March for Babies

Tuesday, March 17, 2009

This Day in History

Many people will be donning green today to celebrate St. Patrick's Day. We with the name Riley get a little special attention, mostly the question, "Oh, are you really Irish?" To be honest, I do not know the answer to this question. I believe if I had to make a claim, there is more British blood in me than not. But, today, who is counting? Saint Patrick died around 460 A.D. Celebrating his life on this day has evolved from reverence for a Saint to wearing cheap green plastic accessories and drinking green tinted alcohol (All hail the Appletini!). However, in my small nuclear family today is special for more personal reasons.

You will remember that Amanda celebrated her third birthday one month ago today. Three years ago, that was one very rough month. They told me when she was born that if she lived through the first 48-hours we would have a better idea of how she might do. We got that far and then held our breath for the next time limit, and the next. At two weeks she suffered serious breathing issues, even while on the ventilator. They tried solving her trouble through three separate courses of drugs but it didn't work. She needed surgery. Surgery required her to be moved from our hospital to a different hospital up the hill (SO lucky* to live in Grand Rapids!) She was transported (on the vent, with all the monitors in a rolling incubator) up the hill to the huge NICU with the higher tech equipment on March 14 and she had her surgery. Two e-n-d-l-e-s-s days later, she was moved back "home" to "our" NICU. The surgery worked, she started to get better and we were able to breathe a sigh of relative relief.

On March 17 of 2006 I tried to convince Daddy to go to a concert he had been thinking about. The band Seven Dust was in town and I knew it would be a good break for him. A bit of a stress reliever. He decided what he really wanted was to visit Amanda with me that night. He made the right choice. That evening on her one month birthday, he was able to hold her for the first time. Coming from a family of three boys and having never been around a baby before, much less a tiny fragile preemie girl hooked up to tubes and wires all over the place, he was incredibly nervous, but ecstatic at the same time. After the drama and trauma of the month preceding, we were able to huddle together as a family and smile. Two days later, she moved from the ventilator to the CPAP machine. This was a major improvement which would not have been possible without the surgery.

Daddy's First Hold

Daddy's Girl

Today, after more drama and much more trauma, we consider ourselves VERY lucky*.

*Luck o' the Irish?

Tuesday, March 10, 2009

It has been brought to my attention (thanks Steve) that I have not updated things in a while. This was not intentional, nor desirable, just the way things have turned out. When one has a three-year-old who is feeling better than she has in a while and is regaining a bit of freedom from constant visits to the clinic, one has less free time with which to write. I have composed many drafts in my mind but, sadly, they have not made it into the computer and will probably be forgotten before I press the "Publish Post" button.

To catch up: Amanda had her last week of chemo at the end of February. She got through the week fairly well. She was not getting her naps in as we would have hoped and had trouble sleeping at night which left her (and us) cranky. The following week she proved her numbers high enough that we could terminate the Neupogen shots she had been getting to boost her immune system. This means "No Pokes"! We have shouted that now and then throughout this experience but this time is different. This time it means, NO MORE POKES...ALL DONE POKES...MOMMY DOESN'T HAVE TO POKE AMANDA ANYMORE...YAY! This makes us ALL happy campers. The idea has not sunk in for our girl yet however since when she sees both Mommy and Daddy in the room at jammy time she whimpers, "Really quick", and we have to assure her that we will not be holding her down and jabbing her with a sharp needle.

You may recall that shortly before her birthday I mentioned her flying leap off the top of the slide at the "indoor playground" which is the play area at the local mall. My dear dear friend (I will leave out the "online friend" adjective, even though we have never met in real life we have been friends via the Internet for 7 or 8 years now) sent a belated birthday gift for Amanda. My description of Super Panda must have been quite inspiring as you can see below. The shield has the initial A in the middle and says "Super Manda". She has worn the cape to the clinic and pictures of her in it have been sent to the clinic and pharmacy staff who are all celebrating the end of her treatments.

Super Manda

Super Meow

"Poof!" with her magic wand

Mommy could use some magic to get her sleeping schedule back on track which *crossing fingers* should improve her mood a bit. Next challenge, getting her to wear her glasses again without a fight. We did it once, we can do it again.

They have scheduled another CT Scan and hearing test which will be the start of her every three months monitoring. If the cancer comes back it is most likely to happen in the next two years. We will watch very closely so in the event it does recur we can catch it early and start treatments again right away.

Oh, and on a side note; we are putting our DNA where our mouths are. Or rather, our mouths donated DNA for a study being conducted on Hepatoblastoma Origins & Pediatric Epidemiology (HOPE) which is investigating the link between low birth-weight babies and the specific type of cancer Manda had. (Hee hee, notice the past tense in that sentence?) We cannot continue to shout the praises of medical research saving our baby's life if we do not in turn participate in research that may save someone else's (or many other people's) babies.

She is calling to me now, reminding me it is time to get her up so we can start our Tuesday.