Thursday, February 28, 2013

1p.m.

I wish I could take away Feisty Pants' gas problems.  She just gets so upset when she's trying to work it out.  I don't like seeing her upset.  It makes me upset.  And now this stupid monitor is making us all upset.  We've had nothing but false alarms from it (or so we think), and it keeps beeping that the memory is full (it records the "events" so the doctor can look at them and see if they're for real) when it really isn't.  And it keeps beeping that Aubrey's heart rate is low when you can look at her and tell she's fine (moving her arms and legs around and awake).   And Adam noticed last night that the feeding pump isn't always giving Aubrey the full amount of food even though it says it is.  I'm thinking maybe that's the reason she hasn't gained weight, so we're going to talk to the equipment people today and try to get it all figured out.

Aside from all the annoying stuff, things are good.  I love just holding her and looking at her; doesn't matter if she's awake or asleep.  I see her little chest rise and fall so rhythmically and and think back to the days when I looked at her through the isolette glass and held my own breath while waiting for her next one to come.  She's come so far and is such a beautiful example of God's grace and provision.  Remind me of this when she's 3 and having an epic tantrum because I won't let her draw on the living room walls with crayons.

I have a prayer request for a friend that I've mentioned before.  Her twins were at University with Aubrey and were moved to MCG/GRU a little after us.  The little boy has gone home, but the little girl is still in the NICU with lung issues.  They put a trach in week before last but her breathing and oxygen levels have not gotten any better.  They did a CT scan and found that she has very little good lung tissue and are now looking at lung transplants.  I can't imagine the fear just that phrase has instilled in the little girl's parents.  Please pray that little Emma will get better or that a solution will be found for her, and for peace and comfort for her parents.

-Keli

8:30p.m.

Well, we found out from the equipment company that the pump we have isn't supposed to be used for thicker formulas.  Nice.  We've had to restart it several times to make sure Aubrey got her entire feeding.  The pediatrician still wants us to come in tomorrow for a weight check, but we'll explain what's been going on.  Aubrey took about half her feeding from a bottle twice today.

Adam had to go do some work stuff this afternoon, so it was just Aubrey and I together all day.  She was a sleepy head for a lot of the day, but we had some time to talk and sing and hang out.  Who came up with this idea that you're supposed to sleep when the baby sleeps?  If you do that, when do you do everything else like laundry and exercising and making dinner and picking up the disaster that the house has become?

-Keli

Wednesday, February 27, 2013

12 noon

The appointment with the pediatrician went well.  Aubrey hadn't gained any weight which she didn't like, but she said she sounded and looked good otherwise.  She said to continue trying the bottle feedings and to let her try them if she still seems hungry after a tube feeding.  She gave us a referral for speech therapy; she also said she would rather us work with the ones from MCG/GRU because they know premature babies better than a private person probably would.  She's going to try to get in touch with them for us since they won't seem to call me back.  We asked about 50 questions and found out that the majority of what we're worried about with Aubrey is normal.  Good to know that we're just regular old worried first time parents.  She wants to see us back on Friday to weigh Aubrey and see if she's gained any.

-Keli

1:15

Dr. Leverett called me and said she talked to speech at MCG and they would be calling me.  I tried not to hold my breath.  Well, about 5 minutes later they did, in fact, call me.  They said that the order had been written as an inpatient order instead of an outpatient one, or as if Aubrey were still in the hospital.  That's why they didn't call us.  So, they got that figured out and we're going Monday to see the speech therapist.

-Keli

clean baby

sleepy clean baby

8:30p.m.

We took the new stroller out for Aubrey's first walk around the neighborhood this afternoon.  Aubrey was unimpressed--she slept the entire time.  Then she had a bath and proceeded to sleep through her first manicure (or me cutting and filing her fingernails while she was on my lap).

-Keli

Tuesday, February 26, 2013

5p.m.

