The Waiting Game

That is exactly what our life feels like... right now we are just waiting for Casey to show us all that she is ready to come home. She has continued to do well off of oxygen, so well in fact that this week they removed her pulse ox monitor because she wasn't having problems with desats (dropping her oxygen saturation level). Now her biggest hurdle for being released continues to be her bottle feedings. For several days after being removed from nasal cannula she had quite a decrease in the quantity she was finishing at her feeds. Most likely this is because her body was tired from working harder to breathe on her own. We have been encouraged over the last few days that the amount she has taken at her feedings has increased, and she is now attempting about 6 out of her 8 feeds by bottle. She is usually finishing anywhere between 1/3 to 3/4 of her full volume before getting too sleepy, but today she actually finished 2 full bottles for the first time in almost a week. Several times she has even been wide awake a few minutes before her scheduled feeding time, and she has not been afraid to let us know that she does not care what time the clock says, she is ready to eat now! When I spoke with her nurse yesterday about her progress, she said it is a great sign that she is attempting so many bottles, and now she just has to have the endurance to finish them. Even with all this eating, her weight gain has been a little slower this week, but as of tonight she now weighs 6lbs 0.14 oz (from past experience we know she tends to hover around the next pound for several days, but we finally made it over the 6 lb hump tonight)!

As for last week's other prayer requests, her diaper rash is almost completely healed! This week Casey also had her latest eye exam, and one eye does show progression of ROP. The doctor is attributing this to her higher saturation levels in the days before she came off of oxygen (which also happens to be when she was tested), and he still expects it to clear on it's own. She is scheduled for another eye test in two weeks, and prayers are requested that this one will show the improvement we have been hoping for. This week's other prayer needs continue to be for increased stamina with her bottle feedings, healing of her IVH (bleeding in the brain), and that she will maintain her heart rate and not have any bradys (heart rate drops). She has had a couple this week, and in addition to completing all of her bottles, she has to remain brady free for five days before being released.

For now we continue to wait for our girl to grow stronger and show us she is ready to join us at home. In many ways these last few weeks of waiting are the hardest because we are so strongly anticipating the day we get to have her with us all the time, and every set back feels like it adds a little more time. While we are eager for her hospital stay to come to an end, we of course know our end goal is to bring home a healthy girl, and we know that the day we will be able to start our next chapter as a family is coming soon.

Enjoy the latest pictures of Casey's first Halloween and other shots from the week:

Looking quite adorable in her Halloween onesie

Until she decided photo op time was over and she was ready to eat!

"Seriously, I want food!"
 

Not really sure what to think of her monkey costume!

Our little monkey!

One of our sweet nurses made her a new sign for her 1st Halloween

Fresh and clean after a bath



This eating and breathing thing is hard work!

Bottle time with Daddy!

So sleepy!

Nothing like a bottle to put her right to sleep!

Naked baby!

Good stuff!

This picture just cracked me up.  However the male pattern baldness my child has recently started sporting does not make me laugh.  Good thing Mommy just bought her LOTS of headbands and bows!

 Did I mention that she is not afraid to let us know when we are not fast enough with her bottle?



They might have lost, but Casey sure looked cute cheering on the Rangers!

This is what 85 days in the NICU will do to you.  On the plus side, I have now discovered I can sleep anytime, anywhere, and in any position!



