The Legend of the Short Gut Wonder!: What Summer's been up to

Here Summer is today (5-16-09) sporting her "lil' nut" shirt and squirrel pants passed on to her from my friend's daughter Morgan...thanks Mel :)

I have been told it has been too long since I have updated this blog, so I am repenting and filling you all in. As you have probably guessed life has been very busy. Spare time is a complete joke and I have to fight my boys to have computer time!

Summer has been doing great! She is still growing great...she now weighs 17 lbs, 2 ounces! That is big enough for her to be on the charts for her actual age...I think it is about the 5th % for a 10 month old and for her corrected age, Summer is well on her way to being on track (corrected to 7 months)...she is in the 25th %.

We have still kept her on 45 ML's per hour continuously through her NG tube, but have been reducing her TPN slowly. Last month Summer was doing so well they decided to cut her TPN hours down to 18 on/6 off. Even with this change...she gained 22 grams per day for that time period!

This last Tuesday was clinic. All went well...they even decided to cut her TPN down to 16 hours on/8 off! Each hour she cuts back on TPN, is about 40 ML's of it going into her system. She is well on her way to getting weaned! :) After clinic I decided to pick up my hubby and give him a ride home. I waited for him for a while until he was ready to go, then we got stuck going in circles in Seattle...once we hit the freeway, we hit the traffic too...it took me about 2 hours from the time I left the hospital to get home...blah! My mom was waiting for me at my house so we could go to Relief Society that night, so I rushed in to change Summer and un-hook her TPN that had finished. When I went to flush the line with saline, Summer winced and cried. I thought that was odd so I pulled out her line to look at it. It seemed fine until I flushed with heparin. Summer cried again and the line burst...blood started coming out through a small hole near the cap end. I grabbed the emergency kit the hospital provided us for this exact situation, wrapped it in gauze, taped it, and clamped it. I changed Summer and back to the car we went.

I made it back to Children's at around 8 PM and went to the ER. We were sent to triage and by around 10:30 we checked into her room...to wait for the glue to dry, again! As you might remember, we did this 3 day stay wait just about a month and a half ago...if her line breaks again, they will have to replace the whole thing surgically....let's pray this doesn't happen! The repair went well and we were out by Thurs. morning. I don't know how we lucked out, but we were in a private room (the same room we had at the end of Dec :) ) so I stayed with her.

While I was there, I ran into some NICU moms I had met a couple of months before. I got to meet one of the babies as he was just released from the NICU and was in a regular room. It is always nice talking to other parents with similar situations...I guess we are part of a NICU mom's club :)

Summer's next clinic visit is in 3 weeks. If all goes well, Dr. Horslen said we could probably cut back to going only once a month :) :) :) I am really looking forward to 8 hours of no IV ! Yeah Summer!

Summer...the camouflaged baby

"What is my sister doing?!" Morgan was playing with Summer and the umbrella...Summer loved it...she was giggling and kicking her feet

Summer has been up to the same mischief...pulling her NG tube out whenever she has the chance!

Morgan and Summer

Look what she can do now!

Summer has been doing physical therapy once a week and improving each time. She is opening her hands more, grabbing for toys, and almost rolling over :)

She loves this play gym my parents got her

My happy girl...she went with me on a field trip to the Science Center with Tom's class

Bumbo baby!

This Bumbo seat is the best thing ever (too expensive tho!!) My sis bought her this on Ebay...it is great! Summer can sit up and play, eat (at least we can try and make her eat, work in progress) and govern over us, as my husband says. He puts her in it, sets her on the table and calls it her judgement seat. She sits and stares down at all of us :)