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!

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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.


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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



I'm getting bad at this....

I'm so sorry....I'm getting really bad at keeping this updated!  Things have been soo busy around here!  Annelise is becoming such a big girl!

This weekend, Annelise got a big girl crib!  So we started bringing in clothes for her to wear since she doesn't need the heat anymore.  She fits into Preemie size clothes right now.  I brought in a lot of Newborn size also, but they're a little big still.

This is Annelise in her big girl crib!  Notice that she's laying on the quilt Mommy (me) made for her!  Luckily her Mom Mom made me do the top the week she was born.  So once I got out of the hospital, all I had to do was sew the backing on it.  What good timing!

They changed her CPAP mask to a different type.  It's using a real CPAP machine, not the ventilator machine they previously used on her.  There were no CPAP machines available when they extubated her, so they just switched the setting on the ventilator to the CPAP mode.  The mask sucked.  She was miserable, and everytime she moved, the mask moved with her and blew more air into her belly....not her lungs!

So a very nice respiratory therapist came in this weekend and replaced the CPAP.  YAY!  Although the helmet/cap isn't really cute at all, she's breathing a lot better.  They've been weaning the CPAP machine also, and she's down to room air (21% oxygen) now. 

See?  Not really a cute helmet/cap....but it's doing the job. 

This is the picture we took today, on her 1 month birthday!!!  I can't believe that 1 month ago, I gave birth to this angel!  She is the sweetest and strongest girl I know!  She's changed my life immeasurably and I'm forever grateful for her!  Her Daddy and I are soooo in love with her.

Ventilator is OUT!

The doctors decided that Thursday was the day....another extubation attempt!  They preceeded this attempt with 3 days of Lasix (a diuretic to get the fluid out of Annelise's lungs) and 2 days of steroids.  It worked!  She got extubated yesterday at 10:30 am and went right to CPAP.  Her nose mask covers that cute little face of hers.  And the "cap" that keeps all of the tubes in place makes her look like an old-time football player....you know, the leatherheads.  She's a cutie still!

So now, we get to hear her cry.  She can finally communicate verbally with us!  Yesterday her cries were weak, as her throat was still a little sore from the tubes that were down it for almost 4 weeks.  Today, she's got her voice!  I knew she would be a vocal girl, but wow!  She got her voice very quickly.  Love hearing her cry though, it means that she's closer to coming home. 

Now that she's on CPAP, Matt & I can pick her up whenever we want.  It's less of a process to get her out of bed.  So we held her for awhile yesterday....just because we could.

Here's my little stinker right after extubation and the CPAP was placed on her.

She looks pissed, doesn't she?  However, as the day wore on, she was much happier then when the ventilator was in.

In feeding news, Annelise is now up to her full feeds by tube.  She's had some reflux, but nothing too too bad.  She's gotten a lot of air in her belly though, which makes her uncomfortable.  The doctors are keeping an eye on it.

Our checklist of "To-Do before we can go home" is as follows:
-Get off CPAP and onto nasal cannula only/or nothing
-Feed by mouth full feeds (only after off of CPAP)

That's it!  Seems like not a lot, right?  We're about half-way through our NICU journey I would say.......Can't wait to bring her home!