Blessings?

Parenting is not for the faint of heart, apparently.  I've never been much of a night owl... and you know where this is going.  A few nights ago Nick and I took shifts being awake with Ada after she had received her first round of immunizations.  I guess all the all-nighters in college served to prepare me.  Who am I kidding?  I had maybe two or three all-nighters in all four years of college.  I need my sleep.  But not when I have a dear little one who is in pain and needs to be held.

On top of the distress from the shots,  her pediatrician has started her on a diuretic, with the purpose of clearing out her lungs of excess fluid.  I can't completely understand the situation, but in short, Ada's heart makes a choice on where the blood will go- some to the lungs, some to the body.  And the good news is that plenty of blood is getting to the lungs, so her blood oxygen saturation levels are in the high 90s, or very good for a "normal"-hearted person.  But that also means that her lungs are getting "wet" because of the great amount of oxygen, and thus she is tiring easily and feeding has not been going well at all.  We haven't had another baby to compare Ada to, so we really weren't sure of the expectations for how quickly she should be feeding, and how much she should be able to consume in a matter of minutes.

Doctor appointments are stressful to me, because I don't know how freaked out I am supposed to be.  I've been getting direct phone calls from the pediatrician and the cardiologist, which makes me realize that they are indeed staying on top of Ada's situation, which is great... BUT, also that they are expressing concern over her situation.  As I go through my daily routines with her of feeding and naps and anything in between, it is easy to relax a bit and think everything is fine.  Apparently 30-40 minutes to drink 2-3 ounces is not fine.  How un-fine are we talking?  I want her to be fine, I want life to be normal, at LEAST until the surgery time in the fall.  These days with her are enjoyable and sweet and special and at the same time they are so scary and tiring.  We can't do this on our own.

Listening to the radio yesterday I was reminded of a well-known Christian musician whose son has a very similar heart condition to Ada's.  He has a blog and many supporters, and a medium through his music and the airwaves to share about what he has learned through this process.  Well, I have a blog and many friends, and I certainly could write a song or two if I thought that would help me feel better or express my situation.  But as I consider that, I realize that none of the lyrics I would choose would be very radio-friendly.

There are many times in a day when it is hard to remember the simple, yet amazing gift of life itself.  I am privileged to care for a little baby girl and having experienced loss, it is all the more precious to me to have Ada in my arms.  But some days I have words I'd like to share to whomever will hear that do NOT sound too KLOVE friendly.  The first time I heard the song "Blessings" I wanted to change the channel immediately... "What if Your blessings come through raindrops, what if Your healing comes through tears, what if a thousand sleepless nights are what it takes to know You're near..."  Ugh.  Some day I'll probably love the song.  But guaranteed, not in the middle of a sleepless night with a screaming baby and a scary heart condition.

Many have asked how we are doing, and the Minnesotan in me starts with a tentative, "Fine..."

And then I realize that I don't have to be fine right now.  I'm hanging on.  Most days I bobble between feeling somewhat normal and showered and fed and grateful to just plain old surviving.  There are a good many things I'd like to be doing (like actually giving more attention to the plants on my deck so we will gain more than two teeny cherry tomatoes this summer - or making a beautiful mobile for the nursery to stimulate Ada's brain development - or writing thank you's to the many people who have blessed us this past month - or remembering "tummy time" for baby Ada - or vacuuming - or planning ahead for fall music lessons, fast approaching - or ...) and yet in all honesty, my full time job is feeding Ada, and working so very, very hard to get her to gain weight.  And when she won't drink, she won't drink, and I get frustrated and scared and begin to dread the next doctor visit and what the word will be at that point.

Another lesson in life that we are not in control.  And though tonight I cannot sing the Blessings song because I don't WANT that-  I want sanity and comfort and protection and health and heck, a bit of prosperity wouldn't hurt, either- I know that it is true that we are not alone in these days of survival.  This is a season, God only knows how long or how short, that my prayers are those of desperation:
Lord, help.  
 I need sleep.
 Help her to eat.
 Someday I'll trust that God will give me the grace and strength to lengthen out my prayers and my focus and my clarity and perspective on life so that I can write a song like "Blessings" and mean it.

