Jacen
Nathan - First Time!
5 years ago
Wednesday, October 21, 2009
Wednesday, October 14, 2009
Update from Stephanie
Time continues to fly. We spent a week at the hospital trying to figure out why Nathan is in pain. No luck, but we found out he can have tylenol and morphine which control it pretty well without affecting his liver. Because of our hospital visit, we missed 3 appointments which we had to reschedule. The boys will be almost 5 months old before they have their 4 month checkup. I am anxious to see how much they weigh. Nathan weighed 9lbs 7oz and Jacen weighed 11lbs the last time they were weighed. We are staying busy with appointments, bloodwork, nurse visits, ECI, feedings, and playtime.
After Nathan being very fussy for quite a while, we are seeing the old Nathan again. He will sit in his swing and bouncy seat and look around. He slept in the hospital bed for 3 hours straight a few times. He slept in his swing today as well. Before the hospital visit he would only sleep on me. He smiled in the hospital!!!!!! Hopefully we can start bottling again this week. I also hope to start playtime and tummy time again soon
Jacen is still keeping us entertained with his smiles and "talking" to the toys. He is really enjoying tummy time now. He holds his head way up and rolls over from his tummy to his back when he is happy instead of mad. He is now trying to figure out how to roll from his back to his tummy. He is focusing more on his surroundings now. We have even put him in the Exersaucer. The first time, he had a very confused look on his face, but he liked it after that. He has definitely found his thumb now. He loves to "play" computer games with Daddy. The pediatrician said we can start cereal this month, so hopefully we can try that this weekend. We will take pictures!!!!!
Tuesday, September 22, 2009
Nathan
Nathan didn't like tummy time this day.
Started here.
Scooted himself to here crying the whole time.
Tummy Time
They enjoy laying on their tummies too much to get the point of tummy time!
Jacen does sometimes practice lifting his head.
Jacen has found his thumb.
More Visitors
Barry and Debbie Stephens - Thank you for the meal and visit!
Barry and Jacen
Debbie and Nathan
Visitors
Nurse Keri with Nathan - Thank you for watching the boys!
Kaylin with Nathan - Thank you for your help!
Janelle with Jacen - Thank you for your help!
Randa with Both Boys - Thank you for your help!
Helene and Alison with Both Boys - Thank you for visiting!
Visit to Daddy's Work
Vicki and Jacen
Jeanine, Tess and Ashley with Nathan
Julie and Abinaya with Jacen
Monday, September 21, 2009
Boppy Pictures
Jacen grinning while in the Boppy.
Patches wanted to sit in the Boppy too!
Nathan in the Boppy.
Thursday, September 17, 2009
Update Finally!!
The last month or so has been crazy. Trying to adjust to having both boys home has been fun but both Steph and I have been extremely busy. I'm back at work so I've definitely been missing my boys during the days. The weekends have been really nice for us because it's a chance for the 4 of us to spend time together as a family without a bunch of other stuff going on. Here is a quick update on the boys. We'll try and get pictures posted soon.
Jacen – He is smiling all the time now. He is still sleeping through the night in the bassinet. We are going to move him to his crib hopefully tonight. He is enjoying tummy time a little more. He lifts his head and upper body off the floor with his arms. Sometimes when he gets mad enough, he will roll himself onto his back. He is also enjoying spending short amounts of time sitting up in the bumbo. He is getting so big, and time is flying.
Nathan – He has been off his feeding tube since Saturday morning! It sometimes takes him an hour to eat, so it makes for long nights. He enjoys tummy time and holding his head up. He really enjoys snuggling and his swing. He is still medically fragile, so we still ask for your prayers for a miracle. He could pass away from renal failure or a heart attack at any moment. The doctors are nervous about Jacen bringing home a cold and Nathan ending up with pneumonia. One doctor predicts he won’t make it through the winter. Another predicts, he won’t last a year. Because of all of this, they suggest not taking either one to Wal-Mart or other big stores and not even Bible class. That is really hard for us since we are the ministry leaders over that area. He is a patient of Hospice. Knowing all of this we are enjoying every moment we have. Steph is taking parenting leave after her FMLA time is up if he is still with us.
Jacen – He is smiling all the time now. He is still sleeping through the night in the bassinet. We are going to move him to his crib hopefully tonight. He is enjoying tummy time a little more. He lifts his head and upper body off the floor with his arms. Sometimes when he gets mad enough, he will roll himself onto his back. He is also enjoying spending short amounts of time sitting up in the bumbo. He is getting so big, and time is flying.
Nathan – He has been off his feeding tube since Saturday morning! It sometimes takes him an hour to eat, so it makes for long nights. He enjoys tummy time and holding his head up. He really enjoys snuggling and his swing. He is still medically fragile, so we still ask for your prayers for a miracle. He could pass away from renal failure or a heart attack at any moment. The doctors are nervous about Jacen bringing home a cold and Nathan ending up with pneumonia. One doctor predicts he won’t make it through the winter. Another predicts, he won’t last a year. Because of all of this, they suggest not taking either one to Wal-Mart or other big stores and not even Bible class. That is really hard for us since we are the ministry leaders over that area. He is a patient of Hospice. Knowing all of this we are enjoying every moment we have. Steph is taking parenting leave after her FMLA time is up if he is still with us.
