Officially moved!

No news is good news, right?!?  Things have been going so well and NORMAL that I forget to blog about them!  Normal is such a nice state to be in.....


Annelise turned 4 months old, and is approaching 5 months old.  Oops!  Forgot to post this cute picture of her on 11/8/11 - her 4 month birthday!

Annelise has been steadily improving with her eating since we switched formulas.  She's doing very well.  And she's getting bigger.  Haven't weighed her in awhile since we've backed off of breastfeeding.  But she's starting to fill out those 3 month clothes!  She's almost rolled from her back to front.  She gets onto her side and then stops there.  So sometime soon she'll be making a 180 degree roll!  Can't wait!


Aunt Adrienne got her a tummy time mat for Christmas and gave it to her at Thanksgiving.  She won't be in NJ for Christmas, so Annelise got it early!  Lucky girl!  She really does not like tummy time.  However, she tolerates the mat really well!

Annelise is really starting to "talk" also....she babbles constantly.  Loves eating her hands.  Gramma thinks she should go on the David Letterman show since she can almost fit her whole fist in her mouth!   Mom Mom showed her how to put her feet in her mouth when she was watching her on Saturday during the move.  I haven't seen her actually get them in her mouth yet, but she's been pulling her feet up and doing baby crunches it seems. 




Annelise met Honey recently also.  Honey is Matt's grandmother, so Annelise's great-grandmother.  Honey was at Gramma & Pop's visiting for Thanksgiving.  We will see her again before she goes back to Houston, Texas right before Christmas.  They got along really well.  Here's a picture of 4 generations of Hallinans.

We are officially moved into Annelise's new house.  It's closer to all of her grandparents and her room is much bigger.  Maybe someday she'll actually sleep in her own room!  Haha! 

Please make sure you email me if you'd like our new address.  I sent out an email, but might have missed people.  We did forward our mail, but sometimes things slip through the cracks!

Ch- Ch- Changes!

We are doing a lot of changing here in the Hallinan Household!  Let me list them for you....

Change #1
The BIGGEST change is that we are MOVING!  We bought a house in Washington Township and close on November 30th!  So we will be moving out of this house into the new house the first weekend in December.  Then hopefully selling this house quickly soon after.

We are moving because....

a) We need a bigger house...as small as Annelise is, we are overrun with baby stuff.  The swing, the pack-n-play, the bouncy seat, the bassinet, the crib, the changing table, it takes up so much room.  And she playing in the living room on the floor in the middle of where people need to walk. 

b) It's an awesome time to buy and we found a house that we love at a great price. 

c) We'll be closer to Gramma AND Mom Mom!  So lucky them, I can now drop little A off in a moments notice.  Hehe!


Change #2
Annelise is now in 3 month old clothes!  We had 2 doctor's appointments this week.  She weighed in a 9 lbs 6 oz at each!  Wow, what a big girl!  The doctors are all pleased with her weight gain.  So despite her reflux and spitting up, she's gaining well.

Change #3
We are trying a new formula to supplement with.  Annelise has a lot of gas and is fussy from it.  The nutritionist (and her parents!) think there's no reason for her to be so fussy.  It's usually only once a day, but you can tell she's in pain!  We just switched as of today to Similac Alimentum.  We're going to give it about 2 weeks.  If it doesn't resolve her issues, then we're going to try Enfamil Nutramigen.  All a little more expensive then the common formulas, but we may be able to get insurance to cover part of the cost.  If not, I don't care.  I'll pay whatever to make this little girl happy ALL the time!

As always, here are some cute pictures of little A!

This is Mom Mom and Annelise both asleep at Mom Mom's house.  Our heater broke during the recent snow storm!  Of course.  So we camped out at Mom Mom's house for the weekend.

Here's little A bundled up before we headed over to Mom Mom's. 

Little Hokie Girl!

Annelise's Halloween outfit.  She loved helping Mommy hand out candy to trick-or-treaters!

Then it got warm, and Mommy used the opportunity to dress Annelise in a cute dress for her appointment with her surgeon, Dr. Flake.

Settling into a routine

Annelise and I are getting settled into a routine now that she's been home almost a month.  The first few weeks were difficult.  She is medically complex, and her reflux is pretty severe.  She was doing well at first, and then the surgeon tried to wean her off of one of her medications.  That made her reflux A LOT worse.  We were having alarms on her heart rate monitor, and she was spitting up several meals a day.  We went back up on her medication, and she's doing a lot better.  Only a little bit of spit up each day, and our happy baby is back!

