Home again, home again, jiggety jig

Summer came home yesterday and is doing great. After two days in the hospital, the blood and stool cultures were all negative. We still don't know what caused her diarhea, but it has resolved and she is back up to 40 ML's per hour (which is where she was before she got sick).

Summer now weighs 13 pounds and growing. She has remained her happy, smiley self even troughout her illnesses. As of this Sat, Feb. 14, she will be 7 months already! How time has flown by! Her lab work is looking good and we are back to moving forward. Next week we are going back to the clinic...hopefully she will continue to do well enough to advance her feeds some more...we can't wait to get her off the IV!

It's tune up time again!

Well, we have had Summer home from her last trip to the hospital for a month (almost to the day) and are back again. A few weeks ago the doc gave the okay for us to come to clinic only every other week because she is doing so FANTASTIC! I knew that with a change like this, another hiccup was in our near future. Call me pesimistic...I have been told this is just how things work around here :)

As usual, we have been increasing Summer's formula through her NG tube slowly. With this last week's increase (from 35 ML's per hour to 38, then up to 40) she did great...until Sunday night. Summer usually will sleep through the night, sometimes as long as 10 hours at a time, but that night she woke up crying. I went to check on her and she was soaked from brim to brim. Her diaper was so full, it couldn't hold anymore. I did a full head to toe/bedding change and tucked her back in. After about another 4 hours, she woke again crying. Back in to her room I went for the full change again. After another 4 hours, the same routine. By this point, she was shakey, her lips were dry, and she was licking them f, uriously. She was also very fussy. I had to change her and throw her in the car to take little Tom to the doctor. I put a bottle in some hot water and away we went. When we got to the doc's office, she sucked the bottle down, but was still fussy. She was soaked again.

I called her clinic nurse....time to bring her back to the hospital. Summer had had so much diarhea, she was getting dehydrated. Fortunately I was able to recognize the signs easier this time and we caught it before she got too sick, or lost much weight.

We spent the night last night with her food turned off. This morning we started at 5 ML's per hour and have been increasing it up 5 ML's more every 2 hours. Her labs looked decent, dispite the hiccup. so we may only be here for a day or two more...let's cross our fingers.e

Today was also a scheduled Occupational Therapy appt. so they came to us. Summer is doing pretty well, considering her 3+ months stuck in bed. She is definitely VERY social...she smiles, coos, responds, etc. The testing did show that she is a little behi nd in her fine motor skills/desire to grasp at things. The OT said she should come alo ng nicely with a little encouragement and this is no surprise for a baby like her. She is so cute and sweet...her smile brightens up any room she is in :) Ahhhh, like my cliche?

Enjoy some recent photos of her below...

Here she is ...with her tongue...her favorite new toy
(pics taken 1-19-09 @ 11 1/2 pounds)

These are some impressive cheeks(s)!

Our happy little girl!


Snuggles with her binky 1-26-09

Nothing sweeter than a sleeping baby 1-28-09

1-25-09

1-24-09

"Yes, we get it, I'm sweet...now shut off that flash!!"

More smiles 1-24-09

And yet, more smiles! She truly is a ray of sunshine :)

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.

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....

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!

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 :)

A quick update on our favorite preemie :)

Summer is 8 lbs. 8 ounces, 21 inches long

Life has been nuts lately. I finally have some computer time and thus I am posting all kinds of stuff today :) I suppose you are all curious about how Summer is doing...

She is doing great! As you can see in her recent pictures, she has been quite jaundice. This is because of the constant use of TPN and Lipids. She needs these while we slowly increase her breastmilk intake to the point of weaning her completely off the IV TPN. When Summer was first diagnosed with NEC and had surgery to remove all but 10% of her intestines, we were told she would have to be on IV TPN for the rest of her life. She would more than likely develop serious liver damage and eventuall lose her life early from liver failure. Well, with lots of prayers and a little body with incredible healing power, she is proving them wrong!

At 4 months old on the 14th, Summer weighs 8 pounds, 8 ounces (6 pounds bigger than at birth!) and is getting about 3/4 of her nutrional needs from breastmilk in her feeding tube! Each week we visit the GI clinic, they are happy with her bloodwork and increase the milk per hour. This week she goes up to 25 MLs an hour...her goal to be off TPN is only 30 per hour!! Each time the milk is increased, the TPN is weaned down...getting closer to exclusively taking breastmilk. This week we are getting rid of the Lipids (she has had a pump for TPN (the vitamins and minerals) and a pump for the Lipids (omega 6 fats) This is sooo great for her! The Lipids are believed to be a major part of the liver damage problem and would have been replaced with Omegaven, if it were available to her. However, now that she is getting so close to not needing IV nutrition, she won't need Omegaven at all! It may take a few more months with small amounts of TPN while we fatten her up a little more, but the future is definitely looking bright for her! :) With the new change this week, we also get to have a 4 hour break without anything running....next week we will get 8 hours and so on.... Her Bilirubin had gotten as high as 12 a couple of weeks ago, then down to 9.6, and was only 8 yesterday. Her jaundice is getting better as a result and she is looking closer to pink than yellow...we like pink :) Wow, we are being blessed!

In addition to all that good news, last week Summer had another CT scan. A month and a half ago she had a scan that showed some fluid where brain should be. The neurologists were concerned with this and so were we. The current scan shows she still has some swelling in some ventricles, but the areas of fluid are filling in and everying looks like it is improving! You can't imagine what a relief this is for us....ok, maybe you can :) We will still have to watch her, but things are turning more positive than we thought they could. Summer is starting to really respond to us. She smiles a lot and is starting to make cooing sounds...it is really cute.

Here are some proper "newborn" pictures (only 4 months late, ha ha) I took after she yanked out her feeding tube again. They remind me of the pictures the photographers that come to the hospital get. The lips are always pursed and they grimace when you take away the binky...I have to snag every opportunity to see her cute little face without tubes I can! She tends to cry alot when I do.....you'd think she would have learned by now how many pics I take!

Notice the nasal cannula halo on our little angel, ha ha :)