Wednesday, September 24, 2014

Our girls. My heroes.

It has now been one full week since our littlest girl came home and I can honestly say I've never been so happy to be so tired.  I am calm, I am happy, I am exhausted, and I feel complete.

Zoey Theodore Theodore, born July 14th, 2014, weighing 2 pounds 8 ounces and 14.5 inches long came home on September 15th, 2014, weighing 4 pounds 14.5 ounces and 16.5 inches long.  And after one full week at home, weighs 5 pounds 9.5 ounces and is loved more than one could possibly imagine by mom, dad, and most definitely by her big sister Tera.

Everything that I hoped would be true about Tera's love for her baby sister, has come true.  She absolutely adores her, showers her with kisses, and is more gentle than she ever has been.  There hasn't been much evidence at all of any jealousy, and while there have definitely been some adjustments for us all, I can honestly say my life finally feels complete.  We have two of the most beautiful girls in the world that have each had to overcome more obstacles than any little person should have to.

Tera was my first hero.  That kid loves like you wouldn't believe.  Her empathy is incredible, Her energy is unbelievable.  Her tenacity is enviable.  She tries hard at everything she does and rarely gets frustrated.  As much as we try to treat her like any other typical kid, we sometimes forget that she isn't typical.  She does have to try harder for a lot of things.  And there are certain behaviors (mostly standing/sitting still, throwing, and even hitting) that while she has some control over, are oftentimes the result of her immaturity and sensory issues.  We still discipline her, we talk about her actions and how they upset us (this is where her empathy is key to getting a desired reaction), and we try to find positive ways to let her work out her inner frustrations.

At age three, she's already had two sets of tubes (among various other procedures) , pneumonia five times. has gone literally months straight being sick, been catheterized at least three times that I can remember, had a swallow study, gets blood drawn every four months, sees five specialists, took a pill every morning for almost two years, wears orthotics, and works so very hard at every word she says.

Zoey is my second hero.  She arrived way to early, through no fault of her own, and has had to fight ever since then.  She already has two scars on her side from the chest tubes they had to insert when her left lung collapsed twice.  She still has to work to drink from a bottle and is sometimes still just too tired.  She is on a diuretic to keep fluid away from her heart until her PDA closes and up until yesterday was also on extra potassium because hers was being depleted by the diuretic.  She's on a pill for her thyroid, and also a multivitamin.  We also still have to fortify her milk with extra calories so she can keep gaining weight, but we suspect that might be contributing to the what seems like an excessive amount of spitting up which wakes her up constantly.  She has to work just to keep herself warm.  We also have to work on physical therapy strategies with her since she still isn't even supposed to have been born yet.  She's a very calm baby, and while she grunts a lot, she rarely cries.

Life is not easy for us; it probably never will be between these two kids, but as I constantly try and remind myself, things could be so much worse.  All things considered, we are lucky.   I know I don't and won't always feel that way, but for now...

Our girls.  My heroes.  

**This took me three days to finish completely and today was a little rougher on the Tera front.  Hoping to have a new post tomorrow on what's going on with my feelings about the DS situation and my sweet girl.  Just a warning so you're not too confused if there's a sudden change in the mood and tone of my posts...

Monday, September 8, 2014

Could the end really be in sight?

Today was the day I was scheduled to deliver Zoey.  Eight weeks to the day after she was actually born, and still three and half weeks before her due date.  I'm not sure I can accurately describe how I feel about this.

It's been 56 days since the chaos began and I'm almost hesitant to write this, but we should be very near to the end now.

She's still taking all of her feedings by bottle and has been allowed to eat ad lib; meaning she can take as much as she wants (currently that's averaging out to about 50 ml or 1.7 ounces) and as of today, when she wants.  She won't be allowed to go more than four hours at a time, but she won't be held to the three hour schedule she was on.  This should help with her alertness during feedings making them quicker and usually not as sloppy as when she's still half asleep.  The truly amazing thing for Tom and I is that for the most part, she takes her bottles in under 20 minutes; and the nurses told us that is kind of slow.  Tera was averaging around 45 minutes for each feeding even when she was not a newborn.  Her low muscle tone, tongue, and lack of coordination made each feeding long and messy and they exhausted her.

The only thing currently keeping her in the hospital is her inability to maintain her own body temperature.  They've tried twice to put her in an open crib for a day or overnight and both times her temperature dropped below where they want it.  They also found last week that her red blood cell count was low.  Apparently this is not abnormal for babies at one to two months, but because most babies aren't in the hospital, it isn't checked and it's not of any real concern.  In Zoey's case though, it could be contributing to her inability to keep her temperature up.  So today they decided to give her a third transfusion to see if that helps.  If it does, she'll have to maintain her temperature for at least two days and then we are out of there!  If all goes well, and I've confirmed this with the doctor and her nurse, it is feasible that she could be discharged by the end of the week.  The two possible hiccups would be if she doesn't make it in the open crib, because then they would have to wait at least 24 hours before they try again, and if she didn't pass the car seat test.

