Thursday, September 1, 2011

the children's hospital

There's not much that makes me more thankful for general health than a day-long trip to the children's hospital.

As Lu and I walk down the brightly decorated corridor to our appointment, bathed in the early-morning light filtering through the bay of windows we see things:

Children seemingly much too small for such a trial are curled up in wheelchairs, legs shrunken an deformed. Smiling no less.

Others rock themselves in their orange velvet seats that line the various waiting rooms, oblivious to anything that is going on around them.

Still others are just bored. They cry or roll on the floor begging to go back home.

Some "library mom" mothers sit patiently, with a bag full of activities to do with their children while they wait. They are in control and their children feel the comfort of that fact, looking up to their smiles of reassurance. I think about how strong some of them are, putting on a happy face on the outside to calm the fears of their children while inside they are aching. And it makes me ache for them too.

Other moms are frustrated. Their faces make it obvious that they have waited too long to get into the doctor after traveling from afar to get here so early. They are tired. Not only from waiting here while trying to keep their child happy, but they are tired of searching to find out how they can best help that struggling child of theirs. They have racked their brains to figure out the best strategies. They have waited on endless phone calls to insurance companies to try to get various tests covered. They have changed diets and tried countless medications. And no matter what they do they know they will never be "done."

They are scared because they don't know what the future holds for them. For their child. For their family.

I know this because I have been there. I have been in their shoes.

And my heart reaches out to them even though I don't say a word.

Lucy walks along carrying her jack-o-lantern bucket full of "stuff" behind me. I think to myself how happy I am that that thing is finally not so out of season...it's relatives are quickly filling up store shelves in preparation for a holiday that is seemingly still so far away.

I look at Lucy and I thank my lucky stars that she can communicate. That she can walk. That she smiles at me and it squishes her cheeks up and out, making my love for her take an even tighter hold on me.

We check in.

We are there to test for growth hormone which she's tested deficient in twice. The plan is to put in an IV and take blood at half hour increments all day to get an accurate reading. I'm scared. I know from experience that her veins are deep and tiny, and that she is strong. But I, just like those mothers lining the halls, am trying to put on a brave face.

The nurses are kind. They treat her like a queen but she knows trouble is brewing. I am sad that she's worried, but I can't help but be glad that in her mind she "gets it."

The nurse asks how I think she'll do with the IV. I tell her that although she was amazingly compliant last time we drew blood, every other time (and there have been a lot of them) we have both emerged crying. Lucy is obstinate. Her smile has faded long ago. She doesn't want to sit in the right chair. I try to tuck her into my lap and reassure her she will be ok but she begins to flail. Another nurse is called in. The chair is changed into a table and one nurse asks me to climb up and straddle my daughter's legs. I whisper love into her un-hearing ears. She is in misery. So am I. Drips of blood are splatting on the floor but there is still no IV in place.

The "child life" team is called. An "IV specialist" team is called too. We wait each in our silent misery.

Two men on the IV team arrive, one tall and slender, the other with large metal earrings framing his kind face. They find a good vein and wrap the rest of her body tight in a blanket like a cocoon so she can't squirm. They try for the vein in vain as Lucy pleads with me to go home. A "child life specialist" is blowing bubbles that Lucy doesn't see through her tears and wails.

She tells me over and over again "I want to kick!" She is so frustrated that blanket is sucking her freedom right out of her. Distraught and ready to give up they happen to notice a succulent vein in her foot. We talk to Lucy and promise her we'll just try one more time. She holds surprisingly still and suddenly the needle is in. Everyone in the room (now filled with helpers) takes a sigh of relief.

The rest is easy.

We are wrapped up together on the chair all day. All the activities we brought to do together sit untouched because she falls asleep after a short game on my iPhone (one of the medicines administered with the IV is a relaxing one). I wish to myself that they could have given her that before all the needle pricks. I read my book club book as she sleeps sprawled on top of me. I am so uncomfortable but so in love with the fact that I get to have her so close to me, softly breathing as her body melts into mine (Lu is not a snuggler).

Finally by mid-afternoon we are done.

They un-tape her poor foot and have her walk around and take a drink before they'll let us leave.

