Momma’s Sweet Boy

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Originally uploaded by Wandering Eyre

Who wouldn’t love this face?

Sleepies

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Originally uploaded by Wandering Eyre

I went in Gideon’s room yesterday and the light was on long enough for me to snap a couple pictures. This is one of his favorite sleeping positions, with his left hand up by his face.

Good Days and Fridays

Yesterday was a day of firsts. It was Ries’ first day back at work. It was my first day to drive, be on my own all day, be without the Boppy (for sitting on), and my first post-partum check-up. It was Gideon’s first day off his Nitric Oxide.

A big day.

Gideon had a great day yesterday. He was completely weaned off his nitric oxide, which was helping to open up his lungs, and he also got a reduced morphine dose. He was a champ all day. We need a lot more days like yesterday before going home.

We also got some great news yesterday. If Gideon does well today and is not too agitated (he needs to be calm to be weaned off the ventilator so the doctors and nurses are very concerned with keeping him calm), we may be able to hold him today. Hooray! When the nurse practitioner told me that we may be able to hold him yesterday, I was afraid to breathe. I almost started crying. Almost. We still have not heard if this is a go for today yet. Fingers are crossed.

Our first night at home on Thursday was hard, but I think it was the right thing to do. We stayed at the hospital last night, but are going home tonight. We are at the hospital all day today and Gideon will have many visitors. Ries is in Gideon’s room, listening to rounds to see what the plans are for today. I am sitting at the Ronald McDonald House drinking tea and typing.

Ries finished reading The Magician’s Nephew last night to Gideon and today we started The Horse and His Boy. It is nice to sit in that dark room with my family, listening to the sound of Ries’ voice reading C.S.Lewis. Such blessings I have been given. A wonderful husband and a beautiful boy.

Grandmas and Wine

My mom may regret that she asked for me to blog this.

Last night my parents took everybody out to Collinas Italian Cafe for Michelle’s mom’s birthday (let’s say 40th).  They kidnapped us from the hospital and made us go out for a little while.  Well, Collinas is a bring-your-own-wine place and we generally bring more than we can drink.

It was a nice evening but nothing particularly more exciting than a nice dinner and wine with 10 close family members.  My mom wanted me (and others) to know that it was one of the best evenings of her life.  I think that may have been the point where my sister cut my parents off.  Read that again.  My sister, who was by definition a lush, was insisting that my goody two-shoes parents stop drinking.  If my world wasn’t already upside down that would have flipped it right over.

As if that wasn’t enough Michelle’s parents dropped us back off at the hospital so that they could see Gideon.  When Michelle’s mom came out again, she was balling.  All she kept saying was that he grabbed her finger with his little hand.  Michelle then invoked a new rule about wine consumption before seeing our son.

Those grandmas just turn into an emotional wreck when mixed with a little wine.

–Ries, tsk tsk

Leaving is Hard

Today we are going to start a new routine at the hospital.  We are going to try and leave today.  Michelle knows we need to go but every time she thinks about leaving she cries and says she doesn’t want to go.

I am generally more practical.  Maybe it is in a male’s nature to make those hard decisions based on the good of the whole family as opposed to just an individual.  It is hard for me too.  We had a good morning where Michelle and I spent a good chunk of time with him this morning.  I want nothing more than to just continue doing that until he can come home.  But I know we cannot.  I have to work so that I can pay the mortgage and have a house to bring him home to.  I also need insurance because someone has to pay for all these babysitters.  I will try to start working tomorrow and I think I have developed a schedule so that I work every other day.  That way I can extend my sick time and be here for a longer period of time even though I won’t be here every day.

We will leave here early this afternoon and try to go home and relax a bit before sleeping in our own bed.  We are hoping that they put his central line in before we leave.  Regardless of if they get his central line in today or not his umbilical lines have to come out today.  We would rather not have the peripheral IV line also.

Michelle now has a new job now.  She has to get up every morning and make her commute to the hospital so that she can be here for her boy.  Being a cow sure is harder than I thought it would be.

