It's about time!!

It has almost been a month since I updated this thing...no there is nothing wrong :) Just busy, busy, busy! Oh, and there is the little detail like...my laptop isn't connecting to our internet at the moment, argh....hubby is out spending more money to fix that problem as we speak, oh yea :)

To sum up....Summer is now 12 pounds 2 ounces...that's 3 pouns in the last 4 weeks!! The nurses have been telling me that once she got home, and things were somewhat figured out, she would start really plumping up. I was waiting and waiting for this to happen...guess we have hit her chubbin' up point!

Summer has been so happy and healthy lately too. At our appt. a week and a half ago, Dr. Horslen pointed out her liver function numbers...they are almost completely normalized! At one point, they were almost 300 (with a norm between 40's and 60's) and now have come way down. Her bilirubin is still holding at 0 and obviously she is thriving on the formula we have been giving her :) What a relief!

We also got the okay to go every two weeks to the GI clinic instead of every week....ah, it is nice not to drive into Seattle as much :) I am hoping that lasts :)

I have a lot more updates to throw in here too....look for Christmas pics and more to come....I figure it is about time for that since my Christmas tree is finally down :)

Summer is home again...

...and look how happy she is about it!

Yesterday I left early for the hospital so I could make it there for rounds. I walked in right as they were reveiwing Summer's progress. A few minutes into it, the Doc said "should we send her home and see how she does?" YES! I squeaked in my cold induced voice...after 8 days we were definitely ready. This hospital visit, though not the way I would have chosen to spend the first week of our New Year, has turned out to be a blessing in disguise. We got to bring her home without oxygen (YEA!!), we figured out the best way to get her to gain weight, (she is now 11 POUNDS, 1 OUNCE !! that's almost 2 pounds in a week!) and she got the much needed blood transfusion to help her anemia.

Summer is so happy...she was before, but now that we see her feeling so good, we know what Summer's happy really is! Last night I tucked her in bed around midnight and she slept until 8:00 AM. She has been all smiles and coos...it is so nice to have her home :)

It was time to go, so we loaded up our cargo....precious and perishable :)

Summer is happy to be going home! Notice no backpack in sight...she was on her 4 hour TPN break and was unplugged from her food until we could hook her up at home...it was the first time we got to hold her without tubes. I picked her up and walked around the room...not a tube dragging behind, it was fun :) We took her home in her carseat without the attachments too and brought her in the house that way. The kids were really happy to see her :)

Morgan immediately ran over to the couch, sat down and said "I hold baby Supber pease?"

The girls got some good cuddles in...Summer seemed to enjoy it too, she even smiled when I said "Say cheeeeese" :)

Look....they match now :) Summer's color is so pink and healthy, and her dark hair is starting to be replaced with the more golden color Morgan has.

She's fat and happy :)

Look who I saw today...

...notice anything different??? :)

I walked in Summer's room to find her in a swing...she spotted me and burst out in smiles...grinning from ear to ear. I guess she missed me too :) I kissed her cute little tape free cheek and she smiled again...they turned her oxygen off yesterday around 3:30 PM and she has been off ever since...she must be so happy not to have the oxygen blowing up her nose anymore! I am just a LITTLE excited about this milestone myself...woo hoooooo!
At this point they had turned Summer's food off again yesterday to give her bowells a rest. She was still stooling a lot and had traces a blood in it. She has been having this for the last few weeks and we didn't know why until now. All signs are pointing to an allergic reaction to breast milk. Is that possible? We asked the same question...apparently it happens. It isn't actually the breast milk itself, but the whole cow's milk protein that is transferred through the breast milk to the baby. Most of the time, the mother's body will break this protein down, but sometimes it is transferred directly without any break down or processing. This is a very harsh protein for some kids to process, so they have an allergic reaction like diarea and blood in the stool. It takes several months for it to build up to this point, but once detected can be taken care of. However, though in a baby with a normal functioning gut, this can be taken care of by reducing the dairy intake of the mother, Summer's gut is a little trickier. There would be no way for me to use the milk stored to feed her through her NG tube and I definitely don't have the ability to reproduce the volume I had a few months ago. I have moooved on, ha ha...The docs feel she benefited greatly for the past few months and was able to heal well while taking it, but now feel the formula is to be her sole diet. Though this may seem like a dissapointment, it is actually a huge relief to me. Just knowing that stupid breast pump was still in my house, caused stress in my life. I have been so happy to provide what I could for Summer, but the lack of sleep and complication from the whole process will definitely NOT be missed :) So, Tom says we need to start our own home dairy or start using it in our cooking.....homemade cheese anyone? I hope you haven't restricted yourself to fat free! EWE...

Summer has been taking 10 ML's an hour of formula for most of the day and doing well so far....maybe she will be home sooner than we think! I will spend the day with her tomorrow and keep my fingers crossed....maybe I could sneak her out in my backpack...no big oxygen tank to haul and she still doesn't weigh much, haha.

Once there was a snow man....

Wierd Washington Weather!

Last Sunday it started raining, as it does very often here, and the many inches of snow we were graced with, were gone within hours....

This is all that remained of our beloved "Lumpy the snowman"...sniff....until...

It snowed again!

It started snowing last night around 5 PM and continued most of the night. By 7 PM there was already about 2 inches and suddenly people forgot how to drive, again. I decided to spare myself the hills of Seattle and didn't go see Summer....sniff. She was doing great, and I would go the next morning.

After all......by morning...

...our yard looked like this again!

Little Miss Sunshine

Still at the hospital but doing better. Today Summer is up to 30 ML's of formula per hour in her NG tube and taking her bottles again. She is still keeping her labs where they want them, but pooping more as her food was increased. She looks great though and will be able to come home in a couple of days, maybe...still up for debate. We still have no answer from the pulmonary team about weaning her oxygen or not, but it is still in the works. Next they will try and take away the extra saline they are giving her to compensate for her full diapers...if she can still maintain her good lab numbers, she can come home. For now, we will just have to gaze at her cute pink self here on my blog...

Last week was Summer's maiden voyage to church for our Christmas program (delayed a week because of the snow) She looked very cute in this pink dress...surrounded by her pink bouncy seat to help pink en her up even more....

Wow! Look at her now...she is really chunkin' up those rolly thighs! She has had the IV board on her hand since she arrived and has not let it stop her from sucking the thumb that sticks off the edge of it...in case you don't remember, she did this with her thumb when she was only 2 1/2 pounds and still on a breathing tube! I guess bad habits REALLY do start early :)

After a lot of TLC and rest, Summer is looking very pink and healthy, even without being drenched in it! She even matched my hand that is supporting her :)

Now our little sparkly, blue eyed Sunshine is...
...all cheeks...
...and chins...
...and all grins!

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....