Two nights ago, the 18th at 9:15pm, Wyatt took a stand. He pulled out his feeding tube for the last time. Since he had pulled it out and had been eating well the nurse asked for the doctor's permission to leave it out and see if he could do without it. He has been doing great ever since. He was still struggling a bit with his oxygen saturations so they decided to let him start "demand feeding." Their thinking behind this was that he would eat more and breath better if he decided when he was awake enough to eat. It has worked really well. His oxygen level has fallen a few times since then but has been of his oxygen since yesterday at 8am.
He is doing so well that they have started talking about the things we need to do before we head home. We took the CPR class today, went over almost all of the discharge papers (they show us how to take care of the baby on our own), brought the car seat in to make sure it hadn't been recalled and tomorrow he will take his car seat test. He has to sit in the car seat for a little over 2 hours and keep all his vitals strong. They do this to be sure that if something goes wrong he will be able to stay alive for the trip all the way home and back again. This is the only NICU nearby so this is where he would come back if need be.
They have started talking "care by parent" which means that I will get to move into a little room by the NICU and practice taking care of Wyatt without them for 24-48 hours, depending on how well he does. I am hoping to do that tomorrow and be home before the weekend is out...but if not I will still be okay. But, oh to be home, what unspeakable joy!
Tonight he is taking a 12 hour apnea test to make sure that he is breathing well at all times. If the test doesn't go well they will send us home with an apnea machine. I hope he does well, but part of me would like the safety of the machine. I always worry about my babies when I lay them down to sleep. I lie in bed wondering if they are still breathing and that was with healthy full term babies. So I imagine this will be harder to not worry about. God has taken care of him so far so I'll have to trust Him to keep him breathing if that is His plan. OR I could just keep him strapped to me at all times...
Have been thinking about doing that anyway to make up for all the time lost to us in the NICU. We have some serious mommy Wyatt cuddle time to make up.
I'll keep you posted, as always. Thank you so much for your prayers and support! We're almost home! After 3 1/2 months, we are almost home.
Thursday, October 20, 2011
Tuesday, October 18, 2011
More of the same
Ready to be all together as a family again.
Wyatt really is doing well though. He is eating so well that they are letting him sleep up to 4 hours at a time now before feeding him again. He is taking an of average 15mls over what they require of him at each feeding. So that is great. The bummer comes in because he is back on oxygen today. He just can't seem to figure out how to eat really well and breath really well at the same time. Either that or the eating just tires him out so much that he can't regulate his breathing. It is hard to see him struggle to thrive on his own. But he is still 10 days from his due date, so he has time. And if we stay past his due date, so be it. Just want what is best for him.
Please keep praying for Wyatt to get strong so we can go home. Pray for the rest of us to have joy in the waiting and patience while we wait. Pray for me to be a happy mommy as I drive from one place to another, each time leaving at least one of my children behind. Pray for Mitch as he is away from us a lot more in this season than he was even when I was in the hospital. And please pray for the other families in the NICU who have children who are far worse off then Wyatt. Pray that we would be a light to them, that God would give opportunities to minister to them and that He would give them peace in their storm.
Saturday, October 15, 2011
October 15th
Had the same nurse today that made the decision to change his bottle earlier in the week and started all this mess. Had to pray a lot before I saw her and was thankful for the reminder from Romans 12 that it is my job to renew my mind and not conform to this world. If I didn't serve the Lord then it would be fine to tell that lady off. But we have a higher call and I am glad that he reminded me of that this morning so that I could honor Him in the NICU.
Wyatt is doing better but is still weak. This morning I tried to nurse him and he immediately went haywire. They were going to just feed him through the tube but while they were getting it ready he calmed down and was alert and sucking his fingers, so I asked if we could try the bottle. He took 1/2 of his feeding. I was glad that I asked because the feeding tube really does feel like failure to me lately.
When I got to the car I turned on the radio and thought there had better be something encouraging on or I'm turning it off.
