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.

Friday, October 23, 2009

3 months, 3 pounds...(posted by Lizzie)

(February 19th, shortly after finding out London's diagnosis of Alpha1)

I had no idea what was ahead of us after receiving the phone call from her dear pediatrician, Doctor Owens. I was alone when I took the call and I was trying so hard to take in her every word-making notes, willing myself to understand what she was saying to me. Not believing this could be true, I waited by the front window for James to get home with Jonah. I was so sad that I had to tell him about this rare genetic disease we'd never heard of before that was now a part of our lives forever. As a mom, all you really hope for is a healthy baby, I thought I had one when she was born. I wondered that night if she would die. I had to think about Jonah possibly being an "Alpha" and not yet symptomatic. I laid with him that night crying and holding him, hoping to God he was alright. I wondered if we'd have more kids like we'd always planned. I still wonder. (for those of you that don't know, Jonah is the 1 in 4 not affected, London is the 1 in 4 that is, the other 2 in 4 is to be a carrier of the disease as James and I both are)

I'll never forget that night as long as I live.

I feel lucky that we were surrounded that evening with both sets of Lulu's grandparents who brought with them such comfort and love. We were all scared. A million questions that needed answers we wouldn't immediately get. We ended this late evening together on our knees, and it was a beautiful prayer.

Fast forward 8 months, a million heartfelt prayers, many appointments at Primary Childrens, more blood draws than I care to remember, a few hospital stays and a very good understanding of A1AT- London has truly "declared" herself ready for a new liver.

I knew her appointment this week would be pivotal. She hadn't been "tolerating" her feeds (i.e. throwing up a lot, often) and had become noticeably smaller and weaker. Her bony little back and arms are hard to look at. It was decided on Wednesday that it was time to start her workup to be put on the UNOS (United Network for Organ Sharing) list. Approximately 25% of liver transplant candidates have to wait for more than five years before receiving a liver and many die while waiting on the list. (Mayo Clinic) PLEASE BE A DONOR IF YOU ARE NOT ALREADY! You may save someones child or a child's mother. You will save someone who is SO important to someone else. That is heroic.

I was also able to start my screening as a living donor for London. I had some preliminary lab work done and we will both continue tests week by week. Dr. Book felt like I'd be a better candidate to start with than James due to our size difference. The smaller the liver, the better for a baby-smaller person=smaller liver. So I will continue on this road unless something disqualifies me. Then James will start at the beginning. I pray I will be a match. Please pray I will be.

Dr. Book thinks it will be about 3 months from now but she HAS to gain about 3 pounds before she could undergo such an operation and recover well. This will be a huge challenge. Meanwhile they changed her feeding tube diet and started her on Prevacid to help with the vomiting and to protect her stomach lining. I must mention that there has been a small MIRACLE at our house...we discovered that London loves Cafe Rio's guacamole! She has had it for breakfast, lunch and dinner the past few days. It is the only thing she will eat (by mouth). This will be on tap at the Badger home. Thank goodness for Cafe Rio, it may be our saving grace to put a little weight on Lulu's dainty frame. Needless to say, she reeks (but in a very, very good way) of garlic and onion!

We have a long road ahead of us, but we will be ready. We can't wait for Lulu to be well. We are so grateful that there are such smart people in this world that will ultimately save her life. Thank you doctors! One day- when this is all behind us, we will tell London all about it and what a fighter she was. I'm sure she always will be.

Thursday, October 15, 2009

little beauty (posted by Lizzie)

Whatta ya know?...Lulu pulled her tube out AS we were walking out the door for pictures. And since it's an unrecognized form of torture and a little time consuming to put it back in- she went sans tube for the following hour. I forget for a moment that she's unhealthy when I see her fully clothed and without her feeding tube. The trickery of my beautiful girl! A big thank you to Jeni Earl who donated her time to photographing London and her entourage.

Thursday, October 8, 2009

10/5/09 Check-Up (Posted by Julia)

Here I go with the paraphrasing and nut-shelling... (Lizzie, feel free to log in and make corrections!).

LuLu just had her Monday checkup with Dr. Book at Primary Children's Hospital. Overall, LuLu's health is declining. Dr. Book said that her little body is telling us she needs her new liver sooner, rather than later. The goal still is to reach her first birthday (December) before the transplant. Her blood draw showed deficiencies in protein, potassium, and sodium. Her feeding regimen was changed from fortified breast milk to a specialized formula to help correct the deficiencies.

London did gain a little bit of weight, but the fluid in her large belly (see below) makes everyone suspicious of progress on the scale. Efforts to fatten her up for her surgery have been in vain. Her failing liver doesn't process nutrients and fats efficiently, so it's extremely hard for her to gain weight.

Overall, LuLu seems to be feeling more and more uncomfortable. There are some days when London will cry for the better part of the day, and her dear, sweet parents don't know why. It could be any one of her various symptoms. Now if she'd just stop pulling her feeding tube out...!! (see below...)

Despite her struggles and discomfort, London is a happy, loving, curious baby. We all love her so very much. Hugs and kisses, Baby Girl!

*Could this picture be ANY cuter? Seriously?

yasmin lawsuit