As we walk back down the corridor and out to our car I wonder about all the other procedures going on there that day. I say a silent prayer for those children and parents who are suffering there. I also offer a prayer of thanks that we have such places as this to bring our children. I'm so thankful for the nurses who are so kind. For modern medicine that can help us make diagnoses and correct things that go wrong.
I'm so grateful that instead of the oxygen tank or crutches or broken hearts others are taking away from their hospital experiences we take with us only some deep bruises and a sticker reward Lucy struts proudly away with.

She is drowsy the rest of the day. After falling asleep in the middle of the kitchen floor I move her to the couch.I hope that little sleeping beauty somehow maybe dreamed about how good it was that she did that "hard thing" that day and that it will help us get more answers that will help her in the long run.

And I hope we won't have to do that ever again.

47 comments:

Love Being A Nonny said...

Through tears I smile at that last, precious picture. I too am humbled by all the moms who do this monthly, weekly, daily......So hard to not just grab them up and run. We do hard things. Bless you.

Jenny said...

I know a lot of it has to do with Lucy being afraid & having hard veins but one thing that may help is for her to have a prescription of Emla cream. Its a topical cream that numbs the area which would hopefully at least make things just a little easier. Hoping you all don't have to go through this sort of thing again though!

Birdie in DC said...

Thanks for sharing. I totally agree and understand. I have spent time at the Children's hospital for physical therapy for my one year old and am always sort of amazed at the poignant inner struggles of all of the parents and kids there. The solidarity is silent because words cannot really access the tender, personal, inner struggle of worry and hope and sorrow and love that parents feel.
May you and the doctors be guided in their quest to help Lu.

dresselfamily.blogspot.com said...

i sit here bawling. What a brave little girl, and a brave mommy. There is nothing more heartbreaking that watching your child suffer. My heart goes out to moms, dads and children everywhere. It really makes you stop and count your blessings.

Britney said...

I am one of those moms who spend countless times at PCH trying to find out what is wrong with my child. I definitely know how you feel and its not a fun thing to go through. Hopefully all tests come back fine with her!

Vicki said...

It is with a HUGE lump in my throat that I write this. Thank you for reminding us to be thankful for our blessings. God bless Lu and all the kids that have to go through all of that. :( And the families that suffer through it with them.
My heart hurts...

SydneyMin said...

So grateful for doctors and hospitals and all other wonderful medical things we have in this world. So grateful that they prolong our lives and our quality of life. Only so sorry that it is so hard to get that blood out of your daughter! I hope the results are good :)

Amy Lindstrom ~ YourLifeUncommon.com said...

Oh my dear friend...(although you don't know a darn thing about me :) ) Thank you for reminding me of the place that I both dreaded AND loved!

My twins were born at 27 weeks, in a "normal" hospital. Mallory escaped at 3 months with only a heart, eye & 2 brain surgeries. She is doing pretty darn good....miraculously good, to be honest. A few quirks here or there, but overall, we are blessed.

Our Dawson carried the full burden of his prematurity. He was transferred to Primary Childrens Hospital and we both lived there until he was 8 months old. I missed my older sons entire kindergarten year. Dawson endured then and over the next couple of years over 40 surgeries, 27 of which were on his brain. He was my angel. His life depended on my ability to keep going each day. For 4 1/2 years we spent WAY more time in that hospital than I did out of it. Last January, my sweet little boy, returned home to our Father in Heaven. He took a huge chunk of my heart with him. I miss him so badly!

The experience of that hospital molded me into the woman I am now. I remember and actually long to go back to the sacrament meeting services in that hospital. Parents would come in carrying their small children and dragging iv poles behind them, small children would sit with their bald little heads, evidence of their cancerous battles, next to their entire family...all with shaved heads to express their loyalty and support to their brave little person.

I remember being profoundly impacted by the spirit that attends those meetings. Where else in the world would the love of our Father in Heaven be poured out so fully?! Little children, pure & innocent, obviously VERY special to Him, bravely going through way more trial than their little bodies should be able to handle. In my opinion, doing it all out of love. A pre-existence sort of agreement to give spiritually to their family what they would need to fulfill their missions here and become who the Lord needed them to be. It was sacred! The power of the spirit in that hospital is profound!

