Solid Foods

Before Clara got sick, my biggest worry (as noted in my last blog post prior to her diagnosis) was having to introduce solids.  It was a sign that my "newborn" - become "infant" - become "baby" was growing up.  I wouldn't have even claimed that breastfeeding is the most wonderful thing in the world - although it is now something I cherish. I just didn't want her to grow up and move past the breastfeeding stage.  Plus, breastfeeding is free, and virtually mess free since Clara wasn't a spitter upper.

Now, here we are.  She is 6 months old and I can't hold out any longer.  The bigger problem?  I can hardly get her to eat at the breast, she has a tube stuck in her nose to force feed her, and I am supposed to be introducing solids!?!?  I can't even find the time to play with her most days because she is either nauseous or tired or attached to her IV (which makes it hard to have tummy time or encourage her to sit up or roll over around this IV line).

Fortunately, she is continuing to advance developmentally - particularly with her fine motor skills. When she pulled off the breast the other day and tried to instead grab my nipple and put it in her mouth, I knew she was more than ready to start solids.

So that is one of our new daily dilemmas - is she in a good enough mood and feeling up to "playing"? AND should we spend this one lone period working on gross motor skills or solid foods?

We tend to alternate days.  One day it is rice cereal and the next it is playtime.  Since today was focused on family fun, we will do solids tomorrow!

Clara Gained Weight!

The biggest news is that Clara has gained weight!  She is now 6.314 kg = 13 lbs and 14.5 oz! 

And for once, it doesn't seem to be fluid overload of her tissues.  Granted, her weight can greatly fluctuate dependent upon whether or not she has just had one of her massive pees or poops or has one yet to come, but this is the most she has weighed since her admittance. 

To give you an understanding of the significance: Clara's weight has fluctuated right around 6 kg which was roughly 50th percentile when she was admitted at 4 months old.  But now that she is 6 months old, 6 kg puts her in the 0th(!) percentile. Her appetite has fluctuated severely over the course of our being here and after her PICU visit and this last round of chemo she had to re-learn how to breastfeed.  Even when she seems like she is eating really well, it only lasts for a day or two - and still isn't close to the number of ounces she is supposed to have in a day.  Even more important, she needs even more calories than a well baby to be able to repair her body from the chemo. 

So this was HUGE news of success after two months of feeding her at the breast, through her NG tube, continuous feeds from a pump through her NG tube at night, AND having introduced solids last week (which are unfortunately not enough to count as caloric intake yet) all in an effort to help her gain weight. 

WE (and she) DID IT!

$1,154,192.76

Wow, folks! I just checked our insurance portal and we just passed the million dollar mark. I thought that this would be a good time to post how thankful we are to have such a good insurance policy (and I know some were concerned about the cost). As long as everything goes as we think that it is going to go, we will only owe $250 at the end of this. I feel for those in similar situations having to figure out how to deal with the financial burden on top of the already emotionally tiring situation.

On the eating front

Clara has been having some trouble with her eating. She has been mostly on an NG tube and was getting scheduled feeds of Brooke's milk.  Unfortunately though Brooke's frozen supply ran short this week and the doctors wanted to add formula into the mix to help her get the calories that she needs. The big concern is that Clara has to burn a lot of calories just dealing with the effects of the chemo, not to mention her caloric need to sustain regular growth.

So the night that they started the formula, she was already a little swollen again (this is what sent us to the PICU last time). She continued to get more fluid overloaded that night and the next day she looked particularly hefty. Of course, we didn't want to keep feeding her because she looked like her stomach was going to pop. She seemed really uncomfortable and was laying down with her belly arched out all day. Until finally she peed. She peed ~120grams in about 10 minutes. That is 2% of her body weight, which for your typical 150lb person is 3lbs of pee (this is really an unrealistic extrapolation).

Right around this time they decided to take out her NG and see if she could continue to gain weight without the forced feeds. Of course, she lost some weight from the fluid overload and also lost some weight because she needed to remember how to breast feed. She also was about 12 hours late yesterday for her red blood cell transfusion so she ended up sleeping all day without eating. All in all she lost about .1kg over 2 days so the doctors want to put her back on the NG tonight. Brooke is upset over this (even though she knows it is necessary) because feeding is one of the few things that she and Clara have control over.