I'm late, I know.  Today's the first day since we've had Aubrey home that I've felt really discouraged.  She just can't seem to get the hang of the bottle, nor does she really have the "want to."  She'll take some of it but then clamps her gums together and gets mad if I try to get it back in her mouth.  The speech therapist at MCG/GRU told me she was going to come and teach me what to do while we were there.  She never came back.  When we were discharged they told me speech therapy should call us for an outpatient appointment.  Never heard from them, so I called yesterday.  "Oh, she's not here today, but she will call you back in the morning."  It's way past the morning and I never heard from her.  I really thought Aubrey would have gotten it by now, that the whole bottle thing would have clicked for her.  I don't know what to do to help her get it, and I'm not getting any help from the hospital. 

We talked to the pediatrician today about all of our questions--her bottle feeding, the constipation, the bad gas...we were supposed to go see her Thursday anyway, but she told us to go ahead and come in tomorrow.  I'm glad.  If there's anything we can learn to help our sweet baby, we need to know it.  She's had a tough enough life already and I don't want to make it harder for her.

She's been sleeping a lot today.  I'm really hoping she's not getting her days and nights mixed up.  She stays awake so long in the evenings (like until 12 or 1 a.m.) because she's so grumpy, but it's nigh on impossible to keep her awake when she's tired.  

-Keli

Monday, February 25, 2013

10a.m.

After three full diapers in a matter of a an hour or two, it's safe to say Aubrey's constipation run is over for now.  She was still uber-fussy last night, so I talked to some reliable NICU nurse friends (thank goodness for those) and we worked on remedying her tummy troubles.  She's been sleeping soundly since about 4 a.m., which, coincidentally, is when she had her first full diaper. 

She's still so noisy and wiggly when she sleeps.  Sometimes I think she's about to start wailing--she tunes up to cry and I peep over at her and she's still asleep.  How does she sleep through her own crying?  And that squeak of hers--good gracious.  I can hear it upstairs when she gets going and I have to keep some sort of white noise going so I can sleep.  No idea how she can keep snoozing through that either. 

Considering how noisy and smelly and how much work babies are, it's a good thing they're cute. :)

-Keli

I placed her in the bed with her feet towards me...she flaps her legs up in the air and scoots herself around.

12:15p.m.

I finally got hold of one of the nurse practitioners at MCG/GRU/whatever that I like and asked him about feedings.  He said, "no one gave you a feeding plan for her?"  Um, no.  He said that she should go up by 5ml every Monday, and go ahead and add a bottle feeding to get to 3 per day.  He also said if she was still hungry/fussy after a tube feeding to put just a little in a bottle and give it to her and between the sucking and the food that would probably satisfy her.  I don't like her to be hungry!

-Keli

Sunday, February 24, 2013

12 noon

Aubrey has traded her feisty pants for her grumpy pants since about 7:00 last night.  We know she has gas problems, so we've given her a couple of doses of the Little Tummys gas drops hoping that would help.  I'm wondering if she needs to go poo since she hasn't done that in about 36 hours.  She's just fussy and gets upset while lying in her bed and flails her arms and legs around.  She's sleeping pretty well right now, thankfully, and I'm not even holding her.  I thought swaddling her might help, but she gets her arms out of EVERY swaddle blanket/sack/thingy I've tried.  She's a baby Houdini.  Duct tape, maybe?

-Keli

 7p.m.

She's been sort of fussy all day.  She took a couple of short naps during the day.  I still think she might be constipated, and we're working on that.  I also think that at the end of her feedings she's still hungry.  When she took the bottle tonight, she finished it but was still smacking her mouth and chewing on her hands when she was done.  So I waited a few minutes and tried her with the bottle again--she took another half ounce.  I hate that we are supposed to wait for the "ok" from 2 or 3 different doctors before we can give our child more food.  Honestly.  I'll try talking to one of them tomorrow and see what they say.

Adam's mom came by to see the baby and brought us lunch.  Food is always appreciated. :)

Saturday, February 23, 2013

11a.m.

Little miss was so sleepy yesterday evening...until about 10p.m.  Then she was awake until about 1a.m. apparently.  Poor Adam.  He sent me to bed at 10 and stayed up with her until he got me up to relieve him at 3a.m.  He's still asleep now, but I'm about to go wake him up because I NEED a shower.  Like, NEED.  It's pretty dire.  Anyway, Aubrey is still a little grumpy, but I'm thinking she's still not over her shots yesterday.  And she has some pretty audacious gas.  Poor kid.  More like her dad than we thought. ;)

-Keli

5p.m.

