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.

Not how I thought this was going to go

It’s been an intense week.  Tim worked 70 hours this week.  That is A LOT of time away from home.  Oh yeah, and our car was in the shop all week so I was stuck at home with no car and two little ones!  If my mom and sister hadn’t come over and helped me I don’t think all three of us would have survived the week!  Seriously!

Wednesday we had another weight check for Adara to see if she’s gaining weight.  I had a bad feeling about it.  Call it “mother’s intuition” or whatever, but I just felt like she wasn’t gaining weight.  I really wanted to be wrong.

But I wasn’t.

She only gained 1/10 of a pound in two weeks.  She should have gained almost a full pound at least.

I also asked the doctor about Adara sounding more congested and coughing a bit at night.  We figured she was getting a cold.  Unfortunately the pediatrician said it wasn’t a cold.  Those symptoms were due to her congestive heart failure.

NOT what I was wanting or expecting to hear.

Our doctor called our cardiologist to tell her what was going on and confirm a plan of action.  The cardiologist said she didn’t want to wait until the end of April for our scheduled appointment, she wanted to see us Monday.

Tomorrow.

Right away.

On one hand I’m so thankful for good doctors who want to take care of this right away!  I want her to be safe and as healthy as can be.

But it’s also so scary.  I don’t know what to expect.  This is all new territory for me and I don’t have any idea what lies ahead.

And I keep feeling guilty.  Mostly about the lack of weight gain.  I feel like it is MY job to feed her and I’m failing at it.  I’m nursing her and supplementing with breast milk fortified with formula to add calories.  But it’s still not working.  And I feel like that is all my fault.  And I’m failing my little girl.

In some ways I wouldn’t mind if the surgery was bumped up.  That way we can get her fixed and start healing and move on to have a normal, healthy little girl.  But, that would also mean facing that sooner and before her little body has had time to grow.

And the sleep deprivation from having to feed this little one as often as possible (at least every 2 hours almost around the clock), keeping up with Caleb, and Tim’s long hours this week is catching up with me and making things even harder to deal with.

No joke: I was at the kitchen sink tonight and tried turning the water off by flipping the light switch!  THEN, for a split second, I was actually confused why it got dark and the water was still on!   (Sometimes I wonder if I should actually be allowed to be left alone with two kids!)

Gotta just put cute pics of her in whenever possible! 😉

In preparation

It’s hard to feel so helpless.

There isn’t much I can do for her.  I feed her, change her, and do the best I can to play with her and comfort her.

And pray.

I’ve decided to pray for her doctors and nurses.  Everyday.

I’m praying that God would work out for her to have JUST the right surgeon and nurses in the ICU.  That He would, even now, be working out their schedules for whichever day she has her surgery.  That He would be preparing them for her.  That she would get just the right doctors and nurses she needs.

And also that God would give us the surgeon, doctors and nurses who need to meet Him.  I’m praying that we could show God to those around us that week that we are in the hospital for her surgery.  That we could demonstrate God’s love to the nurses, doctors, other families who are there with us that week.

Just simply that God could use Adara, use us in all of this for whatever He can.  I don’t know what He has planned through all this.  But I’m praying that we would allow Him to use us.  That God would touch the lives of those we come into contact with through this whole journey.

And that He would use Adara’s precious heart to point people to Him.

My sweet little angel! I finally caught a bit of a smile on camera!

Adara Update: It’s been two weeks

We went for our two week check up today with the pediatric cardiologist.  I really like our doctor.  She makes things easy for us to understand, we can joke around with her, she takes time to explain everything and answer all our questions….we got a good one!

She had to have her first blood draw today.  She did AMAZING!  She was sound asleep when we got to the lab.  That is NOT a way I want to be woken up!  (Actually, when I was in the hospital after having her I got woken up at 5am for a blood draw…that is WRONG!  Just WRONG I tell you!!)  So, she woke up and cried for the needle, but then actually fell right back to sleep when the procedure was over!  How awesome is that??

