Tuesday 12/9/14

Oh hello again!  Been a few days!  We will start with the med report... Ava has been off all narcotics for almost a week now and no longer showing any signs of withdrawal.  Just yesterday they switched her feeding on demand which is roughly every four hours.  This has made a huge difference in her desire to want to take a bottle.  Her PO (by mouth) daily percentages have jumped from around 20% to high 30%.  

My elves showed up this week!  Claudie Aunt Ben and Marsha helped me deck out the house for Christmas.  Looks so awesome!  

Mason & Ryan have been a force lately.... The normal 2 & 4 year old stuff somewhat multiplied with Mommy not being around! Thanking Georgie (our elf) up and down.  He has recently spent a over-night at the North Pole having serious talks with Santa about presents for the Hemenover boys.  Mason was very concerned about his absence for a day and has been leaning toward the angelic side ever since.  

One of Ryan's favorite things to do is drive Mason crazy - serious clashing of Mr. Serious vs. The Antagonis!

Ryan, "awwwww Santa, ho ho ho" ... As he goes in for the hug.

Mason, "Seriously, I am not Santa!"

Ryan, "Santa, ho ho ho, hi Santa"

Mason, "Ryyyyannn, stop petting me, it's just me, Mason, your brother!"

Saturday 12/6/14

Keeping us guessing...  

Ava Jane is proving to be somewhat of a diva already.  We have talked about the Tommy Tippee bottle in past posts and we thought that was an answer to some of the feeding issues we are experiencing.  

This week she wants nothing to do with Tommy and only wants the pre-packaged bottle and nipples from the hospital. Needless to say we now have 4 Tommy Tippee bottles waiting in he wings for her to change her mind next week!!  

I mean Tommy Tippee is just so much sexier...

Ava had a fee vistors of the past couple days, aunt Kendra, uncle Luke, and Mimi and Papa. 

Insert picture of Luke holding Ava... Wait he was to scared to hold her so you will have to imagine him awkwardly holding a baby like it is a ticking time bomb ready to explode, meanwhile chomping on his signature 18th piece of Orbit gum. 

Ava has definately been getting the platinum treatment -- not only has she been able to navigate the iPad and finish all her Christmas shopping on Black Friday she has also figured out how to get YouTube on the big screen.  She is very partial to the Baby Sounds of the Season.

She continues to do OK not great with her feedings. This morning she took 40 mls by mouth for Jill our nurse. But then turned around at noon and only took 10 mls. She was very tired though because of Luke's constant lip smacking she didn't get much of a nap after her morning feeding. 

There has been some talk about the possibility of us taking her home with the feeding tube still in. All the nurses are very confident that we would be able to manage it properly - although we have some reservations. 

We are concerned about the two other boys at home who might get curious and pull it out?  What if she pulls it out?  What if the pump fails?  What if? What if? What if?

Now of course the nurses would show us how to handle all of these what if senarios, but I could also show somebody how to install a window, or Sarah could show somebody how to paint a picture -- that doesn't mean that something couldn't go wrong when doing it. 

So at this point we have told the docs that we are not intrested in taking her home with the feeding tube until she shows us some more consistency in the amount she takes by mouth. Only Ava can tell us how long that will be. It may by 2 weeks, it may be 4.

When she is ready we will know, thats our job.

In the mean time she and the boys can continue to melt our hearts all she wants with these smiles!!!

Friday 12/5/14

So it has been a couple of days...  

Good to see everyone again!  Our baby girl has continued to be challenging on the feeding front.  She does not seem to be intresred in feeding from the bottle. She taking on average 15-20 mls by mouth every feeding and the rest funnels through the feeding tube.  

She does continue to "root" for the bottle but she just hasn't figured out what to do after that. 

For those of you familer with the Jersey Shore reality show they had thier own acronym for thier daily routine.  GTL -- Gym, Tan, Laundry... 

Here in the NICU we have our our mantra for Ava -- Suck, Swallow, Breath!!!  And around here there is a special Friday event that takes place for all babies who are in the unit -- Foodie Fridays!!

Sarah did her best at trying to pump as much milk as possible, but her boobs were not made for walking...  So we had to find another source. Ava clearly did better on the breast milk than anything else we tried, so we needed to find an outlet for breast milk.

WHO KNEW THERE WAS A BLACK MARKET FOR BREAST MILK!!!

We had a couple friends who recently had babies who were pumping a large amount and had a stockpile of milk. So I loaded up the boys and drove to thier house and picked up the goods.  

They have been a huge help and it helped us to know that Ava did 10x better on breast milk than any other formula. So the next obstacle was where do we find more??  

Meet our newest bestest friend Kayla!!  

She is a hairstylist from Colorado that we found through a breast milk bank.  She has recently had a child and produces over 100 ounces a day.  Couldn't help it but this is what comes to mind...

She sent us a motherload of breast milk yesterday that will last us about a week and a half.  She deep freezes each bag then ships it in an insulated box with dry ice.  The dry ice keeps everything frozen for a maximum of three days when it is cold through the winter, so shipping costs are not outragous. 

Ava is taking to the breast milk better already and in a much better place.

Sorry for not posting any updates the past couple days, we have been trying to figure out how the whole breast milk situation was gonna work out. 

But we do have a very happy little girl and she continues to trend in the right direction!!

Tuesday 12/2/14

"Seriously Mom, I am a city girl!"

After many phone calls between Riverside, our pediatrician and the insurance company we have come to the conclusion that we are going to keep Ava in the city for now.  We came to this decision based on a few thoughts... 

Comer's provides an environment that allows her to rest peacefully and to feed without distractions.

If we were to send Ava back to Riverside she would be placed in the gen pop with all of the other babies.  With all of the distractions and commotion of a nursery I feel that this could possibly cause a set back in her eating (her best feedings are with little to no distractions, noise, etc).  