Aubrey got to meet her cousins today!  My brother and sister in law and my parents stopped by for a few minutes so the boys could see Aubrey for the first time.  Aubrey slept through most of it, but Ephraim (5) and Josiah (18 months) seemed to like her a lot.  Ephraim just wanted to touch her, and Josiah kept pointing and saying, "baby! Baby!"  He liked to touch her hair too.  It was good to see all of them as I hadn't in a while.  We've basically just been lazy around the house today.  It's yucky outside, so it's a good day to snuggle a baby.  Well, it's always a good day, but you know what I mean.

the boys meet Aubrey

Aubrey sleeps through the meeting.

They seem to like her anyway. :)

-Keli


2300 hours. 11 pm

Aubrey lays in my lap and goes to sleep.

But she got fussy when I came time for midnight meal. So much so I had to put her in the car seat and take her to the kitchen with me to get her food ready. And it took a while to change her diaper because she was crying so much.

Precious.

Adam

Friday, February 22, 2013

1p.m.

We survived another night and both got a little more sleep, I think.  Aubrey, however, decided to stay awake from about 9p.m. until about 1p.m.  Mama wasn't thrilled, but that's ok.  We had to work out our schedule this morning to make it to the pediatrician's office at 10, so that required moving the 9a.m. feeding up some and actually getting in the car by 9:30.  We left at 9:34, so I think we did pretty good for our first outing with a baby.  Aubrey slept the entire way there and was very good for the doctor for the most part.  She didn't appreciate the thingy in the ears or the bright light in the eyes and tried to push the doctor away.  The doctor said, "wow, you're strong."  Yep, she's been pushing doctors and nurses off of her since she was less than 2 pounds.   She's had practice.  She did not appreciate getting her 4 month shots.  She cried like a "real" baby, especially when the nurse made her bleed.  Way too much blood for mama or daddy's liking too. :(  We snuggled and she slept on the way home.

She realized it was a little past feeding time when we got home, so she told us to hurry up and get the food going.  We had to snuggle for a while longer since she had a tough morning, but now she's sleeping.  Her parents need a little nap too.

-Keli

8p.m.

Adam got a nice long nap this afternoon so that he can stay up with Aubrey first tonight.  I slept for about 30 minutes seeing as she was sort of fussy this afternoon.  She has slept most of the day--I guess that happens after getting vaccinations.  I hope she still sleeps tonight after snoozing the afternoon away.

ready to go to the doctor

Adam said to tell y'all that he likes having Aubrey around.  He's sorta glad she's home.  Me too.

hanging out at home

Since we've brought Aubrey home, I've realized that I'm still grieving the "normal" pregnancy and homecoming that I wrongheadedly assumed I would have.  I know bringing home a newborn is hard anyway, but I have to wonder if this would feel easier to me if we didn't have to bother with having her still attached to a monitor or have to deal with the aggravation of the feeding tube. Everything is still so...abnormal.  I can't roll out of bed at 3a.m. and feed her if she cries and be done in 20 minutes.  It takes 20 minutes just to get her food ready, then an hour later you get back up and it takes 20 more minutes to clean up.  Then an hour and a half later you start over.  She can't wear many of the cute little outfits she has because of all the wires still attached to her.  I don't know. I sound like I'm just complaining about little stuff now, but I guess it's just disappointing to me that nothing, even now, has gone as I thought it would when we got a positive pregnancy test.  Don't get me wrong--I'm ecstatic that she's home and I can hold her anytime and take care of her and learn all her noises.  I'm SO happy to have her home.  That totally outweighs any negative feelings I have.  She's so beautiful and perfect, even when she's grumpy after her shots. :)

-Keli

Thursday, February 21, 2013

12 noon

Sorry for the late update.  Things to do, you know.  Our first night home, both of us stayed downstairs and "slept" on the couch so we could get up and do feedings (you sort of need the sink and counter space to do it).  Last night, Adam sent me to bed upstairs about 11 and he did the midnight feeding and stayed downstairs with her until I got up to do the 3a.m. feeding then he went upstairs to sleep.  That way we both got a few hours of uninterrupted sleep.  It was pretty nice.  We're still just trying to figure out the best way to to do things and what she likes and doesn't like.

