Life at Home

My life in a (pea)nut shell...

Morgan's foot was perfectly preserved on this PB&J left on the floor. This week has been crazy!

Tom has been home all week so I thought I would get a lot done. HA! Curtains are still unfinished, Summer's room contents are still piled in my room, no more painting done....Ah, the life of parents of a kid with wires is a bit more complicated than thought. We have had to throw a couple of bags of TPN out because of mistakes, Summer is producing lots of laundry, and we are up all night "partying" with her :) She is a great sleeper...from 3 AM on...ugh. But, she seems to be very happy being home and she rewards us with cuddles and smiles :) We've even managed to squeeze a few regular life events in between it all...

Look...she put Daddy to sleep...what a surprise :)
I was changing out Summer's TPN and she decided to pull out her feeding tube...so, what the heck, I changed out her cannula (oxygen tubing). I grabbed my camera and got a couple of quick fuzzy pictures...I'll take fuzzy with no tubes! :)

A cute closeup of our "golden girl" as Tom calls her

Cute little Summer loves to cuddle like this...check out her little ladybug toes on the cute outfit Mindy gave her :)

Joan has been so sweet with all the love and support she has given us...she got to cuddle Summer too :)

My friend, Lynette stole some cuddles too

A quick Pumpkin patch run

My friend, Suzy has a pumpkin patch at her church every year on the front lawn. When we pulled up, little Tom said, hey, this isn't the one we've been to before! Ok, so it wasn't the unconventional patch, but the kids had a blast running up and down the hill looking for cool pumpkins anyway! They now want to go to it every year :)

LynetteShawn, and Lindsey met us at the pumpkin patch

Morgan insisted on pulling the heavy load...
...and pushing it...

...and lifting them...

...all the way to the car...OOPS! her skirt fell down!

Summer slept through it all in the car...cute little punkin

Andrew's impression of a Jack-o-lantern

Tom found a bunch...we dragged them all home. He says he has a whole pumpkin family :)
This week Tom earned his Bear at Cub Scouts...just in time to advance to Weeblos :) Yes, he was happy, just not for the camera :)

Summer is Home!

Well it actually happened...we brought Summer home last Thurs. Oct. 23 at 3 1/2 months old, weighing 8 pounds, and accompanied by an oxygen tank, 2 IV pumps, and a feeding tube. Our lives have definitely gotten a bit more complicated, but it is all worth it :)

I spent the night Wed. with Summer in her room. We stayed up most of the night cuddling...I think she realized I was there for the longest time I had ever been and she didn't want me to put her down :) So, after only 3 hours of sleep, it was time for the big day. A respiratory therapist arrived at 11:00 to bring an oxygen tank and train me on how to use it. Shortly after, I ran to grab lunch. Tom arrived around 3 and we waited for the Home Care nurses to arrive. We put Summer into her car seat to make sure she was ok in it...After about 3 hours of training on the TPN pumps, we were free to go.

Daddy cuddles Wednesday while still at the hospital

Summer still has tiny hands...wrapped around Daddy's finger :)

Summer's chillin' while waiting for us to go

Cam, one of her NICU nurses, came to say goodbye

Summer wasn't sure she liked her seat at first

We hauled all of our medical supplies to the van and away we went. We got home around 9:00 PM and were greeted by our kids and Tom's parents.

Tom hauled Summer out to the van, yeah :)

This is the walk I have done many many times. There is a safari theme and every time Morgan would come with me she would point at the "baby gaffe, mommy gaffe, baby zeba, mommy zeba, baby hannasee, and mommy hannasee (elephant, how she came up with this name, I do not know!)" It was somewhat anticlimactic after so long here to just go out the door without any fanfare....we were having a party in our own minds!

Summer snoozed in the van...with her new best friends, the little red backpack that holds all her pumps and the portable oxygen tank

A glimpse of Summer's new room while Grandma Julie cuddles her


I was a little worried about how Morgan would do with Summer's arrival, but she was pretty excited to see her come in. She kept saying "Baby Supbo at my house!"

It took us a while to get settled, but Summer slept right through it all.

We forgot to take the bassinet down from the attic so Tom made her this laundry basket bed, haha....I ended up sleeping most of the night holding her while sitting up in the recliner anyway!

Summer took a quick nap drenched in pink :)

The next day was little Tom's birthday. We sent him off to school with some Twinkies for his class. A Home Care nurse arrived and continued with our training. We hadn't unpacked anything yet, so she helped us organize it all and gave good suggestions for how to use our space for prepping the TPN. She was here for 3 1/2 hours, then we were on our own. An hour later I took Summer on her first outing to the Pediatrician. Then it was back home for a while, unhook the TPN and out the door for pizza. It didn't exactly go that smoothly, we changed the cap on Summer's IV line, but didn't have the right cap. A process that should only take a few minutes took a lot longer. We panicked and called the nurse....no problem, we will switch it out on Monday when she comes back. Now we only had about a half an hour to eat, we ran out the door to Round Table just behind our house. After we ordered the pizza, I decided she needed to get hooked back up so I ran home, plugged her in and back to Round Table I went. Breathe here...We scarfed some pizza and then took little Tom to a Game store to spend his Birthday gift cards he got. Summer did great all day. She spent a lot of time in her car seat and slept "like a baby" :)

Little Tom opening some birthday presents
Morgan gave baby Subpbo lots of kisses

Saturday was a lot more uneventful, thank goodness :) Tom did accidentally use the wrong tubing when he prepared the TPN and had to redo the entire thing, but other than that, I think we are getting the hang of it, maybe... The kids love having Summer home and so do we. She is very sweet and sleeps really well. In fact almost too well. Since she is hooked up to her feeding tube 24/7 and we she doesn't cry when she is hungry, it is hard to remember to change her diaper regularly. She slept last night for 9 hours and I woke her up to find a swamp....oops, sorry Summer :) I got her cleaned up and did the binky trainer with her. She is now cuddling with little Tom and very happy :)

Little Tom likes to hold Summer :)


Our week is filled with Dr. appointments...Tom will be home all week...the adventure begins!

