1/10/11

Her story

  • Number of days Blessing spent at NICU - 246 days
  • Number of miles driven to and from Children's Hospital - 15,060
  • Money spent on gas - $3,012
  • Money spent on car accident - $1,000
  • Hours spent in hospital with blessing - 1,225
  • Money spent on food on the road - $1,968
  • Having our daughter home, under the same roof - PRICELESS

This post has been a long time coming... partly because I've been SO incredibly busy since Blessing was discharged from Children's Hospital on 10/13/10, and partly because re-visiting all the emotional events since February 2010 has been too much to go through a second time. So I plan on writing this over a period of a few days, maybe to soften the blow. And also because three kids 4 and under is no picnic! :)
To keep all my lovely readers on the same page, here's a little history on babe #3. Here's more... a little more... And here's more. And this is the last one... What you're reading now is about filling in the blanks.

I don't think any mother can really understand what it feels like to be separated from your helpless newborn until you've had to suffer through it. And I don't think any mother can understand the magnitude of the roller coaster ride of the NICU life until they've lived it. Of course, before Blessing was born, I was very empathetic of finding a family in this situation. But I didn't realize how CONSUMING it is. I remember thinking on several different occasions, "this must have been how Jewish moms felt when they were separated from their children in concentration camps". That may sound a bit dramatic, but that was what I had kept coming back to.
I remember being SO out of it after surgery. I remember crying my eyes out that first night I was no longer pregnant and she was gone, already safe in the NICU. I was physically alone in an uncomfortable hospital bed in a strange room, immobile and in pain, both my heart and my body. (I'd sent Bryan home to get some REAL sleep since he would need it in the coming days) I was so frustrated that I couldn't instantly fix everything and make it all go away. I wanted my baby girl, whole and healthy, sleeping peacefully beside me, as my other 2 kids had done after birth. But that was not her mission in life, and it was not meant to be for quite some time.

I still recall being in a daze, wanting to be angry but knowing that it was useless to feel that way. I remember being in complete denial about how serious her condition was; I did as much "homework" as I could before she was born. FYI, there is little to no useful information on esophageal atresia in the internet, and NONE of it talks about how much time is invested in this condition. I was under the impression that she would have surgery to connect her esophagus to her stomach within the week, she'd be recovering for a few more days, and that would be that. How blissfully ignorant I was of the whole thing!

{There are different types of esophageal atresia; some babies are born with long enough esophagus muscle but it never fused in utero, others have a short esophagus, others have an esophagus that connected wrong to the trachea, etc. Each 'type' of atresia have other associated problems, and each type have different procedures to follow in order for repair. Even more confusing is that the atresia medical community (and there IS a specific
community if you can believe it!) have different ways to go about repairing the esophagus.
Some are extremely invasive and not very effective, others are still up in the air, and
doctors are coming up with new, untested ideas quite frequently. This was a world that I
never wanted to be a part of!}

When it had already felt like Blessing was in the NICU for years (though it was only a week at best), and she had already gone through her 1st surgery (exploratory and to insert her feeding tube directly to her stomach), I got the shock of my life. I was told, very matter-of-factly, that my beautiful, tiny baby girl would spend the first year of her life in that NICU.

I felt like I was punched in the gut.

I instantly cried hot tears. I wanted to run away. I wanted that annoying doctor to get out of my sight so I could be with my baby and husband, as alone as we could be in a busy hospital floor, mourning over our loss. But she didn't leave... she just stood there, as if her presence somehow validated that we were completely at the mercy of modern medicine.

An entire year! How is that possible??? Why on earth would I need to go through this? Why would my innocent child need to live such a difficult life? How is this going to affect our future plans, our hopes for what is to come, our entire lives?

It took me a long time to wrap my brain around that news. At first, I was so hopeful that all the doctors were wrong, that somehow, the measurements that were taken were faulty and she really did have enough esophageal muscle to connect right away. I just KNEW that Heavenly Father loved me enough to give me this miracle, I KNEW that He was going to instantly heal her and she would be a miracle baby!

I fasted and prayed. Bryan fasted and prayed. Our families fasted and prayed. And yet, Heavenly Father knew that the best lessons of our lives would come from her being away from us. He wanted us to understand compassion, forgiveness, love, and accepting service from others.