I think we finally got all her medications figured out between the hospital, pharmacy and insurance company.  What a pain in the patoot.

-Keli

Wednesday, February 20, 2013

10a.m.

We did it.  We survived the first night.  Here's a rundown: Get Aubrey's 6p.m. feeding going and get her medicines through the tube.  She projectile vomits formula about 7p.m. and seems perfectly pleased with herself.  Aubrey takes about half a bottle at 9p.m.  Is more awake after she stops taking the bottle than when she was trying to drink it.  We put the rest of her feeding in the tube.  She then proceeds to stay awake until about midnight.  The bottom floor of our house is just a big circle, so Adam held a fussy baby and paced around in loops singing a made up, pretty nonsensical (normal for Adam) lullaby.  It managed to put me right to sleep while I was sitting on the couch.  Aubrey took a little longer but finally knocked out during her midnight feeding.  Adam and I sleep on the couch instead of trying to get everything upstairs. Back up again at 1a.m. to cut the feeding pump off.  Back up at 2:45a.m. to get her 3a.m. feeding ready.  Back up at 4a.m. to cut the feeding pump off.  Back up at 5:45a.m. to get her 6a.m. feeding ready.  Realize she has gotten her feeding tube out of her nose in her sleep.  Come very close to dying of frustration.  Try to get tube back in.  Mad baby.  Monitor goes off because mad baby's heart rate gets too high. Tube kinked.  Say a prayer.  Adam tries, gets tube back in.  Start feeding.  Almost back asleep.  Phone beeps with a text.  Ignore it.  Snooze until pump goes off at 7a.m.  Turn off pump.  Adam sleeping, baby wide awake.  Pick up fussy baby.  Baby falls asleep on mama.  Mama manages to lay her down and keep her asleep.  Mama gets to eat cereal.  8:30a.m. get bottle ready for 9a.m.  Baby takes about half of bottle again.  Put rest through feeding pump.  Adam and baby both semi-asleep.  Mama leaves them downstairs and manages to get 20 minutes of exercise in and a shower.  Now, baby sleeping. Mama manages to get eye drops in baby without baby waking up.  Coffee.  Lots of coffee.

this is what I'll be doing today if you need to find me.

Aubrey is such a noisy sleeper!  Her laryngomalacia causes her to squeak on almost every intake of breath, plus she growls, grunts, groans, and sometimes cries in her sleep.  I'm glad we got to stay all night with her over the weekend--that night I jumped up to look at her with every noise.  Now I know that unless the noise continues she's still asleep. 

We'll get the hang of it all.  I think.

-Keli

6:30p.m.

Things have gone pretty smoothly today for the most part.  We just got her medicine and her eye drops in her, and she took her entire bottle!  Yay!  I think the reason she did though, was because we woke her up good fashion by giving her a bath and a diaper change first.  She usually has the problem of getting sleepy while taking her bottle, but she does not approve of baths and therefore gets mad enough to be wide awake.

she likes the swing

that's a yawn, not a cry, I promise

 

Tuesday February 19, 2013

1000 hours.

She had a good night as did her mommy and daddy. We ran our last errands that we needed in preparation of not being able to leave the house for a while. From now on we have to arrange errands and dr appointments around the 3 hour charge on the monitor, feeding every 3 hours on the machine and other medications. But it's worth it.

We just arrived at the NICU. I will be posting our schedule as I am able. We have lots to review this morning and more stuff to practice. Fun filled day.

I have arranged a small surprise for Keli, but the rain may dampen it.


Adam


1420 hours

Discharged at 2:05 and getting baby packaged up ready for transport home!! Yay!

Adam

her going home outfit--I figured she's been in charge since October 20. :)

1600 hours. 4 pm

We are home with Aubrey. Our family under the same roof. It was a flurry of activity for a little while as we unpacked and set up feeding machine to start mid afternoon feast.

More later as we can.

Adam

Packaged, ready for transport.

3p.m.

