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!

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."

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

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

More Pictures

Nathan sleeping in the rooming-in room.

Nathan lying on the bed.

Brandon and Keri visited us in the room.

Steph reading to Nathan.

Leaving NICU for the last time.

Nathan riding back to the house.

Nathan and Jacen sleeping.

Jacen enjoying some "tummy time".

Nathan sleeping in his own bed....finally.

So, for those of you who don't know me that well, I'm a big nerd. Yes, I still collect comic books. So, after getting Nathan home and settled, I took Jacen to Star Books and Comics.

Jacen with Tyson

Tyson bought Jacen his first comic book.

The boys at their two month check up.

Since we were already at the hospital for the appt. with the pediatrician we stopped by NICU for a visit. We got to see several friends.

Nathan and Alison

Nathan had blood work done that day also. Later that day, due to some concerns on that blood work, Nathan was admitted to PICU.

Nathan in his first PICU bed

Nathan in an actual crib in PICU.

Steph had a sore throat but she was still able to come up and read to Nathan.

They found this toy in PICU. Nathan was fascinated by it.

Jacen likes to sit/sleep in daddy's recliner.

Nathan back in his own bed.

Nathan in his bed with his feeding pump all setup.

Grandpa with Nathan and Jacen.

The boys in OU stuff. If this hadn't come from their great grandma I don't think I would have allowed it.

The boys in their monogrammed shorts.

Busy

So, it's been crazy since arriving home with Nathan. Between the feeding times for both boys, making sure Nathan's feeding pump stays full and dealing with all of Nathan's meds, sometimes I feel like Steph and I are both constantly running. However, it's been good. All of our family has gone home now. We really appreciated their help but Steph and I decided it was about time we got a routine figured out with just the four of us. It's actually been kind of nice. I go back to work on Monday so keep Steph in your prayers.

Oh, and I know I keep promising pictures but it seems like something keeps coming up. I'll do my best to get some up tomorrow.

Going Home!

We will be leaving PICU with Nathan in the next couple of hours! We are just finishing up some last minute paperwork now. Obviously, things will be a bit different from when we left NICU. Nathan will be going home with 4 additional prescriptions, bringing his grand total to 10. One of those is a shot that Steph or I will have to give 3 times a week. He will also be going home with an NG tube. This will allow him to get some slow overtime feeds. This will supplement what we are bottle feeding him every 3 hours. The plan is to slowing transition off the overtime feeds and back to just bottle feedings.

We will also have some in-home healthcare that will help supply the medical equipment we need and will have on-call nurses if we need assistance. They will also have a nurse that comes out 2-3 times a week to check on Nathan and make sure there isn't anything we need.

Please continue to pray for Nathan. Also pray that Steph and I can give him the best care possible.

Praise You In This Storm

I've always found music to be a release for me. It's so soothing. I love to sing at the top of my lungs. I'm self-conscious about my singing so I rarely sing loudly in front of anyone but Steph. In the same way that music soothes me, it also speaks to me, sometimes in ways that plain words just don't. There have been several songs that I've heard since the boys were born that have really spoken to me. One you see below. It's called Praise You In This Storm by Casting Crowns. I heard this song for the first time while driving home from the hospital late one evening. Ironically, the rain was pouring down that night. I was reminded by this song that God doesn't promise to take all our pain away. He never claims that he will miraculously make everything perfect. What He does promise is that he will be with us through the storms. No matter how bad things get, no matter how alone we feel, God is always there.

That has been the hardest thing for me through this whole process. I want God to "fix" it. I so desperately want him to heal Nathan completely. And I so badly want the answer to my biggest question.....WHY?!? Unfortunately, I'm guaranteed none of these things. What I am guaranteed is that God will walk through this with Steph and I. That He will get us through the storm, regardless of the outcome.

"Praise You In This Storm" - Casting Crowns

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

(Chorus)
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

(Chorus)
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Update on Nathan

Nathan's labs looked better today. He's currently getting a slow, continous feed through a NG (nasogastric) tube. This has helped him get some of the nutrition he needs. We are currently working out medications and feedings. Obviously, we don't want to end up back in here next week. Dr. Haefner (the intensivist in PICU) says she expects we'll be home by Wednesday. Nathan will go home on 4 more medications (bringing his current total to 10 prescriptions) and a special formula for infants with renal function problems.

