. We were there for 6 weeks, and it was a wonderful experience for us. The staff was so compassionate, friendly, and always helpful.
The house that we stayed in had 34 bedrooms and they were almost always full. It had a fully stocked kitchen. ( every room does have it's own cabinet in the kitchen and a box in the refrigerator that is yours) But the food in the rest of the kitchen is for everyone to use. Most nights someone brings dinner in for the residents. We were blessed many nights with these meals. Sometimes it was a company, sometimes it was a church group, and sometimes it was someone who had been blessed in one way or another by the Ronald McDonald House. Always it was appreciated.
We made many new friends while staying there. Some that we plan to stay in touch with for years to come. The thing about the families that are there is we're all there for the same reason, our children. So although the problems or conditions weren't the same there was still this understanding between the parents that only happens when going through something like that. Quite often you would here parents sitting around their tables talking about their child's progress or something good -or not so good- that a doctor had done. It was as though we were one large family, and in someways I suppose we were because what is family if it isn't a support network.
For us being able to be 3 minutes from the hospital was wonderful because unfortunately we got more than one phone call telling us that our son wasn't doing well and we should get there as soon as possible. Also the fact that our other kids-remember we have 6 others- were able to stay there was great. We could still be a family-in between hospital visits. We watched movies, played on the play ground, took walks, or visited with our new friends and the staff/volunteers.
Every room is assigned a chore (we had 2 chores because we had 2 rooms. The fire code said no more than 4 people could stay in a room) This really made it feel like a huge family with everyone helping out and doing their part.
We plan to take an annual meal to the RMH that we were privileged to stay at. And some day when the kiddos are older I'd also love to volunteer.
The house that we stayed in had 34 bedrooms and they were almost always full. It had a fully stocked kitchen. ( every room does have it's own cabinet in the kitchen and a box in the refrigerator that is yours) But the food in the rest of the kitchen is for everyone to use. Most nights someone brings dinner in for the residents. We were blessed many nights with these meals. Sometimes it was a company, sometimes it was a church group, and sometimes it was someone who had been blessed in one way or another by the Ronald McDonald House. Always it was appreciated.
We made many new friends while staying there. Some that we plan to stay in touch with for years to come. The thing about the families that are there is we're all there for the same reason, our children. So although the problems or conditions weren't the same there was still this understanding between the parents that only happens when going through something like that. Quite often you would here parents sitting around their tables talking about their child's progress or something good -or not so good- that a doctor had done. It was as though we were one large family, and in someways I suppose we were because what is family if it isn't a support network.
For us being able to be 3 minutes from the hospital was wonderful because unfortunately we got more than one phone call telling us that our son wasn't doing well and we should get there as soon as possible. Also the fact that our other kids-remember we have 6 others- were able to stay there was great. We could still be a family-in between hospital visits. We watched movies, played on the play ground, took walks, or visited with our new friends and the staff/volunteers.
Every room is assigned a chore (we had 2 chores because we had 2 rooms. The fire code said no more than 4 people could stay in a room) This really made it feel like a huge family with everyone helping out and doing their part.
We plan to take an annual meal to the RMH that we were privileged to stay at. And some day when the kiddos are older I'd also love to volunteer.
pictures of Obadiah in the hospital
Obadiah at SMH about 4 hours old, this is the first time I got to see him.
Obadiah at ACH about 36 hors old, he gained almost 4 pounds in this 36 hours.
He was retaining so much fluid that his body looked like plastic.
Here is our little guy with his pacifier and he's got his eyes open!
Obadiah's med pole.
Mommy just watching her little man.
sleeping peacefully, and a lot less swollen.
This is Obadiah post heart surgery. His right hand looked awful, it took the I.V. team an hour and a half to get hi I.V. placed. They actually ended up having to cut his wrist to get it placed.
Obadiah at ACH about 36 hors old, he gained almost 4 pounds in this 36 hours.He was retaining so much fluid that his body looked like plastic.
Here is our little guy with his pacifier and he's got his eyes open!
