Comer's NICU Reunion

So it has been one year, eight days and a handful of hours since we first walked into the doors of Comer's NICU.  Thankfully today was the first time back to Comer's since we brought Ava home on December 11th.  We were so excited to hear that the NICU has an annual event to celebrate the little miracles that come out of this world class hospital.  The reunion is an opportunity for nurses, staff and doctors to realize all of the fruits of their labor.  Ava was able to see four of her many nurses that cared for her throughout the two months she was at the hospital.  She was most excited to see her beastie Liezel.  

We are forever greatful to have encountered such great people.  Although we don't talk to them everyday we think of them often!  

The boys had a fab time watching the magic show, flying around the jump house and slurping down way too many slushies.  Their view of hospitals at this point is extremely warped.

We celebrated Ava Jane's 1st birthday last weekend.... Smash cake, tutu's and overflowing love from family and friends.  At one year she is weighing in at a solid 22 1/4 lbs and topping the charts at 31." She is all over the place crawling and climbing and just about to take off walking.  We are ok with her holding off on that for now!  Her personality shines in a room- typically never without a smile.  Seemingly perfect in every way.  

On her birthday Matthew and I sat down and read part of the blog.  Each of us had our own accounts of what happened the first few days but going back and reading made us so happy we documented Ava's journey.  Even more so, made us realize how lucky we are today.  

The Takeover of 3 KIDS

An update is long overdue!  Our beautiful girl is three months old (on the 17th)!

Can't hardly believe it!  Ava is doing fabulous- she is screaming for bottles and she proceeds to suck them down in minutes.  Last week had a follow appointment with PT (physical therapy) and they felt she was right on track- in-fact Ava was showing off a bit rolling over for the first time in front of them!  The physical therapist doesn't feel she needs any additional PT services- which is a very different story when she was leaving the hospital!

Her three month visit with Dr. Batish went fabulous - weighed in at 12 lbs 7 oz and 24 3/4" long.  She is a tall girl!  We are a little off on the shot schedules so timelines are different for Ava but she doesn't need to be going in anymore than any other healthy baby.  The last follow up appointment will be in May to get a second MRI.  At this point in time she shows no signs of concern but they want to be precocious.

The last hurdle we will have is transitioning her from breast milk to formula.  Dr. Batish has encouraged us to have her on as much breast milk through the winter as possible.  We are still using what was donated to us but that supply will run out quick at the rate she is going.  So we will start her on a small portion of formula each day/bottle so that she has a mix.  We have also determined that she does not need the Prevacid - big bonus- thinking that the spitting up and issues with her belly were either related to the narcotics or ulser healing.  Whatever it was, just thankful she doesn't have to take those meds!

As far as normal baby stuff- Ava is honestly a dream baby!  She is falling into an easy three nap a day pattern and on average getting about 10-12 hours a night!  ... If only her brothers would get with that plan (I write this as I battle getting them to bed - again)!  

She is very animated, smilies all the time and loves chatting- sounds like a bird squawking!  Trying her best to catch her thumb but for now her two pointers will have to do... Likes the paci but don't think that will stick!  Honestly the only time she cries is when the hunger pains hit- which is still music to our ears.  One would never know she had such a rough start! 

Brothers Mason and Ryan continue to have very different views of her - regardless of what they think she is making it clear that she rules the roost!

I often find Mason in her crib gazing at her and laying every blanket and lovie friend next to her.  He reads to her and loves to help with anything Ava.  My favorite is when I find Ava with "Blue," Mason's lovie perfectly draped across her.  For those of you who have not had the pleasure of meeting Blue- he is the brown creature in the second pic below.

Ry Guy or as I have been calling him, "Captain Crazy," usually proceeds to take those same stuffed animals and bury her.  "We play Mommy!"  

Yeah, he isn't allowed in the crib anymore.  The latest item I found on her head was the Spider-Man bucket.... Ava's legs and arms flailing.  But of course she was as happy as could be when taking it off.

We have seen Mason and Ryan become thick as thieves in the last couple of months.  Good and bad- love to see this but they do plot against their Mom and Dad. We have come to find that Mason is the planner and Ryan executes.  We are still questioning who turned the heat up to 88 degress before we left the house for 2 days last week.... Can you say sauna at 690!

