The Look (Part 2 of flashing back )

I remember walking in the "mod" for the first time.  Mind you, not the first time I had been there, but the first time I physically walked in .  It was on Monday.  I walked in to the unfamiliar room lined with isolettes on both sides. Seeing babies that were so tiny it was hard to believe you were looking at an actual breathing, living baby.  When I happened to meet eyes with a fellow parent, there was a hollow kind of sad look staring back at me.  Lillian was in a teeny tiny room barely large enough for her warmer and the ventilator at the very back of the room.  So not only did I feel completely overwhelmed, it felt like I was intruding on the lives of all the other families living there.  As we made it to the room, there was her "team" doing their rounds.  Sometimes, they envelope you in to what is going on, other times they act as if you've never stepped foot into the room.  As I washed my hands for eternity, the main doctor stepped out, introduced himself and began to tell us some of the issues they were uncovering. Pulmonary hypertension (high blood pressure in the lungs) heart problems...kidney problems....possible genetic testing. The pulmonary htn being the main concern .  He explained to me it would be some time before I could hold her because disturbing her body would only put her in a more precarious state. I knew it was important for her to be healthy, but I was so desperate to hold her.  I hate to even speak it, but I was afraid  she would die before I got to hold her in my arms.
  In those first few days,  I recall the main doctor discussing discharge plans with me and how much follow up we'd be needing to do for her regarding all her medical problems. 

Matt (my husband) was barely able to be at the hospital as he was trying to handle the children we had at home and continue to work. Bethany (our oldest) was only 10 when Lillian was born.  So we had a 10, 7,5, and four year old at home.
 I could barely walk as I was dealing with my recovery.  Not only was I sore and in pain from stitches, I had had an external aversion...( Lillian had been breech so my doctor physically turned her externally, then following that, I'd had an amniocentesis)my feet were so huge from swelling I couldn't wear shoes for two weeks. My blood pressure was still very high and of course the post partum was rough.  I remember taking showers in the morning and feeling so dizzy, I thought  I was going to pass out.  It was very difficult to sit on the shower seat, so I really didn't have too much choice in standing.
  I was pumping every two hours around the clock although the nursing staff told me not to that I need to sleep through the night.  I just couldn't do it.  Not only was falling asleep a huge task, but the only thing I felt like I could do in a helpless situation was provide milk for my sick little baby. Of course, I was barely getting anything out and the first time I actually got a couple ounces, I was so excited, I rushed out of my room to take a shower and locked myself right out.  I was making a call to securtiy at some ridiculous hour of the morning. 
After a few days of waiting, her pulmonary hypertension started to get better and i was able to hold her, but due to her being unstable, I'd have to commit to holding her very still for very long periods of time. Not only was it hard to hold her, it was hard to be able to hold her.  She required two nurses to move her.  When you are in a room with so many sick babies, it's not always easy to procur an extra set of hands.  I know that sounds like an easy task, but when you are in a lot of pain while sitting and you are desperately worried you are going to kink the ventilator...and you're drinking 2 liters of water to help with milk production, it tends not to be a very relaxing situation.  I had to remind myself to breathe.  The joy, oh the joy of it was just indescribable.
 I had no idea of how rough the road was going to get.

Flashing Back Part 1

I never kept a diary of what life was like when Lillian was born.  At the time, I thought I never wanted to look back and reread those terrifying days.  Five years later, the memories still dance around my head vividly.  It has been on my heart to maybe do some blogging on those early days.  Sometimes, I think it will help me to do it, but mostly, I feel it impressed on my heart that it might be out here in the virtual world to maybe help someone else.  Maybe someone else going though a similar situation can identify with.  So....as I remember those days, I'll share them here.  Try to honestly convey the events and emotions I recall.  Let's start with birth.