Tuesday, August 25, 2009
Update from Stephanie
It has definitely been weird these past few weeks to not be in teacher inservice and to not start the first day of school. I am still using FMLA time. I am really enjoying the time with both boys.
Jacen - He is doing great. He weighed 8lbs 5oz at his last appointment. He has now slept through the night the past two nights. Yeah!!!!! He loves to be held and snuggled. I wish I could do that more, but with two boys I have to share my time. He still doesn't like tummy time.
Nathan - He weighed 7lbs 7oz at his last appointment. We are staying busy with bloodwork twice a week, doctor appointments once a week, nurse visits three times a week, and soon ECI. Everyone that sees him comments that he is less yellow. We are still dealing with liver, kidney, and neurological issues. He is still on lots of medications. He is on the feeding tube and bottle feeding. When we left PICU he was only bottling about 15ccs at each feeding. He is now taking 40ccs. Lately, he has been more awake. When he is awake he loves to look around and likes to watch TV with us. He still likes to be read to and loves tummy time. We thank God for every day that we have with him.
We really appreciate all that everyone has done for us. Thank you for the continued prayers!
Jacen - He is doing great. He weighed 8lbs 5oz at his last appointment. He has now slept through the night the past two nights. Yeah!!!!! He loves to be held and snuggled. I wish I could do that more, but with two boys I have to share my time. He still doesn't like tummy time.
Nathan - He weighed 7lbs 7oz at his last appointment. We are staying busy with bloodwork twice a week, doctor appointments once a week, nurse visits three times a week, and soon ECI. Everyone that sees him comments that he is less yellow. We are still dealing with liver, kidney, and neurological issues. He is still on lots of medications. He is on the feeding tube and bottle feeding. When we left PICU he was only bottling about 15ccs at each feeding. He is now taking 40ccs. Lately, he has been more awake. When he is awake he loves to look around and likes to watch TV with us. He still likes to be read to and loves tummy time. We thank God for every day that we have with him.
We really appreciate all that everyone has done for us. Thank you for the continued prayers!
Monday, August 17, 2009
He's My Son
I just wanted to share another song that has really touched me lately. I remember very vividly the first time I heard this song. I was leaving the hospital late one evening. I was feeling anxious about Nathan and his condition that evening. I knew Steph was in bed by that point so I called a close friend of ours. We talked for a bit and then prayed over the phone. As we hung up, I turned the radio up and this song was on. It hit me hard. I had to pull over because tears were streaming down my face. You see, not a week earlier I had been praying the exact same thing.
It was June 29th. I don't think I will ever forget that day. I headed to the hospital that day feeling pretty good. Nathan had a good weekend so I was confident that it would be another good day. When I got into the unit I knew that wasn't going to be the case. Nathan was desating....a lot. Now, back when he had his first ET tube (the smaller one), this wasn't an uncommon occurrence but he was doing it more frequently that morning and not recovering nearly as fast. The day was spent adjusting vent settings and trying to keep his oxygen saturation in a good place. Unfortunately, nothing was working. He kept dipping down lower and lower. Around 5:30 or so, Dr. C decided that he needed to be reintubated with a larger tube. He had originally not wanted to do this because it could cause more bleeding problems but he was left with no other option at this point. I reached down and kissed Nathan as we got ready to step out of the room. He looked up at me with a painfully strangled look on his face and I was almost positive we were going to lose him there. Then Steph and I stepped out to give them room to work. Dr. C, Karyn, Becca and Susi were all around Nathan's bed to do this procedure. Because of the number of folks around his bed, it was impossible to see Nathan. All I could really see was his vitals monitor. I stood there holding Steph and slowly watched as his heart rate dropped further and further. I felt so helpless. Steph and I were crying and I just kept repeating "Father, please, let me take his place."
It was June 29th. I don't think I will ever forget that day. I headed to the hospital that day feeling pretty good. Nathan had a good weekend so I was confident that it would be another good day. When I got into the unit I knew that wasn't going to be the case. Nathan was desating....a lot. Now, back when he had his first ET tube (the smaller one), this wasn't an uncommon occurrence but he was doing it more frequently that morning and not recovering nearly as fast. The day was spent adjusting vent settings and trying to keep his oxygen saturation in a good place. Unfortunately, nothing was working. He kept dipping down lower and lower. Around 5:30 or so, Dr. C decided that he needed to be reintubated with a larger tube. He had originally not wanted to do this because it could cause more bleeding problems but he was left with no other option at this point. I reached down and kissed Nathan as we got ready to step out of the room. He looked up at me with a painfully strangled look on his face and I was almost positive we were going to lose him there. Then Steph and I stepped out to give them room to work. Dr. C, Karyn, Becca and Susi were all around Nathan's bed to do this procedure. Because of the number of folks around his bed, it was impossible to see Nathan. All I could really see was his vitals monitor. I stood there holding Steph and slowly watched as his heart rate dropped further and further. I felt so helpless. Steph and I were crying and I just kept repeating "Father, please, let me take his place."
He's My Son - Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Can You hear me?
Can You see him?
Please don't leave him
He's my son
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Can You hear me?
Can You see him?
Please don't leave him
He's my son
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