For those who pray,
pray that Ada would eat what she needs to grow as big as she needs to be for the fall surgery;
pray for our doctors to have wisdom in her treatment (and that they'd communicate with us well so we don't needlessly freak out over not understanding what they're saying);
pray for rest for the three of us, and perhaps our neighbors as well?!;
pray for financial provision;
pray for Nick and I to grow together in this time of stress and support one another;
pray for the healing of Ada's heart.

Love to you all, goodnight.

Our dear little lady... I often wonder what she is thinking as she gives us some ridiculously precious facial expressions.  They change so very quickly that we get a little show many times in the day.  It goes from super cute and happy, head thrown back, eyes closed and a precious open-mouthed shriek of joy to pouty-lipped waa-waa-waa's in record time.  She has not learned yet to contain or contrive her emotions, which make it so fun to observe.  Also, it is pretty impossible to please this little girl perfectly.  The slightest jostle while holding her or loud noise will startle her into a fit of sadness as if we'd slapped her right in the face.  Oh my.  But we love it.

We have had some ups and downs in the last week.  Our visit to the cardiologist last week was very encouraging, as the heart defects have remained the same and the holes have not begun to close up, which for now is a good thing.  We will likely not need to go in for another echocardiogram for another month, which means that the doctor is pretty comfortable with her oxygen levels and condition.  We were so thankful to leave a doctor appointment feeling encouraged and filled with hope that Ada is doing well (and thus we somehow take some credit for that, at least internally).

The discouragement is that Ada has not been gaining weight well.  This is something that is a common issue for babies with heart defects, as the body burns more calories than normal to make up for all the hard work the heart has to do.  Last week she didn't gain any weight, so of course I was a basketcase.  We have since met with a lactation consultant and are in contact with the doctors and have a plan that might be working... we'll see.  The next weigh-in will be Monday.  I'd never known that breastfeeding could be such an emotionally taxing activity, on top of the physical demands.  So that would be a pretty basic but important request for prayer.  We need dear Ada to be big and strong as soon as possible, yet I can't force the food down her throat.  Thanks, folks!

We continue to be blessed by packages and meals and encouraging emails and texts and letters... wow.  Thanks, guys.  We know we have so much to be thankful for as I sit in my air conditioned apartment with a full pantry and a little wriggling baby by my side.  She did manage to just roll off the pile-o-blanket next to me and nearly into my lap in the middle of her nap.  Naptime at 10pm, you ask?  Don't.  It's been a rough day, schedule-wise.  Let's just say that the authors of "Babywise" would not approve!  I'm reading the book along with La Leche League's "The Womanly Art of Breastfeeding", and my brain is about to burst as it is being pulled in opposite directions.

So I know that my last post promised that I would post some musings about being a mother sometime soon.  I have journalled approximately 2.5 times in the last five weeks, and I actually think that is pretty good.  So I've not had a lot of time for deep thoughts... I am working on the first or perhaps second tier of Maslow's hierarchy of needs as I provide food and safety for my little one.  I will work up to self-actualization.... someday.  But not tonight.

Goodnight, and we'll chat again sooner or later!

Ada June arrives

So at long last, here is the story...
Have you ever had it said to you that you would "just know" when something new and amazing was happening to you?  For example, how do you know if you should get married?  I remember asking that question when Nick and I were in the dating phase of our relationship, and I remember getting the all-too-common response of "You'll just know!"  Well... maybe... yes... but making a lifelong commitment takes more than a magical feeling, I believe.  I was also told that I would "just Know" when I was in labor.

Incorrect.