I also decided to add fuel to the fire and try to potty train Ryan, comical.  One overflown toilet (that poor bathroom has seen a lot of water), a lodged diaper, many unsalvagable Mickey Mouse underwares later- we are maybe 63% there.  Thanking the heavens for marshmallows, his addiction to gum and "I Go Potty" books!  Still can't control my laughter during our long chats about "foop" and all of his concerns about "dat ting dat eeeeeee's!"  He is a wild child but we can't stop laughing!

Enjoying every second of being home with the kids.  Herscher approved an extension to my maternity leave through the end of the school year - so I don't have to go back until August.  Have had a lot of time to decompress and just enjoy having all of us together.  Also been taking quite a few pics of this beauty...

Thanks to everyone who has been reading the updates on Ava and our family!  

As things have calmed down with Ava we have decided that we would write a blog post about every month to keep everyone in the loop.  

We are excited to see what the future brings for Ava and our family, but for right now - things are pretty darn good…

XOXO

Monday 12/22/14

One Independent Baby Girl!!!

Last Wednesday the 17th, Ava's two month birthday, Our Little Miss decided she had had enough with her feeding tube. Around 9:00PM we were discussing which Christmas gift to buy next on Amazon.com (because I am not sure who actually shops in a store anymore) and Ava pulled the tube right out!  

Not a word was spoken, she didn't mention that she planned on doing this, she didn't even give us a heads up. We looked down and noticed it and all the anxiety that we had before leaving the hospital about this moment was gone. 

There wasnt any crying, she didn't say a peep -- just laid in her bouncy seat looked up at Mommy and Daddy and smiled the biggest smile ever!!!  Basically her way of saying -- "Yea, I was over that thing!"

The day prior to the most uneventful feeding tube dismount Ava took her first bottle in its entirety!  The night she pulled it out she had taken three full bottles without us having to supplement any feeding through the tube!  We took this as a sink or swim sign - that we should give her a go without the NG tube.  The following day Ava took every single bottle by mouth - obviously we are thrilled!

We met with Dr. Batish on the 19th. She was very happy with Ava's progress and told us to keep the tube out for the time being. She mentioned that she would only instruct us to put the tube back in if Ava didn't continue to gain weight.  She weighed 10 lbs 13 oz at the appointment with Dr. Batish - she recommended that Ava should gain at least 5oz over the next week - so we are keeping a close eye on her weight.

Dr. Batish also reccomenndes for us to use a breast milk fortifier in each bottle we give her. The fortifier essentially turns her breast milk cocktail into a calorie filled protein shake!! 

Ava has gone from not wanting to take a bottle when leaving the hospital to sucking them down - even screaming for them when service isn't fast enough! Since the tube came out on the 17th she has graduated to taking approx 4.5 oz every feeding.  Also, since we came home on the 11th she has slept at least 9 hours every night...  

We are definitely blessed - have begun very serious talks with her about her behavior now and what our expectations are for the future.  The way we see it, Ava has already given us each three to four heart attacks, so this whole eating well and sleeping through the night thing is expected to mantain until she is at least 25...

As for the WATERPARK boys -- lets just say they are making us pay for not being around for 2 months...

We have had numerous discussions with Georgie our elf -- asked if he knew any Elves that were out of work and would be willing to come help watch a 4-year old protaganist and a 2-year old antagonist.  Georgie reported back and said "Good Luck!"

Wishing all of you a very Happy Holiday!  

Hope you all get your own Christmas miracle as we did!!!

XOXO

Thank you Meyer's & Anderson's!!!!!!!!! 

Tuesday 12/16/14

HOLY COW!!!  MOMMY WAY UNDER SOLD THESE BOYS THAT LIVE IN OUR HOUSE!!!!

I mean these guys are exhausting!!!  Sometimes the little one that Mommy and Daddy call Ryan, Ry Ry, HEY  YOU, Baby Ry Ry -- I am still not exactly sure what his real name is -- likes to climb into MY swing.  I am not really sure who he thinks he is, but it is very apparent that the swing is for ME and NO ONE else.  So I have had a couple of chats with Ry Ry about this invasion of my swing.  I think he is getting the picture. 

Mommy and Daddy have been doing a real good job making sure I eat.  I tried telling those doctors and nurses at the hospital that I was not hungry every 3 hours.  I even tried sleeping as long as I could so they would not wake me up because I was just not hungry.  So when I came home mommy and daddy solved that problem.  The only thing that I have to do now is to start crying and scream real loud and they come running with a new bottle full of milk.  It is an amazing system!!  I still have not perfected the drinking from the bottle though.  I have been growing up so big that they keep putting more milk in that bottle! 

