Surgery Part 4

The last 24 hours..... let's see. We started yesterday off with feeding. She had a little bit of pedilyte, then a little of formula, then we tried some baby food. She had very small portions of each before she was tired of it. Her biggest meal was last night 1.5 oz of formula and 1/2 jar of baby food. This is what we will be working on today, just getting her tummy to handle more food. Her G-tube is ordered to "rack and vent" right now, which makes holding her very difficult. This morning it seemed like she was sick of lying in bed. Yesterday she sat in her bouncy seat for a while, but it basically holds her in the same position as the way she's in bed, which is for the "rack and vent" process. Last night I got a bit more sleep then the night prior, I think i was only up about 5 times, which allowed me to have a series of 2 hour naps in-between interruptions. Much better, but still finding myself sleepy this morning. When Mike arrives I'll go take a nap again at a friends house.

On other news the older children had a soccer game last night. I'm told that our Shiloh played goalie and actually stopped the ball 3 times. This is pretty amazing considering her very feminine nature, and the fact she basically danced around the field hugging all her female teammates up to this point. I can barely picture it happening.

Surgery Part 3

By the way, I'm loving the free WiFi at the hospital.... brilliant! We had a pretty eventful night, there was someone in here at least every hour. The morning sleepiness reminds me of how one feels after having a new born infant who doesn't eat well, minus the sore bottom of course. Aggie got morphine every 2 hours to keep her comfortable. I think today we will start cutting back on that a bit. She is also getting tylenol every 6 hrs. She elected to remover her own NG tube at about 3am, despite my efforts to prevent it with gloves and blankets. It was suppose to come out at 6am so thankfully they left it out. She had her first bottle of pediltye this morning, she took about 1/2 an ounce, and was done with it. I also got to hold her for the first time this morning, I read her a few books and cried. She seemed pretty uncomfortable so I put her back to bed and she fell quickly asleep. I've been very thankful for her temperament, God has been answering our prayers. We were told that when the sedation wore off she would be like a "bear". She did complain on and off between dozing, but definitely not bear like. She's been much more content since the NG was removed, it was gaging her quite a bit and she couldn't have any liquid in her mouth. She has had some moments this morning where she seems like her little self instead of giving the 10 yard stare, she gave me a good morning squeal with her horse little voice. Very sweet. She's not staying awake for very long, just about 5-10 min. at a time. I would prefer she sleep though as much of this yucky part as possible. A friend brought me coffee this morning, and Aggie smiled and waved hi to her, so precious! After Mike arrives today, I'm headed to a friends home who lives close by for a nap. God has been providing for all our our needs!

Surgery Part 2

Obviously we've been reunited with our little doll. As you can see, things aren't so fun for her right now. She has 3 small incisions on her tummy, plus the g-tube site. Then her left thigh has a wound from the muscle biopsy. She is pretty fussy on and off and taking little cat naps between nursing interruptions. She will have her vital signs taken every hour until midnight, then every 4 hrs after that. She is getting IV fluid for nutrition for now. She has a nasogastric (NG) tube in her nose to her tummy on suction to keep her tummy dry, which is suppose to help the healing process. Our main struggle right now is keeping her from pulling at the NG tube and IV, she insists that she is "ahh daaa" (all done). Can you blame her. I put a small glove on her one free hand, it was being the menace to the tubes. The other hand is secured very well to protect her IV. Tomorrow morning the NG will be removed and she will get a bottle of pedilyte, and we'll see how she tolerates that. Diet progression will depend upon it. Well I'm going to catch a 30min. nap before the nurse is back.

Surgery Part 1

Soo..... I'm in the waiting room, Aggie's in surgery currently. It's been a long time coming, on more than one account. Of course there was the cancel and reschedule, but this morning/afternoon was a bit of an adventure as well. Her surgery was scheduled for 830 with a 630 show time. Once we got a chance to speak with the surgeon, we learned that she was planning to do more surgery than we were previously informed of. She told us that Aggies gastric emptying scan showed that her tummy was not emptying at a normal rate and that she wanted to correct that as well. This would mean and "open" surgery opposed to a "laparoscopic" surgery. Which would be an incision from her sternum to her navel. It would also mean 4 days of no eating, and at least 5 days in the hospital. Quite a change from the 24 hr. minimum we were given. Naturally I started asking questions seeking to understand fully the plan. Thankfully the Lord answered our prayers asking for wisdom with the words " last I knew her gastric emptying scan was normal, this is all new information to me, how slow is it emptying?". This prompted the Dr. to request the report so we could go over it. To her surprise and my delight, Aggies gastric emptying scan was normal!! So this means back to the old plan. The only problem was that the hospital only had one set of laparoscopic equipment small enough and it was currently in use. This lead to a wait......... a 7 hr wait. Aggie last ate at midnight, thankfully I woke to feed her a bottle, her last meal if you will. God was so kind to answer our prayers as Aggie was sweet and peaceful most of the time. She did give us a few complaints, but considering she hadn't eaten for 14hrs. she was a gem. Our pastor and his wife came and waited with us during this time through lunch, it was a sweet time of fellowship. So God in His goodness has woven His grace though this day, which has been nothing I would have expected in a day, but with His intricate fingertips all over it.

Nerves

I'm a ball of them. Pray for me. Especially lift up Aggie Rae for her surgery tomorrow. This day has been full of........fullness. Aggie's "well check" this morning. On a positive note her head grew in circumference. She also has developed a healthy fear of medical staff, can you blame the poor girl after all her test and labs, this is sad for sure, but good b/c it is "developmental". Shiloh needed to see the Dr. this afternoon for a "tummy ache" that's been lasting a few weeks that is actually an ear infection..... craziness! My parents are coming tonight to help-out with the children for our time in the hospital, they have really gone out of their way to serve us, such a blessing. We have soccer practice tonight, that should be fun. Then I need to pack Aggie and I's overnight bag for our hospital adventure tomorrow, we need to arrive at 630 am for an 830 am surgery time. Ok...... I need to start dinner, roasted red pepper and gouda soup, yummmmm!

Field Trip

(See the airplane flying under)

One thing we've done while we've been visiting my brothers family is, I took the kids to see the Arch on Friday while the other kiddos where in school. It was a field trip day for us!

Here they are looking out of the top of the Arch.

Here is a little art on the lawn during our picnic, self-initiated by my smart kindergartner.

A little P.E. chasing butterflies.

Looking for purpose in the wrong place.