Wednesday, December 16, 2009

Successful Surgery #3

Bella's surgery went very well.  You can read about it at her Caring Bridge website here.

I wish I had more in me, haha but I'm so spent that there isn't much to write about.  For now, all we care about is Bella's progress in her health and getting our baby girl home.

Tuesday, December 15, 2009

There's No Place Like Home...

I think I can speak for both Miles and I when I say that we are so extremely tired of this. We're so thankful we knew before Bella was born of her Down syndrome diagnosis and to learn of her AV defect.  We're thankful we were prepared and knew what was coming... but I have to admit, this possibility of another surgery is definitely a shocker to me.  I suppose it was the last thing I thought I'd here, and most definitely the last thing I wanted to hear.

It's probably understandable, it's probably "normal" and I'm sure anyone could guess how I'm feeling... but I have to say it outloud.  I want our baby girl and I want to take her home.  She's three weeks old today and she's never seen her own nursery.  I'm sick to my stomach that she might have to endure another surgery.  I know that they wouldn't put her through it if it were unnecessary, but I can't help to think that she's only three-weeks-old!  How much can such a little body take?  I can't stand seeing her lying there so swollen she doesn't even look like our baby.  Sitting in this hotel room is about all we can do, unless we want to go out and spend money (which we're trying SO hard not to do). 

Yesterday Miles took us to the zoo.  It was a lot of fun, I admit... but it was also so sweet.  We were practically the only ones there.  He hated that we just sat in the hotel when we couldn't be with Bella, and thought it was really unhealthy for us to just sit and stew.  After Googling some things to do in Omaha, he found the zoo and thought, "Why not?"  Thankfully all of the animals were indoors so we weren't subjected to the horrendous weather.  I'm so grateful that even though my husband is undoubtedly stressed as well, he's looking out for my sanity and mental well-being on top of it all.

I understand it is all happening for a reason but to be honest, at this point, I'm exhausted in every way imaginable.  I just want to be home.  We feel like aliens in this city, and we can't even come "home" at night.  (Although we've dutily filled the fridge with food and have practically made this our home by now). 

Last night I wrote on Facebook that I'm very angry.  Not at anyone or anything in particular, and by all means I do NOT resent Bella for any of this -- but I'm so angry she may have to have another surgery; that we may have to be here even longer than ever anticipated.  I'm angry because it was such a surprise, and most of all, how it was delivered to us.

The lady was a "Home Officer", whatever that is, and I don't think it's appropriate that someone with the thickest Middle Eastern accent I've ever heard is sent in to tell us of "the surgery".  Let alone she looked at us like we were crazy because we didn't know there'd be another surgery!  At first I honestly thought she misread the echo and she was talking about a different child.  I really did.  Miles was able to understand her and knew she was talking about Bella, but I sat there with my mouth agape and freaking out inside.  Once she left the nurse Errin clarified for me.  Yet I couldn't believe some woman came in there and just talked to us like we knew... and once we began questioning her, acted like we were idiots because we didn't know what she was talking about.  Something was miscommunicated, I'm aware, but I wish the hospital would have had more tact than to send someone who doesn't even have proper medical credentials. 

Well, Miles is about to jump out of the shower and I have yet to dry my hair and look normal so I don't scare the world.  Hopefully the surgeon will come talk to us as soon as we arrive.  I think we deserve that much.

Monday, December 14, 2009

We're Not In Kansas Anymore

On December 7th, the doctors found that Bella had coarctation of the aorta.  This needs immediate fixing and so shortly after hugging my parents goodbye around 10:00 AM, we found out the news.  We had been on our way to get some lunch when the doctor called us and said that we needed to skip lunch and come to the hospital right away.  Miles and I looked at each other and knew, "This is it." 

The doctor brought us back to his office and explained wonderfully what it means and that they needed to fly her out to Omaha, Nebraska that day.  Shortly after we ran to the nearest McDonalds, picked up some food, and sat in the NICU lobby waiting to say goodbye to Bella.  A nurse, Judy, had requested to be the accompanying nurse on Bella's flight to Omaha. 

The hospital gave us a bag of goodies from the Mended Hearts group in the city.  With it we were given $100 and a few gift cards as well as some other goodies.  We were so grateful. 

After they let us wash up and see Bella (who was completely out on morphine at this point), we headed straight home and literally threw things in one of our giant suitcases and left.  Unfortunately we didn't get to leave Rapid City until 6:00 PM.  By this time it was already dark, very snowy, very icy and just very cold.

Our three cats we entrusted to one of our good friends Katie.  It felt so weird to walk out the door without even kissing them goodbye!

We finally arrived in Omaha around 4:00 AM our time (Omaha is one hour ahead of Rapid City time).  First we drove to the Children's Hospital and got to see Bella who, again, was out on morphine.  We were told to be back at the hospital around 8:00-9:00 AM, as her surgery would be the second one of the day.  Her surgeon wasn't in then and would be in the morning... or, later on in the morning.

Fortunately we had reservations at a nearby Air Force base.  We found our way there and crashed for a few hours -- not nearly enough time for sleeping, but enough to get up and go see baby Bella before her two big surgeries.