Progress and Prayer Needs

Well we are officially the proud parents of a 5 lb girl! Casey sailed through 4 lbs and is well on her way to breaking out of the 5 lb club. As of today she weighs 5 lbs 10.5 oz, which means I have been busy washing and folding her adorable newborn wardrobe! The biggest celebration is that Casey came off of oxygen this morning!!! She has been at 21% oxygen (room air) on her nasal cannula for the past two days, so her doctor decided this morning to try her without any oxygen support and so far she is doing well breathing on her own. This is huge news, since just last weekend the doctor told me there was about a 25 percent chance she would could come home still on oxygen. Also, she is making progress on her feedings, and she is starting to finish 2-3 complete bottles and attempts about 3 others throughout the day. When she is too tired to wake up and eat, or the 20 minutes they allow for bottle feedings are up (after 20 min. she burns too many calories which will not enable her to gain weight), then the remainder of her feeds are being gavaged through her feeding tube. The doctors seem satisfied with her progress, and are indicating that she is on track for finishing all 8 of her daily feeds soon. Right now our little night owl prefers to save finishing her bottles for her middle of the night feeds, and is often more tired in the daytime (mommy is hopeful we can turn this schedule around before she comes home!) I spent last Saturday night with her, and while it was a really great feeling to be the one to soothe her and feed her throughout the night, the revolving door of nurses and the constant monitors alarming throughout the Special Care unit did nothing for my sleep deprivation. I'm thinking it may be a couple more weeks before our next mommy/daughter slumber party. As for her progress toward her other homecoming goals, she has been doing well with apnea/bradycardias for the past few weeks, but she has recently had a few bradys during her feeds. They think the episodes are most likely because she has been changed to a faster flow nipple on her bottle, and she may not have been quite ready.

While we definitely are celebrating and praising God for the amazing progress Casey has made, we also received some pretty upsetting news this week. On Monday, Casey had another head ultrasound, and the doctors had informed us it was routine and just a follow up to the one she had not long after she was born. When the doctor called me with the results that afternoon, we were pretty caught off guard to hear they determined Casey has grade 1 bilateral intraventricular hemorrhaging (bleeding in the brain on both sides). This has probably been the scariest news so far because it could potentially impact her future and what we can expect as she grows. The positive is that most grade 1 and 2 bleeds tend to correct themselves on their own, and there is really nothing the doctors need to do at this time. A grade 1 also does not necessarily mean that she will be more likely for long term disabilities, as grade 3 and 4 bleeds often do. Probably the most frustrating part for me is that she won't have another test until 5 months from her due date, which will determine if the bleeding has healed or if it has progressed. For us, this means more waiting, and if you know me, you know I don't do waiting well (Patience may be a virtue, it just doesn't happen to be one of mine!). This news is unfortunately not something with a quick fix, and I have to say that after two months of trying to stay optimistic throughout everything, this one hit me pretty hard. I will admit that I have been avoiding a blog update the past few days because I was still trying to come to terms with what this could mean for our daughter's future.

For now I am trying to stay encouraged by all of our good news, and for the many that continue to pray for us daily, here are our prayer needs: First, that Casey's body is working to heal the bleeding in her brain, and for us to remain peaceful that God is at work here. Also, that she continue to do well without oxygen and that she can remain off of the nasal cannula. Prayers also are needed that she can find some relief from the nasty diaper rash she has been suffering from, which despite many different creams and other treatment has just not healed.

Whew! Well if you have made it all the way through this long post, here are her latest pictures:

 Rockin' her Rangers gear.  Also her 1st picture without her cannula!

 Check out that double chin!

Such a cutie

Peaceful girl

 Casey's new digs in Special Care.

A close up of her new bed.

 A view of where Casey spent her first 2 months.  Goodbye NICU Nursery E!

Last time to take her temperature before leaving the NICU.

I just love this expression!

Transitions

Today marked a big day for our sweet girl. After 65 days in the NICU she was moved to Special Care! At Presby Dallas, this is the special floor for babies that have been in the NICU and are now stable enough to require a lesser degree of care. This is also the next step toward taking Casey home! She now has a private room and the nurses here will work with us to get ready for caring for her on our own. We also have the option of staying overnight with her (I am already trying to mentally prepare myself for the sleepless nights that come with staying in the hospital again when I stay this weekend). Although we are ecstatic that she is doing so well, it also means that this week we had to say goodbye to all our wonderful NICU nurses.  We especially will miss Casey's three amazing primaries, Lindsey, Amanda, and Lauren, who have taken such great care of our girl and been so invested in her care. It will be a big change to get used to new faces caring for our daughter, but we knew this day was coming soon since her doctors started mentioning the possibility of moving her if she did not have a reaction to her two month vaccinations on Friday. Yep, you read that right, the Doodlebug is now 2 months old!