Well, Aubrey is home.  With us.  All in our own house.  Finally.  She slept all the way home in her car seat.  We got everything inside and got her feeding hooked up and going, got her in my arms and she went back to sleep.  Then I laid her in her napper and she kept right on sleeping.  My mom went and picked up all her medicine at the pharmacy and brought that to us along with dinner.  Thank goodness for my mom. :)  It's now getting on towards 6p.m. so I need to go get her medicines ready to go in with her next feeding.

-Keli

A brave new world!

First family picture taken at home. You can see the monitor over Keli's shoulder.

Aubrey at home. Those are our wood floors, and our baby in the car seat at our home. No hospital gowns, no strange nurses, just us.

The surprise I had for Keli. She wanted the mailbox decorated, and so I talked to her mother and she did it for me.

This is the surprise Claudia had for me!

A friend made this for me--it shows her progress from birthday to due date to going-home day.  A miracle.

Monday, February 18, 2013

1000 hours. 10am

She took her whole bottle last night and at 9 this morning. She had a bath and has crazy hair this morning. The night nurse described her as having a fussy time throughout the evening much like what happened the night we slept here. So maybe evenings are her fussy time.

She looks really good this morning.

Adam


1100 hours. 11am

Discharge tomorrow!! We have to do baby seat test, CPR class and g tube placement. Busy day. And oh by the way our power went off this morning. Hmm. I know I paid the bill...

She looks really happy!
-Adam


10pm.

Today was long and eventful.  We got a brain overload of information that I think has overwhelmed me a bit.  I hate it that I'm having trouble being all rainbow-happyland about Aubrey coming home tomorrow; as it is, I'm trying to keep from crying (ok, I might have cried some already).  I think it's just the fear of the unknown coupled with all the extra stuff we're going to have to deal with every day that wasn't an original part of the baby plan.  We'll bring her home on a heart rate/apnea monitor and a feeding tube, which meant we had to be taught how to use those today.  Then we had to get all our discharge info, learn how to put the tube into her nose and down to her stomach (traumatic for all involved), learn infant CPR (terrifying in and of itself), learn how to give her medicines (three) through the tube.  I'm just worried that I'll do something wrong.  I don't want to be the one to mess her up after she's come so far, you know?  I'm sure once she's home and I can get everything organized and in a routine that I won't feel so out of sorts.  Maybe.  After a week or two.  Or a month or two. 

Aubrey passed her car seat test with flying colors.  The baby has to sit in her car seat for at least 30 minutes (or however long it will take them to get home) without dropping her sats or her heart rate.  The nurse said Aubrey was happy just sitting there watching people go by for a little while, then she went to sleep.  The nurse left her in the car seat while she slept, so she stayed in it for over an hour and never dropped her heart rate or sats once.  That's comforting.

So now, after rushing home and getting the car seat base installed, the pack and play set up downstairs, and bottles and formula sort of organized, I'm going to try to go to sleep.  Might be the last full night of sleep I get for a while.

-Keli

Sunday, Feburary 17, 2013

0815 hours.

Two tired parents checking in. She squeaked all night. This is due to the surgery the other day. It was expected that she would squeak more and she does.

We laid in bed getting used to her baby noises. Poor Keli didn't hardly sleep because she would hear a higher squeak and she would get up to check her. She slept most of the night but also squeaked and gagged all night.

Nurse came in every three hours to put food in the tube and at midnight gave her eye drops.

Now for some coffee.

our lovely accommodations at the hospital

Watching TV with daddy.

Adam


1715 hours. 5:15pm

We are back at the NICU after taking a long nap. She is still really fussy.

The official term for what she has is laryngomalacia. It's what makes her squeak so much. 90% of the time babies outgrow it but sometimes they have to go in and remove some scar tissue or other skin around. No idea now on if she will outgrow it.

Monitors and equipment coming in tomorrow morning. We have to be trained how to set it up.

Tomorrow they will also do some blood tests to see if her blood levels are good. By now she should be able to make her own blood but they want to make sure levels are right. It's just that she is fussing so much. Some babies just fuss, so we are making sure that's what it is and not something else. She is still active so we rule any infection out.

There also maybe some connection between the vent tube being stuck in so many times the other day causing some soreness in her neck and her fussiness. If her throat is sore from it and the reflux comes up, it may burn. Who knows. So many things to wonder about.