"And though my life is torn, I will praise you in this storm" was the first line I heard. It was perfect for the moment. Gotta love Casting Crowns. The song goes something like this: "I lift my eyes up to the hills, where does my help come from? My help comes from the Lord maker of heaven and earth.
I will praise you in this storm and I will lift my hands cause you are who you are, no matter where I am. Every tear I cry, you hold in your hands. And though my heart is torn, I will praise you in this storm."
That really is how I feel. I have to choose to praise him in this storm that we are living though. My other alternative is to pity myself and ask "why me?" And it isn't about me, it is about Him!
He is being glorified in this situation and he will continue to be. It is up to me to trust him, by his grace. And it helps to remember that he knows all my tears, worries, stress and he cares about them and carries them.
I truly serve a Great God!
The rest of the day was more of the same. He ate pretty good and had to be tube fed part. He did eat the whole bottle for Mitch at 7pm. He chugged it in 8 minutes flat. I also got to give him a bath for the first time. Not his first bath, that would be gross. He is a month old today. But it was my first time to bath him. It went well even though I was nervous at first. It was different from bathing a kid in the kitchen sink. There was an audience this time and the nurses made me nervous. But Wyatt did great. He didn't' even cry until I took him out of the water to dry him off.
They are going to try to take him off of the oxygen tonight. Praying that he will be strong enough to breath well on his own.
I'll let you know how he does. Thanks again for praying.
Wyatt is doing better but is still weak. This morning I tried to nurse him and he immediately went haywire. They were going to just feed him through the tube but while they were getting it ready he calmed down and was alert and sucking his fingers, so I asked if we could try the bottle. He took 1/2 of his feeding. I was glad that I asked because the feeding tube really does feel like failure to me lately.
When I got to the car I turned on the radio and thought there had better be something encouraging on or I'm turning it off.
"And though my life is torn, I will praise you in this storm" was the first line I heard. It was perfect for the moment. Gotta love Casting Crowns. The song goes something like this: "I lift my eyes up to the hills, where does my help come from? My help comes from the Lord maker of heaven and earth.
I will praise you in this storm and I will lift my hands cause you are who you are, no matter where I am. Every tear I cry, you hold in your hands. And though my heart is torn, I will praise you in this storm."
That really is how I feel. I have to choose to praise him in this storm that we are living though. My other alternative is to pity myself and ask "why me?" And it isn't about me, it is about Him!
He is being glorified in this situation and he will continue to be. It is up to me to trust him, by his grace. And it helps to remember that he knows all my tears, worries, stress and he cares about them and carries them.
I truly serve a Great God!
The rest of the day was more of the same. He ate pretty good and had to be tube fed part. He did eat the whole bottle for Mitch at 7pm. He chugged it in 8 minutes flat. I also got to give him a bath for the first time. Not his first bath, that would be gross. He is a month old today. But it was my first time to bath him. It went well even though I was nervous at first. It was different from bathing a kid in the kitchen sink. There was an audience this time and the nurses made me nervous. But Wyatt did great. He didn't' even cry until I took him out of the water to dry him off.
They are going to try to take him off of the oxygen tonight. Praying that he will be strong enough to breath well on his own.
I'll let you know how he does. Thanks again for praying.
Friday, October 14, 2011
Some fun times
I am usually updating you on what is going on in the NICU and let's face it, it is not always happy stuff. But we have a lot of fun here in Springfield. Kennedi and William are having a blast at the Ronald McDonald house, all the fun parks that we find, going to football games at the Kickapoo Chiefs stadium and watching Daddy and the future men boys play flag football every Saturday. We went to Andy's together (the fist time for Kennedi, William and myself) and had a blast...as you will see. My mom made a map of the back yard and took the kids on an adventure to find treasure! They found some snacks at the end of their journey and thought it was awesome. They play in the playroom every day, have too many books to read in a lifetime but we are trying to get to them all (not the mean ones though, Kennedi reminds me of that). William and Kennedi have started swinging in big swings without any straps and climb like monkeys up rock walls and slides. William very bravely shouts "I climbing" as he scurries up the wall. He is also a fan of "I do it my elf" that last word is supposed to be self but he says it elf. Too cute :-) The kids got to paint for the first time in their lives...yes I am that mom who never let them paint because it would be too much of a mess to deal with, so thank you Ronald McDonald house volunteers for doing it for me. They really did love it...maybe I'll do it when we get home...maybe.
