Photos from our first days home

Hi guys!  So the past few days have been challenging, as it is when most people bring a new baby home!  We're adjusting to being with Annelise 24/7.....and she's adjusting to us!  It's wonderful to be able to roll over and see our angel sleeping in her bassinet.  I do not take that for granted at all!

Here are some pictures from Annelise's first few days home!

First bath at home

The promised car seat picture from our ride home

How adorable!

Just chilling in her playard

She's HOME!!!

Okay, so first of all, I have been posting via the Blogger app on my iPhone....yet somehow the posts haven't made it to the blog.  :-(  Sorry to keep y'all in the dark!

Anyway, we did our day of testing last Monday, came back that she did NOT need another surgery!  Thank God!  So the team decided to put Annelise back on the Erithromycin since she did so well on it before with her reflux.  Then she stopped having Bradycardias once she was put on it.  So they said we could bring her home...on erithromycin, prilosec and a heart monitor.  The heart monitor just alerts us when her heart rate is too high or too low or if she stops breathing.  At first, I thought it's going to be annoying and I didn't want it.  After our first night home, I definitely like having it.

This is Annelise waiting to get her discharge papers to leave the NICU. 

Daddy has the car seat pictures on his phone, so I'll have to post them later.

When we got home last night, this was waiting for us:

I took the picture today since it was dark by the time we made the rounds visitng the grandparents after leaving CHOP.  I LOVE this, and didn't think we would get one since this wasn't the traditional homecoming of a newborn.  Thanks Mom Mom!

By the way.....her length is wrong.  Totally my fault! Things got very confusing those first few weeks in the NICU and we didn't have her correct length and weight until discharge yesterday.  She was actually born at 17.75 inches and 4 pounds.  Oops!

After we got home, it was crazy to try to get on schedule with her feedings and medications.  Annelise was super tired because she didn't sleep well all day in the NICU.  I think she could sense the excitement!  Here she is sleeping in Mommy & Daddy's bed after her 9pm feeding.

Last night was rough, but we made it through.  Evidently Annelise likes the 3am hour.  She woke up at 2:45am and stayed awake through her 3am feeding until her 6am feeding!  What a night owl!  I'm glad that we have the heart rate monitor.  It beeps (quite loud!) to alert us if something's wrong.  The only reason I slept at all last night was the monitor.  I kept thinking that she would stop breathing if I set her down, or the cat would smother her, or she'd have another Brady when I fell asleep.  But the monitor will wake me up if that happens, so I can rest easy for now.  I'm sure we'll be off of the monitor in a few weeks, but it's a good transition for me from the NICU to home.  At least I can sleep the 2 hours between feedings without worry!

Today has been calmer.  The Home Health Nurse came out to see us and check up on medications, feeding, etc.  It was great to have someone come over and make sure we were doing okay.  CHOP has been great!  She'll be back in a week to check on us again.  In the meantime, they have a nurse on-call 24/7 to answer questions and walk us through anything that we're not sure about.  I hope to not use them, but am glad they're there. 

Tomorrow, Annelise and I are going to her pediatrician for her first visit!

And then October 13th, we have a follow up with the surgeon. 

No one said having a newborn was dull!  We're on the go! :-)

Annelise in her Froggy bouncer in our living room!  Look how happy she is to be home!

Day of testing

Bright and early Monday morning, Annelise started her day of testing.  She started with the Milk Study, which watched what happened when she drank her bottle and then for 1.5 hours afterwards.  The nurse told the techs that they should not feed her quickly, but they did.  And they ended up with vomit all over their testing room as a result.  This test will tell us if Annelise is micro-aspirating any milk into her lungs.  We don't have any results yet from that test. (of course!)

Then, we weren't allowed to feed her until 3pm when she went in for the Barium Swallow/Upper GI test.  This watched barium travel through her esophagus/stomach/intestines to see what happens and also to see her anatomy.  Well, her anatomy is right where it's supposed to be.  (Thank God.....considering she underwent surgery 70 days ago to put it there!)  Her stomach is on the small side, but in the right place.  And typical of Annelise, she didn't reflux at all during that test!  :-)  She wasn't happy that after 5 hours of not eating we gave her some barium to eat.  But I followed up her test with a very full bottle of milk for her.  She smiled at me after I fed her that.  What a sweetie!

We're waiting to hear about the Milk Study and then to hear what the surgeon decides is our next move.  Dr. Flake, who did her CDH repair, will make the decision about the Nissen/g-tube insertion.  There are pros and cons for doing the surgery.  We know we're in the right hands, as Dr. Flake is a very skilled surgeon. 


This IS typical of a CDH baby, I had just hoped we weren't going to go down this route, and it didn't seem that we would.  When the intestines and stomach are manipulated like they were, there are many complications that can occur.  A resolution seems imminent and I just want a healthy baby to take home.

A little bit longer

Sadly, instead of coming home this weekend, we spent even more time in the NICU.  Annelise is having Bradycardias (severe drops in her heart rate) when she is refluxing because she's holding her breath.  Poor little thing, it's very painful for that fluid to come back up and she's holding her breath to help keep it down, which causes her heart rate to drop.  When this happens, she's at risk for aspirating that fluid into her lungs.  We know that she's not aspirating a lot of fluid into her lungs because she's not showing signs of that.  However, she could be aspirating tiny bits of it.  Over time, she could develop pneumonia if this is happening.  So for right now, she's staying put at CHOP.  