For those of you who have never had a child in the NICU, most babies that have even brief stints there, have to pass a car seat test.  It is basically to see if they can maintain breathing correctly in a car seat.  They usually place them in there for 90 minutes and they can't have any oxygen desaturations (or possibly just any that they can't recover from on their own) during that time.  In the meantime she will receive all her vaccinations, and I was happy to find out, because I believe very much in vaccinating my children, that due to her premature status she is eligible to receive the RSV vaccine in November.  As a mom with two children with compromised lungs, I will do anything I can to help prevent them from getting a sickness that could put them at an even greater risk.  She will also have the echo of her heart repeated and the head ultrasound repeated.

On Sunday we brought Tera with us for a while so she could see Zoey for the first time without her oxygen and NG tubes and for the first time ever, I was able to hold Zoey in my arms while Tera sat next to me and it was amazing.  I couldn't believe I had both of my daughters so close to me at the same time.  Tera did great and very gently kissed her baby sister's head several times and showed us how little she is.

And so as it gets closer and closer I get more nervous that something will prevent her from coming home.  We've been waiting for this for eight weeks and while it might seem to some people that if we've waited this long already, what's one or two more days.  But we've already waited 57 days.  I waited nine days just to hold my newborn baby.  She was on oxygen for 21 days.  On a feeding tube for 49 days.  Every day has counted so far and I don't want to count even one more.

Her room is ready. We think Tera is ready.  We are more than ready.

Monday, September 1, 2014

And the weeks keep passing by...

So here we are, seven weeks into this crazy little adventure of ours.  Zoey is growing steadily and is up to a whopping four pounds and four ounces now and, I can't remember if I mentioned this last time, but our little peanut had managed to grow two inches in five weeks! She may be facing quite the opposite clothing dilemmas that her older sister has.

And now we just continue to wait.  Tom and I both kind of anticipated this being a difficult part of this experience because while we are beyond thrilled that there is nothing as serious as the first week to worry about anymore, every day it seems we should be ready to take her home.  She took all eight of her bottles in the past 24 hours which is huge for her.  Friday afternoon after we left they attempted to move her to the open crib, but the next morning, despite several layers of clothes and blankets, her temperature had dropped and she needed to be moved back to her isolette.  It was difficult to hear that it had stressed out her little body so much, but the fact that she is so close to all of her bottles is incredible.  Being able to take all her feedings by bottle is a combination of a skill and energy and I thought for sure that would be the later of her two last milestones before being released. On the plus side, as long as she's gaining weight, her temperature will start to happen on its own.

 Her updates from the doctor each day are pretty boring (which we're more than okay with) and mostly include increases in the volumes of each feeding, increases in the extra calories they're adding to her her milk, how her thyroid is responding to the current dose of medication and whether or not it needs to be adjusted, and what tests they will only need to repeat one more time before she goes home.  As of right now, her head ultrasound from last Friday looked good and they will check it one more time before she gets discharged to make sure the clots from the bleeding are dissipating and they'll repeat the echo of her heart one more time before she gets discharged to see if she needs to be followed by a cardiologist to monitor her PDA.  

We are amazed more and more each day, as are her doctors, at how well she has done compared to how rocky her first week was.  And so we just wait.  And I HATE waiting.  I'm no good at it and it's getting harder and harder as each day goes by to know that seven weeks have passed and she's still not home.  Not that we were expecting her to be home by now, but still, the waiting sucks.  Her room is finally ready and all that it's really missing, is a sweet little girl to occupy it (well, a sweet little girl other than her sister who likes to play in there).

It's just as hard to leave Tera in order to be able to see Zoey.  She's done much better these past few weeks both at home and at school, but I can say there is definitely a level of guilt every time we leave her to go to the hospital.  Today I did something I haven't done in a long time; I rocked her to sleep for her nap, and I loved it.  I haven't done it in so long and it felt so good to just let her sit in my lap and fall asleep as I studied her face.  The same way I did with Zoey this morning and the way I used to all the time when she was littler.  As she pulled my arm around her my hand rested on her heart and I felt all the swishing it does through the hole that is still trying to close.  I focused on her tongue resting so familiarly on her bottom lip and realized how aware I am of its absence on Zoey.

I was so worried for so long about if it was possible to love another child as much as I loved Tera. I was especially concerned because of Tera's special needs. But now that Zoey is here, I find myself feeling like I love Tera even more than before, if that's possible, and Zoey just as much.  Which is part of the reason why this whole process is so completely exhausting.  To see one of my girls means having to leave the other one.  I'm constantly torn and it's getting to be unbearable.

Next Monday is the day I was scheduled for my c-section originally.  I've informed Zoey she needs to focus on getting all her skills in order by the end of next week which is when she would originally have come home (probably).  We'll see how she does...
Zoey at 7 weeks
Tera at only a few days