Obadiah's med pole.Mommy just watching her little man.sleeping peacefully, and a lot less swollen.This is Obadiah post heart surgery. His right hand looked awful, it took the I.V. team an hour and a half to get hi I.V. placed. They actually ended up having to cut his wrist to get it placed.Saturday, March 14, 2009
Ventalators, heart conditions, feeding tubes,and other things Obadiah
We have 7 wonderful children. The first 6 were born naturally ( a couple even at home ) and were healthy "normal" children. Then came #7, Obadiah! The pregnancy was a normal healthy one, nothing out of the ordinary. I have always carried my babies past term and Obadiah was no exception. I was 13 days over due. On Saturday morning, May 17th, I woke up and noticed that I didn't feel any fetal movement. After eating breakfast and still not having any movement I called my midwife, she instructed us to make our way to the hospital. We arrived at the hospital at 11:30 in the morning. They did an ultrasound and found that I was low on amniotic fluid after consulting the on call Dr. they decided to keep us and start pitocin, about an hour into that they broke my water. Thick meconium is all that came out. They still thought that they could have me deliver vaginally, but about 5 minutes later the baby's heart rate dropped and they called for an emergency c-section. I was scared to death. There were 3 nurses, the doctor, and a NICU doctor and nurse in the room. As soon as our baby boy was born the NICU doctor whisked him out of the room, I didn't get to hold him, touch him, or even see him. After they were gone I looked at Myron, my husband, and said "he didn't even cry". Myron just held my hand.
While in the recovery room the NICU doctor came down to talk to us. She didn't come with good news. She told us that she didn't expect our son to live through the night, they were doing everything that they could but his out come didn't look promising. He was born with severe meconium aspirations and she suspected that he had a heart condition. Myron could go with her to see him for a minute but they were still working on him so he couldn't stay long. When Myron came back down to the recovery room, I was hoping to hear something positive but he didn't have anything positive to say. Things looked really bad. I was transferred to a room, and shortly thereafter they allowed me to go see our son. I wasn't prepared for what was awaiting me. He was completely sedated, intubated (breathing tube), and there were IV's and tubes and wires everywhere. It was very hard to see him laying there like that. While we were in the NICU the doctor told us that they were working on getting him stabilized so that they could bay flight him to the children's hospital. It took them 8 hours to finally get him stable enough for the trip.
Myron went up to the children's hospital in the morning, but not much had changed.
I was released on Monday morning and we headed up to the hospital. He looked so different. His birth weight was 6 pounds 10 ounces and in just 3 days he was up to almost 10 pounds! He was retaining all of his fluids. He was on 10 different medications, still sedated, and still intubated. But he was taken off of the conventional ventilator and put on a high frequency ventilator. ( instead of slow even breathing this machine puts very fast breaths into their lungs, it makes their whole body shake)
I will never forget walking into that NICU and walking past all of the tiny preemie babies to get to Obadiah-he was in the last bed. One of the first things that we noticed was how many meds were on his pole, he had 10! Looking around the room I noticed that most of the other med poles only had 3 or 4 meds. In the days that followed it became very evident that almost everyone that came in contact with Obadiah didn't think that he was going to live. On Sunday morning when Obadiah was admitted to the children's hospital the oxygen level in his blood was 17%. ( the normal level is 100% ) The doctor explained to us that when the body has that amount of oxygen it basically has to choose which organs will get oxygen because there isn't enough for all of them. If Obadiah makes it there is a great chance that you'll be facing some sort of brain trauma.
On his 10th day of life his doctors called us to set up a conference. In that meeting we were told that Obadiah was on maximum support and he was no longer a candidate for a procedure called ECMO. I was heart broken. I made it to the hall way before I broke down. This was the first time that I thought I might not be bringing my baby home. We already had lots of people praying for God's will to be done and that above all that God would be glorified through Obadiah's life, no matter how long or short it might be.
Day 12- I walk into the NICU to see Obadiah and as I'm sitting there watching him, I notice that he is sucking his ventilator tube! I was ecstatic! The nurse was very quick to tell me that when babies are sedated as heavily as Obadiah was they don't suck on their vent tubes. But I knew what I saw. He did it several more times that day! The next morning when I went to see him I walked in to find my baby with a pacifier in his mouth!! I couldn't believe it. The nurse cut his pacifier so that it would fit around his ventilator tube and he was sucking on it! They also decided to start weening a couple of his sedation meds so he had his eyes open! It was a great day for us. I know that these sound like pretty small things but I felt like they were huge leaps in the right direction.
Two days later we got a phone call from Obadiah's doctor saying that his heart medication had stopped working. He was stabilized but he would be going into surgery first thing in the morning. He was born with a coarctation of the aorta and a bicuspid aortic valve. They would be repairing the coarc. Surgery went well, and Obadiah was transferred to the CVICU. ( cardiovascular intensive care unit )
It seems that once Obadiah had his coarc. repair things started going in the right direction for our little man.
Obadiah had to have feeding therapy and during one of his sessions the therapist didn't feel comfortable with the way he was eating so she ordered a swallow study. The study didn't take long because he failed immediately. His nurse looked at me and said "o.k. so he needs a feeding tube" and walked away. Huh? And thus we were thrown into the world of feeding therapies, feeding tubes, and thickening agents.