So, the stats:

• We are upping the dosage of her medicines.  This will help to keep things moving in a good direction and keep helping her body to work better and hopefully help her gain weight.
• She is still not gaining quite enough weight.  She has GAINED since the last appointment, but not enough.  I will be supplementing her feedings with extra calorie breast milk (adding formula to breast milk).  Hopefully this, along with the heart medications, will allow her body to gain the weight it is supposed to and make sure she grows and develops properly. (Who would have ever thought someone in my family with MY genes would have problems gaining weight?!?!?!)
• Her liver is still enlarged, but hasn’t gotten bigger since last time, so that is good.  All is as it should be for this stage in the game.
• Her breathing is a little better, but still a little fast.  The medicines should help this too. She is not sweating or appearing to be overly exerting herself when she eats, so that’s good.
• We don’t have to go back for another month.
• At our next appointment we will set the surgery date.  (YIKES!!  {GULP!!! } HOLY CRAP THIS IS REALLY HAPPENING!!!!!) The surgery will likely happen in June or July sometime.

That’s the gist of the appointment today.  For now, I gotta run, I hear Adara waking up from her nap……

Living in Survival Mode

We had another appointment with the pediatric cardiologist today.

It’s always interesting going to Children’s Hospital.  It’s a much more colorful, cheery kind of place than a regular hospital.  As it should be!  And, of course, it is filled with children coming in and out.  All ages of children.  Some are look outwardly “sick”, others don’t.  They are all adorable and precious!  But my heart breaks a little bit with each child I see because I know they are here because something is wrong with them.  And that is just not how life should go.  There was one child in the waiting room at the heart center who looked to be maybe 18 months old-ish (I’m horrible at guessing ages!) and his parents were talking about how he needs a transplant.

It helps me put into perspective what we are going through.  It could be so much worse.  Yes, a 4 month old baby having open heart surgery is awful.  I won’t deny that or try to downplay how hard this is going to be for a season.  But it COULD be worse.  The defect that she has is very “fixable”.  She will likely not have any issues once she is healed and this shouldn’t affect the rest of her life.  We didn’t have to put her into surgery at just days old.  She should make a full, healthy recovery.

It could be worse.

I’m trying to remember that.

I’ve been struggling with post-partum depression since she was born.  It’s been really hard sometimes.  I’m writing this post in the afternoon on a beautiful sunny, warm day…because if I write it at night it won’t be very positive.  Nighttime is the hardest for me.  I’m tired, I’m worn out from the day, and the depression hits hard when the sun goes down.

PPD does not help when trying to deal with Adara’s heart issues and balance the two precious kids I now take care of.  It’s hard to stay positive and have a good perspective.  And finding time to read the Bible and have some sort of prayer life has eluded me so far.  I have tried to read the Bible on my phone while I’m nursing but I’m so tired I didn’t comprehend much of what I was reading!  😉  Not that I won’t keep trying that though!

Tim asked me last night if I just see surgery when I look at Adara.  I think to some extent that is true.  I see this little being that I have to work really hard to keep alive.  Has she had her medicine today?  How long has it been since she’s eaten?  Has it been two hours yet?  Did she get a bottle?  When am I going to be able to pump?  Has she had enough wet and dirty diapers today? How is her breathing – is it still too fast?  Is she sweating when she’s eating?  Has she nursed long enough this time?  How many ounces should I put in her bottle?  Ok, she’s asleep, I don’t know how long I have so I better put her down so I can eat/shower/work/spend time with Caleb/do the dishes/do the laundry/make dinner/make lunch/pay bills/pick up clothes and toys……

Ya, that’s pretty much what it’s like in my head all the time.  Not a lot of room for cooing, playing, etc.  I am just consumed with taking care of her, I’m not enjoying her.  I’m not spending those special, quiet bonding moments with her, talking to her, making silly faces at her….because I’m consumed with caring FOR her.  I’m living in survival mode.

So, I’m writing this post in the afternoon, when I’m in a better state of mind, to remind myself to take time to enjoy her.  To enjoy Caleb.  To try to keep perspective.  To try to get out of survival mode for a few moments now and then and ENJOY my kids.