If Only

http://www.telly.com/AND2B?fromtwitvid=1


I LOVE this song. Along with liking the song so much, the message goes along with much of what I have been feeling lately.
I will admit that I have been struggling with "what" I am; what my role is in this life. Before I go on, I will remind you that I consider it a privelege to be able to take care of my three children. I also consider the messy, difficult, taxing role of caring for Elizabeth a huge privilege!
Having said that, candidly I will also share that at times I feel "if only." If only I could be contributing more to the family or if only I could work, then we would be able to take vacations, buy luxury items, not stress so much about medical bills.
If only Liz wasn't sick. If only my husband didn't work so very hard and yet we are in a constant state of drowning in medical debt. If only life had gone according to my plans. If only I knew that things would turn out alright in the ways we want. So many if only's.
We all have them, don't we?

Last night, as Walter and I had some quiet time to talk (if you have a mental picture of us cuddled and talking in whispers or sharing a glass of wine and having deep conversation, throw that out. I was watering when he drove up from being at work and we stole a few minutes alone to talk as I threatened to hose-down any child that got in the way of our conversation : )  ), I told him
"This is what I am supposed to be doing. I am supposed to be taking care of Jackson and Kate. And, I am meant to take care of Elizabeth during this time - nurse her back to health, get her through this horrible time; help her get through school, help her to get strong- so that she can be the best person she can be when she is older. So that she can be the person she is meant to be."

Life can rock us to the core- all of us. It can try and strip away security, comfort, health, plans.....
but if we try hard, if I try hard, and stop focusing on the "if only's", it won't take away who I am meant to be. Which for now may be a struggling, tired mom. That is alright, because I am rich in so many other ways and I know that I am doing exactly what I should be right now; exactly what I am meant to be.


{Some people are so poor all they have is money.
Diamonds, some people waste their life counting their thousands.
They can't afford what we've got, not even the kings.
I found the world in you.
Your arms around me are worth more than a kingdom.
The trust that we feel, the kings never felt that. They can't afford this; this is priceless.
They can't afford what we've got, not even the kings.}

Don't Say First Day

Elizabeth was discharged from the hospital late Monday afternoon. Yay! We are always so happy to come home to our loves and to be away from the hospital. She'll follow up with all of her specialists in the next two weeks and she'll get blood counts again soon to make sure her counts have come up some.
Liz is doing pretty well. She is having some bleeding from her stoma, so we will go to the doctor tomorrow to get it looked at. Last night she woke up in pain, but she never lets her pain get in the way of what she wants to do........
which today means attempting her first day of middle school! She is half crazy, half stubbornly resilient, and she insisted on going to school just like everyone else. I knew I needed to let her attempt the day because we have no idea what this year will bring. If she is not able to fight infections or if she is too sick, she'll be forced to stay home again this year like she did all of last year.
I have been crying for the last two hours since I dropped off the kids at school because I am so worried about Liz. We have been together, literally, all of the time for over a year. My gut says she is not ready for school today as she is still recovering, her counts aren't great, and her stamina isn't there, but for her emotional and mental well being we had to let her try.
Jackson and Kaitlin were happy to walk into school this morning. How in the world can I have children of my own who are old enough for middle school?! It just seems impossible. I pray the girls have a great experience and make lifelong friends in these middle school years, just as I did.
Jackson started Kindergarten! How sad that for the first time in seven years, I will have an empty home during the day now that all three are in school.

Here's to a wonderful, happy year of learning and firsts. As Travis said when he was little, and we continue to say now, "Don't say first day!"

First day of Kindergarten and first day of 6th grade.
Jackson- 6  Liz and Kate-11

Look how they've grown. This was last year.

My beautiful, hard working, pleasing, kind Kate.

Jackson's teacher is amazing (!!!) and happens to be our neighbor,
He is hilarious and told us "I don't think having my neighbor for my teacher is such a good idea".
He is totally prepared for Kinder and is going to have a great year!

My shadow for the last year is attempting to leave me and have the normalcy of
school that she deserves. She is an example to us all of never making excuses, practicing mind-over-matter,
 and believing that strength comes from within.

The girls have always been in class together. This year they will separate for the first time.

