Slow and steady (lots of pictures!)

Little Miss Hope has been slow and steady with her progress, but it's progress nonetheless.  If there is one thing we have learned about our daughter in the last three weeks, it's that she does thing on her own timeline. After all, it took her four years to get here in the first place.  We are slowly getting our little girl back.

Holding Mommy and Daddy's hands this afternoon

Since I last updated on Thursday morning, a few things have happened.  She is waking up more and more.  Each day since she was closed up, she has been a little more awake.  She is slowly being weaned off all the meds she was on, tubes and wires are being removed, and she is starting to look more and more like the baby we handed over 10 days ago.  

Thursday afternoon.  Chest tubes still in, but starting to look more like myself.  

First off, meds.  At one point, she had 18 different medications going in through IVs and her arterial line.   She was on 4 different meds for her heart, diuretics to help with the swelling, morphine for pain management and sedation, paralytics to keep her still, lipids and sugar water to feed her, etc.  Today, she was down to 6.  She is on atavan/methadone to wean her from the morphine so she won't suffer withdrawal, milrinone for her heart, lasix (diuretics), lipids, and a few other things.  Much of the medication she is getting is a matter of weaning her off the huge amounts she was on.  We are being told the arterial line will come out late tomorrow when she is weaned off of milrinone (a heart medication).  

These are all the machines surrounding her.  Each room in the CICU is equipped with most of these machines.  

Tubes.  She had one chest tube removed on Wednesday and the other two were removed on Friday.  These tubes were there for drainage and were pretty ugly.  She looks much prettier without them.  She still has some wires coming out of her chest and some electrode monitors.  The wires are there in case her heart needs regulating with a pacemaker, which is unlikely.  These are some of the last things to come out, for precautions sake.  

Friday and we're chest tube free!

Breathing.  I'm happy to report that she was taken off the ventilator yesterday. This was a huge step and takes us another step closer to getting out of the CICU.  She is still on breathing assistance, but it's just a cpap through a nasal cannula.  She is no longer intubated.  Chris and I watched them extubate her.   I found it tense, as if everyone held their breath while we waited to see if she could do it.  She pulled it off and is doing pretty well, but does need support.   She may be on the cpap a few days, and we can't get out of CICU until she is done with it.  First she needs to get her strength up and start breathing deeper on her own.  Another big thing that came with the removal of the breathing tube was moving her out of the isolette (the glass bassinet) and into a big girl crib.  

Breathing on my own and not so sure about it.  

Wide awake and looking more like myself, even if I am a little skinny.

All tuckered out but holding daddy's hand

Feeding.  They began feeding her breastmilk through a nasal-gastric tube (NG tube) on Wed morning.  They started with 2ml an hour and over the last few days have slowly worked up to 5. We stalled at 5 for a couple of days to make sure her gut could handle it and we didn't slide backwards into another episode of possible NEC (the bowel infection she had before surgery).  Today, they were upping it to 8, and by the end of the day tomorrow she should be getting 12.  This is getting close to the amount she was eating before the fast, when she was eating 40 every 3 hours.  After increasing it to 12, they will start adding calories.  Sometime in the next few days, she will get to try out a bottle again, though it is unclear when.  Today she was sucking on her wubbanub (the pacifier with a stuffed animal attached to it). She is incredibly weak, both from the surgery and from not eating for two weeks.  She has lost a bunch of weight and is down to 5lbs 3oz.  Her arms are so skinny and her eyes look so big in her head.  Can't wait until she gets a little meat on her bones.  Today we took some pictures so that we could remember just how small she was.

My hand in Mommy's

My hand in Daddy's

My wrists are so small, Daddy's wedding ring would fit on it

The best part, other than getting off the ventilator, is that we are now able to hold her again. It is complicated (given the number of IVs, the Cpap, etc) and the nurse has to hand her to us, but it is nice to have her in our arms again.  It was pretty clear that she was pretty content to snuggle again too.  

Snuggling with Mommy

Snuggling with Daddy

So cozy and happy to snuggle

We are starting to make the motions to prepare for her homecoming, even if it is still or week or so away.  Sanders came home today.  I am so thrilled to have him home!!!  Our house doesn't feel so empty anymore.  He is pretty happy too.  I took the morning off from the hospital today to hang out with him.  We went for a run and for a minute, it seemed like our old life.  

I think we can officially say we are out of the woods.  The next step is out of CICU into the transition unit, then home.  She needs to start breathing better for the first step to happen.  Her nurse suspects Wednesday, but definitely by the end of the week.  The other thing she needs to do is start eating from a bottle again.  We think she'll pick this back up quickly - she was eating so well pre surgery and has already shown us she can suck on a pacifier.  I don't think they'll let us go home until she gains a little weight, showing she can indeed eat.  

So that is the update. I feel a levity I haven't felt in months.  My body is starting to feel like itself again, my dog is back, Hope's heart is repaired.  Life is pretty good, but will get even better once she comes home.  After this ride, I'm thinking having a newborn at home (even if she is actually a one month old) will be much easier than what we've been through.  Instead of getting up to pump, I will get up to nurse / feed my baby.  We won't have to commute into Boston every day.  We will be able to snuggle our baby whenever we want.  I look forward to diaper changes, a screaming baby, and midnight feeds because it simply means that life is normal and our baby is finally healthy.  We can't wait to introduce her to all of our friends and family, and we will be sure to let everyone know when we are welcoming visitors.  We thank each and every one of you for the outpouring of support.  All of your prayers, messages, outreach, etc has been so wonderful.  I am very behind on responding to people, so I am sorry if you wrote me a message and I haven't responded - I promise I will get back to you soon.  We want everyone to know how loved we feel.  This is one loved little girl :)