Right now when I scream and they come running with a bottle it has 130 mls in the bottle.  I have learned quickly from my daddy that when you order a drink you are supposed to drink every last drop of what you ordered.  In fact, daddy has super special bottles that are shiny and silver.  I even think they have mountains on them!  But the best part is when he screams and cries for another bottle -- mommy doesn't come running at all like she does for me!!  Hahaha daddy!!!

Daddy and I are in a bit of a completion right now though.  He showed me how he drinks all his bottle, so I showed him 5 times already how I drink my entire bottle and do not even have to use my feeding tube!!!  Mommy keeps talking about wanting to pull the feeding tube out and let me really show daddy how its done. 

She don't think she knows how competitive I am, so I think tomorrow I am gonna have her bump the bottle up to 150 mls and see what happens!!!  LET'S GO!!

My brothers are super funny too!  I love hanging out with them because they make me laugh like crazy!  Sometimes it is just me and Mason and he likes to sing to me and we play with my toys by the Christmas tree.  Tonight they had a real fun time while they were taking a bath.  I was soo jealous!  Uncle Matt helped to put them in the bath and when uncle Matt walked out of the room for a minute Mason (that crazy guy) jumped out of the tub and locked the door to the bathroom.  I could hear him and HEY YOU in there splashing around and having so much fun!! 

Mommy went to see what they were doing and she was surprised when the door was locked, but I saw Mason do it.  She could hear how much fun they were having -- even with the door closed! 

Once Mason came and opened the door mommy's voice got really loud!!  She must have been really excited to see how much fun they were having.  Again, I got really jealous!  But then I heard mommy yell for daddy and say "Bring some towels - NOW"!!

I guess Mason and Baby Ry Ry were spraying water all over the floor, walls, ceiling, everywhere...  Mason was actually out of the bathtub rolling around on the floor in the bathroom yelling "WATERPARK, WATERPARK" while Ryan was pouring buckets of water on him from the bathtub. 

I cannot wait until I get to take a bath with them -- these guys know how to have a good time, as I said mommy WAY undersold these two... 

Daddy brought as many towels as he could, but eventually had to go to the garage and get a big vacuum that sucks up water.  He used it on the bathroom floor and then went into the basement and had to use it there too.  That thing was really loud and scared me, I did not like it. 

It is getting late and I just finished my 6th full bottle in the past 2 days, so I am gonna hit the hay.  I hope that if I keep drinking the full bottles that mommy and daddy will take this feeding tube out by the weekend. 

I can do it, I know I can... 

Saturday 12/13/14

The last two days have been nothing short of wonderful!   Truly feel like Christmas came early this year – and Mason really believes that Santa brought Ava home to us.  We have had a house full of family – Nana, Mimi, Big D, Aunt Ben, Kendra, Sarah B…. all helping us to get two months of gear put away and figure out our new normal – with 3 kiddos! 

Big brothers Mason & Ryan have very different views of how this new sister situation should go.  Mason, our tender hearted fella, is always asking where Ava is, brings her toys to look at and sits close to her so he can “chat”.  Ryan on the other hand, well we can say piss and vinegar has gone to a new level.  We are not only in the phase where “no, Mommy” is his favorite phrase but he has taken to running in the street, playing with outlets, and raiding drawers for items such as hairspray and butcher knifes.  Oh yeah, definitely caught him with the butcher knife in the kitchen.  Talk about heart attack!  Matthew and I are meeting him with some serious tough love! 

So a lot of people have been asking - the reasoning behind coming home and how we came to that decision…  I sat with Jill and Liezel this past Tuesday night in Ava’s hospital room – crazy in this short time I find them friends – who happen to have had a huge hand in saving our little girl.  They explained that Ava is now really like any other 2-month-old baby.  Yes she has serious concerns with eating and we need to be really cautious with keeping her away from germs – but the latter is really every baby.   The feeding aversion is scary as I said before; it is so unnatural for a baby to not want a bottle.  But both nurses were very confident that Matthew and I could handle the NG tube on our own and in the end Ava would actually be much more successful in her own home.  One of the largest reasons is that we would wait and feed Ava when she was actually hungry – novel idea!! 