The NP said this morning going home Wednesday. But she doesn't make the final say and we haven't spoken to a dr. So it may still be Monday afternoon.

Grandmothers got to hold her all afternoon till we got here. Good deal. Poor girl won't be able to walk until she is 3 because everyone will be holding her.

Adam

See how far I can rear my head back when I am mad after eye drops, diaper change and nose treatment?

So, last night was...stressful.  I knew it would be.  Of course I was worried about what Aubrey would do and I didn't want to have to call the nurse for everything.  I actually think we might sleep better when we do get her home; because the feeding pump she's on now isn't the same one we'll bring home with us, the nurse had to come in every 3 hours and start her feeding.  That meant she came in at midnight, 3, 6...it lasted an hour then I had to turn the pump off when it stopped.  Once she finally calmed down about midnight, she slept until 7 this morning. Yes, I woke up with just about every noise, squirm, or whimper Aubrey made, but every time I got up to look at her she was asleep.  Just a noisy sleeper, I guess.  We just have to learn how she is and what works best for her and us, like all new parents.  She's been here a long time, but we haven't had an actual whole night with her until last night.  I'm still absolutely terrified about bringing her home, but I'll be glad to get into our own routine in our own house.

-Keli

Diaper change. Thank you daddy for protecting my privacy.

Saturday, Feburary 16, 2013

1236 hours. 1236 pm


Aubrey has been a little more fussy since the surgery which is expected. She managed to pull her feeding tube out so they taped it down with two pieces of tape and in such a way that there is no slack to get her little fingers in.

Bottle feedings started today and Keli gave her the first one. She took 50 mls out of the 60 they just upped her to. Still in 15 minutes. She did good. She also got her RSV shot to keep her from getting any respiratory diseases. There was much crying but she forgot about it moments later. Had a little poo in the diaper which is good. No poopy diapers over night so she is still a little stopped up. (She is going to be so embarrassed about that when she turns 13. )

I also want to take this time to correct Keli. She said I am a just the facts person the day of the surgery. But I need to point out that I have a feeling too. If you notice, I used the word emotional in the middle of all the facts at one point during the day.

Today is the big celebration at Panera Bread Company in the target exchange center at 1600 hours (4pm) ish. I am so grateful for all the support y'all have given us. I don't know that we could have done it without you. I am humbled to see the stats on this blog to into the 120's for unique visitors a day. God has been so good to us.

After the party is our first night with Aubrey. We get her all night for the first time. I am so glad we get to be here with a nurse so close. Sure she has t had a blue episodes in 2 weeks now, but you can never trust a premie. She will be hooked up to a monitor that will be seen in the NICU if anything comes up. Plus if there are any problems that we don't know about or haven't thought about there will be an expert here to assist.

Aubrey is resting now.

Adam



1840 hours. 6:40 pm

We are in the room as a family. Aubrey is hooked up to the monitor and resting comfortably. The room is rather basic and we will be hearing the elevator all night but the nurses are close. We got the briefing on how to use the oxygen equipment and what number to call if something comes up. However if something comes up I am sure they will hear my loud and commanding voice clearly in the next building.

The celebration was wonderful. Thank you everyone for coming. My parents, Claudia Darrell Vickie Wayne Mary Mikey Brendan Georgia Karen Courtney Jim Will Glen Cynde Cody Jessica Pam Caleb Emily Melissa.

Adam


2145 hours. 9:45 pm

Two nervous parents checking in. Everything is going ok sofar. Couple little drop in stats have concerned us. Heart rate dropped a couple of times into the 80's and 90's but went back up. It also peaked at 221. Her normal rate is in the 150's. So the dr came in and watched her a while. We talked about it and those happened in the 7pm hour. We also changed an enormous diaper. So maybe it's all connected to the diaper issue.

She fell asleep on Keli and no more problems until we had a food situation. Yes the infamous food situation. She howled and cried and bobo lipped herself until she was fed. Keli has to modify the nipple of the bottle so that it will allow the thickened formula to pass through. Too small a cut and it won't go through and too big it will cause her to gag. She got it perfect and Aubrey is happy again.

Adam

Friday, February 15, 2013

6a.m.