Homeward bound!!!

Tomorrow is the BIG day...Summer's coming home tomorrow evening after we have some more instruction on her IV line and get our oxygen tank delivered! This has definitely been a long time coming...can't wait for all those sleepless nights ahead :)


Just a quick recap on current happenings...

I have been working like crazy trying to finish everything in her room....painting, curtains, floor, etc., and of course, I am not done. Argh.... However, I did get the room basically painted, adding a lighter pink stripe and making the top of the wall white. We had the best intention to refinish her wood floor, but procrastination set in and it didn't get done. I spent 2 hours last night crawling around scrubbing with Murphy Oil Soap (insert shameless promo here!! It works fantastic!!) and a Pampered Chef scraper (another said promo). I managed to removed most of the visible paint splatters and gunk left from being covered with carpet...I have the sore arm and chapped hand to prove it! The whole time I was working I was thinking I should have taken a before picture, but knew if I crawled up off the floor I wouldn't get back down...old age setting in...So, just use your imagination and please just be impressed with my efforts :) (Pictures come later when it is all done)


The last couple of days Tom and I have been learning how to take care of Summer with her attachments. She will have a feeding tube with pump, and IV line with 2 pumps, and an oxygen tank. The 3 pumps will fit into a little backpack we can haul around and we will find out about the portability of the oxygen tomorrow. It is pretty simple...hahaha. We have to scrub down, change gloves about 3 times each time, and make sure we keep all her IV supplies sterile and not touching each other. This is sounding like a real Morgan related nightmare...good thing I can lock Summer's door. Please don't call CPS if you happen to pass my house and hear a large amount of screaming...it could be coming from Morgan being denied access to fun wires and buttons, Summer, because of her fun wires and buttons, me because of it all, or, the most likely, ALL OF THE ABOVE! This is my destiny....bring it on! By the way, if you are in an emergency and need medical supplies I am your woman :)

I am staying tonight with Summer to hook up our pumps and test drive them. Our portable oxygen for the ride home will be delivered tomorrow morning, more IV teaching with Tom tomorrow afternoon, our trip home, then oxygen set up at home tomorrow night. Phew... I am really looking forward to PJ's and sleeping in for my upcoming future! Yippee!

For our new OCD/Anal life style to be kept as germ free as possible, the doctor's have recommended the following:

~Anyone to hold her or touch her must wash their hands
~No contact with anyone who has cold or flu symptoms...keep a 3 foot distance from anyone coughing or sneezing
~No kissing her face (except me :) )
~If you must touch, touch her toes, not her hands or face
~No contact with children who have not been immunized
~No smoking around her (lung issues)
~No wood fires around her (lung issues)
~No open flame (because of the oxygen)
~No dating until she is 20

Okay, my hubby would want me to throw the last one in....our life is going to get a whole lot more fun! :)

Getting ready for Summer...the baby :) *with revised toe shot...ewe

OUCH!

Can you guess what this is? No it is not part of my Halloween Costume...

Before

After nail polish removed...pretty eh?

...as I have been getting Summer's room ready, I sustained a lovely injury. I was moving a bookshelf and one of the shelves fell out and landed on my big toe...OUCH! It is quite a nice color combination, if we were celebrating the 4th of July! I am afraid to take off the lovely red nail polish (embellished by the touches of pink I can't seem to scrub away from Summer's room) to reveal what lurks below...I will, and I will share it. Aren't you looking forward to it? :)

Here is our little cutie with all her current attachments. The white tube on her chest is there to stay for a while...it is her broviac catheter they installed on Monday. The big grey thing on her belly is the wound vac that is there to help her incision heal...you can see most of her incision just above the top of her diaper (it looks like a crease in her skin) It's healing quite nicely :)
Look! Summer's eyes are looking a little more blue!

Summer's chillin'
As Summer settles in to sleep, Morgan does too...watching Sponge Bob

I have been getting a little frustrated the last week or so waiting for more definite answers regarding Summer coming home. It seems like everyone I talk to says well, maybe next week... Monday was no different.

Today I got a lot of great answers. I talked with the med student watching Summer today and cornered her. She left for a while and came back with answers and sent in the nutritionist to talk to me. They have been increasing Summer's breast milk and reducing the TPN...she is now at 13 cc's an hour of milk and is condensed as far as she can be on her TPN. Tomorrow they are going to try and cycle her TPN (run it for a block of time and turn it off for a couple of hours). If she can maintain her blood sugar when they do this, we can play with the length of time she can be off it. At first it might only be 2-4 hours, but what a great 2-4 hours that would be! The nutritionist wants to get her figured out before she comes home so I can be trained on the regiment that is the best for her. Summer is in the 50th percentile on a preemie chart, her head is growing great, her length is good, and her weight is even a little heavier that it should be...she was happy about that! Summer is now 8 pounds 2 ounces :)

The wound vac is still on...as you see in her picture...and is not sucking anything out. That is great...it means there is no fistula (a small tube that would ooze bile), and the wound is healing nicely.

All the labs done today looked pretty good. The med student found out the results from her eye exam finally too...she is between stage 1-2, 1 being the best. So, there was a little improvement from her first two tests :)

The attending doc stopped in and said they are still looking toward next week for discharge and she looks good overall. We'll just keep waiting!

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!