Things are moving faster than we thought!

I don’t know if I should be writing this now because I am super tired (although, when is that NOT the case??), and so therefore probably a little more emotional.  BUT, Caleb is at school and Adara is sleeping, so I’m stealing a few quiet moments to write this out. (I should probably be napping!)

Yesterday was such a horrible day!  It was one thing after another!  Three BIG poop piles dumped on us in succession!  Really, it could be so much worse, but it felt like I was just gonna totally snap!  I won’t bore you with all the details….just know I didn’t need ALL three at the same time!

We met with the cardiologist yesterday morning.  I really love our doctor!  I ask SO many questions!!  I’m not usually like that, at least with my own appointments.  I feel guilty taking their time and don’t want to be a bother.  But with THIS, I HAVE to take their time.  I HAVE to ask my endless list of questions.  And I repeat things back often because I’m so tired my brain is not retaining info like I’m used to!  But our cardiologist is so patient with us.  She answers all of our questions to the fullest and takes great care of us!  We are so blessed.  I know God knew I would need a good doctor and picked her out for us!

Anyway…..

Adara still is not gaining weight.  She is supposed to gain at least 20 grams per day and at yesterday’s appointment she was gaining 4 grams per day.  That is not ok!  Her liver is still enlarged, but that is to be expected.  So, a couple things happened:

1.  We started a new medication.  She is now on three heart meds.

2.  We have to get even more aggressive with her feeding.  Which means more work for this tired mommy.  I have to omit three breast feeding sessions per day and give her a 3-4 ounce bottle instead.  The bottle will be fortified breast milk to give her extra calories.  You add formula to the breast milk and that ups the calories.  We have tried a 22 calorie recipe, a 24 calorie, and now a 27 calorie.  This also means I have to pump those three times or else I risk losing my milk supply.  Do you have any idea how hard it is to find time to pump???  I tried giving her a bottle yesterday.  She “sucked” on that thing for 45 minutes and drank ONE OUNCE!!!!  I don’t have time for that, girlie!!  She just wasn’t hungry enough for the whole bottle so she just played with it in her mouth.

3.  Lastly, it looks like she will have to have her surgery this month instead of waiting until June or July like originally planned.

Hearing that felt like a punch in the gut!  I felt all the blood drain from my face when she said that!

{Now, IF this new feeding regimen works and she starts gaining weight then we can delay the surgery a bit and give her some time to grow.  But if not, then we need to do the surgery this month}

Really, I WAS expecting to hear that.  It wasn’t a total surprise.  But there’s just something about hearing those words from the cardiologist that made it all too real.

Moving the surgery up certainly makes some things a little harder.  I was hoping to have it done after Caleb was out of school to avoid him bringing home all those lovely preschool germs.  And, if we got it done in June or July, Tim would have more vacation days banked up.

But, really, those are small issues.  And certainly nothing that God can’t handle helping us work out!

On one hand Tim and I were a little relieved to have the surgery pushed up.  We just want her well.  We just want her to be “fixed” and get on with being able to enjoy her as a “normal” baby and not have her struggle anymore.

But at the same time…..IT’S OPEN HEART SURGERY ON MY BABY!!  That just brings with it a flood of emotions and fears.

I worry about Caleb.  He loves her SO much!  I mean SOOOOO MUCH!!  It’s amazing to see how attached he is to her!  He literally can’t get enough of her.  He has to be with he all the time.  I think the sweetness between them needs to be saved for another post.  One I can dedicate to how amazing their bond is already (even though it does drive me a little crazy at times! 😉

But I worry about him feeling pushed aside because we are going to have to give so much attention to Adara.  I worry about him missing her so much while she’s in the hospital.  I worry about him not being gentle enough with her when we’re home and she is healing. (like I said, he wants to be near her all the time….like ON her, kissing her, “petting” her….it’s sweet, but makes me nervous!)  I worry about him through all this too.

But I keep getting reminded of how blessed we are in all this.  God has given us great doctors, SO many people praying for her, family and friends willing to help (even though I suck royally at asking for help – I’m working on that!), being so close to one of the best children’s hospitals for pediatric cardiology.

And just knowing that God hasn’t left us.  I know we would not still be standing if He wasn’t with us through all this.  (To see us shuffle around this house like zombies you might not believe we are actually standing, but we are! 😉

We prayed, we wished, we hoped that God would give us a miracle and heal our sweet Adara.  That we would go in one day for an appointment and they just wouldn’t be able to find the hole.  That her heart would be made whole and healed.

But that hasn’t happened.

And, really, I think we tend to think of miracles as just the “big” full healing we want.  I see other miracles God has provided.  And they are still miracles.  She is alive, and alert, and BEAUTIFUL!  Tim and I are still married (this stuff takes quite a toll on a marriage!), He has provided doctors, hospitals, people who know how to take good care of her.  God has even worked out most of the appointments so that Tim can fit them into his work schedule.

Those may be little, but I view them as God’s miracles in this journey.  He hasn’t chosen to do the “big” healing, but He has given us little miracles along the way.

I pray they continue!  I pray that He continues to have His mighty Hand on her sweet little body as we enter some very scary days ahead.  I pray Tim and Caleb and I feel Him walking with us, holding us, guiding us and carrying us through these days as well.

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