Even though we learned these amazing lessons over time, it was nowhere near easy to travel to and from Children's hospital every day to spend a few hours with your new little one. It was taxing, both on my body and soul, and it was very emotional to leave each and every night. It was horrible to have to farm out my two boys every day. It was maddening to never get enough sleep, and to be on an exclusive fast food grab-and-go diet. As part of her congenital defect, blessing had to undergo a procedure called "bougienage" (bOO-djen-aadsh), several times a day. Basically, she gets a weighted tube shoved down her throat to help open and lengthen her esophagus. I'm sure it's extremely uncomfortable, it's not pretty to watch, and even more horrifyingly, it's not easy to hold your baby girl down when this gets done. In my head I knew that this was helping her, but it didn't make it any easier for me to be a part of. She had to get this done FOUR times daily. For over 230 days.

Every six weeks, Blessing would undergo a "study" to see how long her esophagus grew within that time frame. Each test day left me in a wreck, wondering how much longer she would have to be there without her family, how much longer she would have to endure those awful bougienage dialations.

There were some really heartbreaking things that we had to go through as a family; Einstein and Curly couldn't meet her for a very long time since the hospital was on Swine Flu lockdown. No one except Bryan and myself could even get a peek at her until she was 4 months old because of that damned swine flu! It was unfair. It was maddening!

The NICU, in my mind, had some pretty ridiculous "policies" as far as visiting, even after the swine flu restriction was lifted. Now, I know that they aren't necessarily equipped for the long term babies (most babies are out of "prison" from 10 days to 2 months), and I realize that they are there to keep the babies safe, but you'd think there could have been some exceptions. EVERYBODY knew who we were. Every single staff member on the night shift knew us by name, and over half of the day shift. It's not like we could have been impersonated! Even so, we still had to freaking call in every.single.TIME we wanted to visit. That annoyed me to no end!!! I jokingly told several nurses that I was expecting to be on the payroll since I was there so often!
We had met some amazing families who were there during our stay, and every single one of them had left before we did. Every one. It was a very long and lonely road to be on!

Some of the minor annoyances were that Blessing developed RSV. Full hospital RSV!!! That made me really mad. I KNEW she wouldn't have gotten RSV if she wasn't there, but where was she to go? I was just so frustrated and tired of no baby, no sleep, and a mile long list of "no's" standing in front of us. I think that was the only day that I actually yelled at a poor nurse! Looking back, I feel bad. But I suppose I had reached the end of my fuse. Ya think? :)

There were also, on two separate occasions, MERSA breakouts (a virus that is harmful to babies), which required all visitors to wear gloves and hospital gowns when in the NICU facility. Are you kidding me??? Not only do I make the 60 mile round trip to see my baby, but now I have to wear all this hospital crap! Those were not happy days either!

The worst part was that Blessing never looked sick! She was a plump (very plump, haha), cheerful, gorgeous little baby, ready to give you a beaming smile and a kiss to go with it. She never looked like she belonged there. But take her off of her suction, and she was a goner. So we had nothing but time. And we didn't have a "time frame", because the time frame was up to Blessing's esophagus! Sometimes it grew a lot, and sometimes not at all. I remember so many times eating at their cafeteria, striking up a conversation with the janitors, trying to get comfortable in their awfully UNcomfortable seating, walking down the LOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOONG
hallways to get to the NICU, which bathrooms were best to use, what to say to quickly get through security, those horrible, yucky green wrist bands that you HAD to wear (even though they weren't waterproof and got super nasty after taking a shower)... we eventually got smart about those and had the nurses put them on us very loosely(since they were supposed to do it and not us, for security verification), so we could slip them on and off without them knowing. That saved a TON of hassle. Any shred of personal vanity had gone out the window; I went makeup-less and in pajamas to the NICU countless times. I fell asleep in those awfully uncomfortable chairs too many times to count. I spent the better part of a year going on 3-4 hours of sleep a night, because, as difficult as it was, my other two kids still needed me. They still needed a mom and dad, and some sort of STABILITY. So they had me during the day and Blessing had me at night. Of course, I felt nothing but guilt when it came to my boys and quality time: I had nothing to give. I was completely burned out. So I definitely over-compensated. Trips to the Zoo and Wild Animal Park, no matter how tired or haggard I felt. Park days, feeding ducks, Balboa, a jam packed summer with nothing but activity after activity that I would somehow magically conjure from nothing...

And when I thought that we should just move to El Cajon and take up residence across the street from Children's... I got a phone call.

It was the NICU! They had news! Blessing FINALLY had a long enough esophagus to be connected. I was so excited! But at the same time, after much prayer and reflection, I had already felt that THIS was going to be the study where she would have a long enough esophagus.