After Dawson passed away, and we returned for Mallory's annual check up, I walked through the halls, seeing all that you have described. My son was with me, but not small and broken. He was enormous, strong & noble. We could feel him in the air all around us. Knowing him this way made it possible for me to sense the same about these suffering children. It was simply the most amazing feeling! I wanted to grab each mother and tell her to hold on to their child, they are FAR more noble and amazing than you can even imagine! They are, as their mothers, more valuable and supported than they know. It was such a different feeling being on this side, instead of dreading what would come, I missed it. I missed Dawson so much that I would give anything to be pushing his flourescent green wheelchair down that hall! We could face anything...he pretty much already had!

I am sorry about the lengthy comment. I hope you can feel how much I love and respect you! I have been reading your blog for a long time and I am ALWAYS encouraged by the kind of woman you are! You set such a great example! Thank you SO much!!

jill said...
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jill said...
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Shalise said...

I've done that helpless and grateful Children's Hospital walk. Thank you for posting. It's good to feel like my not normal is a little bit normal. I wish you all the best for Lucy!

Jennifer said...

Tears streaming as I write this. My heart breaks for all the children (and their families) in this world who have to suffer with health problems. I'm so sorry it was a difficult day trying to get the IV in...you both must have been emotionally and physically drained after that event.

What a beautiful (and brave) daughter you have and what an amazing mom you are!

Hugs,
jennifer

L, T, P, & J said...

I usually just read your posts, but I feel compelled to comment today. :) I have been to PCH a couple of times with my children, but fortunately for me, they were relatively very benign visits. Like you, my thoughts and prayers went out to all the other moms who were there under much more serious circumstances. It's been a long time now since we've been to anything other than an annual well-child check-up, but your emotional words remind me that we CAN do the hard things. My very best to you & Lucy! And p.s. - you are reading a wonderful book!! One of my favorites!

jill said...

jill said...
I used to do this with my son. It is heartbreaking.
I agree with Jenny (above), emla cream is a life saver. It is a numbing cream you apply 1 hour before the needle stick. After you put it on a place where you have a good vein, you apply a plastic "bandaid" on it to keep it in place. My son never felt any pricks after we learned about that. Some insurances won't cover it, but it's inexpensive so I'd ask for it.
Also, you could request a smaller needle, unless they're also using the smallest already. We used a NICU needle with my 5 year old & they found the vein on the first try.
Bless you & your family!

Kimberly said...

You brought me to tears this morning. I hope Lucy (and her mom)have a better day today. What a good reminder to us to appreciate modern medicine and the blessing we sometimes have to not have to use it!

Rachael said...

I've never commented before on your blog. Thank you for this touching post. God bless mothers, God bless the children, especially those going through trials. Thank you for being such an inspiration to me. Being a mom is hard. But it is wonderful beyond words. I love how you can so eloquently describe the good, the bad, the hard and the exquisite of raising children. God bless you and your family.

Brandee said...

That brought me to tears. So well told and written. So sorry for you and Lucy. She is so lucky to have you as her mom and you are so blessed to be her mom. Here's to a new day!

Sassy Sites! said...

I LOVE reading what you write. I could seriously just sit and read your words ALL day. The way you say things is so...well... perfect! I feel like I spent the day at the hospital with you and Lucy, after reading your post. I could feel your pain as a mom. We spent last Thursday at PCH with my 5 year old undergoing a sweat test to determine if he has cystic fibrosis. Although, thankfully no needles were involved it was a VERY long day. I just want you to know that I LOVE your blog. I look forward to every post. You are SO real!! I appreciate that! You are WONDERFUL!!

John said...
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John said...

What a great sad story. Thank you. You made it so real and I cried. For you. For Lucy. And for every other child and mother (and father) dealing with so much.
-Tawnie

Jennifer said...

That was beautifully written. I can completely relate to this post...PCH, observing other mother's and children, growth hormone stimulation test, and small veins (we've had iv's ending up in my daughters neck, blood taken from her foot etc etc..all with lot's of tears and prayers.)