She was blue head to toe.  We had been told she might have trouble breathing due to being a bit premature, even with an amnio showing mature lungs, she might struggle.  I wasn't too concerned when they began to breathe for her with the ambu bag.  Her little body pinked right up and they would stop bagging.  Five seconds later, she was blue from head to toe and they were bagging her again.  Repeat, repeat, repeat.  She was in a warmer just a few arms lengths away from me and my eyes were glued to the chaos that was ensuing.  They just kept bagging her over and over again and they nurse couldn't stabilize her long enough to even transport her to the nursery.  At some point, my OBGYN left the work he was doing on my and went to the warmer as well.  That was a defining moment for me.  I knew.  I knew right then something was very wrong.  I remember hearing my OB call out to the desk for a pediatrician to be called ASAP, then at some point there were multiple staff members moving the warmer and bagging her and getting her to the nursery. 
After the doctor finished with me, he left the room to go the nursery to help until the pediatrician arrived.  When he did come back to the room, he let me know that she would be transported to a "big city" hospital very soon, they were just trying to decide which one.  He must have been in there with us a while.   Matt, my mom, and my sister in law were all in the room and I remember after he left just closing my eyes and breaking down into tears.  My sisterinlaw laid across me in a hug as best as she could.  I think I was just in shock.  My husband kept saying.."oh, she's going to be fine" My sisterinlaw left, in tears as best as I remember.  The pediatrician and my doctor entered the room at some point together and introductions were made and then the pediatrician gave us this news..."your daughter has a cleft palate and if we hold her tongue down, she breathes on her own, but she still can't keep her 02 sats up even with that.  something is going on that I don't understand. there is a team from Riley on the way here to transport her" the team arrived fairly quickly, and before I knew it a whole team was in the room with her in an isolette.  I reached over and opened the door...she was on her stomach, sleeping looking so peaceful.  I stuck my hand in to her and she grasped my finger immediately.  It was more than I could bear.  The team told us she had pierre robin syndrome and she'd have to have jaw distraction surgery and she'd be in the hospital for at least a month.  They would put metal rods in her jaws that would have to be turned daily to advance her lower jaw so she could breathe.  Then, they whisked her away.  I don't remember too much after that...I recall waking up at four thirty the next morning and crying as soon as my eyes opened.  The reality of the situation hitting me like a load of bricks.   I know Lillian was admitted to Riley just after midnight, so I can't really recall when Matt left or anything after they took her away except waking up at four thirty.  The nurse happened to be in the room and she brought the phone over to me and dialed the hospital and got the nurse taking care of Lillian on the phone.  Her name was Beth (short for Bethany).  She was so kind to me as I wept while she talked about how good they were taking care of her.  I don't remember much after that except when I finally got to the hospital to be with her.  There were several phone calls that day for permission to intubate her and take her to surgery.  I arrived at the hospital the evening after she was born.  I got to the floor to see her and my sister stayed in the room I was sleeping in until I fell asleep. 
The photo in the upper right corner was taken the next day when I saw her.  I couldn't get over how much she looked like her Daddy. 

Updating

It's been awhile and one would hope that means a little quiet time around this house...HA!!  That's a good one...just the way it goes in a household this size, I reckon. 

I never got a letter from our secondary insurance on Lillian, but she still is showing eligible, so that's good news.  Not sure if they are still waiting for documents or what, but I'm just happy it's still active.  Praise the Lord!

A couple weeks ago, she got really really sick...I mean like going in the hospital in 24 hours sick...turned out to be stomach flu and we were blessed to be able to manage at home, but it was touchy for a day or two. Took her three days to get back to tube feedings with formula.  Those are always scary days for this Momma.  Unfortunately, the WHOLE family, minus big Daddy, all fell to the evil stomach bug.  We had never had a whole househould of kids sick at the same time...not pretty friends, not pretty at all.  I will leave you to only imagine the gory details.  ICK. 

Her OT told me today how much she could see improvement in her strength in her hands, she was able to really pull on the putty that is one level down from the toughest putty.  (i never knew there was such a thing as levels of toughness of putty...while it makes absolute sense, I never even considered the matter)

Her Speech Therapist is a mixed report every week.  Some days she swallows and shows lots of interest in the foods offered, and other days it's a total no go.  She does come out with words and sounds now and then...more frequently, I'm just trying to be patient. Yesterday, she was just sort of grunting at me, and I said to her kind of firmly, "use your words or signs, Mommy doesn't know what you're saying"...well, she snapped into the biggest bunch of babbling you ever heard and I STILL couldn't make heads or tails of it.  Good...I know, but hard on me.  A pain I can't quite describe.

So I'm sitting here reviewing the days events in my mind and I find myself tearful as I think of the difficult parts of the day.  She fell repeatedly today slamming her head into the hardest surfaces...coffee table, hard wood floors, cabinets... sounding like a watermelon is being broken open.  No blood, but lots of knots and tears.  Then my mind starts to race...are her ears infected, is this just her "norm", is there something else going on to make her more unstable??  Oh man, it just never ends sometimes.  I found myelf almost in tears making her formula this morning. I know, sounds ridiculous.  I think it myself, but you can't imagine how to you just want to snap your fingers and all these issues disappear.  For her not to have all the struggles and battles.  I know I know, I recognize all the blessings and growth and GOOD things that are happening, but somedays it just hurts.   I have recently been haunted by some of those early days' memories, some of those awful bad days and to remember them ,at times, is just as painful as the day they happened. 

So I guess I should end with this, Lord, ease my troubled heart tonight, I know you got it all anyway....I extend this prayer to those other Moms out there walking a much more difficult road than me. Give us your peace.  Continue to give us your strength and remind us daily the blessing we've been entrusted.  In Your Holy Name.