The Ronald McDonald House
Several of you have asked what our living situation looks like right now so I thought I'd share some photos of the Ronald McDonald house with you. We have been very blessed to get to stay here. The staff are great and take wonderful care of us. Donate to them! :-)
Another day another journey
Well, thank you all for your prayers, but today was another hard day.
Wyatt did great last night, he ate even more than he was supposed to. YAY!
But this morning a little before 7am his respiration rate shot up and his oxygen level bottomed out below 70%.
When I arrived at 7 to feed him, he was back on oxygen and doing so poorly that they would not let me feed him. They weren't even going to let me hold him until I promised that if he got worse I would put him back. I got to hold him for 30 minutes. He was still breathing really fast and they had ordered another chest x-ray. I spoke to the doctor and she was very reassureing saying that he was getting close to being ready to go home but that having him eat all his feedings for the last 24 hours must have over tired him. They had not put the feeding tube back in yet and wanted to wait till 8:30 to see if he would eat on his own. I had to go home to wake up the kids so I left and said some prayers.
When I called at 9:30am he had his tube back in. They had tried to feed him but he choked immediately so they had to do the full feeding through the tube. They took the chest x-ray and it looked a little hazy but not bad. So all that was left to do was wait and see how he did when I got to go back at 12:30.
I walked in at 12:30 expecting to nurse but was told that he was too worked up to nurse but if we could get him to calm down (respiration rate below 60) I could try the bottle. When the nurse checked it was right at 60 so she let me try.
While I was holding him waiting for him to calm down to eat I noticed that his bottle had changed again to a much slower flow bottle that his occupational therapist had ordered last Friday. I asked about it because one of the nurses had switched him to a different bottle on Tuesday and even after I asked her to change it back she refused. This information sent my new nurse on a hunt for answers. I was very thankful for her. Some of the nurses don't take me very seriously, so to be listened to and to see her take action was refreshing.
She found the day when Wyatt's nurse had changed the bottle from the ordered one to a faster flow and what do you know, it was the day that things all fell apart. He had been doing fine and that day he was on oxygen for the first time since he was a week old, had three different blood tests in two days and two chest x-rays. My nurse said she couldn't say that the change in the bottles was what made all this happen but that it was "quite a coincidence."
I was upset...okay really mad at that first nurse who changed things just because she couldn't find the right bottle and was too lazy to go back and get a new one. But then I was just really thankful for Ashlee my nurse today and all she did to make it right. I now have the authority to tell any nurse "No, you may not change his bottle unless his OT orders it." Feels good to know that I can fight for my son and do it with permission from the NICU staff.
In the midst of all this research and new found authority, he finally settled down. He took the whole bottle and did really well. He was still on oxygen but it was good to see him eating well again. I got to hold him for a while longer and was off to the Ronald McDonald house again to be mommy to Kennedi and William.
His third feeding of the day was at 3:30 and we got him real worked up before we tried to feed him. He does not like getting vital signs or blood pressure taken. He was even mad when I took his temperature. He calmed down at 4 and literally chugged the milk from the bottle. He ate all 45mls in 8 minutes!!! And then he passed out. :-) So I just held him close and sang to him till it was time to go back home.
As of tonight his respiration is getting better and his is down to a very small amount of oxygen being added to his air. He did have to be tube fed at 7 but I think if we had been able to be there they might have tried to calm him down and then feed.
So we are letting Wyatt have a day or two to bounce back from this hard week and then they will reevaluate him to see if they will take the tube out again, etc.
Thanks so much for all of your prayers, encouragement and support. Please keep us in your prayers. And please pray for wisdom for all those taking care of our son.