Jackson and Taylor are at  the same school and in the same class!
I just kept telling him "Do not hit your cousin at school!!!"

Update

Lizzie is doing well! She has had some bumps over the last two days, so she is still in the hospital, but overall we think she is doing well.
I could go over all the medical talk and things that have hindered her going home, but I will keep this post light and blog with photos of the positives.....

Thursday night Liz started with a distended belly. Surgery was called in around 10:00pm, and it made for another long night
She finally was able to get some rest and looked peaceful.

Liz has a history of post-op pneumonia, so she worked hard this time to expand her lungs.

Walking helps keep her lungs healthy, too.

Liz has wanted privacy this hospital stay, and I have to respect that and restrict visitors. We did
enjoy having Alyssa, Juliette and Makayla here yesterday morning, though. Many of you know of Alyssa and how she was
beyond very sick for a long time. Now look at her- she is amazing!! She's also sassy, hilarious, and a great cuddler.

Liz graduated to jello this morning! Finally! The poor thing has to gain back the weight she's lost this week( she lost a pound overnight, alone), on top of what she needs to gain overall. Thankfully, the g-tube will help her do that!

Lizzie's friend Maryam is inpatient right now, too. She is in the room next door and those cuties knock in code on the wall that is behind each of their beds. This knock was to ask Maryam to escape the Unit and walk outside....

........look at them peering and planning their escape

.......run girls, run!! Karen (Maryam's mom) and I couldn't stop laughing at our girls and their "old lady" strolls as they
pushed their poles and made a break for freedom.

Ahhhh, fresh air for the first time in a week and a visit to the koi pond.

Liz is doing a great job in here. It was disappointing to have setbacks an to still be inpatient, but I am greatful to know that we are over the most difficult parts of this stay and headed home soon.
Ooooo.... one more positive- I have quit soda while in here!! It was seriously a detox, and my head hates me for it, but I figured if Liz can endure her suffering, surely I can motivate myself to give up Coke. I did it, and I am not going back. Yay!

Post Surgery

For those who are wondering about Elizabeth's surgery......

Most importantly, she did well during surgery and Dr. N was able to perform the surgery laparoscopically. Both of those things are what we prayed for most, and we are grateful. Surgery took a little over two hours, as Liz has tons of scar tissue from all of her previous surgeries, so Dr. N. had to take a lot of time cutting away and making the stomach accessible for placement of the G-tube. Dr. N. was dedicated to taking as much time as he needed to getting through the scar tissue in hopes that he wouldn't have to do an "open" incision (along her scar line from her last open surgery). So great that we avoided that!! Liz was nervous for surgery of course, but she trusts Dr. N. literally with her life and as soon as he came to see her and gave hugs and assurance in pre-op, she became more comfortable.

Last night was loooong! Elizabeth didn't fall asleep until 4:45 this morning and only slept two hours after falling asleep. She was horribly nauseous and in so much pain all night. Finally now, 32hours after surgery, she seems more comfortable and we are hopeful that tonight will be much better. I'll cry if she suffers again tonight. I was exhausted and worried last night as she endured the pain, and I was devastated as she cried that she was mad at me for allowing her to have surgery in the first place, but so much more than all of that, I felt just so privileged to be able to care for my sweet girl in her hardest times. Such a privilege!

We are encouraging her to cough and blow bubbles as well as use the spirometer, as Liz has a history of post-surgery pneumonia. Getting out of bed to walk more is our next goal for tonight. I asked for her last dose of pain medication given an hour ago to be Tylenol with codeine instead of Morphine so that she can work towards home in that regard too.
She has not had anything by mouth since Tuesday, and only had liquids on Monday, so tomorrow we will allow her to have a few sips of water and then the GI team will start using her G-tube, first putting only Pedialyte into her stomach, and then advancing to formula feeds once she proves she can tolerate feeds.
Tomorrow Walter and I will begin G-tube feeding teaching here with the Clinical Nurse Specialist. We'll be taught by her and then a home health nurse will teach us how to use the pump that Liz will use at home, once we get there.

Cannot express enough how my Elizabeth amazes me with her strength. She has coping skills and strength that proves over and over how she can get through anything. One day at a time, keeping her eye on getting well.