A week after his feeding tube placement we were finally on our way HOME!! Obadiah was 6 weeks old. Although Obadiah was our 7th child, I all of a sudden felt like a first time mom. And in some ways I was, this was the first time I had a cardiac baby, first time I'd had a baby with a feeding tube, first baby with lung disease and developmental delays. But I couldn't have been happier to be going home with him.
While in the recovery room the NICU doctor came down to talk to us. She didn't come with good news. She told us that she didn't expect our son to live through the night, they were doing everything that they could but his out come didn't look promising. He was born with severe meconium aspirations and she suspected that he had a heart condition. Myron could go with her to see him for a minute but they were still working on him so he couldn't stay long. When Myron came back down to the recovery room, I was hoping to hear something positive but he didn't have anything positive to say. Things looked really bad. I was transferred to a room, and shortly thereafter they allowed me to go see our son. I wasn't prepared for what was awaiting me. He was completely sedated, intubated (breathing tube), and there were IV's and tubes and wires everywhere. It was very hard to see him laying there like that. While we were in the NICU the doctor told us that they were working on getting him stabilized so that they could bay flight him to the children's hospital. It took them 8 hours to finally get him stable enough for the trip.
Myron went up to the children's hospital in the morning, but not much had changed.
I was released on Monday morning and we headed up to the hospital. He looked so different. His birth weight was 6 pounds 10 ounces and in just 3 days he was up to almost 10 pounds! He was retaining all of his fluids. He was on 10 different medications, still sedated, and still intubated. But he was taken off of the conventional ventilator and put on a high frequency ventilator. ( instead of slow even breathing this machine puts very fast breaths into their lungs, it makes their whole body shake)
I will never forget walking into that NICU and walking past all of the tiny preemie babies to get to Obadiah-he was in the last bed. One of the first things that we noticed was how many meds were on his pole, he had 10! Looking around the room I noticed that most of the other med poles only had 3 or 4 meds. In the days that followed it became very evident that almost everyone that came in contact with Obadiah didn't think that he was going to live. On Sunday morning when Obadiah was admitted to the children's hospital the oxygen level in his blood was 17%. ( the normal level is 100% ) The doctor explained to us that when the body has that amount of oxygen it basically has to choose which organs will get oxygen because there isn't enough for all of them. If Obadiah makes it there is a great chance that you'll be facing some sort of brain trauma.
On his 10th day of life his doctors called us to set up a conference. In that meeting we were told that Obadiah was on maximum support and he was no longer a candidate for a procedure called ECMO. I was heart broken. I made it to the hall way before I broke down. This was the first time that I thought I might not be bringing my baby home. We already had lots of people praying for God's will to be done and that above all that God would be glorified through Obadiah's life, no matter how long or short it might be.
Day 12- I walk into the NICU to see Obadiah and as I'm sitting there watching him, I notice that he is sucking his ventilator tube! I was ecstatic! The nurse was very quick to tell me that when babies are sedated as heavily as Obadiah was they don't suck on their vent tubes. But I knew what I saw. He did it several more times that day! The next morning when I went to see him I walked in to find my baby with a pacifier in his mouth!! I couldn't believe it. The nurse cut his pacifier so that it would fit around his ventilator tube and he was sucking on it! They also decided to start weening a couple of his sedation meds so he had his eyes open! It was a great day for us. I know that these sound like pretty small things but I felt like they were huge leaps in the right direction.
Two days later we got a phone call from Obadiah's doctor saying that his heart medication had stopped working. He was stabilized but he would be going into surgery first thing in the morning. He was born with a coarctation of the aorta and a bicuspid aortic valve. They would be repairing the coarc. Surgery went well, and Obadiah was transferred to the CVICU. ( cardiovascular intensive care unit )
It seems that once Obadiah had his coarc. repair things started going in the right direction for our little man.
Obadiah had to have feeding therapy and during one of his sessions the therapist didn't feel comfortable with the way he was eating so she ordered a swallow study. The study didn't take long because he failed immediately. His nurse looked at me and said "o.k. so he needs a feeding tube" and walked away. Huh? And thus we were thrown into the world of feeding therapies, feeding tubes, and thickening agents.
A week after his feeding tube placement we were finally on our way HOME!! Obadiah was 6 weeks old. Although Obadiah was our 7th child, I all of a sudden felt like a first time mom. And in some ways I was, this was the first time I had a cardiac baby, first time I'd had a baby with a feeding tube, first baby with lung disease and developmental delays. But I couldn't have been happier to be going home with him.
Subscribe to:
Posts (Atom)