–Ries, trying to do what is best

Good Days are Still Somtimes Hard Days

So far, today is a good day. Gideon’s lung is a bit better today and he is getting breastmilk in him stomach tube. He is still getting rid of all his extra fluid and looks better every time I see him.

Gideon needs many days that are good days before he can come home. We finally got an estimate of when that might be, because now that he is off the ECMO machine, he is no longer as critical as he was before. If he improves every single day and has no setbacks, which honestly, is not likely, he could go home in 2 weeks. It is more likely to be around 3, I think. Either way, we are not going to mark a day on the calendar. We are still on God’s time and it is so hard to remember to be patient sometimes. I cried, of course, when I realized how much longer we would be here.

Ries is making a schedule as a I write this, a schedule of when we will go home to sleep, when he will go to work, when I will come up by myself, and when we will come together. That, of course, made me cry too. It is hard to think of leaving, but we should not continue to stay here forever. Gideon is no longer critical and we should leave to sleep in our own bed. I know he is in good hands, but it is hard.

As a mom, when you have a baby there are certain biological things you impulsively feel you must do to your baby: touch them, hold them, feed them, comfort them, and care for them. When your baby is in the NICU, you get to do none of those things. I have never heard my baby cry, never held him, never fed him, and all the care he gets are given to him by very lovely nurses. Even though I know they can care for him better than I could right now, I feel like I should be able to to something.

We can touch and talk to him, so that is what we do. It will just be hard to leave this building to go sleep somewhere else. At least it is only for a short time.

Here is a verse that was sent to me:

“I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire, He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God, many will see and fear and put their trust in the Lord.” Ps 40:1-3

D63

Gideon has been moved to another room. Room D63. They need to reserve the room he was in for babies who need to be put on ECMO. We aren’t quite used to the reduced attention he gets but we gladly take it.

He looks much more comfortable. The next day or so of observation is important for estimating how long he has to be in here. We are still trying to take it one day at a time and hold ourselves back from looking too far ahead. We just want to hold our baby.

What I Pray

I am waiting for Ries and Grandma Smith to get back from visiting Gideon. Hopefully, in his new bed.

Here is what I add on to the end of every prayer I say for my Gideon:

Please, Lord, give me the opportunity to raise this child into a man that has You in his heart. I want to be able to share with him the miracle of his birth and recovery as a testimony of your grace, mercy, and the power of prayer as he grows and is able to understand it. Equip me to raise him to know Your hand in all things. Amen.

It suits my needs, but it occurs to me that this prayer can and should be said for every child.

Waiting.

Making a Deposit

Milk Bank

Originally uploaded by Wandering Eyre

My days are broken up into 2-3 hour chunks, time between pumpings. It has been going well so far and I feel less like a cow than I would have expected. Though honestly, the set up is pretty similar to the machines you hook dairy cows to in the barn. (yes, I have milked cows before, by hand and machine).

Honestly, pumping gives me the opportunity to be alone for 15-20 minutes and close my eyes. It is lovely.

The other day, Ries turned to me with wonder tinged with disgust and said, “Sweety, you secrete food.”

I never thought of it quite that way and it made me laugh. It is that time again. Off I go.

There and Back Again

(I really need to remember Ries is using this computer too. This post was accidentally posted as Ries, but it was really Michelle. Sorry. Ries does not cry much, but I sure do!)

The thing about having a baby in the NICU is that it seems like every time you make progress something else surfaces that makes you take a step back. This morning when I checked in on Gideon after my 5:30 pumping, I learned that parts of one of his lungs had collapsed. They believe it is because of all the extra fluid that has built up in his lungs after the surgery and being on the ECMO. They have repositioned him and given his some medicine to make him pee more. We hope this is the solution.

I was upset by the news. I am so ready for my boy to be better and patience is my daily struggle.

Otherwise he is doing ok today. He got a bath last night and looks like a whole new baby. He is being weighed today and moved out of the procedure room and into a regular NICU bed. After he gets all situated, we will post some pictures of his new digs.

They are going to start him on breastmilk tomorrow through a tube that goes from his mouth to his belly. I am glad all my efforts will be put to use. If he improves steadily and can tolerate being handled well, we may be able to hold him in a couple days. Other than holding him for a couple minutes right after he was born, neither of us have held our little guy yet. I expect to cry during most of that. It’s what mammas do.

