Time for a tune up

Happy New Year!

This week we have started our year off with a bit of a hiccup. Tues. Dec. 30th Summer had her usual clinic appointments at Children's. She had been having a few issues we have been watching lately....her white count had been elevated, though all the cultures they took never grew anything, and some of her other labs were off a bit. She also hadn't gained any weight for about 3 weeks and they were perplexed as to why this would be. Well, this week's appt. revealed very low protein levels, low electrolytes, low sodium, low potassium, just to name a few. The doc was concerned she would become very ill so admitted her to the hospital to figure out what was going on.

We are still here and in the past few days, she has gained over 13 ounces! Summer has been taking in 30 ML's of breast milk per hour in her NG tube and an additional 20 ML's 4 times a day by bottle or breastfeeding. She has always had very wet diapers and her other poop (for lack of a better word!) has been very frequent and watery. This has made every diaper change a duck and cover operation...I have been not so lucky as to dodge a few! We thought this was normal for a short gut kid, well it is, but it has become too excessive and has caused her to get dehydrated and throw off her body chemistry.

When she first arrived, they pumped her full of lots of extra fluid and gave her Albumin (protein) to get her body re hydrated. They stopped her milk intake yesterday and kept her from eating anything through her mouth or NG tube until today. Her body has balanced out and all the labs are looking greatly improved :) With the extra fluid, and a blood transfusion to combat her anemia, she put on a lot of weight. She now weighs about 9 pounds 15 ounces!

During all this, however, her liver function has improved. Her Bilirubin is now down to 0.6! Yes, the decimal is in the right place :) After the blood transfusion was complete, Summer was pinker than she has ever been ! So, fat and pink....thanks Santa! I got my Christmas wish after all...well, for New Year's :)

They have started feeding her again with formula first. They are starting with only 10 ML's per hour and bumping it up 5 ML's an hour every 6 hours. She may not be able to take breast milk anymore, but we will wait and see what happens. I guess it is a good thing my freezer is not a full as it used to be! She definitely benefited from it for the past 4 months....

As a bonus for having to put her back in the hospital (if there is such a thing) we were able to get an echo cardiogram done today to check her pulmonary hypertension. Summer had an appt. a week and a half ago with the pulmonary team and they said after confirmed with an echo that her hypertension was resolved, we would be able to start weaning her oxygen. I am hoping we get good news here because they could monitor her off the oxygen much easier than I could at home. It could be a much shorter process :) Think healthy lung thoughts.....

The docs say this is just a "tune up" and we will be moving forward again....Hopefully we will get to bring Summer home in a few days....

Let it Snow!!

One solitary icecicle hangs from our porch...I haven't seen one of these for a few years

This winter it has actually snowed in Washington! We are lucky to have one day of snow each Winter...if we don't hurry and run out to play, the rain shows up and melts it all the next day. We have had temps in the 20's and it has been snowing for the last few days. I went out at 1 and took some cool pictures of our lights in the snow before anyone walked in it. The wind blew snow on the wreaths on our door and garage...it is really pretty. Too bad when Washington looks like this, the whole city shuts down! The kids had delayed start days last week and ended getting an extra two days off when the schools closed.

Morgan looks just like "Hant Debbie", when she was a little girl, in this picture!

Tom taught Morgan how to throw snowballs...he'll be sorry!

Andrew, Morgan, and Tom had fun in the snow

Andrew and Tom pose by Tom's wall of snow

Yes, you do have to let me take a picture! These poor kids are always followed around by a camera :)
Tom made this tiny snowman in our front yard

Christmas lights always look cool in the snow...my dad and I hung the lights together this year, it's the most lights we've had up for the past few years...we picked the right year to do it :)

The view from Summer's room...I like to sit in the rocking chair with her and look at the lights
It snowed even more last night

Our cars almost got buried in the snow

Even our Jack in the Box antenna ball sports a snowy look

Christmas is coming...

Tom and Andrew made gingerbread houses to display at home :)

Tom's gingerbread house he made in Webelos. They spent 3 sessions making these very elaborate houses...they made the house from scratch! The gingerbread men are having a "snowbomb" fight....and a chocolate Santa is falling off the roof. Tom had a blast making this.

Andrew made this gingerbread house at school. He is very proud of it. He said it was a lot easier to make since they used graham creackers and a milk carton.

The kids show off their new ornaments...every year we buy an ornament for each person in our family that represents something fromt the year. Andrew loves Pokemon and wanted to name one of the babies Squirtel...we got him a Squirtel ornament. Morgan loves Dora everything...she has a Dora ornament. Little Tom has had a huge increase in his appetite this year and tries to eat at least 3 McChickens every time we go to McDonalds...we got him a Spongebob ornament with a bag full of Crabby Patties. Summer has been our little angel...I got her an ornament from the hospital gift shop that is called Bright Star, reflecting the light within....very appropriate :)

My friends, Bridget and Cathy hang out with Summer at our ward Christmas party
Summer's first cuddle with Santa
Summer was the only kid we could get to get near Santa this year....hmmm, maybe no presents for them....ha ha!