Our gh test came back low. We did gh injections for a year, but my daughter grew so quickly, and it didn't help her stop gaining weight, so they took her off. We are still searching for answers.

Praying for you and Lucy.

Rebecca said...

Oh you made me cry. You put to words so well the thoughts I have had walking the halls of Children's Hospitals with my little one. And of the one horrible, horrible time when they tried for over an hour to get a vein.

That was so beautiful. Thank you for sharing that.

The 1st of May said...

That was a hard day. Loved the pattern you were writing in for this post...it almost had the rhythm of a heart beating, which is fitting.

You and Lucy are so brave. This was such a great reminder to not take our health and life for granted!

Juliejaz said...

I cried reading that, but what kept going through my mind is, Lucy is like the rest of her family, she can do hard things.

Kailee said...

This made me cry..it was so beautifully written and it makes me so sad to think of you and all the other mothers, and Lucy and the other children because it's just so sad. Hospitals are not a happy place. I'm glad it's over. Thank you for writing this :)

Tess said...

Shawni, I am sitting here at work crying in my cubicle over that beautiful post. You are such a heroic mother and your little Lucy is a real champion! What a difficult thing for you both to have to go through, and perhaps it's even harder for you than for her. But as you said, what a blessing to know that we do have medicine and hospitals to help us. You and Lucy will be in my prayers from now on!

Chelsee said...

This post was so well written and touching. Thanks for reminding me of my blessings.

Mary Ann said...

Shawni, you deserve a sticker reward. Preferably one that says "I am a library mom!". You did a magnificent job, but boy howdy! That is NOT the book to read in the hospital!
Good job Lucy!

Jerlyn said...

I have never posted before but glad I read this today to hear that other moms feel the same as they walk down the lonely, scary corridors of the hospital as procedures are about to be performed. The strength it takes to hold it together when, I too, know in moments, I will have to let my son face pain in order to have more days to spend on this earth. Tomorrow is our day at PCH, filled with more heart tests and prayers that no more surgeries are necessary. I am hoping for a sigh of relief as we walk out the doors. But,like you, I pray for all of those that are not as fortunate. Thank you. This gave me more strength to face "our" day tomorrow. Oh how I hope the IV goes in on the first try. Lucy will be in our prayers that the doctors will be guided and inspired by our Father in Heaven.

Brooke said...

I can't even imagine. Each day I am grateful for my sweet baby's good health, and each day (and night) I ask Heavenly Father to continue to bless her with it. You and LUCY are champions!

Kate said...

Shawni your post made me cry. (I see I'm not the only one) Bless you and all moms trying through prayers and faith and never giving up to help their babies the best they can :)
I feel really grateful to know you.

Barb @ getupandplay said...

Tears over here, too. I'm so touched by your compassion and empathy for the other children and parents at the children's hospital. My heart reaches out to them, too. And I feel for you and Lucy and your family. Yes, you can all do hard things, well done.

Jessica said...

Thank you for sharing your perspective. My heart is full and I am feeling more gratitude for my own challenges.

Eyrealm said...

Gosh Shawni! That brings tears! Wish I could have been there! I love you and that brave little girl! We'll be waiting with baited breath for results!

Ashley said...

As a pediatric heart transplant nurse myself it is amazing to hear your detailed perspective of the whole experience. I have been that nurse, with that child, trying to get an IV, calling back up nurses to help hold the child, then the IV team for assistance. It really makes me step back and think about what parents go through each day when they come to the hospital for an appointment, procedure, test, or blood work. It is just another day to me...but a huge experience/memory/heart ache of a day for the child and the family. Thanks for making me stop and think about what I do each day and the impact I will have on the family and child and how I can make the experience as positive as possible.

Nancy said...

Random question... I know this has to cross your mind. And your husband's mind...

how much do you worry about sharing photos/info about your kids and their security? I live far away from all our family and use blogs/you tube to share photos/stories/videos with all of them, but when I get a random person following videos of my kids it freaks me out. Thoughts on this??

Hilary said...