Grateful for your prayers and encouragement.


Pictures below...... warning, last two are a bit graphic.

I carry this image with me each time I leave my baby in the hands of her surgeon.

In Pre-op, after hugs from Dr. N., and beating me in a game of Ipad checkers!

Three holes and the G-tube.... Dr. N used two existing scars/surgery sites during this surgery to spare
adding many more scars to the 13 she has already on her tummy. In these first days, the tube is draining into a bag.

Her tube is draining bile/stomach juices now, but after recovery it will be used for feeding. Liz will be fed at night, and in the morning I will detach the tube and she'll just have the "button" (the white part) in.

It is Time....

"Mom, I think it is time for the G-tube. I can see how it is going to make me stronger."

Liz just said these words to me as I was "making" my chair bed for the night. A half hour earlier, our friend from Child Life came by to talk to Elizabeth about the G-tube, heading to the OR tomorrow, and shared a YouTube video of a 14 year old girl who talked about life with a tube.
Our girl is so very smart and aware of her body, and she knows it is time to do this in order to get stronger, and maybe even much better in terms of her bone marrow, cells and ability to fight infection. Today I had further confirmation that this is the right choice, as her Prealbumin is now the lowest it has ever been. Her body needs the nutritional support that only the tube can safely give Liz at this time. Severe failure to thrive is a tough diagnosis to see for your child.

It is important to me that Liz always feels informed.  I don't sugarcoat things and I have always been honest with her about her health or things that her care team wants to do to her. I respect that some parents don't share the same with their "sick" kids, but for me, it is what has always felt right; I just want her to feel as in control as possible, and informed and involved.

Last night Liz actually slept well. She didn't start needing to, um, run to the bathroom until 7:30am. She has been going through the clean out process all day, but it seems to be more gentle than other clean outs have been and she is not as uncomfortable as some times in the past- definitely a tender mercy.
At 11:00 pm, she will get xrays done to confirm that she is cleaned out enough for surgery. Her GoLytly will run until midnight, a full 24+ hours of clean out for poor Liz's bum and gut. She is amazing and has done such a great job.

If her impaction has cleared, surgery is a go for tomorrow. She is the fourth case for her surgeon, so she should have an OR slot in the afternoon, we will hear the time later tonight.
Elizabeth's platelet count has dropped and so she'll have her counts done tomorrow morning to check again. The surgery team said that they are more comfortable having blood ready for her in the OR, too, so that will be available in case it is needed. I was very upset today because I didn't donate blood to bank for Liz last week. I have always donated blood (Meg and and Charnold have too) for Liz before her surgeries, just in case it was needed. I am losing my mind and didn't even think about doing it last week. I couldn't donate for her today because it is a three day process. I seriously messed up.

I am a bit nervous about the surgery because it was explained to me again today that her surgeon may not be able to place the G-tube laparoscopically. Because of all of her previous surgeries, she has tons of scar tissue and her stomach has been manipulated so many times that she is kind of a mess. Dr. N will try his best to do the least invasive approach, but if he feels it is safer and necessary, he will open her and place the tube that way. It would be a more difficult recovery, so we are praying for the laparscopic approach.

Walter is off tomorrow and will be here with us. Jackson has his Kindergarten orientation and I am sad to miss that with him, but Walt will try to be there and if he cannot, my sister will attend on our behalf with our big Kinder boy.

Tonight I am proud of Liz and myself. The last years of this difficult stuff has made us a good team and we remind each other to hang in there and focus on just getting her through each tough day and closer to home. She can do this. We can do this.
Liz is right, it is time. Please hold her in your prayers tomorrow.

Lola is a favorite visitor for Liz! She came by yesterday as we were getting settled into our room/

Liz got her own cell phone as a reward of sorts. She and Kate have shared one, but given that Liz didn't go to school or to a practice of any kind last year, Kate had the phone the majority of the time.

Laurel, the amazing music therapist here, came by to play and sing with Liz today. I am always impressed at how Liz remembers to play even though she doesn't practice in between hospital stays. Playing with an IV in is impressive too : ) Laurel's sarcasm and sweetness reminds us of Kate, so it is always fun to hang with her in here.

