This week's news

So, last week the docs said Summer could maybe come home this week. It's looking more like next week. It seems we get so close then we have to wait just a little longer... Things are definitely moving in the right direction though.

Friday I wasn't going to visit because the kids didn't have school, but the nurse called and said they were running low on breast milk so I grabbed Andrew and Morgan (dropped Tom at a friend's birthday party) and headed to the hospital. When I got there, I ran into her nurse in the hallway. Summer has had a bit of a stuffy nose so they wanted to run some tests to rule out any virus or RSV (the nasty creeping crud upper respiratory stuff people get every winter) that she may be coming down with. They moved her into isolation on the 2nd floor in her own room. It is really nice because she will not move again before she goes home...we have it all to ourselves :) She happened to pass all the tests without any signs of any sickness they tested for so they scheduled her to have her broviac catheter in this morning. The broviac is a permanent central line that will be used for her TPN. The surgeons went through her neck with a small incision, threaded it through the large jugual vein and came out the middle of her chest. Summer now has a piece of tubing that comes directly out of the center of her chest. The line can last for years, months, weeks, it just depends on how her body tolerates it being there. It's kind of weird to think she will have the tube there... she looks a little like a cyborg baby at the moment. The surgeons also installed a wound vac to her incision. They felt that it was still oozing enough that the vac would help. When I talked to her Attending doc, he wasn't happy it had been installed...just another tube and wires to have to work around! He told me not to be surprised if it was gone in the next couple of days...he didn't think it was necessary since her wound is healing fairly well at the moment. The labs they took this morning looked pretty good...Summer's bilirubin has been increasing (last week it was 7.8), but today it was down a little to 7.1. This is a good sign...it means the feedings are starting to help her body adjust and correct the possible liver damage. The more milk , the better....go Summer!

Summer has still been taking breast milk through her NG tube that goes down her nose and throat into her stomach. Each day the amount has increased by one cc and today she was up to 10 cc's an hour! Her doctors are very pleased with this...I figured out the math and it is about one cup per day at this point...1 ounce every 3 hours. That is about halfway to her ideal goal for food intake at the moment...yeah Summer! For the next week they will continue increasing the amount until she is maxed out. I am hoping she proves them all wrong and can take more than they think..it appears to be heading in that direction! :) We are still working with the binky trainer too and she loves it. Today after she came back from recovery from surgery, Summer was wide awake and acting very hungry. We got her all settled in and I gave her 5 cc's...she was very content and fell asleep.

I should start getting trained on her take home equipment near the end of the week or early next week. They also want me to spend 24 hours at the hospital learning how to care for Summer...home time is getting closer......I know I keep saying that, but it really is...I hope!

Aunt Debbie came to see Summer again today and brought her some dress ups :)

Little witchy poo

My cute little pumpkin!

Think Pink

As of a couple of days ago, Dr. Horslin (the head GI doc) changed Summer's food intake orders. She has been on continuous feeds through her NG tube and taking a binky trainer 3 times a day for suck/swallow practice. Each day they have increased her hourly amount by one cc...she was up to 6 cc's an hour today and is still doing well! That equals about 4+ ounces per 24 hour period...getting closer to normal baby amounts, yeah :) As they have increased her hourly amount, they have also been slowing lowering the amount of TPN she is getting...yeah again :) Maybe a nice shade of pink skin is in her future after all!

I went to visit Tues. with my mom and Morgan and my mother-in-law and brother-in-law surprised us. Charles has never seen Summer and Julie (mom in law) hasn't seen her for a couple of weeks. Summer loved cuddling with her Grandmas...

Grandma Julie cuddles Summer

Uncle Charles doesn't give in to the powerful suggestions to hold Summer, but he does touch her head...and strike a pose

Although Summer is number 15 grandchild on both sides, she will be just as spoiled as the rest by these two!

My parents and I have been working hard on the house this week. My dad ripped out the carpet in Summer's room to reveal a wood floor. With her increased chances of having respiratory issues, it is better not to have carpet in there collecting dust and more. I have been painting, with a little help from my very "helpful" daughter, Morgan. She loves the fact that it is pink. Yes, you heard me right, bubblegum PINK! I was standing in the hallway this morning looking at her doorway...remember the movie Poltergeist? Well, there is a pink one giving off quite the Ora in there...lit up the whole room with a rosy glow! I am still doing a Dr. Seuss theme so it is not all pink, just halfway up the wall, but no mistakin' it for any other color! I will definitely share pics when it is all done!