After a briefing from her surgeon and the anaesthesiologist, Bella was whisked away to surgery after kissing her goodbye.  There was a private room designated for us as parents of a child undergoing cardiac surgery (as well as aorta).  With the dimmed lights, couch and recliners... you can expect that we slept the entire 4-5 hours she was in surgery!  (Well, I had nightmare after nightmare, so I'd get up, walk around and come back to the room.  Miles, however, was OUT). 

It seemed like forever, but her surgeon came in and told us everything went well.  We found out at this time that Bella had been in a HECK of a lot worse shape than anyone had ever led us to believe.  This wasn't surprising to us, to be honest.  We'd been telling everyone as much all along, but kept being reassured that she was just fine-and-dandy.  In any case, her surgeries went well and now it was just time to wait for her to recover.

Which is what we're doing.  In Omaha.  With very little to do, lol.  Today my husband wants to take me to the zoo ... and it's snowing.  I find this hilarious and extremely sweet at the same time.

Bella's progress will be daily updated via at her website.  Click here to be taken to it.

Friday, December 4, 2009

NICU Day #10

As anyone can imagine, having a baby in NICU is a stressful temporary circumstance.  Within the past days I've significantly dropped in my motivation to do anything but see and be with Bella. 

Over the past few days we realized her neonatologist/pediatrician wasn't checking in on her.  We didn't think much of it until we asked the nurse last night what the new orders were from him.  Since they moved Bella from an incubator to a crib and from Room #2 to Room #1, we've noticed a severe lack of interest in her progression towards coming home.  The doctor used to see her every day beginning in the morning.  After she was moved, she was lucky to see him in the late afternoon... if at all. 

When we saw the nurse fumble around and repeat to us the previous days orders, we, alongside the nurse, realized that the doctor had not seen Bella and, thus, had not written anything new for her orders.

Miles and I steamed.  Well, Miles steamed.  My stress and my anxiety only propelled me into a spiral of sadness that my baby wasn't being taken care of in NICU.  In NICU.  All I could think about was how helpless she was lying there alone, unable to speak and these nurses are ignoring her (not the same nurses we were promised) and her doctor doesn't even look at her!  We're all waiting for her heart to show signs of failure.  That is something that must be constantly monitored.  Why was no one doing anything?!

Of course we made a plan to go in and talk to good ol' doc that next afternoon.  When we'd walked in, a nurse was (we're convinced) staged by Bella's cribside.  Politely she asked if we had any questions and we in fact did.  After I asked, "So her respiratory rate is continually high and we're waiting for it to lower to even attempt bottle feeding.  What if it never drops?"  For some reason this stumped her.  She began fiddling through Bella's notebook and couldn't find any information to suffice and began rattling off irrelevent tests that took place on the day of Bella's birth.  We know all that... and right now, it's irrelevent. 

Immediately after Miles began to push her more, she ordered a chest x-ray to look at Bella's lungs and heart for any signs of congestive heart failure as well as a handful of lab tests. 

She promised us that Dr. Benn would be in at the earliest (these three words are important) at 5:00 PM.  He was currently in clinic and wouldn't be up to finish his rounds until 5:00, again, at the earliest.

Miles and I walked out since we'd been pushed into the corner of the NICU room by the flock of nurses who magically appeared to pursue tests for Bella.  We decided to come back at 5:00. 

By 5:20 we were at the hospital, in the lobby washing and sanitizing, and on the phone calling in to be authorized to visit Bella.  When we met with Bella's nurse, she informed us that we "...just missed Dr. Benn."  My mouth agape, I managed to ask her if there was any way he could be contacted tonight and asked to contact us tonight since we'd been trying to talk to him all day... and haven't talked to him for days.  Shaking her head, she couldn't promise us anything and said she couldn't get him by now since he was on his way to Synagogue. 

At this point I'm going to cry, rage and eat someone's face.  As Mr. Gerard Butler's character says in Law Abiding Citizen, "...this is going to be Biblical."  A mother's rage is like no other.

Miles was able to maintain a sense of dignified character and pushed the nurse more for information.  He made the room uncomfortable to anyone passing by, let me tell you!  She'd told us Dr. Benn would be in around 9-10 AM and he informed her that we were previously informed that he'd be in at 5:00 today at the earliest and somehow, he's magically gone by 5:20!  Of course she had no idea what to say.  I thoroughly enjoyed watching the nurses run around like chickens with their heads cut off as Miles held our baby girl and I held her feeding plunge.

As Miles and I sat there with our baby, attempting to get her to suckle on her pacifier while the food filled her tummy, we began bleeding anger.  Miles was in the middle of a horrifically angry sentence about Dr. Benn when, lo' and behold!  The doctor appears magically!  Coat on, hat in hand, he rushes in and straight to Bella.  Wow... what a surprise.

