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!

Of course she's a Jersey Girl!

So our medical update of the day:

Annelise's lung x-rays are showing that her lungs aren't fully opened to where they need to be for extubation.  The team changed her ventilator settings slightly to try to give her lungs the support they need to expand.  Her rate is down though....that's the amount of breaths that the ventilator gives her.  But she's breathing over the vent on a consistent basis.  So that means that she can breath on her own, just not deep enough to stay oxygenated yet.  So we're giving her more time to expand her lungs a bit.  I would say within the next week to two weeks, our little girl will be breathing without the aid of a ventilator!

In the meantime, they've increased her feedings of breast milk.  She's still getting it through her NG (nasogastric) tube right into her stomach.  BUT, that means that she's reacting well to the milk and not having issues spitting up or a lot of gas.  GERD (reflux) is very very common with CDH babies.  She may develop it as they increase the amount, but so far so good.  Yay!

Today when we visited with Annelise, she was alert for a little while.  Then she fell asleep again.  The nurse took her out of her Snuggly to change it, and Annelise got a much needed stretch.  She loves to stretch her hands and feet out of the Snuggly, and without it swaddling her in, she could stretch her arms and legs as much as she wanted.  Well, I caught her on camera.....

Like a true Jersey Girl, Annelise was fist pumping in her bed!  I put this as my screen on my phone, and every time I look at it, I laugh a little!  So cute!  I can't wait to show this in a slideshow at her wedding!  :-)

Matt holds his first baby....ever!

Today, it was Daddy's turn to hold Annelise!  He was a little nervous I think, he had never held a baby before.  And holding Annelise could intimidate anyone.  She's feisty, has a large tube down her throat, and another tube in her nose, as well as multiple iv lines and wires hooked up to her chest.  But Daddy did a phenomenal job!  Annelise's vitals stayed stable the entire time, and Matt looked like he was in heaven.  He even remarked "I could hold her forever!"  Aww.....however about 1.5 hours later, his arms were tired of our 5 lb. 5 oz. baby girl, and his butt was numb from sitting and not moving.  So we put her back in bed.  She loves being out though, and I can't wait to do this every day!

Pictures of Daddy and his girl:

20 days old and I FINALLY get to hold her!

Today was such a great day!  When I talked to the nurse last night, I found out the cultures for infection were NEGATIVE!  Yay!  No infection!  Annelise received her last bit of the blood transfusion last night also.  She was giving the nurse hell when I called at 2am.  :-)  That's my spitfire!

Matt & I got to CHOP in time for rounds this morning.  We like to do that a few times a week to make sure we see the team of doctors and nurse practitioners.  When they rounded to Annelise's room.  They talked about the negative results and how good she looked this morning.  They said they wanted to wean the rate on her ventilator and start steroids tomorrow to get her ready to come off of the ventilator this weekend!  YAY!  So we'll try the extubation again.  The neonatologist really believes that she's ready for this.  All of her films and her effort when she was briefly extubated says that she can do it.  She just needs a little help to keep her airway non-inflammed.  So that's where the steroids come in.  Can't wait to see how it goes.

As we were sitting there, I mentioned to her nurse, that once the ventilator was out, I wanted to hold her.  She said that she would check with the doctors, but she didn't see why I couldn't hold her today.  So she checked and they said yes!  It literally took 3 nurses and about 15 minutes to get her out of the bed and into my arms.  There are very strict rules about holding the babies.  Mom or Dad only (sorry grandparents/aunts/uncles....I double-checked for you!), has to be at least 30 minutes of holding, and only once per day.  Since it was such a production, I was SO grateful to the nurses.