Her team of doctors and nurses aren't just sitting around and watching her though.  We're going to do 2 studies to see how bad the reflux is.  These will tell us where we go from here.  One possible route is another surgery to insert a G-tube and do a Nissen procedure.  Both of those will get her out of the NICU.  The Nissen procedure will tighten that intersection of her esophagus and stomach to help stop the reflux.  The G-tube is similar to the current NG tube that she has in, but it's just in her stomach.  We would feed her through there and the NG tube would go away.  Another route if it's not that bad is increasing her medication and a Brady-watch.  We would have to go at least 2 days without a Brady before being released.

So it seems like we're still near the end of our stay at CHOP, but a little hiccup in our release plans.  We'll get there, just not this week probably.

Any day now...

We are literally counting the hours now!  It's not going to be Saturday, but could be Sunday that we bring our baby girl home!  If not Sunday, then maybe Monday.  That's the point we're at now!

I'm almost nervous about bringing her home.  I don't know if the reality of having a baby has hit me yet.  I don't know if the house is ready.  Crazy that over 70 days after she was born, I'll finally get to bring Annelise home.

They're doing the Car Seat Test tonight, and that's good for 1 week.  She has to sit in her car seat for 90 minutes without having a Brady or Apnea spell.  If she passes, they will most likely let us go home soon.  If not, they have to repeat the test in a few days.  :-(

Keep checking back because the big announcement is coming.....I'll let you all know as soon as we know for sure.

Photo Update!

Here are some recent pictures of our girl:

A little blurry, but she's sticking out her tongue!  So cute!

Annelise loves her paci!

Caught mid-grin!

Update on possible release date:

Annelise finishes the erithromycin today and now we wait to see if it worked.

Once we know how well/if it worked, we will set a date from there!  :-)

The countdown has begun

To release!!!

Annelise is 2 months old TODAY!

She's been doing very well lately!  She's taking all of her meals by mouth now.  Every feeding time she's awake for, they attempt to feed her with a bottle.  When I'm there, I nurse.  She can take up to 50 ml (a little over 1.5 oz) each meal.  Whatever she doesn't eat goes through her NG tube.  She's waking up at her meal times, and she's usually hungry!  She does this cute little shaking of her head with her mouth open when she's hungry. 

She's obviously getting stronger and eating more, she's weighing in at a whopping 6lb 3oz as of this morning!  My big girl is growing up so quickly.

Right now, the only thing holding us back from being released is her reflux.  She's on erithromycin until Tuesday.  (It's an antibiotic, but has an off-label use to help stomach emptying quicker, which helps reflux.)  Once she's off of it, they're going to watch her for 3-5 days, and then we're coming home!  I cannot wait to walk out of that NICU with my baby!  We already have at least 1 doctor's appointment our first week home.....meeting the pediatrician.  I'm excited that our pediatrician has office hours at night and on weekends.  So I don't have to bring Annelise to the ER when I'm having an over-protective/new mom freak out over something minor!

Matt and I have been busy getting ready for her arrival home, and Matt has been getting adjusted to being back to school.  School started last week, and poor Matt hasn't seen his baby girl in a few days.  He's exhausted after work and was recently not feeling well.  Annelise misses him too, but we've been making and sending videos to Daddy while he's at work and we're at CHOP.

Pray that our release date IS next weekend (we know things can change quickly) and that it goes smoothly!

Picture Update!

As promised, here are some recent pictures of our snug-a-bug!

Annelise is getting to be such a big girl!  She's 5 lb. 10 oz now and fits into Newborn sized clothing! 

Good stuff

After a good talking to by her Momma, the surgical team has started to prepare for Annelise's discharge!  Matt and I took the NG tube class last night.  The NG tube is the naso-gastric tube, it goes through her nostril into her stomach.  Whatever she doesn't eat by mouth, we put through there.  We had to learn how to insert and feed Annelise through the naso-gastric tube. 

Annelise is now eating every other meal by bottle.  She takes 50 ml of fortified breast milk (calories added) each feeding.  Whatever she doesn't finish of the bottle goes into the feeding tube.  She's been averaging about 30 ml (1 oz) each feeding through the bottle.  The other meals also go through her NG tube.  She will most likely come home with the feeding tube.  We're blessed that's all she may come home hooked up to!  Many CDH babies are released on oxygen and feeding tubes. 

Annelise had some baseline tests this week also - MRI of her brain, EKG and a hearing test.  This is all so that when we follow up (probably a week after discharge), the doctors have something to compare to.

After her MRI last night, the nurse said that since the doctors were scheduling all of this stuff, Annelise would probably be home within 2 weeks!  Yikes.....we have to get those car seats ready!

Matt went back to work today.  He was sad to leave his girls this morning.  He will most likely be tired after work each day, so hopefully Annelise will be home shortly.  Then Daddy can come home to hang out with her.  I am grateful for the time he was able to spend with us this summer.  We couldn't have planned that pregnancy/delivery timing better if we had tried!  As for me, I'm unsure yet when I'll be going back.  Right now I'm just trying to get my baby girl home! 

Unfortunately, we haven't seen the last of CHOP.  (Even though I ADORE the nurses and doctors here.....everyone has been phenomenally nice and attentive.)  We'll be back for appointments probably once a week for some time.  Then every other week.  Then once a month.  CDH babies have the highest chance for reherniation within the first year.  50% have a 2nd surgery to repair the patch over their diaphragm.  We are praying that Annelise is in the other 50%, but we will see.  We will be followed closely by the doctors for awhile, so I know that nothing will slip by.