James and I began this blog at the very beginning of our pregnancy with Wyatt to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on. And now to share even more with the new miracle on the way.

Monday, November 5, 2012

The Home Life, Week 1

Well folks, we made it through the first week. 

I am so thankful for James being able to take the week off to be home with us while we firgure out Wyatt's crazy busy schedule!!  It's so good to have Wyatt home.  I cannot say that enough.  God really did equipt me to be his mommy. 

Here is our week in review:

Monday evening we drove home with Wyatt in the back seat.  I sat back there with him of course.  First thing when we walked in the door, we introduced Ronix, our doberman, to Wyatt.  We had been bringing Wyatt's dirty clothes and blankets home for him to smell so that he had smelled him before he actually arrived.  It went well.  Ronix smelled him and Wyatt didn't even seem to care.  Wyatt is SO laid back.  I guess that's a product from being in the NICU for so long.  We just kind of hung out for the rest of the evening hanging with Wyatt upstairs.  James made dinner for us.  I slept upstairs with Wyatt and James slept downstairs.  We had all is equiptment set up and I just wasn't comfortable moving it all down and then back up in the morning.  I was also dead tired from the excitement of the day. 
Tuesday we got to start from the beginning, really seeing what this feeding and medicine schedule is like in action without a nurse having everything ready for us. We just spent the day hanging out.  I created a 24 hour milk and meds bagging system to help make it easy every time we have to start and end his pump as well as grabbing his meds qucikly.  It also helps lesson confusion at 1 in the morning when I'm grabbing everything.  I much less likely to make a mistake and Wyatt gets the right amount of milk in his pump.  If I don't put enough in there, he could get air pumped into him.  That's NOT good for any baby let a lone a reflux baby. 

Wednesday Wyatt had his first appointment with his pediatrician.  It was fun going in on Halloween.  All the nurses were dressed up.  Our nurse was My Little Pony.  It was lost on James and Wyatt but I got it!  :-)  We had Wyatt dressed up in his pumpkin play/sleeper.  James rigged up my backpack to fit all Wyatt's machinery.  When we leave the house we have to take his feeding pump and milk bag, his ferrel bag, an oxygen tank and his pulsox monitor.  That is one heavy backpack!!!  We were really pleased with his doctor and the way she handled him.  Even though the waiting room has a separate area for well and sick kiddos, they office let us wait in a conference room so that Wyatt is not exposed to anything.  We can't afford for him to get sick, his body cannot handle it and we'd be back in the hospital.  Wyatt aslo weighed in at 10 pounds even!!  YEA!  She had also throughly read through all his paperwork.  I was praising the Lord for that.  It must have taken her some time, there is a lot of paperwork.  She also gave him, his 4 month shots.  There were 3 of them and he took them like the fighter he is.  He just whimpered for about 30 seconds and then stopped.  I will say those shots made him sleepy, or I think that's what did it.  He slept for 3 hours straight once we got home.  Aunt Robin brought us dinner and got to see Wyatt sleeping in his carseat still.  We didn't want to disturb him.  (We did take it out of the car and brought it upstairs.  :-)  It was just a chill day again.  This year for Halloween, I bought candy fully expecting that we would pass it out but James and I thought about it and with us figuring Wyatt out, being busy all the time with his feeds/meds and Ronix loving everyone that comes to the door, we decided to leave our lights off.  Sad day.  I love chatting with all the kids in their cute costumes.... next year!!!  :-) 

Thursday morning I had my yearly with Dr. Lo.  James had me call in on Wednesday to see if they would let us wait in a conference room or something if Wyatt came so that Dr. Lo could see him!  They were very nice and did.  My appointment went well and Wyatt of course did great at the office and in the car.  :-)  Not much else.  Maybe a nap or something.

Friday was much of the same.  I am getting faster and faster at loading all his milk and meds.  Wyatt played on his mat and would swing in his swing.  We'd hold him and lay with him.  Try to get some tummy time in.  It's been really fun! Thank you to my good friend Kim for bringing me some Sonic happy hour refreshments!  It totally hit the sport!  I also went to early vote and to Target all by myself while James and Wyatt had some guy time.  :-) 

Saturday was a big day.  Miss Amber was coming to babysit while James and I had the pleasure of attending a wedding of 2 really awesome people.  It was so easy to leave to go out with James knowing one of Wyatt's most wonderful nurses was taking care of him.  I didn't worry about him at all.  I worried more that I didn't tell Amber where everything was or something along those lines.  I wanted her to feel comfortable in our home.  Having Wyatt's schedule on the board and all the bags premade also makes it easier to leave- it's kind of self explainatory, you just have to be comfortable doing it all.  :-) It was also fun to get home and to just sit and chat with her for a couple of hours.  Made for a late night but what the hey, life is too short to not enjoy a late night here and there!  :-)