She's gained a lot of weight already!  At last doctor's visit, she was up to 8 lbs. 9 oz!  I think she's gained more since then, but we don't have an official weight check until next week.  I'll let you know!  I have to change out her clothes though.  All of her newborn clothes are getting small on her.  3 month outfits here we come!  :-)

We're being evaluated by Early Intervention Services.  Because Annelise spent so much time in the NICU, and was premature, she's a little behind on her milestones.  She's almost 4 months old, but should be hitting the milestones of a 2 month old due to her prematurity.  However, she spent almost 3 months laying in a hospital bed.  So we have some time to make up!  Early Intervention will be sending an Occupational Therapist to our house to work with Annelise and teach me how to play with her so she develops and hits those milestones (rolling over, lifting up her head, grabbing for stuff, etc.)  They say that she's going to do very well with therapy because she's trying to do things now, just doesn't have the strength.  We meet with everyone on November 7th to decide our ultimate goals and small goals along the way.  They will also tell me how many times per month they're coming to work with her.

As always, here are some recent pictures of our cutie pie!  She's getting so big so fast!

 I know, I know....babies shouldn't watch TV. 

BUT, Annelise loves watching NFL RedZone on Sundays with Daddy.  She really likes football!

Aunt Adrienne made a surprise visit home last weekend.  Annelise loved hanging out with her!

Just the other day, Annelise fell asleep while looking at herself in the mirror!  Haha!

Times flies when you're....

......Home with an infant!

......Feeding, pumping, changing diapers, sleeping, feeding, pumping, changing diapers, sleeping!


Insert either of the above phrases and you may understand why this blog hasn't been updated in a bit.  Being home with Annelise is a full-time job!  My schedule revolves around her schedule.

We had a follow-up visit with her surgeon, Dr. Flake on Thursday.  She's gained some weight!  Yay!  8 lbs even now - so she's doubled her birth weight finally. 

Aunt Denise came over last weekend and took really nice pictures of Annelise.  She is an excellent photographer.  I'll share my favorites....

Cold Season Rules at the Hallinan House

The doctor's office is working on getting Annelise approved (insurance) for the shots to prevent RSV.  She is too young to get the flu shot, as it's only effective from 6 months and older.

Some information on RSV and why we're being vigilant to protect little A from it:

Nearly every child has had the RSV virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are: being born premature, being born with a lung condition, or being born with a heart condition.  Annelise is at a high risk!  Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Annelise safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Annelise contracts RSV she will likely be hospitalized since she does not have the necessary immunities to fight off infection like the rest of us. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.

At our house, please be prepared to take off your shoes and wash your hands upon entering our home.  Use the antibacterial hand gel frequently also.  Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms.  If you haven't had a flu shot, please refrain from visiting. (I mean, it just makes sense to get a flu shot.  Who wants to be sick?!?!)

Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season. 

THANKS!

First week home

Well, it's been a little over a week at home.  Things have been going well.  Annelise is very happy and adjusting well to life at 8 Ray Smith!

I just got back from a visit to Annelise's pediatrician.  While she's home and  happy, she is not gaining weight like they would like her to.  She has only gained 1 ounce in her first week at home.  They'd like to see her gaining 1 oz per day!  Only time in her life she'll be advised to eat more!  haha!  She's currently 7 lb. 10 oz.  Little peanut!

 

The doctor advised us to keep her away from big groups until the Spring.  No Target, church, etc.  Doctor's visits only.  Boo.  Good thing I took the year off to be home with her!  We're allowed to do walks out in the fresh air, so you can bet that stroller is going to get some use.  We do not want to end up back in the NICU at CHOP!

Here are some recent pictures of our happy girl!

 

Family pic!

Taken at Mom Mom's house on our way home from CHOP

You wouldn't believe how happy she gets at her activity mat!

She coo's and smiles at the turtle who lights up and plays music!

I've got to try to catch a video of her.  It's just too cute.

Watching the Phillies win the first game of the NLDS.  The bib is the size of her body!

Watching the Eagles with Daddy this past Sunday

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.

Hunkering down in preparation for Irene

Hurricane Irene is fast approaching, and we're at CHOP.  Even though our area (South Jersey) wasn't evacuated, we packed up and left for the night.  Matt & I are going to stay at my sister Denise's house in Philadelphia tonight after we leave CHOP.  The news stations were talking about the bridges possibly being closed, which would make it pretty hard to come see Annelise.  Also, if we lose power I can't pump to bring fresh milk to the baby.  Philadelphia will hopefully not lose power, and if they do, we're close enough to CHOP to drive here and stay bedside.  We were told when we got here that all of the sleep rooms are filled already! 