Morgan is very intent on perfection...

...with a paint roller just her size...

...and a mind of her own!

I wasn't going to paint that area pink, but now that it is started...

After she painted on her elbow length pink evening gloves, Morgan did request to please clean up...of course this had to be after she had gotten out of the bathtub no more than 20 minutes ago! Into the sink she went with the rollers and brushes..."bath" number 2! She likes to streak around the house so after a while she made it into the tub again for bath number 3 after a little accident...aye carumba this girl can make a mess!!!

After talking with the nurse today, it sounds like the doc is pushing to get Summer home next week....we're keeping our fingers crossed all goes well with that. She still has some drainage coming out of her incision that they are watching...it is still a little open. She is also still on oxygen and I don't know when she will be ready to be taken off that. It sounds like they would still send her home on it...just to make us even more nervous! But, either way it goes, she needs to come home. She will be so much more stimulated and cuddled...or smothered by the kids... It will really help her (and ME) feel better quicker.

Jumpin' da Gun

First of all, thanks to all those who have congratualated us on Summer's homecoming. It looks like we may have to put it off for a week or two :(...The doc that was on this weekend was hoping we would get Summer home this week, but as we know, different docs have different opinions. I met the head of the GI department today and he met Summer for the first time. After reviewing her case and checking her over, he told me she won't be ready this week, but maybe by next week. So, not as soon as we hoped, but not so far away still. We will keep our fingers crossed and prayers coming.

Before she comes home, Summer will need to be on a more stable feeding regiment. They have upped her amount she takes with the binky trainer, but this may change. He is thinking he might adjust her feeds so that she gets a larger amount through her tube continuously and just use the binky trainer for practice, not counting the food she takes in as part of her needed nutrition. By doing this, she can have less TPN, which would be better for her liver. While we are waiting for all this to even out, she has a few other issues that still need to be resolved. Some of her lab work came back with higher numbers than they would like to see today, so they are re-checking her numbers on Thursday.

The doc also reviewed her chart and mentioned something I thought had been resolved. A few days ago, a neurologist came in and let me know they had done a CAT scan because of something they saw on a cranial ultrasound. When Summer first arrived in the NICU at Children's they had done a scan and found a possible grade 1 brain bleed. After re-checking it they decided it was not significant and were not concerned about it anymore. When she was transferred to the floor, they repeated an ultrasound and saw something so they did a CAT scan. The CAT scan revealed some fluid in part of her brain. At this point, she looks fine, she is moving appropriately and there is nothing surgically or otherwise they can do about it. They will repeat the CAT scan in a month to check the status. There is no way they can predict if it will cause permanent damage at this point...no way to know what kind of future this will mean for her. I am trying not to worry too much about this, but it you are a parent, you know that is easier said than done.

So, please keep the prayers coming...hopefully we will be seeing Summer at home before too much longer...

Today the nurse and I gave Summer a bath

She loved the warm water...at first

She is looking chubbier...she weighs about 7 pounds and 12 weeks old today!

SURPRISE! Especially for us...

I talked to one of the docs yesterday and asked what goals they have for Summer to be able to come home. She told me Summer is doing very well and they feel she could go home as early as the end of the week! ...... What?! I suddenly feel very happy, but also very NOT ready to bring home our "new" baby... I was expecting the usual answer...we'll see how she does, she needs to be weaned from ____, we have to check with DR. ______, but no question, she is almost there. She IS due this coming Sat. Oct. 11th, so how appropriate we could bring her home then! And, hey, I already did the whole birth, recovery thing...now it's just looking forward to sleepless nights :)

I have a long list to do to prepare...we have to get trained how to work her IV lines, etc., and her room has been put off, among the other 50 things to organize around here. I guess this will be a very busy week for us!

We look forward to a welcome home baby celebration very soon!

Got Milk?

