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!!!!  

Thursday 11/27/2014

Happy Thanksgiving!!!  Hope everyone enjoyed their days with family and friends!  Ava and I spent the day with Nana... We chatted a lot, she took her first sink bath and mom and I ate dinner together. Wonderful day!  Matt hung with the boys-lets just say I think he got the short end of the stick. Both boys are feeling much better- Ryan a little much so.  Mason was even asking for "alone time" from Ry by the end of the day.  

The news from Ava's docs gets better and better everyday.  She was upped to twice a day Prevacid today and will be completely off Morphine as of Saturday.  She is weighing in today at 9lbs 15oz- steadily gaining each day.  Best news of all... They want to try and transfer her back to Riverside sometime next week!  With only her feeding issues to resolve they feel that it would be more beneficial for her to be close to home!  We are thrilled with even the thought of this!  

Couldn't be more thankful for all of the wonderful people in our lives!  Happy thanksgiving!  Xoxo

11/26/2014

And we have another new abode!  

Ava is truly living up to her namesake and talked her way into a free upgrade -- the penthouse suite - a private room!  

The new room features west facing windows which overlooks the park where the 2016 olympics were to be held if Chicago would have gotten the bid.  A  jumbo couch and our very own private bathroom.  So I am going to get booted out of the Ronald house now that Ava has this private room.  Not sure how I feel about it - the bathroom does not have much room for my product, lol. 

Really I am so happy it's a private space that isn't so intense all of the time. The NICU is loud and busy no matter the time of day.  I feel like we will get a better idea of what Ava is like here and will allow her to rest without constant interruptions. 

Our girl had a good day.  We have at least one more day with the morphine...

We really want her to kick it!  All of those narcotics make her so drowsy which then makes it impossible to feed her.  They require that she gets fed every three hours- no matter what.  So if she misses a feeding because she is asleep - it gets fed through her NG tube and she misses out on that practice by bottle.  

We had a fun day....iPhone photo shoot was the highlight! 

On the home front the boys have locked themselves in the house.  Ryan's cough bug has turned into a sinus infection and Mason has the starts of the flu this morning.  It was a day on the couch for them!  I don't want to be catching any bugs so we have decided that they are staying at home for turkey day.  I am going to spend the day with my Mom and Ava.  Poor Matthew is praying he doesn't get the plague!  

Tuesday 11/24/14

BREAKING NEWS!  Ava has been moved to the penthouse!!! She went from the NICU (2nd floor) to the TCU (4th floor).  Big talk around these parts!  Her new digs feature a window, a door we can close at our discression, a large TV for mommy and 6 less roommates - we still have one friend.  The TCU -transitional care unit - is one step closer to home.  It's where babies go to grow and feed without any crazy IVs - which Ava kicked her last central line on Sunday!  The rooms are private or semi-private and parents can stay with the babies once they get a private room- Ava is on the list for a private but for now shares.

Our main focus the last couple of days has been working with speech and physical therapy. Speech/eating is our mail hurdle to hearing the H-O-M-E word - not allowed to say that bedside.  Crazy to me how the doctors and nurses avoid it so easily.  

Her PT is going well but say that she will need to continue services for quite some time at home.  Her right arm and shoulder are somewhat lazy and she needs constant reminders to move one or both of her wrists (they fall limp).  All of this will improve over time.

Have had so many great visitors the past couple of days... Big D, Amy, Terri, Mandy, Alison!

  

 

Saturday 11/22/14

We need to talk about hair loss...

A growing pandemic across the entire nation men, women, everyone!!

Yet every now and then a brave sole emerges from the crowd. A person who wants to stand out from the rest. Someone who doesn't have a care in the world for what is "socially acceptable".  

Ava Jane is that infant.  She is breaking the mold and writing a new chapter in the world of fashionable hairstyles.  Ava has created an entirely new movement in how and how not to wear your hair as an infant. 

Ava presents...  THE CULLET.

