Buh-Bye "Nose Hose"!!

We're home. I'm so sorry for being out of touch. I did bring my laptop to the hospital, but unfortunately there was no WiFi available! I hope you all didn't lose too much sleep worrying about us!

Friday morning, when we arrived at the hospital, we learned that the #2 case hadn't shown up (we were the #3 slot), so they were bumping us up. We checked in at admissions at 7:55am, and were in the pre op area by about 8:10am! I was thankful not to have to sit the the waiting area for long.

I do have to tell you about the funniest thing EVER-- Magoo on pre-op meds!!! The nurse gave her some medication through the NGTube to "help her relax", and Maggie got downright DRUNK!! She was giggling for no reason, had trouble sitting up straight, and was just overall a funny girl. It was actually nice to have a few moments of levity to balance out my anxiety.

It was hard to hand Maggie over at the OR doors. You all would have been proud, I only cried for a minute! It was a LONG 4 hours in the waiting room. I walked around the gift shop about 18 times. I read PEOPLE magazine. I watched endless hours of Michael Jackson coverage (no comment). The surgical liason called after about 2 hours to let us know that the surgeon reported everything going smoothly. Finally, Dr. Fagelman called from the OR to talk to me. Maggie was still waking up from anesthesia, he said, but everything had gone well.

I entered the PACU to find a wonderful angel of a nurse holding my Peanut. I sat in the rocking chair, and the nurse passed Maggie to me. She opened her eyes, and I think she knew it was me. She slept in my arms on and off, and then we were assigned our room. I was able to carry her up to Pediatrics from the PACU, and we sat in the recliner. The nurse came in and gave Maggie some IV Morphine, which seemed to help a little bit. She would drift in and out of sleep, but I think she was still in a fair amount of pain. My parents came up to see us, and one of the only ways we could distract Maggie was by letting her play with my diet Pepsi bottle (I didn't want to drink it anyway...)

Maggie fell asleep for the night around 10pm. She actually seemed more comfortable lying flat on the crib than in my arms. I felt badly that it took us that long to discover how to make her comfortable! Dan had planned to stay overnight at the hospital, but all of the parent beds were claimed, so he ended up driving home. I settled in for our first night at Hershey. I woke up with a start at about midnight. Maggie was SCREAMING! It was really scary. Anyone that knows Maggie, knows that she really doesn't cry. At all. Ever. She fusses and whines a little when she's tired, but rarely cries. So hearing such a piercing scream from her was really hard for me. I rang for the nurse, who came in with some Tylenol (we had since given up on the Morphine, as it didn't really seem to do anything but make Maggie loopy). When I looked at Maggie's belly, her umbilical incision was puffed up and felt hard. We could see bruising beneath the skin, and it was hot to the touch. The nurse agreed that it wasn't normal, so she paged the resident, who came up to see Maggie right away. He said that we should just keep an eye on it, and since Maggie had fallen to sleep from the Tylenol, he felt that the chance of a real problem was small.

The next morning, Maggie seemed a little better. She sat up in her crib for a few minutes, and I even managed to get half a smile out of her at one point. Over all, I think she was just really worn out and still in pain. We kept her medicated throughout the day, and she was able to sit with me for short periods of time. Auntie Maryann and Uncle Carl came for a visit, and Maggie was happy to see them!

On Saturday night, Dan claimed a parent bed, and planned to use it. They started Maggie's overnight feedings at a very slow rate, and she seemed to tolerate them well. I slept for about an hour, and just as Dan was going to leave the room to go to the parent room, Maggie again woke up screaming in pain. The nurse came in with Tylenol, and again assessed Maggie's belly. Her whole stomach was hard and hot, and we could feel air bubbles beneath her skin near the GTube. The nurse stopped the tube feeding. Despite the Tylenol, Maggie would NOT settle down. Something was clearly wrong. The nurse paged the resident, who came up and ordered a series of xrays (let me tell you, 2am stat xrays are NOT fun). Luckily, the xrays showed no leakage, no obstruction, and no bowel perforation. The resident ordered a laxative to help Maggie, as she hadn't pooped since Wednesday.

Sunday was a better day for Peanut. She began her bottle feedings, and was able to eat about an ounce at a time from the bottle. (We even gave her a first taste of a Hershey's chocolate bar-- seemed appropriate!) She still had intermittent pain, but not as bad as she had during the first 2 nights. She was smiling again, and playing a little bit with her toys. She slept alot of the time, since she was up most of the night. My parents rented a hotel room across the street from the hospital, and I was under STRICT instructions to go over and get some sleep. I was able to rest for about an hour and a half, which helped alot. I was a little jealous of Dan, that he would get to spent the whole night in that comfy king sized bed and a quiet room!! (It would have been wasted on me, though. We all know I wouldn't have been able to sleep away from Magoo!)

Monday morning, we got the okay for discharge. We FINALLY got home yesterday afternoon about 3pm. The medical supply company sent the feeding pump and supplies, and the nurse came to show us how to use it. Maggie was in bed for the night around 10pm, and the tube feeding was pretty easy to set up.

So far, the GTube hasn't been that big of a deal. It's essentially the same as the NGTube, but the formula tends to go in alot faster. We have to be careful that it doesn't go in too fast, or Peanut starts to get uncomfortable. The one difficulty I am having is coordinating the daytime feedings. The nutritionist prescribed a 10 hour overnight feeding via pump, and we are to give Maggie 4 feedings during the day of 4 ounces each. The problem is that she just isn't hungry in the morning, after being fed all night. The pump feeding finishes about 7am, and in order to get all 4 feedings in, I have to start at 8am! Well, she just finished eating an hour before-- of COURSE she's not hungry for another 4 ounces!!! That's been a little frustrating. Maggie hasn't taken ANYTHING by bottle since we got home. She went from taking 2 ounces from the bottle plus about an ounce or 2 of baby food to ABSOLUTELY NOTHING!!! It's hard not to get upset about this slide backwards, even though I knew it was probably going to happen. I know I just need to be patient. At this point, she's only 4 days out from surgery. Hopefully, as her stomach heals and begins to stretch again, her hunger will return, and we can get back on track with eating.

I am home with Maggie for the rest of the week, and I think we're just going to take it easy. Her schedule is completely off from being in the hospital, and I think her body is still tired from surgery. I have taken about a million pictures, now that we can see her face without tape. I promise to post them soon!

Thank you, from the bottom of my heart, for your calls, emails, thoughts, and prayers. I hope this surgery is the beginning of good things for our Miracle Maggie. She sure deserves it!!

~Sara