Also I met a really nice grandmother on my way out of the hospital yesterday and her two year old granddaughter, Lainy, is in the ICU with brain cancer. They don't think that they can do anything for her. I can't imagine the agony that their family is going through to see their sweet daughter go from full of joy and energy to being confined to bed and struggling to survive. God knows what is to come in their lives, please pray that they will draw near to him in this time when nothing makes sense.
Wyatt did great last night, he ate even more than he was supposed to. YAY!
But this morning a little before 7am his respiration rate shot up and his oxygen level bottomed out below 70%.
When I arrived at 7 to feed him, he was back on oxygen and doing so poorly that they would not let me feed him. They weren't even going to let me hold him until I promised that if he got worse I would put him back. I got to hold him for 30 minutes. He was still breathing really fast and they had ordered another chest x-ray. I spoke to the doctor and she was very reassureing saying that he was getting close to being ready to go home but that having him eat all his feedings for the last 24 hours must have over tired him. They had not put the feeding tube back in yet and wanted to wait till 8:30 to see if he would eat on his own. I had to go home to wake up the kids so I left and said some prayers.
When I called at 9:30am he had his tube back in. They had tried to feed him but he choked immediately so they had to do the full feeding through the tube. They took the chest x-ray and it looked a little hazy but not bad. So all that was left to do was wait and see how he did when I got to go back at 12:30.
I walked in at 12:30 expecting to nurse but was told that he was too worked up to nurse but if we could get him to calm down (respiration rate below 60) I could try the bottle. When the nurse checked it was right at 60 so she let me try.
While I was holding him waiting for him to calm down to eat I noticed that his bottle had changed again to a much slower flow bottle that his occupational therapist had ordered last Friday. I asked about it because one of the nurses had switched him to a different bottle on Tuesday and even after I asked her to change it back she refused. This information sent my new nurse on a hunt for answers. I was very thankful for her. Some of the nurses don't take me very seriously, so to be listened to and to see her take action was refreshing.
She found the day when Wyatt's nurse had changed the bottle from the ordered one to a faster flow and what do you know, it was the day that things all fell apart. He had been doing fine and that day he was on oxygen for the first time since he was a week old, had three different blood tests in two days and two chest x-rays. My nurse said she couldn't say that the change in the bottles was what made all this happen but that it was "quite a coincidence."
I was upset...okay really mad at that first nurse who changed things just because she couldn't find the right bottle and was too lazy to go back and get a new one. But then I was just really thankful for Ashlee my nurse today and all she did to make it right. I now have the authority to tell any nurse "No, you may not change his bottle unless his OT orders it." Feels good to know that I can fight for my son and do it with permission from the NICU staff.
In the midst of all this research and new found authority, he finally settled down. He took the whole bottle and did really well. He was still on oxygen but it was good to see him eating well again. I got to hold him for a while longer and was off to the Ronald McDonald house again to be mommy to Kennedi and William.
His third feeding of the day was at 3:30 and we got him real worked up before we tried to feed him. He does not like getting vital signs or blood pressure taken. He was even mad when I took his temperature. He calmed down at 4 and literally chugged the milk from the bottle. He ate all 45mls in 8 minutes!!! And then he passed out. :-) So I just held him close and sang to him till it was time to go back home.
As of tonight his respiration is getting better and his is down to a very small amount of oxygen being added to his air. He did have to be tube fed at 7 but I think if we had been able to be there they might have tried to calm him down and then feed.
So we are letting Wyatt have a day or two to bounce back from this hard week and then they will reevaluate him to see if they will take the tube out again, etc.
Thanks so much for all of your prayers, encouragement and support. Please keep us in your prayers. And please pray for wisdom for all those taking care of our son.
Also I met a really nice grandmother on my way out of the hospital yesterday and her two year old granddaughter, Lainy, is in the ICU with brain cancer. They don't think that they can do anything for her. I can't imagine the agony that their family is going through to see their sweet daughter go from full of joy and energy to being confined to bed and struggling to survive. God knows what is to come in their lives, please pray that they will draw near to him in this time when nothing makes sense.
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