In other Casey news, she had her latest eye exam on Monday, and her eyes are looking about the same for now. The doctors have reassured us that this is still normal for her gestational age and they should clear up on their own by the time she is full term. For now, they will continue to test them every two weeks. She has been attempting two bottles a day, and  is consistently taking between 25-35 mLs of her 44mL feeds. Now that she is in Special Care they will start cue based feeding, or attempting bottle feeding whenever she is alert and awake at her feeding times instead of automatically starting her other 6 feeds through her feeding tube. The morning after my last post she hit the 4 lb milestone, and her current weight is 4 lbs 13 oz! I guess it won't be long until I have to stop referring to all those 5 and 6 pounders in the unit as "chunkers," especially since tonight when we dressed her, we discovered that she has already outgrown many of her cute preemie clothes.

One of the biggest highlights of the past week is that my amazing friends, Alicia and Amber, hosted the most adorable baby shower for me. It was so wonderful to catch up with so many of our friends and family, and we are so blessed to have such an incredible support system who we know are faithfully praying for us each day. I can officially say we are pretty much set now with all the necessities of  bringing Casey home! Many people have asked when that will be. Her major hurdle now is to take 8 full feeds by mouth and to continue gaining weight. She will also have to be brady free (meaning no apnea/bradycardias or big heart rate drops) for 5 days and she will have to pass her car seat test before she can be released. Our biggest prayer needs now are for her to continue to make progress with her feedings, for her eyes to mature, and for her exhausted parents to squeeze in as much rest as possible (between me getting up to pump every few hours and Brian finding the time to study for his upcoming P.E. exam, this 5 hours of sleep thing is definitely starting to take a toll on both of us).
Here are the pictures from this past weekend and of course the latest of Casey:

How cute are we?

Looking quite adorable in her pig pants

...and in her matching pig hat

Her Daddy makes me smile too :)

Bottle feeding with mommy

Two Months Old

The fabulous hostesses

 The cutest invitations

 The cake tasted as amazing as it looked!

 Onesie cookies

Baby Casey banner

Could the monkey balloon be any cuter?

Moving in the Right Direction

Since my last post Casey has made some major progress. She has been controlling her temperature well and her breathing was stable enough that she was moved to a big girl crib last weekend! We got to say good-bye to her isolette, or her "box" as Nurse Amanda called it. Casey's breathing also improved so much that after only 6 days back on CPAP she was moved to a nasal cannula (clear prongs in her nose). This is huge for us, because after 7 weeks of only glimpses when they changed out her equipment, we can finally really see our daughter's beautiful face. Words cannot describe how amazing it is to get to look at the features you have been dreaming about for so many months (although the jury is still out on just who she looks like). Without her CPAP hat adding pressure to her eyes, she is also staying so much more alert and awake, and I would almost swear she has even smiled a few times. Her latest eye exam showed improvement, and the doctors are now saying that although she still has premature eyes, they are no longer indicating minor ROP. She will have another test in two weeks, and we are encouraged that her eyes will continue to look better each time. Another huge milestone that comes with being on a cannula is that Casey got to try bottle feeding for the first time! The doctor gave orders for her to take one bottle by mouth every day, and she took 10 mL on her first try, 14 mL on her second, and today she took her full 35 mL feeding on her third try at a bottle. Yesterday, I got to be there to see her eat and get trained by the occupational therapist so that I can start giving her bottles (wow, let me just say there is a lot to remember when feeding a preemie!) Aside from being a "gulper," she is catching on quickly and it was just incredible to watch her knowing how far she has come. She is still hovering at just below 4 lbs (3 lbs 15.1 oz), but we are crossing our fingers that she will get there in the next day or two. We expect she will probably remain in the NICU for another week or so, and then hopefully she will move to Special Care where she will have a private room until she is released (her due date of Nov. 8 is still the goal). Enjoy the latest pictures of our sweet Doodlegirl!

There's the sweet face we have been waiting to see.

 Sweet sleepy girl

 All tucked back in

 Our big girl in her crib

 So cute in her polka dots

Taking it all in

Loving her bottle

Burp time

Getting a bath and she was mad about it

 

 I wasn't fast enough with the camera to catch what I thought was a smile

Looking good in her purple bedding

Mommy's Little Strawberry

Letting us know she did not appreciate being unwrapped from her swaddle

Daddy's girl

Big yawn