Oh my goodness, I know exactly what you mean by walking the halls of a children's hospital, wanting to cry for the other moms there, all while trying to put on a brave face as well.
We live in SLC [we're from AZ] :) and go to Primary Children's Hospital for my daughter who suffered an in-utero stroke. We are blessed that we don't have to go to Primary's frequently, but every time we walk the halls, my heart breaks for those little ones that have to be in there.
Good luck with everything!
p.s. Your Lucy is adorable!

Beverly said...

That last picture is precious. There is nothing like a sleeping child. I'm so sorry Lucy has to do hard things like that. She's a beautiful child.

Cindy said...

My heart goes out to you and Lucy. We have been in your shoes before. When our son was just a little guy he had so many blood draws and IV's he would tell the lab techs/nurses what to do. He always made sure they used a "butterfly" needle if he saw them grabbing something else. I prayed a lot that it would be just one draw, just one poke, for my sweet little guy. Thankfully, as he has gotten older his veins have grown, and it's a much easier draw. Thank you for sharing your story.

Momza said...

Every day for three years (M-F) I sat with my special needs son at Phoenix Children's Hospital...those days were long and emotional. I learned that I can do hard things there too. Blessings to you and Lucy.

Karianne said...

I love the editing of these pictures. I shows the emotion and dreary-ness that you expressed so beautifully in your words. Your strength motivates me to do more and BE more.

kuestermom said...

i don't know you-only through this blog-but i just want to say thank you for being such a wonderful example of what a loving mother is. this post brought me to tears and i pray that lucy and you will only be stronger from these challenges. thank you again for your honesty and true heart put out here on the computer for us moms to read.

Mary said...
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Mary said...

Hi Shawnie - Carly also has growth hormone failure - She sees Dr. Sobchek too - I hope she shared that Carly had the test and also now takes the shots. She has only gained 4 pounds since MAY!! She gained 9 pounds in the month between the test and the start of injections.

The injections do not hurt! AT ALL!! Carly will happily let me give her the shot each night. She has gotten somewhat taller, and is markedly slimmer - call me if you want to talk about it - the treatment is a breeze (for once!!)

The Andersens said...

Your post really hit home today. We had to air vac our daughter to Phoenix Children's two years ago last month. She ended up having an emergency surgery and since then we have been back several times, but her problem was fixable and two surgeries later she is just fine. The last overnight stay was in the cancer ward. To see these kids with no hair and smiles on their face breaks your heart. I felt like I didn't have much to complain about anymore. I am glad Lucy got through it ok.

Ruth H. said...

Emla cream can be great for shots, but cardiac nurses will tell you it has the unfortunate side effect of constricting the veins. So, for tiny veins, it might make things worse. NICU nurses and nurses from the life flight teams are usually the best in the hospital at hitting veins. When it counts, request one of them.

My Sariah has had her fair share of IV's and blood draws. Some are easier than others. The worst happened early on in her life--we HAD to have a blood draw. On Christmas Eve, no less. It took 13 tries to get a usable sample and eight hours in the ER (the lab wasn't open on Dec. 24th). A cardiologist finally had to come and do a special draw from an arterial vein. I'd brought the other kids because I thought it would be an in-and-out thing. We left the ER at 9 P.M. on Christmas Eve. Bleeeeech! We've learned a lot, since then. Sariah has learned which veins give blood the most easily, and most of the people at the hospital who know her will let her point out the vein to use--and those who don't end up finding out that they should have. We've also taught her breathing exercises to do that "help the blood come out quickly". She's almost eight, and just mastered those in the last two years. One of the things that works really well is that I've figured out what Sariah's favorite things are at the hospital--I let her pick someplace to go after the draw, and we go no matter what.

Thank you for sharing your perspective of the children's hospital. It's something I can relate to. I find that no matter what we've been through, I can always find another family who has dealt with more. While I sometimes feel such a weight of sadness at all the suffering I see during our visits, it is a privilege to be among some of Heavenly Father's strongest spirits.

I hope the information you get from this test will be helpful in caring for Lucy.

RootsAndWingsCo said...

We spend time in hospitals with our little one. Too much time. I am always struck with the life in the children even when they are enduring terrible things. I always leave with a heavy heart. You wrote it so much better than I ever could have. Yet most of what you wrote, I know just what you are talking about. Thank you for such a beautifully written post.

Anjeanette

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