Aubrey behaved well after her surgery and didn't act foolish.  The nurse said she slept all night and kept her oxygen saturation and heart rate up.  She's doing well back on her feedings too.  She weighs a whopping 7lb 6oz now!  We have a monster baby after all this time!

I, unfortunately, feel like I have gotten another cold.  Darn this stress and the toll it's taking on my immune system.  Grrr.  I might wait until later this afternoon and see if some of the snot goes away so I can put on a mask and just look at her.

I guess today will be my last day at work for a little while...I work for the best lady ever who's really like another mom for me.  She told me to just take my time and work it out and decide when to come back.  I don't think I can stay gone too terribly long considering this job doesn't have paid maternity leave, but that's ok.  When Aubrey gets a little bigger and stronger I can bring her to work with me.

sleepy, smiley, crazy-haired baby

-Keli

6p.m.

I think maybe she was still feeling a little down from her anesthesia and surgery yesterday.  I figured I would be too.  Mom was with her for a while and said she was just sort of fussy.  They only had her on half-feeds until 3 this afternoon because she hadn't had a poopy diaper yet and they didn't want her to get all backed up.  They went back to normal feeds at 3 and 6 because she had been passing gas...I guess they figured it was coming sooner or later.  They stopped her IV fluids and took the IV out of her arm; there's still one in her foot (nothing running through it), but, like usual, they'll leave it until it's no good anymore.  I did get to go back and see her, but I was going to let Adam hold her and I'd just look.  That didn't last long.  Adam couldn't get comfortable and she couldn't get comfortable, so I asked the nurse for a mask just in case (I don't think I have anything contagious) and scooped her up.  She went to sleep.

me being overly cautious about my snot...don't want her getting anything!

She got fussy as we were getting ready to leave, but it was about time for her feeding to start.  She gagged and I think had some icky reflux come up; she cried a little and her sats went down.  I wonder if having that tube put in and taken out yesterday made her throat sore and the reflux just bothers it more right now than usual.  Poor baby.  I hope she sleeps good tonight.

they had her left arm out of her clothes because they had just taken the IV out.

8:30p.m.

For anyone that's wondering, the get-together tomorrow is going to be at the Panera close to the Regal movie theater and the BestBuy.  We sort of forgot there were two.  Sorry about that.  Oh, and it's still at 4p.m.

-Keli

Thursday, February 14, 2013

1000 hours. 10am

We are at the NICU awaiting the surgery. We were awakened at 7 this morning with a call giving us all the risks and more info on the surgery. Nothing we didn't already know just again. So we headed out and after finding a parking spot scrubbed up and walked in.

Ends up we are going to surgery at the same time our NICU neighbors are. They are a sweet couple and great family. We have gotten to know each other through the struggle.

Keli and I had a hot date last night. It was good for just the two of us. Thank you Timmermans.

Her eye drops are pretty powerful. They have caused her heart rate to drop and her to be sleepy. The little bit of rash on her cheeks is from the tape of the feeding tube and her scratching herself with her finger nails. The feeding tube has been removed due to her not feeding after midnight. She is growling a little as she tries to move around. You can tell she doesn't feel right.

We were told she would act a little "foolish" today as she may have an upset stomach and not feel good. She will be back on the ventilator for a short time to make sure she doesn't have any episodes. But I would imagine that wouldn't be for long since she hasn't had oxygen for a couple of weeks now almost.

Recovery should be within a couple hours and the procedure about an hour.

Adam


1112 hours. 11:12 am

The emotional trip to the surgery down the elevator through the hallways and doors is complete. The briefing from the dr was simple. She will come speak to us when it is complete.

Her fan club has taken over the waiting room as we moved chairs around.

Adam


1151 hours

Just notified that everything is going good and they have her ready. They will begin to laser in 10 min and it will take about an hour.

Adam

1220 hours.


Laser surgery has started.

We are praying for drs and Aubrey.

Adam


1300 hours

She is good. The anesthesiologist said she had to try three times to get the breathing tube in due to the flap that is immature. But there is no damage and nothing too abnormal about that.

The eye dr said that everything went well. She was able to match both eyes and probably won't have to do procedure again. She will follow up with her In a week or two. We will have to put eye drops in for the next 7 days. Argh. She doesn't like eye drops. (She gets that from her daddy).