Its smooth clean lines are a mixture of the once famous "Mullet" created by the dashing rockstars of the 1980's, and the sleak look some call "cradle cap". 

She is the envy of all the NICU. At the most recent and world renouned Comer NICU fashion week we we caught up to Ava asked her "What was her inspiration for this new look?"  

She said "Even from an early age I have noticed there are many people in my life that are bald and many that have hair. 

I needed to find that middle ground that allowed infants everywhere to be free of all these stereotypes that babies loose their hair after birth.  So I created the Cullet. It embraces my inner babiness, and says to world here I am."

Ava has been trully a trendsetter in the NICU and around the world. 

She did eat 25 mls from the bottle today for Sarah. She did an excellent job keeping it down for about an hour then she puked about half of it back up. We tried again at 5:00 and she was not intrested in the bottle at all. She is still on a very small dose of morphine every 4 hours.  The feeding from the bottle is proving to be harder than we expected but we are determined to make it happen!  

Friday 11/21/14

Bye bye Fentanyl!!  Hellloooo Morphine!!!

So today we made a HUGE jump Ava kicked the Fentanyl pain medication but picked up another. The idea of changing her from one drug to another is that Morphine is not as harsh as Fentanyl. She is still on the IV Morphine, and will continue to wean down until she can just handle the Morphine as needed by mouth.  

Ava is still having some difficulties taking to the bottlefeeding. She loves sucking on the pacifier and she latches onto it very good. She just cannot seem to figure out the bottle. She took about 12 mls from the bottle today but the rest of her feedings came from the NG tube.  Ava got the full Nana treatment today -- had her all to herself!  

Matthew and I have had a fun couple of nights at home with the boys.  We had what Mason calls "family night" last night, which consists of a Disney movie, popcorn (with butter of course), then plant on the couch until its time to go to bed.  

Ryan has a bit of a cough and decided to join us in bed last night about 12:45. And he does not go back to sleep once he is up!!  So we fought with him on the floor next to the bed, in the bed, under the covers, ober the covers -- finally about 1:30 am Matthew took him downstairs. I did not realize it until later this morning, but Ryan did not go to sleep with Matthew on the couch until the second round of Frozen -- about 4:15.  And oh yea -- Matthew alarm goes off at 5:00!!  

Just planning for when Ava comes home I guess!!!

Wednesday 11/19/14

It is mind boggling to me that I put a bottle to Ava's mouth and she doesn't know what to do with it.  You would think that natural instinct would never go away.  But her mind doesn't automatically suck, swallow and breath like most babies. She lost that ability being so sedated and paralyzed for three weeks.  So with the Speech Therapists help I am actually trying to teach her this life skill. 

To clarify, the only tube on her face is actually the NG tube- a feeding tube not an oxygen tube.  When I feed her through a bottle they give me small amounts to try- anywhere from 10-40mls (30mls is one ounce).  Sometimes successful others not so much.  The rest of her milk then gets fed to her through the feeding tube so she still gets the nourishment she needs.

The end goal is to get to her "full feed" level by mouth.  At this weight that would be 75mls by mouth every 3 hours (about 2.5 ounces).  The total feed must be completed within 30 minutes otherwise she is using more calories trying to eat than the feeding is giving itself.  Some of the nurses say the process of relearning to eat is like a hard sports practice to them- I believe them after I see how much she sleeps afterward.  A lot even for a baby!

A couple people have asked about Ava's "stats" as far weight.  As of one month she is actually just above her birth weight, birth weight: 8lb 10oz and now: 8lb 14oz.  The doc explained they only view her as 10 days old because this is how long ago she was taken off the vent.  In reality her current weight would make sense for a baby that was 10 days old- they loose a little bit then gain it back.  They will look for her to gain about an ounce every day going forward.  I haven't checked her height in a while- that will be on the list for tomorrow.  

So as far as Ava's progress.  Weening still going strong but this feeding thing is throwing her for a loop.  To top it off, she definitely has reflux to.... I got covered today and Loretta, her Nurse, did as well.  She even had to change clothes! 