Sunday I was pretty tired from my late night.  James let me take like a 2 hour nap while he took care of all Wyatt's routine things.  That helped a lot... so did the extra hour of time.  :-)  We litterally just chilled ALL day on Sunday.  Wyatt entertained himself on his mat for hours on and off.  He'd play, fall asleep, wake up, play some more, chat with a hanging monkey, fall asleep again.  We feel so blessed to have him as our son.  I hear some NICU babies come home and are crying all the time, don't want to be touched, and just not very fun.  Wyatt is a lot of fun.  He talks and plays and is just so laid back.  We couldn't have asked for more.  We also went for our first walk outside.  It was one of his off hours so we only took the oxgygen tank with us.  Good times and fun memories were made! 

Today (Monday) James returned to work.  I wasn't very sure how that was going to work out but it's been really good.  I'm not near as tired as I thought I would be.  I actually woke up before Wyatt this morning, got dressed, had my coffee and did a devotional!  How great is that?!?  Wyatt actually sleeps through the night.  I have to get up twice to add milk to his bag and to pump but he just sleeps.  Usually the last 3rd of his all night continuous feed, he refluxes some.  I'm still adding formula to my breast milk to up the calories and I remember that in the NICU when they first put him back on my breast milk with no forifiers, he didn't ever spit up or if he did, it was next to nothing.  So.... (all doctors, nurse practicioners and nurses reading this, I'm sorry...)  James and I are playing with it all.  His schedule and his milk.  Today I moved everything back hour at James' request/suggestion.  With it moved back an hour, I only have to get up once and James will take care of the 3rd part of his night feed and meds.  What a sweetie!!!  Also, at night Wyatt gets 35 mLs of milk an hour and only 29 mLs during the day.  With this schedule, Wyatt is only disconnected 4 hours a day.  That is not a lot.  It leaves us pretty much stuck in one small part of the living room.  Which is fine but I just feel like we can make it better.  Sooooo, I went ahead and changed his daytime feeds to 35 mLs an hour in the day too.  If he begins to spit up more or anything like that, I will gladly go back to 29 but so far so good.  That gives us 6 hours a day not connected to a feeding pump and maybe Wyatt will start to feel hungry and actually want to breast feed again.  He hasn't latched back on since his surgery.  Sad, I know!  It really stinks but I will not give up!!!  Our home health agency came today to meet me and Wyatt and see our set up.  They complimented my organization.  I told them I was a teacher and they got it.  haha.  They uncovered his mic-key button (g-tube) and showed me how to clean it and also gave me some "real" advice that might or might not go along with what the doctor says.  James and I are going to begin with 2 days a week for 8 hours.  I'm still not sure what all this looks like but we will soon.  Granny will be here to help this weekend and is staying for a couple of weeks.  I'm very excited about her being here.  We both love Granny.  I miss her not living closer. 

James is home with us again tomorrow and Wednesday.  Wyatt has an appointment at the Children's Low Birth Weight Clinic tomorrow. We have a pretty good feeling this will be the only time we go there.  From our understanding it's more for patients that aren't going to a private pediatrician and we're going to one so we won't need that.  But we're going once to make sure that's what it is.  Then on Wednesday, we have a GI and Cardio appointment at Children's Legacy.  I'm so excited we got almost all our follow up doctor appointments at the Legacy campus.  It's easier to get to, newer, cleaner, cheaper (no parking fee) AND we can stop in and see the one and only Dr. Zink!!!!!  :-)  Yippie!! 

Have I mentioned how much I am loving being home?!?  It's been great.  The timing couldn't have been better.  I can't praise God enough for our story.  It hasn't been easy but at the same time it has because He is just so good and He knows what is best for us.  I am cherishing every second of life with Wyatt.  I am praying that he keeps his food down, that he continues to grow and heal (even with me messing with everything) and that he know he is loved so much it hurts sometimes. 

Thank you SOOOO much for helping us pray him home!  :-) 

PS- I haven't uploaded our coming home pictures yet... hopefully tomorrow!  :-)


  1. Yay! So glad to hear all the good news and great memories you're making.

  2. I've been following your blog for a while. Our CDH child will be born on or around January 25th so your blog has given me a tremendous amount of advice! I am SO happy to see Wyatt home and your family whole. He looks so happy and I continue to offer positive thoughts and prayers to you and your family! -Erica

    1. Erica, Thank you for following. Our hope was that we could help others that follow. If you need anything, please let me know!!! Where are you located?