Check out this stash! If you look closely you might find a frozen turkey, a few foil dinners, a box of frozen pizzas...and, of course ALOT of milk :P

Summer was moved Monday night to her new suite in the Giraffe section of the hospital. She is in a full size crib and shares a room. Her new surroundings make her look even tinier than she is.

I met one of Summer's new doctors on Tues. As you know, it has been the great debate whether or not she would be able to take breast milk. The formula they have been giving her is broken down and therefore easier for her short gut to process. I asked the doc if and when Summer could start trying breast milk through her feeding tube....she said sure, how about today? Okay, that was easy! I could hear my freezer singing her praises...."hallelujah, I can get rid of some of this milk!" They began by mixing the breast milk with the formula just to make sure her gut would take it....she did great! They gave me some milk to dip her binky in...she seemed to love it :)

Mmmmmmm, Summer loved tasting the milk for the first time!

By Thurs. they switched over to straight milk in her feeding tube and started on a binky trainer (a binky with a small tube running through the middle and attached at the other end to a syringe full of milk) I got to help her use this the first time and Summer did well. She needs to figure out how to eat and breathe at the same time, but she took to it like a pro :) She seemed very content after eating just 5 cc's (about 1 tsp.) and fell asleep....she does a lot of that!

In her new room, the parents are in charge...I got to give her a sponge bath and change her clothes. It is really nice to do things with her that I normally would. We can pick her up and cuddle her whenever we want, change her diaper when it needs it, and whatever else she needs....wow, she really is ours now!

A full tummy makes Summer happy :)...

...too bad she can't have more yet.

Today I took Morgan to visit for the 3rd time in Summer's new room. She has been doing great with the new location. She can watch movies and eat snacks. Today she wasn't real thrilled with me holding Summer, but my parents came and took her home so I could stay and visit with Tom.

I was able to do the binky trainer with Summer twice today and she loves it. She is doing very well and they have her on a 4 times a day schedule. She gets 7 cc's every 3 hours, 4 times during the day and gets hooked up to the feeding tube during the night. The doctor popped in and told me they are very happy with how she is doing with her feeds and has taken to the oral feedings quite well too :) Tom held Summer for a while after I fed her and then we tucked her in and kissed her goodnight. It is hard leaving her there, especially now. She is getting so close to coming home, it is hard to walk away and leave her in that big bed and big room all by herself. It is definitely a different environment than the NICU...no nurse constantly looking in on her and keeping her company. I would really like to spend more time with her when I can...deep breath again...we are getting close to bringing her home!

Summer has been a little more awake when I visit...maybe we can fix her backward schedule before she comes home after all!

Summer loves the binky trainer...Motgan loves mommy and wishes she was in my lap instead :)

Summer's a big girl now :)

Summer is 11 weeks old today...only 2 weeks until her due date of Oct. 11! How time has flown...well, only because I am now looking back at it. I feel like 2008 has been one of the longest years of my life. I was telling Tom today I feel like we gave the hospital a little thing we started and asked them to grow us a baby...well, she is that! The last few days I have really been able to enjoy her as she has become more interactive and is looking more and more like the babies I am used to holding. She has such a sweet spirit and good disposition...I have loved getting to know that about her. I can't wait to get her home and really get to know her. All of her. It has been so hard letting others take care of her and enjoy her for hours and hours a day and only get to "borrow" her for a few hours as many days as I can get away. We are getting closer to coming home...

I didn't visit yesterday, so I called Summer's nurse. Well, of course on a Sunday I decided not to go in, she was taken off the oxygen for the whole day! They even took her on a stroller ride through the NICU and down the hall. I was very sad I missed that, but happy she has made it to that point too.

Today I expected her to be cannula free, but she still has the oxygen on the nasal cannula. During the night she was having problems with her breathing so they put her back on it. However, she is basically on room air, just needing 1/4 liter for now and will more than likely be turned down to 1/8 liter on the floor. Debbie and her kids came to visit and Micaela got to hold her and see her for the first time. Morgan gave us all a run for our money (oh how fun she can be at the Hospital! HA) but it was helpful for Debbie to take her down to the play area while I spent a little time with Summer and Micaela :)

Micaela loved holding Summer...they just met today :)

Morgan loves riding in the wagons provided by the hospital...she is quite the handful !

