Holly RSV update

In case you haven't heard yet, Holly got RSV a couple of weeks ago.  She was admitted to the medical center in downtown Houston on Dec. 5.  She had a severe case, with pneumonia, bronchiolitis, a partially collapsed lung, and I think at some point the doctors were making up names for "complications" just to mess with me.   It's been a rough time, but yesterday she made a big step by getting off the ventilator.  Today they moved her out of the PICU into the regular children's ward. 
To answer some FAQ's

1. We don't know how or where she got it.  We were not encouraging strangers to come to our house and sneeze on her bedding.  We took many, many precautions, but this is a highly contagious virus that is present almost everywhere in December.
2. RSV stands for Respiratory Syncytial Virus, but the NICU called it Rapidly Spreading Virus. In older kids and adults, RSV acts like a bad cold. 
3. Former preemies like Holly (and babies sometimes) are unable to fight on their own through RSV because of low immune systems, and fragile, small lung tissue. 

We hope to have her home soon.  The doctors have been talking about transferring her to a closer hospital or doing some home health care.
 Thanks to all of our family and friends who have yet again put our precious Holly into their prayers.

halloween and stuff

 Here's bunch of pictures from Halloween and the past few weeks. 

 Mallory's dance class buddies

Below: Us at the trunk or treat

 Max chose this costume two days before Halloween.  I was delighted that he chose something at all, let alone something so easy.

 Mallory is a blue fairy

Morning cuddles

 My headless horseman pumpkin

 Holly loves her new Bumbo

 

Translation: "I want to play with Sarah" (our next door neighbor)
Interpretation:  Max thinks he can drill a hole large enough for him to escape into the neighbors' yard.  Keep dreaming!

Don't worry Grandmas, she's perfectly safe.  Oh, what am I saying, you'll worry anyway!

Holly's status

I forgot to mention on my last post how well Holly is doing.  She is off the apnea monitor and the oxygen for good!  Her weight gain is right on track and she is catching up on the charts.  She also just had a follow up appointment for her eyes, and so far there is no evidence of common preemie issues like near sightedness, shaky eyes, and lazy or crossed eyes.  Somehow she is sliding through unscathed again!  We are so grateful just to have her here with us, and it is an added bonus that she is turning out to be so healthy.  Thanks, family and friends, for your prayers and support.  You have made Holly's and my world rosy and wonderful.

Finally, some more Holly pictures!

 OK, there are a whole bunch of these, and I don't have the time to describe each one.  She's just cute, eh?

 The next seven were taken by Frost Fotos, not me (obviously!)

If this won't make you come visit, we don't know what will

Holly's first month at home

Get ready for some absolutely normal baby pictures!  I hope to bore everyone with their non-dramatic nature.  We've had enough drama to last us for years.  Holly has been very well behaved for us at home and overall she is a pretty easy baby.  She is content, sleeps well, and eats well.  What more could you ask for?  It's just a matter of time before we can kiss the oxygen tank and the monitor good-bye.  Meanwhile, it's nice to have them for our peace of mind.  Mallory and Max are in love with Holly and they are eager to help. 

Holly's temporary room, 1st day at home

Max's first time holding Holly

Holly's first walk in the stroller

Kitty dancin'

Every girl likes to wear a fancy dress sometimes

First bath at home

Holly is home!!!

We brought Holly home yesterday at 2:00 PM.  She finally went 5 days in a row with no Apneas or Bradycardias!  We had a wonderful rooming-in experience at the hospital on Monday night and didn't sleep a wink.  We just kept getting up to go look at her.

 It has been such a joy to have our entire family under one roof.  Words fail to convey that feeling.  Jason is staying home this week, so it is extra special, and easier on me!

Here is a video that I made for a baby shower that Cheryl Avery threw for us on Saturday.  Thanks, Cheryl!  

Holly's due date video (no, really)

Holly has made it to her due date and is doing very well. She is now 6 pounds and 4 ounces. The doctors thought she might make it home this week, but they didn't like a few things about her sleep/feed test which they performed yesterday. It just means some medication tweaking and another test to weed out possible causes. She is mostly having issues with reflux and apnea, which will go away in time.

Meanwhile, here is a video compilation I made of our "Holly berry."

 Another long day at the Nicu...

Wake up, Holly

Some daddy time for Mallory and Max.

No tubes!

Well, in these pictures at least.  After Jason and I gave Holly a bath we shot a few short movies of her without those pesky tubes.  Currently, she only uses the nasal tube for feedings and the cannula while she is taking her bottle. 

 Happy Father's day Jason! Grandma Brenda made him TWO pies.  Lucky boy. 

                                         

                                          Look at that face!

5 pounds!!

Holly hit 5 pounds today!  She is also having three bottles per day, and is getting better and better at feeding.  The doctors are hinting at her being able to go home on her due date if she keeps doing so well. 

I will post some pictures of her later, once I get them from Jason's camera.

Surgery before and after

Holly has made it through another surgery, and she is recovering nicely. She still has a little redness around her incision but that's about it. Her eyes are doing well, and she'll receive weekly eye exams to check her progress. Above, is Holly before her surgery. She was awake and adorable, and it was hard to know that we wouldn't be able to hold her for a while.

Jason insisted on taking this picture because it was the one good thing that happened on surgery day. There was a big mix-up of whether Holly would be getting both procedures done on the same day, or a week apart. We were very frustrated that the staff seemed unable to co-ordinate the two procedures. It's a long story, and was really no-one's fault. In the end they made it up to us by letting us wait out the surgery in this nice little room. It had a fridge stocked with lunch and goodies. Sweet! I'm not posting any pictures of Holly while she was in recovery from her surgery. She didn't have her make up on.

Ta-dah! This beautiful sight greeted us on Friday night. No more ventilator, just the cannula (the small oxygen tubes in her nose), and a cute little outfit! She is finally maintaining her body temperature on her own, so now she can wear clothes. Aunt Isa sent some adorable preemie clothes that are made for 3-6 pounders and those outfits have been waiting patiently in Holly's drawer until now.

Best day ever!

Here she is holding in her pacifier all by herself. She loves to nibble on it, which is a good sign that she will bottle feed well when the time comes. Her intestines are tender and it will take a while until she is able to digest as well as she was before the surgery. So bottle feeding will have to wait a while.

Sixth through Eighth week

At the end of week eight, Holly weighed in at 3 pounds and 11 ounces! We are so happy to see some chubby cheeks at last. Above, Holly is about to pull her Cpap tube out of position yet again. She's always trying to grab things around her.

She's wearing one of my hats! I like it when they tied her down like this. It looks pretty cozy.



Other than the skin to skin hold, we can bundle her up in a blanket, which is what dads usually do. I like to do it this way sometimes because I can see her cute face as I hold her.

Jason took this picture on Saturday, May 15th. They were changing her Cpap prongs, so he was able to get a shot of her face without all the clutter. Look at those pink cheeks!

I haven't been able to see her since last Tuesday becuase I've had a stupid cold. It had better leave soon, because I really miss her! Coming up on May 26th is her Colostomy reversal surgery. They call it the "happy surgery." It's when they reconnect her intestines. No more pooping into a bag, and one more step closer to coming home!

Holly's fourth and fifth week

Holly recovered from her infection a week ago. We are so happy that she is back on the Cpap machine so that I can hold her again. We mostly only had videos from this time, and not a lot of pictures. It is so cute to hear her cry!

Holly's micro-preemie diaper and a size 4 diaper.







Jason's triumphal return from the youth service activity in the rain. He adapted his motorcycle with the "Springville irrigation holster." It is a pipe secured with zip ties to hold a shovel.