Oma & Pop came to visit Annelise this morning and while they were here, the doctors removed her oxygen!  She was on such a little amount anyway.  I'm worried about her having Brady's (bradycardia - when her heart rate drops significantly) without oxygen support.  But after talking to her nurse, I feel better.  Annelise's brady's are mostly related to her reflux.  When she starts to reflux, she holds her breath to discourage the food from coming up.  This causes her heart rate to drop momentarily.  Her medical team thinks this will stop as her reflux gets under control.  We're working on that. 

Breastfeeding is going okay.  Bottle feeding is going well.  She seems to like the bottle a lot, probably because it's easy to get food out of it!  Daddy has fed her a few times from the bottle and they are just SO cute together.  I've breastfed her 3 times so far (the 4th time being this afternoon!) and she latches on, but doesn't seem to get much milk.  The Lactation Consultant says that this is a looonngg process and I need to be patient.  I'm trying.  :-)

I'll post pictures of our cutie when I get access to my home computer again.  Pray that it's not gone when we get home tomorrow night!

VOTE for CDH!!!

We only have 3 days left to vote for CHERUBS! 

Go here  Vote for CDH!

Sign in with your Facebook account.....LIKE the VIVINT page.......VOTE for CDH!

We have a chance to win money that will go to CDH Research!

Here's a little about CHERUBS (taken from the Vivint CHERUBS page)

CHERUBS in an international non-profit organization for families of babies born with Congenital Diaphragmatic Hernia (CDH). CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. Babies born with CDH endure surgeries and long hospitalizations to repair the diaphragm and allow the babies' lungs to rest and expand. 1600 babies are born with CDH every year in the United States alone; 800 do not survive. The cause is not known. There is little CDH Awareness and even less CDH Research. Most people have never heard of this devastating birth defect, therefore it's hard to raise funds for research and support for families, even though Congenita Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis. CDH Babies are the most underserved and CDH the least researched birth defect in relation to the rate of occurence. CHERUBS was created to support families, increase awareness and promote research into the cause, prevention and best treatments of Congenital Diaphragmatic Hernia. Our services to families are free and provided by the kindness of donations and volunteers. We currently help over 3700 families by providing information, on-call support, conferences, on-line forums, reference guides, newsletters, care packages and much more. We conduct dozens of services and projects for CDH research, awareness and support with an average annual income of less than $35,000. We are the world's first, largest and most active charity for CDH.


We only have 3 days left to vote for CHERUBS! 

Go here  Vote for CDH!

Thanks!

A few liters less

The past few days have been about growing.  Annelise has been gaining weight and expanding her lung capacity.  Annelise lost some weight when they put her on breastmilk only, like most new babies do.  And she was down to 4 lb 4 oz. the weekend before her due date.  She was 5 lbs. 6.5 oz this morning!  1.5 weeks and 1 lb of growth!  Yay Annelise!  She's been an eating champ also - she started breast feeding today for 1 feeding, and is up to 5 ml once a day on the bottle.  Matt gave her a bottle today.  It's really cute!

She loves her Daddy!

We can only try feeding her through her mouth twice a day right now because they don't want her to burn too many calories.  She's doing well gaining weight, but she's still very small!  We need every calorie for growing!

Also - her left lung continues to improve and expand.  She's down to 0.5 liters at room air (21% oxygen).  Basically nothing.  She's doing very well with it.  We're excited that she's such a rock star...she powered through whatever was ailing her last week and is looking like a cute newborn baby now!  She does not really look like a preemie anymore.

Here's the comparison of how far we've come......(stole this from Matt!  He texted this to me and I thought it was amazing!)

Annelise on July 8:

Annelise Today (August 24th)

Our good friends - Jessie & Cameron Saunders had their baby girl today!  After a long labor, Jessie gave birth via c-section to Avery Anna Saunders at 3am this morning!  I'm so excited that Annelise has a playmate! Congratulations guys!

Pictures from the past week!

Quick Medical Update:
The doctors can't find an infection. They did blood, urine and respiratory cultures. Nothing. They also did an ultrasound of her neck because of the inflammation. Nothing. But it went down on the antibiotics so they're continuing them for the time being.  She's super cute and has started to lift her head to look at my face when I'm holding her.  She loves her crib aquarium toy that's hanging in her crib.  She's very attracted to music and is amazed by people's conversations.  She really only crys when she's trying to poop or when Mommy's near and not holding her.  Well, those are the two cries I've noticed! 

Onto pictures of the pretty girl.....

Happy Due Date!

Trying out the bouncy seat in her crib. 

This is the only way we're allowed to use it right now. 

With all the sides up & inside the crib.  But she loved it regardless!

Yay!  Aunt Adrienne is home! 

Mom Mom & Annelise

Annelise rocking the separates!