And He’s Off!

Surgery is successful and he is now off the ECMO machine!

He is a little bit swollen from all the fluid but that is nothing a little peeing can’t take care of.  He is doing great, they are going to wean down the ventilator and monitor him closely tonight.

The Lord has blessed us so very much.

–Ries, I think someone just removed a celestial body off my chest.

Surgery!

I didn’t think I would be, or ever will be again, so happy to say my son is about to have surgery. But this is the good kind. We didn’t expect it until tomorrow but they told us that he did magnificent during his test today so they want to take him off ECMO as soon as possible. They are in the midst of assembling the surgical team as we speak. As soon as they do they are going to take out his cannula and then it is all up to him. We are just playing the waiting game now.

I am looking forward to that thing being removed from his face and allowing him the freedom to be the wiggly worm that he wants to be.

–Ries, excited!

p.s. The Lord has blessed us immensely and I didn’t truly understand the power of prayer until now.  Keep it up everybody, it is truly working.

Swollen Feet

The pictures don’t do it justice but I thought I would give a glimpse of what Michelle (and consequently me) are having to deal with in trying to get around the hospital.

This is after taking off her anti-embolism compression stockings off.  The sharp drop from her ankles to her feet are a result of the shoes she was wearing.

Believe it or not, but this is actually looking better than it was.

–Ries, still pushing his crippled wife

Happy Mother’s Day

Michelle is now celebrated her first Mother’s day as an honest to goodness mother.  I think it is a little overwhelming.  She has been crying more today than most days.

They tested him again today.  Still not ready.

I also wanted to share some short verses from the story of Gideon.

“When the Angel of the Lord appeared to Gideon, he said, ‘The Lord is with you, mighty warrior.”‘  — Judges 6:12

“But the Lord said to him, “Peace!  Do not be afraid.  You are not going to die.”‘  — Judges 6:23

Finally, my Mom wanted me to read Psalm 30, which was good, but I won’t copy it here.

–Ries, learning patience

Testing, Testing, 1, 2

Have you studied? I hadn’t.

While Aunt Jennifer and I were visiting Gideon and he was showing off his blue eyes, a herd of doctors swarmed in on Gideon’s room. It turned out to be a good thing. They were testing Gideon to see how he would do if taken off the ECMO.

They removed the air that was pumping into the ECMO machine and watched his O2 saturation.  It dipped down a little lower than they would have liked and then they tested how he would respond to increasing his ventilator support.  He showed positive results but not enough.

As the doctor said, “He’s not yet ready for primetime.”  But that is okay.  We are patient, we trust in God, and as far as we our concern the fact that they’re testing at all is a positive sign.  Gideon will study up for the next test.

–Ries, helping Gideon cram

Giving Back

Ries Gives Platelets

Originally uploaded by Wandering Eyre

 

 

Part of Clan Gideon (Me, my parents, Aunt Jennifer, Uncle Christopher, and [soon-to-be] Aunt Sydney) treked on over to the blood bank to donate blood.  Most of them were O+, like Gideon, except me. There is a high need for platelets and since Gideon uses mostly platelets I decided that is what I would give.
It took about an hour and a half but I filled up 2 units and got to watch all of Daddy Day Camp, yeah! I feel good about it and I can go back in 2 days. Also, I met a nice lady who gave Gideon some vouchers that she had for giving blood.

–Ries, a little woozy

The Whole Set-Up

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Originally uploaded by Wandering Eyre

A little blurry, but here is the entire set-up in Gideon’s room. You can barely see him back there, in his bed. We are hoping the most dangerous machine, the ECMO on the right, will be gone by next week. My boy has to continue to get better first though and start working those lungs.

Again, it looks really scary at first, but you get used to it.

The ECMO Machine

The ECMO Machine

Originally uploaded by Wandering Eyre

This is the machine that is oxygenating Gideon’s blood and putting it back in his body. Right now they are slowly weaning him off of it because his lungs have started working a little more each day. He is now creating 2/3rds of his own oxygen. Hooray! Baby steps.