After her lab tests and x-ray, it looks like we'll be sending Bella to Omaha for her heart surgery a lot sooner than anticipated/desired.  The ideal is to send them in at 2 months of age, at the earliest, but she is showing signs of congestive heart failure right now.  He's doubling her dosage of Lacix (this slows down the process of congestive heart failure) and if, by the end of the weekend, she doesn't seem to be responding to the doubled dose... he will call in Dr. Spangler, her pediatric cardiologist, and assess what to do and when to possibly send her to her surgery.

We may be going to Nebraska as early as Monday or Tuesday.  Or, we may be spending Christmas there.

Regardless of, it's been eventful.  Please continue to pray for Bella, her care, and her ability to survive.

Thursday, December 3, 2009

NICU Day #8

Bella's respiratory rate is still considered too high to attempt bottle feeding.  Until then we're just waiting for her to learn to breathe at a slower pace.  She's no longer on room air, as she only lasted 7 minutes before her blood oxygen levels dropped too low.  We're fine with her being on oxygen... or, as fine as you can be with anyone being on oxygen.  Both Miles and I are impatiently waiting to bring home our little girl.

We've set up to do her first bath tomorrow night :)  It won't be her first, but with us it will be.  We also had quite the little adventure this evening at our last visit.

After we waited for her to finish "eating" (via syringe dripping by gravity), we figured the faces she made had to do with her pooping.  Before we held her, we decided we should check her diaper to change her since she's developed a slight diaper rash.

Just as Miles wiped her all off, I turned my head away for a moment and heard him exclaim, "Oh jeez."  When I turned back to look at Bella, she was peeing!  This made me squeal, laugh and wonder... I didn't know little girls did that too.  She'd managed to get her onesie, her new diaper and her blanket covered enough for new items... so as the nurse fetched a new onesie and blanket, Miles cleaned her up (again) and lo' and behold she began to poo!  This just was the icing on the cake for me and I couldn't stop laughing.  Miles cleans her up (again) and runs to the sink to wash his hands.  While I stood by to finish up the changing of (the 3rd) diaper... she started to poo again.  By this time, I looked at Nurse Jonie and said, "Should I just wait?!  This is the third time and third diaper!"  She never gave me a definitive answer, so I decided to wait. 

Even after about 3 minutes, when I wiped her up again she decided she had a little more peeing to do.  Jonie told us it wasn't a big deal and we could leave that diaper on her since it was really just a very little amount. 

This whole fiasco, I swear, took about 10 minutes.  It continued to be a topic for laughter later on.

I held her until it was time to go.  Despite getting there at 9:30, I didn't realize it was 11:15 already when we put her down in her crib.  When we got back into the car, I felt so bad that I didn't leave at 11:00 when the nurse's receive their reports.  (We're not supposed to visit the babies during the private nurse reportings that occur form 7-8 AM, 3-4 PM, 7-8 PM and 11-Midnight). 

Now we're home.  And slightly wide awake.  Miles and I took a much needed 4 hour nap today after our initial visit.  Mama cooked us some lasagne and we all ate together after they came back from their evening visit with Bella.

Tomorrow we hope to see the doctor and ask him a few questions...

Precious God, I miss my baby.  It's getting harder and harder to leave her every day in the hospital.  Thank You for providing her with such good medical care until we can have her safe at home.  We pray in earnest that You will heal her and teach her how to breathe.  Help Bella learn to live in this world, and learn to eat as she needs to.  Let her know, please God, that her parents love her dearly and we can't wait for her to come home.  Thank You for her, God.

Tuesday, December 1, 2009

Nicu Day #7

Last night I absolutely crashed.  Well, to be honest, I had finally let myself accept that I was stressed and therefore "indulged" in some much needed "me" time.  Due to that, I never updated with an entry about Bella.  I, of course, feel super horrible but realize that there wasn't entirely too much to report on!

Today Bella turned 1-week-old!  In honor of this, I stuck her name embroidered pink bear wrist rattle on her crib.  Her what?  Yes, her crib.

Within the past 48 hours, Bella has been removed from her incubator, removed from her phototherapy, and is seemingly permanently on either oxygen or room air.  They attempted to bottle feed her yesterday.  Her first attempt had a successful suckling of 5 out of 45 mL.  After that she barely suckled anything out of the bottle, but she is indeed suckling. 

In case it's been too much change too soon, they didn't bottle feed her at all today.  She'd spat up four of her last feedings by the time we arrived today at noon, so they insisted we didn't jar her around by rocking her or passing her around too much. 

Miles started his Paternity Leave today, so he will have the next 10 days off.  We took full advantage of this by enrolling her in the military system, in TriCare (insurance) and soon we'll be going to the courthouse to get her birth certificate.  When we do things like this, I can't believe we have a baby!

Bella's pretty much at the end, I'd say.  When she finally decides to take to the bottle for all of her feedings (and keep them down!) they'll (probably) be sending her home.  If she's still not on room air, then she'll be sent home on oxygen... but that's okay with me!  I want my baby home.

Admittedly it gets harder every visit for me to walk away.  Coming home is depressing.  I love my husband, I love my cats, and I love our home... but coming home without Bella feels wrong and it's very depressing.  Although, I probably need to be here to at least shower and sleep ;-)