The nanosecond after I hung up, I called Bryan. I just couldn't even get out the words, I was so happy and grateful and exhausted and excited! I managed to articulate, amidst tears and a runny nose, that our baby could have her surgery! I was so relieved, I felt so much peace and joy... we could be a FAMILY! Together!

Putting these events into words confirms to me over and over again how incredibly LIFTED and CARRIED my whole family was during this year.
Miracles came from left and right. Money came from out of nowhere to support us. Very large chunks of money that I would love to see now! :) A dear friend and old neighbor set up a babysitting schedule so Bryan and I could have time with Blessing. She did that for months! Meal after meal was dropped off for a solid month and a half. Prayers and good thoughts and fasting was given and performed in little Blessing's behalf, our family had a wonderful, spiritually uniting "prayer calendar", where we each had a little calendar that we would mark off each day with a sticker when we prayed for Blessing's quick recovery.

And you know what?

It may have seemed long to us(eternally long!), but Blessing recovered fast. very fast. She left the NICU, recovered from surgery, four months before schedule. She came out of surgery rosy cheeked and still healthy looking. She has absolutely NO ORAL AVERSION!!!! (This would be expected since she spent so long having "bad" things put in her mouth. Most babies in a long term NICU situation have some sort of aversion to oral stimulation. As in, unwillingness to eat, not wanting people close to their faces, won't kiss or let people near their mouths, etc. Blessing has N.O.N.E. of that. at all. What a miracle!) She has no developmental delay. She is happy and completely willing to eat and discover new foods. She is a strong little girl who knows how to get what she wants (wonder where that came from? hahaha). She has a healthy immune system, and is at a healthy weight after slimming down a bit once coming home. She is not short on people loving her. Her brothers adore her; absolutely NO sibling rivalry. She has a very calming influence in our home. She has left an impression in the hearts of many!

There were many, many miracles surrounding her hospital stay. Many of which I haven't even seen. Heavenly Father truly knew what He was doing when He sent her to us. And HE is a God of miracles!

Even after revisiting these long, endless days, I'm still so grateful that Blessing got the care that she did. Her nurses were incredibly amazing! They are truly WONDERFUL people! I know that Blessing got such love when we couldn't be there. She even got love when we WERE there! Everybody loved that girl!

I got the honor of cultivating so many wonderful relationships with some amazing women; some mothers, others hospital staff. I can honestly say that I love them!

9 devoted readers:

Anonymous said...

Wow to read that on a night of feeling like this adoption will never happen and feeling so blah and mad, you win! I love you and love that you made it through all of that. I love that you and Bryan somehow held it together! I love you

Love Sam

Joy said...

Thanks for sharing Sarah!! What an amazing story. You are so strong to be able to get through something like that.

The leader said...

WOW, Sarah, thanks for sharing. Very touching. I probably should have waited to read this until AFTER my upcoming delivery, because i'm a big teary mess now, but it just reassures me that HE is in charge, and things will work out ok in the end... even if it seems like a long time in coming!!

Michelle said...

Thank you for sharing your story with us. You recall to mind my favorite quote from President Ezra Taft Benson: "...Give me a young woman who loves home and family, who reads and ponders the scriptures daily, who has a burning testimony of the Book of Mormon. Give me a young woman who faithfully attends her church meetings, who is a seminary graduate, who has earned her Young Womanhood Recognition Award and wears it with pride! Give me a young woman who is virtuous, who has maintained her personal purity, who will not settle for less than a temple marriage, and I will give you a young woman who will perform miracles for the Lord now and throughout eternity."

You are such a woman.
http://lds.org/ensign/1986/11/to-the-young-women-of-the-church?lang=eng&noLang=true&path=/ensign/1986/11/to-the-young-women-of-the-church

flip flop mama said...

What an amazing story! Thank you for sharing it with us.

Steph said...

Wow, I had no idea the magnitude of what you and your family have been through this year. You are amazing! and I will never complain (about anything so minute in comparison!) again... Soooo glad your baby girl is home safe and sound :)

Rachel said...

Geez, I am so pregnant! I was bawling through the whole story. What a trial yet how wonderful to have conquered the toughest thing in your lives! You should submit this to some magazines Sarah... seriously! I haven't read much on Blessing's condition in publication and I think your story is a great one.

Ms. Code said...

only thing more beautiful than your baby is your love for her. Be sure to thank your little miracle for bringing out your beauty! See you around!

Jessica said...

Wow, that really puts my last year in perspective. Thank you! I'm so glad that she is happy and healthy!