The Smell of Rain

This is an essay that a preemie-mom friend of mine sent. I have much to say about our day at the Hershey Feeding Clinic, but I needed to post this first. I hope Maggie knows the smell of rain:

A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature...Still, the doctor's soft words dropped like bombs.“I don't think she's going to make it,” he said, as kindly as he could.“There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one.”

Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived.She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.”No! No!” was all Diana could say. She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four.

Now, within a matter of hours, that dream was slipping away. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love.All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl. There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there.

At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted. Five years later, Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life.She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story. One blistering afternoon in the summer of 1996 near her home in Irving , Texas , Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing.

As always, Dana was chattering nonstop with her mother and several other adults sitting nearby, when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, “Do you smell that?” Smelling the air and detecting the approach of a thunderstorm, Diana replied, “Yes, it smells like rain.”Dana closed her eyes and again asked, “Do you smell that?” Once again, her mother replied, “Yes, I think we're about to get wet. It smells like rain.” Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, “No, it smells like Him.” “It smells like God when you lay your head on His chest.”
Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

~Sara

Busy bee

Our appointment last week with Dr. Bernbaum went very well. In some motor areas, she is delayed (which we got an idea about with the Lankenau folks). But there are some areas where she is excelling. Even at a 6-7 month corrected age, Maggie shows the fine motor control of a baby much older. When the PT put a cheerio in front of Maggie, she used her pincer grasp (finger and thumb) to pick it up, instead of her whole hand. When the PT placed a teacup in front of Maggie, she picked it up by putting her finger through the hole in the handle, instead of the large part of the cup (dainty as ever, I might add!). She's a baby genius!

I talked with Dr. Bernbaum about Maggie's feeding difficulties, and the possibility of a GTube. Dr. B thinks that a GTube may very well be in our future, but is willing to give Maggie another couple of months before we decide. I will call Dr. B after Maggie's birthday, and if it seems that we are still treading water with the feedings and the tube, Maggie will need to get the GTube placed. I felt better after talking to Dr. B about it. I am still hoping we won't need it, but I think I am coming to grips with this very real possibility.

On Thursday, Maggie finally had her endoscopy done. I would like to thank my good friend Emily Chamblin for keeping me company, and not even blinking when I told her we had to be in Philadelphia at 7:30am. When Maggie arrived, the nurses started an IV. Luckily, they got it in on the first try. Maggie was such a trooper! She cried with the tourniquet, and with the initial stick, but other than that, just sort of sat there, and let the nurses work. It was very hard for me to carry her back to the OR. My heart was in my throat. They gave Maggie 3 doses of Versed (the medication that makes us "forget") and Fentanyl (anesthetic). Peanut Face was FAR too interested in her new OR friends and the IV tubing to go to sleep. Finally, after a few minutes, the nurse asked me to step out. Maggie was still awake when I left the room. It was a long 25 minutes before she came out. (I can't imagine if she ever needs REAL surgery for LONGER amounts of time!) She was still awake for a while, and had some major gas pains from the procedure (air gets trapped in the belly). She slept for about an hour, and when she woke up, we tried to feed her. I think her throat was hurting, because she would not suck at all. We tubed the formula, and she tolerated it fine, so they let us go home. We were back in the car by about 11:30am.

Maggie slept the whole way home, and into the afternoon (I think those meds finally caught up with her!) When she woke up, I fed her again, and she ate a little bit. When I finished putting the remainder of the formula through her tube, she vomited quite a bit. She had a fairly difficult time for the rest of the afternoon, struggling with vomiting and gas, but by the evening she seemed back to her old self.

Dr. Kelly showed me the pictures from the endoscopy, and there were a few small areas of inflammation, but nothing significant. She took a few biopsies, which we will get back next week. The biopsies will tell us if Maggie has an allergic process happening, or if there is anything to explain the vomiting. We have an appointment with Dr. Kelly on Thursday of next week, so I guess we'll talk about everything then.

Now for the very best news of all:
Yesterday, for her 8am feeding, Maggie took her WHOLE bottle by herself! Our friend, and babysitter, Lily, said that Maggie took a couple of ounces, burped, and finished off the bottle! It's the first time she's taken a whole bottle in MONTHS! I was thrilled with the news. (Though disappointed I wasn't there to see it...)

We also got an appointment with Hershey Medical Center's feeding clinic for March 16. When the receptionist called, she said, "We have an availability on the 16th." And I said "OF THIS MONTH??" She laughed. So we'll head west and see what they have to say. I feel like we are starting to finally get a plan together! Feedings are much more pleasant around here-- Maggie doesn't fight as much, and seems to look forward to eating. So even though she is still about 85% tube fed, the amounts she does take by mouth are not as much of a struggle. A big victory, in my opinion.

We got the OK from Dr. B to start taking Maggie out! I am so happy to be free! We still can't take her to really crowded places, so church is out. But Dr. B said if I want to walk around the mall with her during a less crowded time, it would be good for both of us! (I AGREE!) So today, Maggie and I are going to check out the new Target that went up near my parents' house.

Good family friends, The Cieslowski's, are visiting from CT this weekend. We went over to my parents house last night for pizza, and Maggie LOVED spending time with Nonnie Linda and Papa Rich! We're all very excited to visit all weekend long!

I'll post pictures soon, I promise! Thanks again for all your well wishes, positive thoughts, and prayers during our very busy last few days!

~Sara