Our little pinkish girl!

Here she is...check out her pink piggies :)
Summer is doing great! As of last week, she weighs in at 9 pounds, 7 ounces and just over 21 inches long....she has finally reached Morgan's birth weight and height! She is now 5 months old :) All of Summer's labs keep improving too...last week her bilirubin was 3 and now is it down to 2.2 ! As you can see from these pictures, she is starting to look and act more like a healthy, happy baby :) Tues. she had her follow up eye exam, all looks well so far and we will re-check her in 4 months. This coming Tues. she has an appt. with the pulminary team....cross your fingers for us that she gets cleared for healthy lungs and we can get rid of her oxygen tank! More updates will folow next week....for now, check out her cuteness :)

Yellow ducks finally look cute on her...they no longer blend in with her skin :)

Check out her developing rolls....her legs are still a little scrawny, but the rolls are coming!

Giving Thanks

Brianna and Summer bonding at Thanksgiving

This year has been a rocky toad...to state it lightly! With the last month of having Summer home we have been reflecting on things we are thankful for.

I am thankful to all those many (many, many) people in our lives who have helped us make it through....friends, family, nurses, doctors, even complete strangers who have offered prayers in our behalf. We couldn't have made it without all the support!

We are thankful for our beautiful kids....for Summer's continuing improvement. As of this week, her bilirubin has gone down to 3.8! Her labs show that her liver function is improving and she gained 29 grams per day last week! Summer now weighs 9 lbs 3 ounces! We are able to increase her feeds per hour and give her 20 more ML's in her bottle feedings. Next week I will be able to start adding a breastfeeding in every day. She is going to be a real baby after all :)

Brianna and Whitney love the babies...they love them too :)

We are thankful for Grandparents' houses too! My inlaws have this room stocked full of toys the kids love to play with and borrow ever time we go there

Tom and I have recently come to realize how important family is...and that the things we thought were important previously, just aren't so important anymore. Our perspectives have definitely changed significantly. We are looking forward to the Holidays with family and friends :) Hopefully 2009 will be better for all of us!

I am even thankful for cranberry salad...we have it every Thanksgiving. This time it was extra special. Jeanette was in charge of making it. The night before, she made the jello part of it and didn't have room in her fridge to chill it. It was cold enough outside so she set it out on her back porch covered in saran wrap. The next morning she went to bring it in and discovered she had really made the local squirrels' Thankgiving complete! There were perfect little footprints in the top and they had munched their way through about half of it! :) She panicked, called my mom in law for help and off they went to replace the ingredients. When the new salad was placed on the table, my mom in law added a furry little friend to commemorate the event :) Good job Jeanette! Too bad I wasn't around to catch this Kodak moment, haha!

One down, three to go...

Summer has been doing well. A couple weeks ago, they took her off the Lipids and it has been great with one less wire to trip over! Here she is modeling her attachments...

Before: With two IV pumps, the Enternal (feeding tube) pump, and oxygen tank we have quite a load to carry

After: One pump gone, sure lightens the load :)

As of last week she weighed in at 8 pounds, 14 ounces. Though she has been gaining weight each week, it is only about half as much as they would like to see her gain. She has been gaining about 10-11 grams a day...they want her to gain about 25-30...that's one ounce per day! We discussed maybe changing her food recipe and/or TPN. The nutritionist has changed the "recipe" for her TPN each week trying to get her to a place she needs to be. At this point, her lab work has been great, but she is lacking enough calories to gain. The new recipe has double the calories than the previous week and we have stayed at 27 ML's of breast milk per hour through her NG tube. We discussed the possibility of having to introduce formula to help with the digestion, but for now we are waiting to see what the increased IV calories will do for her...

The not so portable version of our baby....complete with her own R2D2 in the corner of her room

As far as lab work goes, Summer's bilirubin has gone down to 6! It was as high as 12 a few weeks ago, went to 9.6, 8, 7.7, now 6. She is looking a little less yellow, but still not pink enough to match her room :) I think I might ask Santa for a pink baby :) Ok, no replacement, just make the one we have pink :) We have to be careful what we ask for!!

This Tues. is our regular clinic visit day...in addition to the GI clinic, we are meeting with the Ocupational therapist and having a swallow study done. I have been giving Summer a bottle with her 1/2 of an ounce 4 times a day instead of a binky trainer. I have also nursed her a few times. It is nice to have a somewhat "real" baby :)

Little Tom likes to help keep Summer happy...an ingenious way to keep the binky in. My hubby says he would have used duct tape, ha ha!

She is still sweet as ever....and crying right now, gotta go :)