A couple weeks ago I started feeling kind of gross and in some pain for a couple of days straight, which was new to me.  I'd had a relatively "easy" pregnancy, and had not felt any of the warning signs that labor was imminent.  After all, what is a contraction?  Who can explain it who has not felt one?  So I continued on with my activities.  On Tuesday the 14th I was supposed to have a pool date with a friend, and called her to cancel.  Instead, she brought over lunch and watched me lay on the couch in my uncomfortable state.  I was pretty bummed that I couldn't rock out my maternity swimsuit once again, and instead was feeling this grossness that confined me to my couch.  By the time she left a couple hours later, my feelings of grossness were getting a bit closer together, and I began to think that perhaps something was happening.  I called Nick from the painting job, and by the time he got home and saw the look on my face, he knew that he'd not be getting a shower, or even a change from his painting gear.

We drove safely yet swiftly to the hospital, and upon arrival, spoke to the nurse on duty to explain that these contractions were now about 2-3 minutes apart and that we were a "high-risk" pregnancy.  "yeah, yeah, we know", she said dismissively, and she continued to check us in and get my info.  My guess is that most of her patients must claim the title of high risk, as she didn't even know my name yet, but something telepathically must have given her that information.

A half hour later, I was in a labor and delivery room.  Turns out that I had been in labor for quite awhile without knowing it, and had advanced enough to the point that we were told that we would be having a baby that night!  This blog is neither the time nor the place to discuss all the lovely details of the birth of our baby (you are welcome!), but in essence we ended up having nearly every intervention that we'd hoped to avoid, ultimately including a C-Section delivery.  However, Nick and I had talked in advance about how we wanted to trust the medical professionals and their advice to us, knowing that they would likely be more apt to be cautious, due to the heart condition of our baby girl.  All in all, we were very impressed with our care at St. Joe's hospital, and had a great experience with all of the doctors, nurses, and interns.  Great people.

So we had arrived at the hospital a little after 5pm, and were gazing at our baby, Ada June Pitrone, at 1:47 am, Wednesday, June 15th.  My mom had been able to hop on a plane and arrived at the hospital a couple hours before Ada was born, which was a huge answer to prayer.  Upon birth, I was able to "hold" her, as is shown in the above photo, for a few minutes before Nick and Ada left to the Neo-Natal Intensive Care Unit down the hall.  My mom was there in scrubs ready to be with me as the doctors finished up their duties and I headed in to recovery next door.  Nick's parents and sister were also able to be at the hospital for 10 hours of waiting until they were able to see Ada at close to 5 am.

As far as her heart condition goes, Ada received an echocardiogram immediately after birth which showed the heart defects that we had been expecting (VSD, transposed great arteries, tricuspid atresia) as well as an ASD (atrial septal defect) and I think an additional valve that was not formed... the name of it escapes me at the moment!  In any case, our daughter has a very special heart... and with that said, she has done remarkably.  Numerous doctors and nurses have raved about how well she has done, and we are so very grateful and consider it to be a huge answer to our many prayers.  We were able to avoid the first of the three surgeries on her heart, that would've happened within the first week of her life.  Instead, Ada was discharged with me less than three days after being born!  Amazing!!

Two weeks later, and Nick and I are home with Ada, beginning a new life as a family.  We've been so grateful for the support of family - my parents were out for a week together, and mom for an additional week, and currently Nick's mom is staying and helping us out - and friends... it has been so fun to introduce our new favorite person to the many loving people in our lives.  Meals have come in to help the new mommy, loving gifts have come for dear little Ada, and countless emails, texts, calls, and cards to remind us that we are part of a large community that will be supporting us through these next days and weeks and months.

Later on we will post more in the way of specific prayer requests that we have now, as well as more pictures (yaaay!).  I also intend to blog about feelings.  I'm a new mom now, after all, and have a lot to debrief.  And I know there are many out there who have been there and we can support one another!

Much love to all of you!

Nick, Anna, and Ada Pitrone