Regardless she is beautiful!  

I was able to see Ava's Big Brother's today!  My Mom brought them up and the Ronald house sent us to the Shed Aquarium for a couple of hours.  Ryan sounds so sweet saying "feeeeish" when we walked up to every tank and Mason was taken by the stingrays in the big tank!  It was so nice to see them!

Tuesday 11/18/14

I was a fabulous day!  Ava was bright eyed most of the day, showed no signs of concern in terms of breathing, weened the Fentanyl and ate about an ounce from a bottle - twice!  And to top it off we had some visitors!  Thanks for making the trip Mimi & Jen!  

Also got a love note from cousin Kate that we hung up by Ava's bed.  Thank you Kate!  Xoxo

Monday 11/17/2014

Wow!  I cannot believe Ava is 1 month old today!  Our girl has overcome so much in such a short period of time- I think it's only a preview of the kind of spunk she is going to have.  I am so proud of her!

Spunk...

Health wise today was ok.  On the plus side they did ween to .8 on the fentanyl and she ate 10mls from a bottle- wooohooo!  This time she actually swallowed rather than drooling most of it out- HUGE success! 

On the not so good side Ava was tachypniec again- this is when she looks like she is running a race when at rest. Nothing too alarming yet but the docs were keeping a close eye on it because it is not typical baby behavior.  Could possibly be she is just worn out from the weening- at least that's what I am saying for now!

Other than that it was a great Mommy daughter day rocking in the chair.  We caught up on our magazines and watched Scandal together.  Couldn't have asked for a better couch potato buddy!

Xoxo

Sunday 11/16/14

Matthew and I had lots of great chats with Ava today!  Her expressions lead us to believe she is entertained!  

Couldn't resist!... 

Good night baby girl! 

She had a really great day.  They weened to .9 on the Fentanyl and she did so well that they plan to ween again tomorrow.  Feeding went ok today- only a couple pukes.  I will be talking to the nutritionist tomorrow along with the doctors to make a plan about formula, bottles, chin support, reflux, etc...  

All in all a great day!  

Mason and Ryan woke up this morning after a fun night out at Matt & Amanda's wedding dance!  Just a few of the pics Kendra sent!

Saturday 11/15/14

Day 30!!  

Ava decided to make the Comers NICU her own personal Embassy Suites extended stay. 

She has had personal shoppers bringing her itmes to make it feel more like home. She requested a swing because the rocking chair just wasnt enough action.

She got the latest and greatest in bluetooth sound machines from Fisher Price, but is awaiting her new iPhone 6 to come in off backorder so she can download all her favorite nursery rhymes. 

Verizon is telling her that it could be 2 more weeks so Beethoven's 9th and Tchaikovsky's 1812 overture will have todo for now. 

She is a tough cookie and does not let her team of shoppers rest!! The most recent addition is a marine themed mobile which sparks a lot of conversation with the other babies in her POD. She brags about her cousin who gets to swim with dolphins, killer whales, and play with sea lions all day!!

With all of her new gear she still gets plenty of attention from visitors and mom and dad. 

Loretta her nurse today has been a great help. They ran a potassium test this morning and her levels were higher than they liked because the blood was hemolysed which basically means there were micro-clots in the blood. The numbers were 9.1 to start. They repeated by a venous puncture turned out to be 5.1 which is more in line with what they wanted. 

Ava, in true Hemenover form, is eating like a champion. They have upped her feeds to 75mls which they still give through her NG tube (feeding tube) over the course of and hour and a half.  She only had one episode of puking today. They did not ween her Fentanyl today;  Loretta feels that weening that every other day may be the better option. The goal is .1 lower everyday but she doesnt seems to be tolerating it very well - makes her puke more often and stay wide awake versus resting.  The plan is to ween again tomorrow and see how she handles it after a day off. 

Time for shift change of the nurses so they kick is out of the POD. Looking forward to a good day tomorrow with the changes they plan on making!  

 

Friday 11/14/14

A WHOLE DAY WITH MIMI!!!

