We Are Home

We got home yesterday around 4 pm…2 days, 2 nights in PICU=thankful it is there  but what a miserable experience. Caleb was diagnosed with severe acid reflux disease or GERD.

I won’t let this be a bashing blog post but let’s just say I wouldn’t go back unless a life depended on it…literally 🙂 My patience, grace, sanity…and at one point…my fist about to wail into a heartless phlebotomist…were all challenged.

But the Child Life people were kind and they made him this sweet sign for his door

Anyway…we are home…slooooooooowly finding a groove that works.  Caleb is not better…he sounds congested because it has caused damage and irritation all the way up and he bursts out loud screams of pain frequently when the acid comes up.  It really is heart breaking. When he is not eating/sucking…he is fussy and crying.  But now that I know what he has and am no longer doing the slew of things I had been unknowingly doing to make it worse…I am hopeful he will show more improvement soon.  The one good thing is that there is no more bloody spit up and no more not breathing! YAY!! So he will sleep for short periods of time…and last night he even gave me a three hour stretch!! I can’t tell you what it does to my heart to see him rest.

Caleb eats every 45 min. (every 2-3 hours is normal for a b.f. baby) so when the therapist told me try to hold him off until then…I knew it would be hard but certainly wanted to do whatever I had to do to make my baby well…as soon as possible!

“Hard” doesn’t describe it. It was torture. I was pacing the halls with tears pouring down my face holding my back-arching, screaming, crying, kicking infant while trying to keep him in his necessary up-right position.  I loooooooooooost it!  The nurses were doing nothing! {okay…tame the rant, Rechel :)} anyway…I said “I can’t do this…if I can’t feed him…I need someone else to hold him” and I am doing the hiccuping, ugly cry as I am telling them this…and as I stood looking at a bunch of blank stares I told them to just get me a doctor…

I fed my baby and kept feeding him…and during the FIVE hours I waited for a doctor to come…I did some research into “severe acid reflux” and the first thing I found was breastfed babies with severe GER will need to eat shorter feedings more frequently.  It not only soothes them by keeping the acid down…but they are more manageable amounts of food on their sensitive insides. When the doc came in…she confirmed this…not that I cared!  She also tried to evaluate me for depression…..she obviously didn’t have kids or she would have determined my tears normal without having to look at a check list!

My baby finally rested!

He has to remain at at least a 45 degree angle at all times and be completely upright for one hour after every feeding….which is not possible because he eats every 1/2 hour to 45 min…but I keep him pretty upright while feeding him….HA I’d looooove to show you the set-up we have created to do that…but trust me….I shouldn’t 🙂 But we now have one of those little sleepy-dealy-o’s in the pic above upstairs and downstairs and an upright bouncer upstairs and downstairs…

and a wedge for diaper changes…and his diapers have to stay on very loosely for his distended belly which is a gazillion times better!

and and and…:) we’re doing all we can but the rest is just going to take time and a lot of patience.  Nothing is more stressful to me than my baby in pain, screaming relentlessly and I can’t help him.  If I am not feeding him…he is screaming or very fussy or (hopefully but not often) sleeping.  So, please forgive me if I am not returning your call…I just count it as your love sent…so thank you!!

I have to get some of the fore-milk out before I let him nurse because I have too much and it just pours out causing more gas and more acid to reflux…for those for you breastfeeding moms….I’m talking 3.5 oz out before I can let him nurse! There’s gold in them thar freezer now 🙂 and for those of you who have ever said “there is no use crying over spilled milk” never pumped 3 ounces and spilled it 🙂 it’s gold! Anyway…you can imagine my frustration at the hospital when they tell me to pump and to keep my baby upright.  Hmmmmm.  How should I do that…so I would have to lay him in his upright bed and watch him scream while I pumped.  I asked one nurse to hold him and she said “for what…like 5 min?” They made it clear they were not there for me.  Okay…I am ranting again…sorry 🙂

I am not willing to go to formula for a host of reasons but mainly because severe GER symptoms are thought to be worse in formula fed babies….and we have not ruled out a milk-protein allergy….which formulas are made of…soy would be a no-no as well.

He is on a strong medication twice a day…although as I was typing that…Mike just walked in the door letting me know that the PICU doc didn’t fill out the script correctly (we knew that last night when we went to have it filled but he was going to call her to get it figured out and we were to return to pick it up this morning) and Mike just got back saying she still hasn’t called the pharmacy back (SHOCKING!…{insert a heck of a lot of sarcasm there…{rant}}…so we have since packed up the screaming baby, taken him back to his regular doc so we can get the script we need.  We have it now…we’re home and said child is sleeping 🙂

He will also continue to see a speech therapist (I know…weird) but they evaluate his swallowing.

and lastly…I am on a no-dairy diet to rule that out…{I just heard the P’s gasp at the idea of me with no cheese :)}

I *think* that sums it up…this has been really hard for me…I am the first to admit it.  I am short with everyone (Mike & kids) I shouldn’t be short with and cry at the drop of a hat.  I have anxiety in my throat choking me….but I know this will be over soon and I am going to trust God for strength, patience and healing.  I know there are so many of you that are not only willing to help but would love to and I am just not sure what I need.  It’s kinda like when I need help I need it right then so there isn’t time to call or wait.  Luckily and thankfully Mike was able to take a week of medical leave and he is here for the amazing strength and calm he provides me and can lessen the burden on Jackson and Ally {whom I don’t want to resent the heck out of Caleb 😦 }

Oh I forgot to mention…his liver enzymes were elevated and they are still not quite sure why…maybe just underdeveloped…

So…just pray for our family…mainly Caleb and his healing. While you are praying…please think of Caleb’s long distance BFF who is in the hospital enduring so much and please put  Killian and his family in your prayers too as they were in the forefront of my mind the entire time and my friend’s amazing strength will surely inspire you, too…http://killiannail.wordpress.com/2012/06/14/next-steps-2/

**P.S.  I typed this with one hand…holding Caleb, sleeping in the other…impressive, huh?? Just kidding…I have to write to keep my sanity and to keep you posted…to know you’re praying and so you know we’re okay.  Love you!!


One Comment on “We Are Home”

  1. Rechel, I’ve been out of town, and out of the loop! What an ordeal– poor little Caleb and mommy. 😦 Love you guys, and praying you get rest and healing.

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