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
10 hours ago
2 comments:
I hope this isn't too long to post:
The Special Mother
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth, son. Patron saint, Matthew.“Forest, Majorie, daughter. Patron saint, Ceceila.“Rutledge, Carrie, twins. Patron saint… give her Gerard. He’s used to profanity.
Finally, He passes a name to an angel and smiles, “Give her a premature baby.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a premature baby to a mother who does not know laughter? That would be cruel.”
“But does she have patience?” asks the angel.
“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.”
“I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.”God smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn’t realize it yet, but she is to be envied.”
“She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Mommy’ for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.”
“I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”
“And what about her patron saint?” asks the angel, the pen poised in mid-air.
God smiles. ”A mirror will suffice.”
-Adapted from Erma Bombeck
I thought you would like this
What a sweetie pie and a great fighter! I am so happy for your family. Maggie is gorgeous! Thank you for the link, Dan :)
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