Plus she only would get 20 mins in the yard everyday to hang with Red and Andy. 

Also, Riverside does not have all of the resources for infant care that Comer's provides.  Most importantly the physical therapy and speech therapy that Ava is receiving on a regular basis - speech comes daily. We were pretty confused the first time they said they were gonna send a speech therapist to meet with us too. She works with us and Ava to show us how to support her jaw, how to hold  the bottle, what signs to looks for when she is ready to eat. So not so much actual speech related but more actions. 

And what made the final decision is our insurance will not pay for a non-emergency transfer.  Although not as much as a helicopter ride (a full year of tuition at a private college).... It is still really pricey.  So although it would be really nice to be closer to home looks like we have a while longer at Comer's.

I am still staying at the Ronald house for now.  It still proves to be a wonderful escape at the end of everyday. So thankful to all of the friendly and now familiar faces I see here everyday.  

As far as Ava eating today- the bottle is a much better fit.  However she is having issues with the formula/spitting up/irritated gut.  We are not sure if it is due to the narcotics, formula intolerance, constipation or from reflux.  Or a combination of the three - which is the most likely answer.  

She is visibly uncomfortable and pissed when giving her the bottle.  She is rooting and sucking on the pacifier really well but knows our tricks now and screams when we put the bottle to her mouth.  She still seems to react better with breast milk but I just don't produce enough.  It's a puzzle for sure.... 

The final day of the morphine ween is today.  Tomorrow will be her first day without any drugs in her body at all!!  We have fone from having 13 different IV pumps down to none!!  

Picture from 10/23/14 (6th day)

Since she is a full term baby they could hang on in her system for a couple days after but that we should start seeing true sleep patterns and less/no side effects from those drugs within days.  She has had a hard time with the #2s (that means poops in our house) which also has made an impact on the feeding.  These narcotic drugs tend to slow those systems a bit so maybe some of those issues could be resolved. 

Matthew and I are going to switch rolls toward the end of the week.  He is going to head up to see his baby girl and I get to hang with the dudes.  Going to set up Christmas on Thursday- probably one of my favorite things to do all year!  

Speaking of Christmas... Georgie made his appearance today for the holiday season!  The Spidey-man crew at our house did not know what to think... maybe even felt a little threatened!  Mason had a serious talk with them (with his very big eyes and lots of hand talking) explaining who Georgie was and that he was definitely "not one of the bad guys."  Georgie has been with us for a couple years now but Mason is really concerned this year already about making sure he is really extra good!

And for those who know the real Georgie Hemenover we like to think that when our Georgie comes around each year how much he would have loved to know all his great grandkids. 

Just not sure if there is enough "Hey there sweetie" or "Hey there buddies" to go around!!!  

And yes, we do own five of the same action figures.

Xoxo

Monday 12/1/2014

I can't believe it is December 1st!  Ava is almost 7 weeks old and she is weighing in at 10lbs and 2oz tonight.  

The nurses have warned us about this latest challenge.  Visibly- Ava looks amazing.  Honestly other than the NG tube and the small physical delays - you would never know anything happened to her!  But- she doesn't like to eat!?!!  At this point I question if we are related - she does not know what she is missing!  

Happy to say that the new bottles have made a small improvement.  For all those moms out there that are looking for a bottle - Tommee Tippee - where it is at.  She had small improvements though out the whole day eating about 15-20mls for most feedings.  Then she had me in tears eating 68mls at her 6:00 feeding!  Best round yet!  

We will hear more news about the possibility of transferring back to Kankakee tomorrow.  The case worker is checking with insurance.  The Docs here are checking in with Doctor Batish our Pediatrician in Bourbonnais to make sure it is a go.  Could happen as early as Wednesday IF it is a go...  This is still not definite.

Ava and I got to spend most of the day with the future Aunt Ashley.  Was great fun looking at wedding dresses and chatting about the big day!  

This is what Ava wants to do during most feedings...

Xoxo

Sunday 11/30/14

Ava is not cooperating as well as we would like on the feeding front. She is only taking anywhere from 5-20 mls per feeding by mouth and the remanning portion has to be given via the NG tube. 

She is still on Morphine but a very very small amount which is given every 12 hours now instead of every 6.  The wean schedule to get her off that is set to go until this Wednesday.  And from there we have been told that they need to monitor her for at least 72 hrs after she is off Morphine to ensure she doesn't have any withdrawl symptoms.

They have been trying everything under the sun, breastmilk, Isomil, Prevacid, rice cereal, regular Similac, and combinations of all of the above. She just doesn't seem to want to latch on and suck. Which we find strange because she latches onto the pacifier and sucks on itnlike a champ Sarah is bringing a couple different nipple types to the hospital this afternoon to try a different approach.  Fingers crossed!!

There has been quite a bit of discussion about possibly transferring her back to Riverside until she gets the whole eating from the bottle figured out. We have come to find out there are quite a few channels and approvals that have to take place before the transfer is approved. We are hopeful that it may happen this week, but it is ultimately up to the doctors here as well as at Riverside.  There are still many questions that we have before this would happen which we will get to address with the case worker Monday b

We have discussed with the nurses and doctors the possibility of bringing her home with the feeding tube still intact and they are very confident that we could manage it and it is not totally uncommon, but we have our reservations about doing so especially with Mason and Ryan trying to adjust to her being home.  So it is not our ideal senario, but I believe they are trying to prepare us that it is a possibility. 

It is much quieter in the new room on the 4th floor!!  Which helps Ava a lot by not having to many distractions and buzzers, etc...  Much more comfy for Mom and Dad too!  

Friday 11/28/2014

Don't tell Daddy!!!!