Wednesday, September 24, 2008

3rd NICU Reunion

Last Saturday was our third NICU reunion. I can't describe how important it is to go to these reunions. I can never adequately thank the talented, dedicated doctors and nurses who worked with Beth every day for those three months. We developed many special relationships with people whom we would never have met under normal circumstances. Despite the difficulty of the first 45 days in the NICU, Mike and I consider it a gift to have met these wonderful people.

These pictures show just a few of the dozens who helped Beth. The two Mercy hospitals in Sacramento see about 500 babies each year; the staff are exceptionally busy. I don't know how they remember us but that is testament to how committed they are to their vocation.

Joan (green shirt) was Beth's primary nurse. The Mercy San Juan NICU assigns a primary nurse to oversee all care. When Beth was in 1:1 care, Joan was the person who sat by her side for an entire 12-hour shift. She watched Mike and I cry giant crocodile tears for hours on end. She has attended Beth's birthday parties and become a special friend. She was the first person I called when Beth ended up back in the hospital just a few weeks after being discharged. She is a quiet, unassuming genius at her job. Mike and I would trust her with our lives. She certainly saved Beth's!

Bree (pink shirt) is another one of the special nurses. She was also assigned to Beth on many of those early days. She is the one who made me hold Beth at 11 days of age when she was still intubated. I was scared to death and not all of the nurses are comfortable making this happen with such a tiny, fragile baby. Bree knew how important it was to get over this hump and she had the glowing confidence to make me know it would be alright. She is generally considered the IV/PIC line specialist. I have seen her place PIC lines and IV's in other babies after other nurses had tried and tried. Bree is the only nurse who could get an IV started in Beth when we were re-admitted that first May. Joan calls Bree a genius but I think they think that of each other...

This is Kathy, the developmental specialist. Kathy saved Beth from developing an oral aversion. She was our champion when trying to get her discharged on breast feeding. She spent hours softly caressing her and teaching us how to hold her arms and legs in the "midline" and mimic the comfort of the womb. Not all babies like to be stroked and Kathy taught us how to see signs of stress, reading Beth's cues for what she needed at any particular time. I am sure that her keen insight and unexplainable "feelings" prevented many of the sensory processing disorders we seemed destined to have.

This is Lori. She was Beth's nurse on the last two days when we were doing our "feeding trial." It was an odd time for them because they don't usually discharge babies who breastfeed. Beth wasn't taking the bottle but she would nurse. It took a lot of commitment to make this happen but Lori really took charge so we could bring our girl home!

These last two guys are respiratory therapists. Randy (with the beard) was the nurse who intubated Beth in the delivery room while chaos reigned. I was bleeding profusely and their was much confusion about how to get me under, get blood, and who knows what else. He stayed cool, did his job and paid attention to Beth. She needed all sorts of things immediately and he did a fabulous job (not that I saw any of it. I just heard about it much later).

The other guy is Simon. He had a twinkle in his eye for Beth from day one. He would tell me that Beth was the poster child for what a 26-weeker should do in the NICU. She did all those scary things that a seasoned pro like he expected and he never wavered, never panicked. He was a rock and I was always certain that Beth would be given delicate, perfect care for her oxygen needs (which for a preemie can mean the difference between vision problems and the perfect vision she seems to have). Joan would tell me that Simon had soft spot for Beth. Too bad she can't remember that! All respiratory therapists will tell you the babies don't like them because they are always being fiddled with in their face. We know the RTs save our babies' lives. Thank you!

Friday, September 19, 2008

Antihistamine Stimulates Appetite

We (maybe I) finally got pushed too far with respect to Beth's abysmal food consumption. Last week I secured a prescription for her to boost her appetite. The drug is actually an antihistamine called Periactin We have discussed this option with Beth's pediatrician many times and each time we have put it off as a "wait and see" approach.

I had to take Elliott to the doctor because he had a bad case of poison oak which was steadily descending down the trunk of his body to more...sensitive parts. I thought it best to nip the thing in the bud before poor Elliott experienced insane itching in his privates. While talking to the doctor, I mentioned that Beth was now 33 inches tall and just 22 pounds. He decided that it was probably time to start the drug.

"Now be careful with her," he told me. "She might be a little sleepy."

...Okay Moms. Do any of you think being "a little sleepy" in a toddler is a bad thing? Do any of you know my toddlers? Heck, sign me up!!

It has been a week and I am only giving her two of the three doses she could have each day. There has been a noticeable improvement in her eating and her willingness to try some other foods. I am hoping that this will help her understand what a hungry tummy means and that sitting in the high chair means that it is time for food, a pleasurable experience rather than the pleading and begging time it has been in the past.

What about her sleepiness? Sadly, I cannot detect any change in her behavior or sleeping pattern (actually I am glad to see no change). Beth has always been a good sleeper and there is no difference in the duration, frequency or degree of her sleep. She was a light sleeper and easily awakened before the Periactin and she is still a light sleeper and easily awakened.

Overall we consider this a good thing. Elliott's poison oak is gone and Beth is actually sitting down and eating food while asking for more. She still gets in a mood where she doesn't want anything but I estimate she is eating 50 percent more than she did before the drug. Yippee!!