Unfortunately due to the structure of a hospital they require her to be fed on a pretty strict schedule – even going as far as waking her from a dead sleep to feed her… and in our house we live by the phrase, “never wake a sleeping baby!”  Seemed pretty cruel to me! 

In the last two days Ava has actually gone from eating about 40mls to about 50-60mls per-feeding by mouth (which we call “PO”).  She tells us that she has had enough in a couple of ways – playing with the bottle, “shutting down,” which looks like she is sleeping but it is a fake out or she just screams at us.  We have made a goal of trying each feed for about 45 minutes.  Once she is done we hook her up to the NG tube.  They have taught me to do everything she will need in regards to the NG – from programing a basic feed to replacing the actual tube that runs from her nose down to her stomach.  There is a lot of comfort in knowing that she does take over 50% of her feedings from a bottle at this point so in the event she pulls the tube out it is not an emergency to get it back in. 

The plan going forward is to continue with the feeds and closely track/journal her progress in regards to feeds.  We are roughly noting her feeds, BMs and sleeping to see if there is any trend for best feeds/worse of the day.  She will also start taking a Breast Milk Fortifier, which will help her gain a little extra weight for when we do start weening her off the NG.  Doc wants a bit more weight on her than normal so that we have a little wiggle room.  Just like all of the oxygen, nitric and drugs we will very slowly take away the NG but we need to get her PO percentages a bit higher first. 

We are so grateful for the outpouring of well wishes since we have been home!  Can’t thank you enough!  XOXO

Thursday 12/11/14

Well today was quite a day...

The doctor who kept mentioning the "H" word that made mommy really happy yesterday came in late last night about 7:00 and has some different words for mommy which made her a little upset.

He first sent mommy to the Ronald McDonald house and told her to check out and get all her things packed up because when she got back WE COULD GO HOME!!!  HOME is that crazy word that was making mommy light up like a Christmas tree!!!  

So when mommy came back she was told that the doctors did not give me a hearing test in the past 8 weeks that I had been in the hospital. 

Now, I have seen mommy cry before, I have seen her get really excited, I have seen her so happy, but I have never seen mommy be so mad and frustrated... 

She looked like if she had a mouth full of nails she would have spit them all over the room!!!!  

She must not have been happy with the doctors who had been so nice to me for the past 8 weeks. I think it was becasue she was so happy when they were talking about going home, and now they were telling her she had to stay another night andvshe had to sleep in the room with me -- not all that bad in my book if you ask me!!!  

Being our last night in the hospital I tried my best to make sure mommy and I got as much alone time as we could because she has told me about the three crazy boys that will be living with us when we get home -- so I did my best to keep her up all night talking!!  It was great!

The audiologst (yea I know big hospital words) came in first thing in the morning - I think mommy had something to do with that because she has some choice words for the doctors. 

They gave me a hearing test about 8:00 and before I knew it mommy was bringing in this huge contraption that looked like a pink spaceship!!  She put me in it and OMG is it cozy!!!  

So we were off. My first offical trip in the car, just mommy and me cruising the countryside, not a care in the world...

"Hey damnit -- get in your own lane"!!!! Mommy yells out.

Then out of nowhere it feels like the front and then the back tires of the car fall into a crater!!!  Then again, and again...

I guess we are not touring the countryside -- we must be in Chicago and the DAMN street and sans workers must be on strike, holding out for another .$30/hour and can't fix the DAMN potholes!!!

We arrived safely at home about 10:30 - and I could tell that mommy was very happy again and happy to be home. 

So as much I as liked spending time alone with mommy, daddy, nana, mimi, and meeting a lot of new friends - I have figured out why mommy was so happy when the doctors talked about HOME. 

I met my brothers, daddy was there, nana was there, mimi was there...

This is why mommy was so excited - I am home.

Wednesday 12/9/14

So today I got to spend almost the entire day with a lady that calls herself Mimi and my mommy!  We had fun in the early morning but then I heard one of my doctors come in and he said a word I had never heard before -- I think it started with an "H", but I could not make out what he said. 

Whatever he said - that word made Mommy and Mimi super happy and we played the rest of the day lauging and smiling and talking about my brothers Ryan and Mason. 

There we a lot of people that came an visited me throughout the day and they were all very happy and smiling too saying they were gonna miss me!!  

We had so much fun!!  

I sure hope that that doctor comes back again tomorrow and says that "H" word again because it made my mommy and Mimi so happy!!!