Hospital Day One

Monday, not-so-fun-day. Liz was admitted at noon today. In typical ridiculous hospital time, it is now almost 11:00pm, and she is just starting the solution that will get her to start clean out. Ridiculous.

Liz objected to the NG tube, and tried a few times to hide her nose when the nurses came in to put the tube down her nose and into her stomach, but she got it done and I am so proud of her. After telling Dr. L that she was angry at her and at me for "doing this to her." I know I have said before how amazing Dr. L is, and I wish in some way she could know how highly I speak of her; she is just so intent on getting Liz well. She came in to see Liz late this afternoon, and as soon as she walked in the door she said " I think people need some hugs. I know I could use a hug." She then spoke candidly to Liz about how much this whole situation sucks.
After getting the NG put in, Liz told me "I knew I needed this tube. I knew I couldn't do the clean out at home as well as the tube can, I just didn't want to say it because I wanted to wait to have to do this."
She is so stinkin' smart and knows her body so well.

An hour ago she had an abdominal xray to get a look at how much stool is impacted now and she also had an xray of her ankle. Say what?!
Yesterday at the pool, she hit her ankle on the water slide. She has complained since then about it, but I will admit that I boo-hoo'd it. By the time we got to the hospital today though, her ankle is black and blue and super swollen. It is bad enough for the doctors to want an x-ray....and bad enough for me to look a little bad because I didn't ice it or worry about it at all. : (

So, day one is almost done, and the difficult part of getting the NG tube in is over with.
It will be a looooong night though as our poor girl rids her body of all of the stool that is impacted. The whole process is ten times more uncomfortable as you can imagine it is. Liz just has to keep calm, endure the cramping and constant stooling, and keep her mind on the fact that 24 hours from now this part will be over and she will be ready for surgery.

And Yet,

Many days if you look at Liz, you wouldn't know she is sick. Some days she doesn't feel sick. Most people would never guess she has ever been sick. And yet, she is. Gratefully many days she can run and play with friends and her siblings. Gratefully she has her sight, hearing and mobility. She is smart, full of life and loves to dream of a future as a dancer and designer living in Paris. And yet, her health over the last two years especially has gotten in the way of many of these things. Liz hasn't attended the ballet academy in two years. She needs to sit and rest during times she is outside playing with her sister or best friends. School was not possible at all last year, and questionable for this year. It is part of our daily life, but we move forward each day without dwelling; thinking she will get better. The days she feels good and even great make all that she has missed or had to endure seem almost surreal. And yet, her labs, chronic infections and procedure results tell the story of how her body is unwell. Yesterday we saw Liz's Hem/Onc doctor and his recommendation is that we take Liz to a hospital like the Mayo Clinic so that teams of doctors from different specialties can take a comprehensive approach and all come together to try to find a diagnosis for her. He has called her Pediatrician and asked Dr. L to help us find that place. On Monday Liz will be admited to the hospital here. Shell have the NG tube put into her nose and down into her stomach so that a large volume of mag citrate can be administered and induce a clean out. My poor baby. It is awful to place that tube down her nose and the clean out makes her run to the bathroom every few minute for hours. I hate that we have to go this again. On Wednesday, the plan ( I say plan because things seem to always change when the OR is involved) is to take Liz to the Operating Room and surgically place the G-tube. Most often, GI docs place Gtubes using endoscopy, but Liz is so scarred from all her surgeries and her stomach is so manipulated, that it is best a surgeon open her and place the gtube. Liz is actually happy about this because she only wants her lifelong surgeon touching her, she says. Well alright then Miss Elizabeth! Hopefully in the next two months, Childrens Hospital Los Angeles or Children's of Boston will have an opening for the manometry studies she needs done. We will go to whichever hospital has the first opening. That will be the next hospital admittance and it will be an uncomfortable and difficult week. I will update more before Monday. Please pray for now for our Lizzie's mind. She is weary and tired, scared and mad. This is all so much for a little girl and we worry about her. I just keep asking her to please trust me and my decisions; trust that I trying so hard to make her better. I remind her that I choosing the best doctors and choices I can, and I am praying for guidance and wisdom from the ultimate healer. Thank you for caring about our brave girl. Excuse typos. Written on my phone.