Thanks Aunt Nise for decorating my shirts!

Annelise & Daddy having a chat

2 steps forward, 1 step back.....The August version

So we rode the rollercoaster in July with Annelise.  Looks like we're going to take a little ride this month also.  When we went to CHOP today, we noticed that Annelise's face looked a little puffy.  We know she's not retaining fluids, because the rest of her body looked normal.  It was just her chin/neck area that was puffed up.  She seemed to be breathing very hard also.  We alerted the nurse to it, and she immediately called the Nurse Practitioner.  They examined Annelise and found that the right side of her chin/neck was puffy and hard.  The left side was normal.  She doesn't have a fever, but they think she may have an infection.....again.  The protocol for this is 48 hours of antibiotics while they do cultures to see if there's an infection.  So we started all of that again.  They had to put an iv back in her arm (they removed it before) to give her the antibiotics.  If she does have an infection, they'll continue the antibiotics for 7-10 days.  If not, they stop them after 2 days.  We'll have to wait and see if it is an infection until Thursday.

Right now, Annelise is cranky when she's not sleeping.  She really only calmed down when I did kangaroo care with her on my chest.  She's unhappy and feeling crappy!  Poor baby!

Happy Due Date!

Today was Annelise's due date!  When a baby is born prematurely, they get two ages - regular age, and adjusted age.  The adjusted age goes by their original due date.  So even though Annelise is 5 weeks old, she's just today starting her adjusted age.  Preemies usually catch up within 2 years.

The doctors have reduced her oxygen again, she's down to 2 liters per minute.  This is not high flow anymore, but regular flow.  She had a great day all around....very calm and content.  Hanging out with us and behaving!

We got the go-ahead to start the very slow process of breast feeding this week.  We're going to start with non-nutritive sucking.  It's where the baby latches on, but only for a little bit and after I've already pumped.  It's like a practice run for really nursing.  They have to practice a few times and learn how to do it before they try a meal. 

Weaning

So nothing much has changed since Thursday.  Annelise is still on the nasal cannula.  They've weaned the amount down to 3 liters per minute though.  Half of a liter yesterday and half today.  She's such a rock star!

They've discontinued her lasix altogether (diuretic).  They don't feel that she needs it anymore, and her sodium levels are a little low.  They think with discontinuing it, her levels will correct themselves.

She has been having a little reflux.  Poor baby gets herself so worked up and then spits up.  The NP started her on Zantac to help with the reflux. 

Other then that, she's doing well.  I commented to Matt yesterday that right now, Annelise's issues that we're dealing with, are common and stem from her prematurity.  It's a blessing that she's recovered so nicely from the CDH surgery.  Most babies born prematurely AND with a birth defect wouldn't not have made it this far so soon.  We are very blessed!

Here are some pictures of our cutie pie!

Daddy & Annelise both sleeping!

Yay! No more CPAP!

So I have a happy baby today!  I came into CHOP to see a very content baby Annelise.  They took off her CPAP today and switched her to high-flow nasal cannula.  Basically, it's nasal prongs that deliver humidified air to the baby.  It can go up to 35% oxygen, but our Annelise is on room air, 21% oxygen!  She started on 4 liters per minute today.  Which is a nice average - as it can deliver up to 6 liters per minute.  She's doing  very well so far.  She's been very content when she's awake, and she's sleeping more then before.  The nurse said that's a sign that she's happier too.  She was so aggravated by the CPAP mask, that she cried a lot and didn't sleep well. 

Here's her first picture without the CPAP mask on......

I like to think she's cheering for the mask to go away!  :-)

Now we can see our beautiful baby girl without contraptions everywhere.  The tape on her face to keep the nasal cannulas in place and also to keep her feeding tube in place.

What a pretty girl!

Waiting for our angel.....

To celebrate Annelise's successful extubation, Matt and I set up her nursery!  We had originally planned to set it up at 36 weeks, 1 week prior to the scheduled c-section on July 26th.  However, God had other plans for us.

Once Annelise was born, we decided that getting off of the ventilator was a momentous occasion and we would celebrate it.  Annelise was extubated Thursday, and we waited until Saturday to start the set up.  One of our nurses had forewarned us that sometimes babies have to be re-intubated, even several days after getting off the vent.  We gave it 48 hours and she was doing so well!

It took a few days to finish, but her nursery is complete!  We hope she likes it when she comes home, all it's missing right now is her!

This is her bookcase (filled with books from family & friends...thank you!), chest of drawers and window.

This is her changing table and closet.

This is her crib and the wall of decals behind it.

Cute rug  

Cute wall hanging 

View from the door to her room