Thursday, August 23, 2012

The first few days...

These first few days have been wonderful.
These first few days have been happy.
These first few days have been, um (searches for right way to phrase), hard.

We have been to the park.

I heart the baby carrier.  So does Parker.  Homefry has gained HALF A POUND IN FIVE DAYS (he now weighs almost 16 pounds), so I think our time with it might be limited.

We have been to church.

Love these two monkeys.  Love that I got to bust out the first of Jeremiah's "silly suits" again.  This one is a darling little Feltman Brothers bubble with a hand embroidered train on it.  He had on blue knee socks and little white shoes.  Mike HATES this outfit.  I could not love anything more!!

We have been sleeping 12 hours a night.
**insert picture of sleeping baby**

Correction:  HALF of us have been sleeping 12 hours a night.  Jeremiah and Parker both got my happy sleepy genes and are zonked out from 9 to 9 every night.  Mike and Abby are up throughout the night doing tube feedings and staring at the baby to be sure he is breathing.
(We DID get sent home with a Smart Monitor to use while he is on tube feeds.  I hate toting that darn thing around, but I am secretly happy to have it at night.  That is the only way Mike and I can close our eyes for any period of time.)

Apart from that, we are just trying to figure out how this little booger works.  He spent most of the first two days home being startled by every noise he heard and shunning any and all light.  Makes sense-- he spent 12 weeks in a dark and quiet environment, and the outside world is one giant ball of sensory overload for him.  He's chilled out quite a bit thus far.

He sleeps all night, and takes ridiculous cat naps during the day.  We have tried to lay him down and let him sleep for a while,  but after 20 minutes or so, he is up and ready to play some more.  He has, several times, fallen slap asleep in literally 2 seconds.  I have been playing with him, turned my head, turned back, and he's out.  I am sure he'll even out into some sort of schedule soon, but for now we just let him do what he wants to do whenever he wants to do it.  We also haul him around on all our various errands and outings, which is important to me.  Jeremiah is the most laid back kid ever, and I think it is largely due to the fact that he learned early how to go with the flow.

I am not entirely sure the P-nut will ever learn how to go with the flow, unless he has overseen the flow and deemed it suitable.

I am going to have to devote an entire post to his first week of eating at home.  If you were watching me type this you would see me waving my fists of fury just thinking about it.

In medical news, we have seen our pediatrician twice, the gastroenterologist once, and are having a speech evaluation in the morning.  The pediatrician chuckled at how big his feet are, remarked that for such a sick baby he certainly doesn't LOOK like he's had anything wrong with him, and gave us some general info on caring for a "sick baby" vs. a healthy one.  The gastroenterologist flat out laughed at his weight gain.  Since we've left the hospital, he has put on twice the amount of weight they were hoping for.  STINKER.  They also have ordered a swallow study and a PH Probe test for September.

My sincerest hope is that we will not need those tests because the wretched NG tube will be out soon.  More on that tomorrow!

We spend at least six hours out of every day watching our two boys play and giving each other weepy sappy smiles.  People say that every day is a gift from God, but I have a new level of understanding of that statement that I certainly never dreamt possible.  I have gotten to see God move through all of our lives in the last few months, and it is humbling to know how much He cares for us.

We were running a bit late to church Sunday, almost didn't make it, but rolled in the back doors with Parker's stroller just as the worship team struck up a tune.  What was it?  Well, remember a week ago, when I mentioned a song that was helping me regroup?  The first song that Parker got to sing in church was "You Never Let Go." 



  1. This just makes me cry, Abby. The CDH experience truly changes you, and feeling and knowing God in a different way is a big part of that. I know you are exhausted, but it will get better soon. Love, thoughts, and continued prayers from Winston-Salem... I'm so happy for you.

  2. And you NEVER DID LET GO of your faith!!!!!! God does indeed love your sweet family and I know He will continue to bless all of you. I am sitting here just smiling and praying for you. LIFE IS GOOD ..... enjoy it's preciousness!

  3. So happy happy happy !!!!! Your family is home together!! Much love to you all!!

  4. I am so happy for you and your family! Transitioning home was one of the most exhausting parts of the whole journey for us. Taking care of all of Jacob's needs and keeping up with our 2 and 5 year old was almost too much! That is so awesome that Parker is such a great sleeper. Hopefully, you can squeeze a nap in every once in a while. ;) Hooray for the great weight gain too! Now we will focus our prayers on good eating habits (tube free!)

    God bless,

  5. Beyond ecstatic to see the family together. Yay Yay Yay!!! Here is to the feeding tube coming out all together soon!!!

  6. Soo glad that the fmaily is together. Yayy Yayy Yayy!!!

  7. I am beyond thrilled for you as I read about your adventures at HOME!!!! Also just wanted to share with you that I have a MOBY WRAP that is so comfortable and you could probably carry your munchkin in it forever if you got one. It is fabulous. Super comfy, it is just fabric that is washable, you throw it right in the washer and drier whenever needed. PRaising God for your little miracle man being home where he belongs

  8. So happy that you are able to wear that baby in a carrier! I loved carrying my baby and still carry her on my back at 3 years old! The Moby is amazing but I only like it when she was little. It killed my back. However, the Beco has been my go to favorite. Some prefer the Ergo over Beco but they are amazing, give lots of back support, and the Beco can carry up to 45 pounds ( I think. Anyway, check them all out! You have lots of options for carrying that precious boy!

  9. Praise our faithful God!! i have been following your story for the last three months and praying. so happy you are home!