Aunt Debbie hasn't seen Summer for a couple of weeks...she loves to kiss her :)
Summer, prepare to be spoiled!

The nurse told us she would be moved today, but it didn't happen while I was there. They called us tonight and said she was moving! This is a major milestone...yeah Summer! Now we will be taught to be more hands on when we are there and take care of her needs. This is totally different from the NICU where we are mostly the observers. I will enjoy that...I have always felt like she really isn't my baby, but just one I visit a lot :( Can you believe it? I am actually asking to change diapers! Well, when they are little, they are the cute ones :)

Little Miss Sunshine is a night owl!

When I went to visit Summer Friday, I walked in to see her wiggling all over her bed and squawking a little. I picked her up and she was very soggy. The nurse came in and we changed her all the down to her bed. She pooped! Yeah again :) It had been a couple of days since they started her food, so this was great. Now they are watching to make sure she doesn't do this too often...though they want to see her bowels moving, they don't want the food to run through too quickly and dump...leaving all the vital nutrients behind. Since Summer's intestines haven't been used fjor some time, the villi (little hairs) that are inside the intestine and help move the food through slowly enough to process it, are gone. It will take a few weeks for more villi to reproduce inside and help larger amounts and higher fat content breast milk to be processed.

After we changed her, Summer was very alert and stayed that way for most of my visit...I took advantage of it and got a few very concentrated shots :) She was staring intently at something behind me...so hard, she went a little cross eyed...her eyes even look like they might be blue!

I just recently returned from the hospital...yes, it is now 1:49 AM on Sunday! Ok, I have been home for almost an hour. By the time I changed for bed, took out my contacts, shut all the windows, turned off all the lights, locked all the doors, turned of the back sprinkler the kids left on (these are all things my hubby doesn't notice on the way to bed :)), plugged in my computer, pulled out the milking machine and strapped on the ol' pumping bra, I had managed to kill almost one whole hour, wow. Time really does fly when you are having fun, haha.

I decided to go on my weekly Sat. visit with one of the boys last night and didn't get out the door with little Tom until almost 6:30 PM. We grabbed Arby's and got to the hospital around 7:30. Summer was wide awake when we got there. Apparently she thinks nightime is playtime. I have never seen her eyes open for so long and have her be so alert. The nurse said she was pretty crabby last night and stayed awake a lot...I have heard that from several night nurses. I decided, and told her this, that the nurses need to get her straightened out before she comes home....ha ha, we both said, good luck with that! I changed her diaper and clothes and held her for a while...she went to sleep...then little Tom held her and she slept some more. We decided to leave before the UW Huskies game (right around the corner) was let out. Traffic is horrid...

She's a real girl now! So cute

Little Tom hasn't seen Summer for a few weeks...he said, "she's not even one and she is so huge!" He is very cute with her

We didn't make it. Despite getting out on the road before the game let out, they still had everything barricaded and re-routed by the time we got out there. We grabbed a milkshake from Burgermaster and ended up going in circles for almost an hour before I just decided to head back to the hospital away from the traffic, and wait it out. By this time, it was around 11 PM. Little Tom and I headed back upstairs and stayed until almost midnight. Summer needed to be changed again and woke up. I held her up to help her balance her neck and patted her over my knee. These are normal baby things I haven't been able to do with her because she is always so sleepy during the day. We've gotta change that for sure! When she comes home, I will be a walking zombie if I don't get sleep at night for sure :) I also got to see her weighe...Summer is now about 6 pounds, 7 ounces...of course I took pictures...the poor girl is going to get camera flash burns some time soon!

She likes it when the nurse sits her up...she can hold her head up a little

Mom, Summer, and little Tom

Summer is now 6 pounds 8 ounces!

They had weaned Summer's oxygen to around 26%, on 1 liter, and low flow. This is where Dr. Jackson wanted to see her before she gets transferred to the floor (out of the ICU), so maybe she will be transferred very soon :) There has also been the breast milk debate...whether or not she will be able to take it. It sounds like they might possibly try her on it in a few weeks, so the pumping continues...I hope my freezer holds up, haha...