We are enroute to the NICU waiting room to wait (hence the term waiting room) (i mean really, there is only one thing to do in a waiting room, the room is designed for waiting, and once you breach the door of the waiting room you know you will only wait) for her return. It should be another 15 - 20 minutes before we get in there to see her.

The breathing tube will come out later today so there will probably be no baby holding today. She will have an ointment in her eyes and they will be taped shut due to being in a bed with heat so that her eyes will not dry shut. The tape will be taken off once she starts blinking again.

We breathe a sigh of relief.

Adam

1450 hours. 2:50 pm

She is doing well. She woke up and her heart rate went up due to pain and being mad so they gave her another shot of sleepy medicine and let her sleep. So she is chilled out.

Adam


1550 hours


Another hour and they will attempt to pull the vent out. The first of three steroid shots are already in her. They are for the possible inflammation of the esophagus. She gets uncomfortable so they might be pulling it sooner. It seems once again Aubrey determines the timeline of events.

A suction line is being installed in the vent to clear out all the mucus and junk in her throat. She is not happy. But it will help her.

We got a tour of the room that we will be staying in. Single bed with minimal frills but it is good. Sofar we are being told it is going to be Sunday night.

It's looking like our party will be Saturday afternoon at 1600 hours or 4 pm. That isn't set in stone yet so stay tuned. I want to do it before panera gets filled up of weekend traffic but late enough that we can enjoy dinner.

Adam


1751 hours. 5:51 pm

And she is back in our arms.

She was a champ today. The vent has been removed as they slowly lowered it down and she is breathing on her own. She is at 100% oxygen and her breaths are good and deep. When they removed the vent we had to step out while they inserted the tube through her nose. She protested the tube because her throat is still sore from the 3 attempts of the vent tube earlier. But it is in and food is a flowing into her belly. She is only getting a half dose now but it will be upped back up at 9 tonight.

It was hard to see her suffer for both Keli and me. You just want to pick her up and hold her but we couldn't because of the vent. But after all day here, she is doing well.

Let no one ever say she can't do something.

right after the surgery--vent still on

We will be heading home a little later and spend some valentines cuddle time on the couch just me and Keli.

Adam

holding mama's finger

7p.m.

Adam is such a "just the facts" kind of guy.  I love him.  Me?  Well, y'all know I'm the emotional one and today was a bundle of emotion.  We walked down to the surgery area with Aubrey, and it was the hardest thing ever to let them wheel her away from me and into the operating room.  She just looked so little and vulnerable with all those scrubbed and masked people around her ready to knock her out and laser her eyeballs.  And then the waiting...ugh.  I don't know how parents who have to wait through hours and hours of surgery don't go crazy(er).  An hour and a half was plenty for me, thank you.  I hated seeing her back on the ventilator and all disoriented and struggling to figure out what was going on after the surgery was over.  The breathing tube just about gave me a panic attack because of the memories it brought back from when she was so tiny.  I'm so thankful she was able to be taken off of it this evening and did well. It also made her very happy to be getting food in her tummy again tonight--baby don't like bein' hongry! ;)

Our kid is so amazing. Did y'all know that?  She was such a trooper today, such a tough cookie.  After all the crap she put up with today (don't say "crap," Aubrey), she was, again, content to be held and fed. 

-Keli

2015 hours. 8:15pm


It is confirmed. Saturday at 4 pm (1600 hours) is our day before the day before she comes home party. I know it's kinda odd in some ways, but we can't have a party at our house because of germs and we just spend two days cleaning it. I would like to see every one that has been supporting us and everyone see us. We want to thank everyone for their support and prayers. The fan club is awesome. And why not have a party where some one else does the cooking. So, we are having the party at Panera bread company (because we have a gift card for there, the last one). We would like to invite everyone that can come to come and celebrate with us. You do not have to eat, and unfortunately i cant afford to buy everyone dinner like i want to, but you can just come and hug our necks. It has been a rough few months and its over. Whew.

Saturday night we are sleeping in at mcg for the night so after the party we will be going to stay at the hospital with Aubrey. Imagine, both my girls in the same room with me. Ahh. Hopefully the lock on the door works ;).

Adam