Ava got the full MIMI treatment today.  I spent the day hanging with the boys, restocking our house with the basics and figuring out what clothes actually fit right now...  

Ava has been doing well and she is taking 70mls at each feeding.  They gave her one feeding this morning starting with the bottle - she took 10mls of the 70mls she was supposed to have. She is trying to figured out how to suck on the bottle nipple, but just hasn't gotten the swallow part down yet. Our nurse today - Loretta - ordered a round of therapy sessions with the speech therapist which is able to help her figure out the swallowing. 

Ava also doesn't seems to be taking to the Fentanyl weening schedule very well. She gets a little fussy and pukes a bit on the days they ween the drug down so Loretta has told this to the docs and they are evaluating the schedule to see if they want to make changes or not tomorrow.

From what we are told Mimi and Ava could have possibly worn the rocker out on the chair next to Ava's bed!!!  I am sure it was a very good day!!  

Mimi mentioned she will be contacting WillyBea for some new head bands for Ava -- just like the boys, she is loosing most of her hair! 

Xoxo

Wed 11/12/14 & Thur 11/13/14

Wednesday 11/12-13 

Was a bit of a rough day for Miss Ava.  Her voice is definitely working (music to my ears) and we heard lots of very loud crying!  We came to the conclusion that we are weening the narcotic drugs too fast. ... Had a really big jump the day before and probably should have held off.  

She went up to full feeds and I fed her 5 Mls from a bottle!  First time!  

Neuro stopped in to chat about her official MRI reading.  She did have a small hemorrhage in the back left of her brain and has a small cyst in the front right.  At this point they do not feel either are presenting with side effects.  They will do a repeat MRI at 3-6 months.  The hemorrhage is typical of babies that have respiratory distress like she did.  The cyst he said could just be her brain - everyone's is a little bit different.  He would hope that they both absorb over time.  Or possibly the brain will just grow around the cyst.  

All in all he said that he feels she won't have any major problems but she might not turn out to be an Einstein.  .... We don't need and Einstein anyway!  

PT (physical therapy) was also in to give an evaluation.  She did an overall assessment and said that she will continue to come about 3 times a week.    

A few concerns she had- her wrists are slightly limp.  This is pretty typical for what happened to Ava. Also very tight through her back and tents to keep her arms pulled back to her sides- this position helps babies keep their chest open making it easier to breath.  Both are also typical.  She gave me some ideas on what we can do to start working with her when she is awake.  She said the more we work with her the better, so we are moving up to the 7oz Dumbbells next week!! ;)

We are also currently working with Mike Neumann who is developing an infant CrossFit training system that is intended to strengthen the core and maximize strength in under developed joints for infant and toddlers.  He has asked Ava to the be spokesbaby for the new franchise opportunities he will begin offering in the spring of '15 -- Fit Baby U.  

Dave & Ashley visited! 

Thursday 11/13/14

Ava was cooing at me and all sorts of happy.  Jill was working and I am thrilled she really took the time to investigate her feeding - and agrees she definitely has typical baby reflux.  Ava timed it just right for the docs to see on rounds and they signed her up for Prevacid and rice cereal in the bottle.  They also decided no weeing today on the fentanyl but they are aggressively going down on the O2.... Order is for the nurses to get her down to none!!!!  Could be as soon as tomorrow!!!!  Then the only thing left is the fentanyl!  She could possibly even head up to the 4th floor, which is one step closer to home!  So happy!!!

I came home this afternoon and will be home until Saturday morning. Matthew was planning on staying with Ava tonight but after we called and talked to the nurse and found out which night nurse was on he decided to stay home with me and the boys -- so we had our first family dinner at home since the 16th of October    And you can hardly count that because I was having such bad contractions that I can't imagine I was much fun to be around!

Claudie is going to stay the day and night with Ava tomorrow and then we will head back up Saturday morning.   

Ryan wanted to pump! 

 

Please direct all prayers to hopes of the 4th floor!  Xoxo