On a side note, I'd like to apologize to anyone who has been unfortunate enough to be around me since Friday evening. I woke up this morning around 5 and realized I hadn't left PICU in 1 1/2 days, meaning I hadn't showered or changed clothes in that amount of time either. And it's not exactly cool back here. So, yeah, I now realize why the nurses were standing as far from me in Nathan's room as possible.

Still in PICU

Nathan is still receiving fluids today. His feedings have been going about the same though. Still throwing up a decent portion of them or we are having to stop short of the amount he should be eating to prevent throwing up. Dr. Higgins, his gastroenterologist, is looking into the problem. Nathan is also very anemic so he is receiving a blood transfusion today. There are some concerns with this. Nathan's potassium level is very high because of his ongoing kidney problems. Any blood he would be transfused with will also contain potassium. An increase of too much potassium in Nathan's system could cause him to go into cardiac arrest. All of this is being watched closely but please keep little Nathan in your prayers. He is having a rough few days.

Interesting Few Days

The last few days have been rather interesting and crazy. The appointment with Dr. Brown went well. We haven't seen any serious seizure in the last few days. He scheduled us to come back on Monday to have a phenobarbital level done so that we can see how well he's getting his medication.

We also had Nathan and Jacen's two month appt. with Dr. Gray, our pediatrician, today. The appointment went well. We got a lot of our questions answered and the boys got their 2 month vaccinations. Nathan also had some lab work done and we took the opportunity to stop by NICU and visit some of our friends.

This brings us to this afternoon. After we left the hospital, Steph took me up to work and headed home. I proceeded to get some work done (and make a giant mess of my desk by spilling my Frosty from Wendy's all in my keyboard). Around 4 I got a call from Steph. She had just received a call from Dr. Gray saying that there were some concerns about Nathan's bloodwork so he wanted to admit us back into the hospital. We headed to the hospital and got admitted into the PICU (Pediatric Intensive Care Unit). Nathan has been throwing up his feedings off and on since we got home from NICU. Apparently this has left him somewhat dehydrated. They are working to correct the problem but it's going to be slow because we don't want to rush anything with his fragile little body. We're also taking the opportunity to see several other doctor's while we are here.

Anyway, please keep Nathan in your prayers. Being back in the hospital after less than a week at home isn't good. Please pray that he can find the rest and healing he needs.


P.S. Yes, I promised pictures but for some reason I can't ever seem to get my laptop and the camera in the same place at the same time. Hopefully I will in the next few days.

Doctor Appointment

Nathan has his first post-NICU doctor appointment today. This appointment is with Dr. Brown, his pediatric neurologist. Hopefully this appointment will go well. Nathan's seizure activity has been steadily increasing since we left NICU. I'm sure this is related to the fact that he's spitting up part of most of his feedings so he isn't getting his full dose of phenobarbital. Our hope is that Dr. Brown can give us some advice on how to handle that in the future.

Please pray that this appointment goes well and that we can get the seizures under control.

Overdue Thank You!

There are so many people that our family owes thank you to. However, I don't think Steph and I would have made it through the last 9 weeks without the amazing nurses in Covenant's NICU. These men and women have been with us since the very moment of Nathan and Jacen's birth. They laughed with us and cried with us. They took care of our babies and kept Steph and I company through those long days and nights. They gave advice when we asked opinions about some very tough decisions, listened to me babble (I've found that I tend to ramble on when I'm nervous/scared) and did their best to comfort us while helping prepare Steph and I for the future. They are some of the most caring, loving and compassionate people I've ever met and were definitely a blessing from God in this very difficult time.

Nathan's Home!!

Nathan was discharged from NICU on Saturday around 10 am. Steph and I are still getting used to the extra feeding schedule and dispensing his meds. Needless to say, taking a baby home on 6 different medications is far different than when we brought Jacen home on none. Regardless, it is such a blessing to have them both home.

Nathan seems to be settling in good. He has been eating well and sleeping most of the time between feedings. Patches looked at us weird when we brought Nathan in on Saturday though. I know he's thinking "Where do they keep getting these babies from and when are they going to return them?".

Breaking my routine has been weird. I've gotten so used to being at the hospital that I spent part of the day Sunday feeling like I should be elsewhere and on my way to work this morning I found myself on auto-pilot heading to the hospital. This is one routine I'll be glad to break though.

I'll try and post pictures from this weekend when I get home and have both cameras.