Tuesday, October 27, 2009

Setback (posted by Julia)

Grandma stuck it out in the ER all night til we got our room at 3:30 AM
Ascities. Big belly. Humpty Dumpty (says jonah) whatever you want to call it. Can't wait till her tummy is not a source of such discomfort.

"Leave me alone, give me some air/oxygen and get out of my pretty little face. Thank you."

Sunday night, Lizzie and Grandma Barnum took LuLu to Primary Childrens emergency room. London had been lethargic, unable to stay awake after naps and whimpering throughout the day. I think I mentioned before how hard it is for Lizzie and James to know what is bothering LuLu on any given day.

By the time Grandma (NICU nurse) arrived to check on LuLu, her breathing was becoming labored and she was clearly in pain. The ER admitted her to the hospital @ 3:30 am after hours of exams, waiting, procedure, waiting, waiting, waiting. Since she had a mild fever, they suspected that the fluid buildup in her abdomen might be infected. This is a scenario which Dr. Book had mentioned before, and something that Lizzie and James have dreaded. It was decided that her bulging belly finally needed to be "tapped," or drained. They took out about half a liter, with more to spare. They had to leave some fluid to keep her electrolytes and sodium in check. All my mom would say the next morning is what a horrible, horrible night it was for London at the hospital.

It was determined that LuLu has a bacterial strep infection in her blood and belly fluid (ascites). She's receiving IV antibiotics and a narcotic for her pain. It's heartbreaking to see her fighting so hard. She doesn't have any fat reserves and she's just a limp little noodle-no energy at all. She occasionally comes out of her sleep to cry out in pain. I keep thinking about all the calories it takes to fight off such a serious infection and it makes me worry about the 3 pounds she needs to gain before her upcoming transplant. This will be her longest, most serious hospitalization to date.

Get well, Sweet LuLu.

On a side note, I could cry every time I think of James and Lizzie. They are an amazing team, and
man, do they ever love Jonah and LuLu. They work tirelessly to give London the best care possible, and they go above and beyond to show Jonah that he's not playing second fiddle in their family. They are some of the hardest working, most thoughtful and generous people that I know. It's been inspiring to see them take life's punches with hope and grace intact, and their feet firmly planted side-by-side.


AshleyS said...

Special prayers from California for you guys tonight and every night until LuLu is well and whole.

Annie said...

Oh, that poor sweet baby girl and her sweet parents. So sorry for all that each of you are going through. You're all such fighters. Add our fervent prayers on your behalf to the list of so many others being offered for your family.


Carrie said...

Liz and James,

We are offering prayers for your family and hope that your sweet London will be feeling better and home soon. Please know that we would love to do anything for you guys (I know you have an amazing family) but seriously...if you need the dogs walked or fed, mail checked...you name it. That just doesn't seem to be enough. Prayers, Prayers, Prayers.

Carrie, Nathan and girls

Agnieszka said...

Lulu, we are praying for you, sweet little girl. We can't wait to meet you in person when we are in Utah.

All our love,
Aga, Will and Daria Badger (from North Carolina)

Heather and Kade Scott said...

Liz, I just want you to know that I am thinking of your family right now and Lulu is in our prayers. Love you!

Holly and Mitchie said...

Liz and James,
If there is anything you need at all...dont hesitate!! I know that the Lord is watching over your family very closely right now. We all love you guys very much and you are in my prayers always!!

allieb said...

It just breaks my heart to see your sweet, beautiful lulu in so much pain! James & Liz, I think you guys are so amazing and have been so strong through all of this. Love you and am thinking of you everyday!

Heather Taylor said...

Oh Lizzie, James, and Jonah--
(tears) This brings back so many memories.... one step forward and two steps back--- keep the faith and know that my prayers are with you and your sweet family.... don't give up, I know you won't.
We love you a ton and will do anything we can to help you.
Heather, Will and Isaiah Taylor

Marcae said...

We love you guys and pray that sweet Lulu gets feeling better. I know it's not easy to see your little one suffering and in pain. Know that we are thinking of your sweet family. Hang in there!

Love you!!!

The Van Boerum Family said...

Our prayers are with you guys and send hugs and kisses Lulu's way.

Anonymous said...

I am amazed by your strength and courage. Lulu and your family always on my mind and in my prayers. Much love!

The Hale's said...

We are hoping and praying for all the best for your family! James' grandma is one of Trevor's patients and she was informing him on little LuLu! I am so sorry Liz! Anything you EVER need, please dont hesitate to ask. We are praying for your family and LuLu and I know you are so strong and it will all work out. Love you guys!!

The Christensens said...

We're thinking of you guys and will keep little LuLu in our prayers. Lizzie, my offer to have Jonah come over to play with Paige still stands...anytime! We'd love to help out however we can. Love you guys!


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