Finally on the feeding story, Clara is ready to start solid foods. Her throat and mouth are mostly recovered from the last round of chemo so swallowing should be less painful now. We were hoping to do it without the NG tube, but will have to deal with that discomfort still. Hopefully we will have a post soon with her first attempt.

And finally, a picture from right now as I type this out in the atrium of the hospital! Brooke and Debbie (Brooke's mom) are looking at the camera, but Clara is smiling at her daddy!

Changes

It's hard to post after such a long silence.  And I know that there are so so very many of you who are anxiously awaiting a new post.  And from what I hear...you want one with pictures!  We have been taking pictures...knowing that I would one day soon get back onto the computer and be able to update you on what has happened recently.  It's been so long now that I have a hard time knowing what to say or how to introduce it.  And I'm so very tired that it's hard to know what I want to tell you first - much less organize my thoughts into paragraphs comprised of complete, well thought out sentences.  Instead, here you are, getting a very rambling, stream-of-consciousness post about how I don't know what to say.  What you don't see are the extreme pauses as I try to figure out what I am trying to say....

I think that's enough about that.

For now, what you really care about - pictures of Clara (and a few captions to help update you about the significance of each snapshot).

Just a funny moment with her telephone mustachio.

Fell asleep playing with her two favorite toys.

Another angle.

Her favorite sleeping position since she was a newborn with her bunny thumbie. This was the first time that she slept like this since the PICU.

We frequently take walks and show Clara the flowers in the atrium in the center of the hospital.

The halls in the hospital have all sorts of art. This is a multicolored "ribbon" made out of 1000 paper cranes.

A flower from what we call the "Clara" tree given her middle name. It has these big violet flowers that have been blooming since we got here.

Sitting with mommy after having her arm IV disconnected for the first time and wearing a new outfit courtesy of Mimi (Brooke's mom)

Sleeping baby wearing an outfit from dear friends Nick & Katherine Goodman and being protected from grabbing her lines with a burp cloth from Godmother Kelli Davis.

A Little Good News

We got some good news today. The news is that Clara has a lot of 10/10 potential matches from the initial search for a bone marrow match. She also had a lot of 6/6 matches in the cord blood bank. Those would be perfect matches (pending further testing and a more formal search). The doctor involved said that she hadn't seen that many matches on an initial screening before. So this means that they are very confident for a perfect match for Clara and actually think that they will be able to be picky and select for other favorable factors including an apparent preference to the donor being male and young.

I will be posting a more detailed post tomorrow with details from the conversation with the stem cell transplant group. Brooke also assures me that she will soon have some time to make some posts and include some newer pictures. In the meantime, I have included a picture of me taking Clara for a walk in the courtyard in the center of the hospital. She is wearing a dress made for her by one of Brooke's friends (who was a desk assistant in Brooke's dorm when Brooke was senior RA) who has started a company making baby clothes called "Katie Bug Designs".

Sleeping (and lack thereof)

Scenario for you parents: You have finally gotten your baby to fall asleep after a particularly restless night. You crawl into bed completely exhausted. Then, just as you have lost consciousness, someone walks in and wakes up your baby.

This happens every night. The best nights are those where it only happens twice.

The reason is that Clara has to have her vitals taken every four hours. This process includes temp (this is easy), O2/pulse (also pretty easy), and blood pressure... Blood pressure is loud and causes Clara to wake up. This is even more of a problem now that she isn't on any pain/nausea meds that make her sleepy. She is very easily woken by someone prodding at her.

So every four hours at night: 8pm, midnight, 4am - all when Clara should be asleep. Plus 10pm for chemo, 2am blood draw, and other various awakenings.

Saturday night was pretty close to our breaking point. Brooke is nearly crazy with the lack of more than four hours of continuous sleep. So we came up with our plan: we laid out a wonderful argument as to why taking blood pressure in the middle of the night was not helpful. The main point being that they wake her up and she starts to scream which causes wacky blood pressure readings.

So the next morning we start our negotiation process. We asked for more than we thought reasonable so that we could back down to just getting rid of blood pressure readings:

US: "Can we drop the midnight vitals?"
Doc: "Yep"

Wow, that was easy! Why didn't we do this a few weeks ago? On to a better nights sleep!