So we did skin-to-skin contact.  I wore a hospital gown over my bra and they laid Annelise on my chest.  Then we wrapped both of us in the gown.  It was so awesome!  I don't know if I appreciated it more because I haven't been able to for so long.....but wow!  How powerful having such a little person in your arms!  She was craning her head to see my face, and messed up the tape on her breathing tube.  (Oh well!)  She fell asleep on my chest for the 40 minutes I had her out.  Her vital signs were so good the entire time.  The nurses were surprised how well she did, considering she has a little hissy fit anytime one of them tries to touch her to do her diaper change, take her temperature, etc. 

This is me and my baby girl!

We got our first family picture while she was out of her bed also.

She wasn't happy to go back into the bed.  She cried.  I was sad too, I understand.  But she calmed down very quickly.  So tomorrow, if she's doing well again, Matt will get to hold her. 

2 steps forward, 1 step back

Yesterday afternoon, they extubated Annelise.  (took out her ventilator).  They put her right to CPAP (a mask over her nose giving her continuous oxygen).  But she was struggling so much, the team decided to re-intubate her.  :-(  They think that her trachea was inflamed.  She couldn't move the air past her throat.  They decided that they would try a course of steroids for 1-2 days prior to the next attempt to help reduce any inflammation.  She looked so sad after the re-intubation.  It was heartbreaking.  She had her eyes open and was crying. 

After re-intubation, her temperature was high....a little over 99 degrees F.  Also, her heart rate was high.  The nurse on Sunday had said that they were watching her hemoglobin levels and may need to do further blood work to see what was up.  Annelise looked worse and worse as the afternoon went on.  She was inconsolable, even though Matt and I were taking shifts standing at her bedside and rubbing her head and holding her hand. 

The nurse gave her a rescue, and then took blood to check her hemoglobin.  Then the NP came to look at her.  She did a very thorough exam of her.  There are many reasons for the fever and high heart rate.  Withdrawal from the sedation/pain meds that they stopped on Sunday, the hemoglobin being low, exhaustion from the extubation/re-intubation, or a possible infection.  They decided to run a bunch of tests to see which it was.  We found out late last night that her hemoglobin was a little low, but not seriously low.  So they started a blood infusion last night.  And then they continued it today.  The cultures for infection are being tested.  The withdrawal is something that we'll have to see if it gets better with time, as well as the exhaustion.

So poor Annelise is having a rough time.  She's not really happy lately and wants to be left alone by everyone it seems.  She seems the calmest when no one's touching her.  The nurses say that this is a combination of her CDH and being a preemie.  It's horrible not to be able to comfort her.  So Matt and I sat there for most of the day and watched her lay there.  She wasn't awake much at all. 

The plan from the neonatologist is to see if there's an infection.  She's on antibiotics preventively right now.  If there is, they'll treat it.  If not, then they'll start the steroids and maybe try to take the ventilator out this weekend.  We will see.

We really appreciate everyone's support through this journey.  It's hard to handle days like yesterday  and today, when it seems like she'll never get better.    But it is a journey, and Annelise is the strongest little girl I know.  She's such a fighter.  She just likes to do things on her own schedule.  So we wait for Annelise to tell us when she's ready to breathe on her own.

Ventilator...out?

We're hanging out at CHOP today with Annelise.  When we got here, her nurse Emily said that she may get the ventilator out today!  She's been doing so well since her 2nd hiccup on Friday.  I'm surprised and a little nervous.  But I know that they wouldn't take it out unless they thought she could handle it.  Her lung has expanded more since that last little bit of fluid drained.  That shows the doctors that her lung volume could be enough for her breath on her own.  Also - she's breathing above the ventilator.  So she's doing a lot of the work on her own.

When I went to get bloodwork done today, I got asked if I had just gotten out of the hospital.  As parents, Matt and I have to wear these navy blue hospital bracelets with Annelise's name and information on them.  They identify us to the CHOP hospital staff as parents.  It's interesting to explain it to people when they ask.  I say that my daughter was a preemie and in the NICU at CHOP.  Then they ask how she's doing....and I get to say "Okay!".  Because she is doing okay right now.  I'm glad that I get to tell the truth! :-)


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