"Never Trust a Preemie..."

It is a saying we have been hearing for the last 126 days, and we were reminded of its meaning Wednesday when our little one threw us another unexpected curve ball, this one involving surgery. On Tuesday afternoon, the doctor called to say she found what she thought was a hernia during Casey's daily exam. She ordered an ultrasound, and the results Wednesday morning confirmed a hernia that was adhering to her left ovary (and they suspected she probably had one on both sides). By that same afternoon, she was in surgery. Although it was not an emergency, since she would have to be operated on at some point in the near future, we opted to have the surgery right away to avoid coming back as an outpatient. The surgery was successful, and the surgeon assured us this is an extremely common procedure in preemies (36% for preemie boys, but he didn't know the stats for girls). After surgery, she was sent back to the NICU until she could be weaned off the ventilator. Probably one of my toughest moments throughout this entire experience was walking in that afternoon to see our baby back on a breathing tube. Initially we were told that she would probably come off about an hour post-op, but it seems the surgeon was a bit optimistic. Her numbers looked good in all her labs throughout the night, but she had a few bradys after the surgery and the doctors decided to keep her on the vent through the night until they were sure the anesthesia had completely worn off and she was waking up. It was a tough night waiting to hear that she was back to breathing room air, and just being in the NICU brought back a flood of emotions from the past 4 months (and now next to the tiny little ones, MY child was the "big chunker" that I used to refer to the term babies as).  Luckily, one of our old primary nurses was assigned to Casey both nights she was there, and we had lots of other familiar NICU faces that dropped by to check in on her and exclaim about how much she has grown in the two months since we have been in Special Care. Thursday around noon they were able to extubate her and restart her feeds, and on Friday she was moved back to Special Care. She is back to bottle feeding and so far is doing pretty well with her feeds, so the doctors think it is possible that the hernias were causing enough discomfort that they could have been contributing to her feeding issues. 

Casey also had her 4 month birthday (1 month adjusted) on the day of her surgery, and that same day she joined the 8 lb club (8 lbs 3 oz as of today). Her eye test went well this week, and the ROP is now considered Stage 1 in both eyes, meaning her eyes are showing progress on their own, and he won't need to see her again for 6 weeks. Casey's doctor also decided to try her on a 5 day trial of Prevacid for reflux to see if it would help with the discomfort she has exhibited during feedings, but their hope is to discontinue it quickly if it is not absolutely necessary. She also had her 4 month immunizations, and she is scheduled to get her first Synagis shot in the next couple of days, which for high risk preemies, is so important in preventing RSV during cold and flu season.

The plan is to watch her throughout the weekend, and assuming she continues to recover from surgery well, they will most likely discharge her at the beginning of the week. Right now our biggest prayer needs are that Casey will remain brady free (since it has been determined that we are going home on an apnea monitor she needs to be 3 days free of heart rate drops, and she has had a few post surgery), that she will continue to recover well from her surgery so that we can move forward with discharge, and that Brian and I will feel comfortable in our training over the next few days as we learn all about inserting NG tubes, running feeding pumps, and using apnea monitors, so that we are prepared to care for our sweet baby at home.
 
Here are the latest pics of our big girl:

Adorable and she knows it!

"Wait, what do you mean Mommy is going to insert my feeding tube this time?  Traitor!"

Monkey feet!

If you haven't noticed, I am a sucker for all outfits with things on the booty.

 Chillin' in the bouncy seat

 Stretching out

Her frog pose

Last weekend my grandmother came in town and got to see Casey for the first time since she was only a few days old.

Four generations of first born daughters

This is just too shocking not to post.  Above is the freezer we bought in September.  It is now completely full...of milk.  Apparently since I can't sing, and I can't dance, my talent in life is feeding my kid.  Now to solve the dilemma of what to do with new milk...

Our nurse left us a little note when we came in after Casey's feeding.  It says "I completed!!!" This was only her second attempt at bottle feeding again after her surgery, so we were all pretty excited!



A Light at the End of the Tunnel

It may be faint, but we can finally see a glimmer of light at the end of this very long hospital tunnel. As expected, this week the topic of discharge has been coming up a lot. We have had several conversations with two of Casey's doctors this week, and they are in agreement that developmentally, it is time for her to go home. She is much more alert and staying awake for much longer periods of time now, and we are quickly reaching the point where a bouncy seat and being held for the few hours every day that we can be there just aren't going to keep her satisfied much longer. Right now, there isn't a whole lot more they can do from a medical standpoint for an almost 44 week preemie who is off oxygen, that doesn't have severe reflux, is gaining weight well (she is now 7 lbs 9 oz.), and just needs more time to figure out this whole eating thing. The good news is that she has made some improvements in the volume she is taking at feeds in the last few days, and has even taken as much as 75% of her daily feed in one day. She is still pretty inconsistent from day to day though, and goes from completing 3 bottles in one day to none the next. The plan as of now is to give her until Monday to see if her volume picks up any more, and then we will make a decision about moving forward with coming home on a feeding tube at the end of next week or giving her one last week to see if we can go home "naked" (without any equipment) as the doctor says. Regardless, the plan is to bring her home by December 17th, so that we can get her scheduled for her first pediatrician, feeding clinic, and speech appointments before they close for the holidays.  Our prayer needs now are for continued bottle feeding progress (and for us to make the right decision about when to bring her home), for her eye exam on Monday to show improvement of her ROP, and for her last two discharge hurdles (staying brady free for 5 days and passing her car seat test) to go well.  We are crossing our fingers that we will have her home the week before Christmas!

Here are the Doodlebug's latest pictures:

 Wide awake

 Precious girl

 Posing with Daddy

 I think purple may be Casey's best color!

Ready to eat!

Sweet sleepy girl

She likes to poke herself in the eye...

 and she has discovered her nose!

This eating thing is hard work!

Thankful

Since my last post there have been a few changes, most notable that we now have a 7 lb girl (7 lb 0.7 oz as of last night). After another week of only minor improvement on the eating front, we decided to remove Casey's NG tube (or nasogastric aka feeding tube) to see if her hunger urge would take over when she didn't automatically get what she didn't take by bottle through her tube. She showed us pretty quickly that she wasn't ready. While she started out well and did improve to taking about 60 percent of her daily volume by mouth, it just wasn't enough to gain weight and stay hydrated long term. She had 3 feeding bradys on the second day, another big sign that all this eating was wearing her out, so we decided to put the NG tube back in. The two nights she was off the tube, I stayed the night with her to see if it would help if there was one consistent person feeding her. After getting a combined total of about 7 hours of very interrupted sleep over the two nights, and then playing an exhausting game of "Mommy, I dropped my paci...again" for an hour and a half one morning, I was ready for the comfort of my own bed! We are going to continue to give her some more time to grow stronger, and we expect if there isn't a significant change soon, that the doctors will start discussing the possibility of taking her home on a feeding tube. Please keep praying that her endurance will increase enough that this isn't necessary, but we are mentally preparing ourselves that it may be the best thing nutritionally for a while. Yesterday, we did get the good news that Casey passed her hearing screen! Now, we are just hoping to get the same news about her eyes soon, and prayers are appreciated that there will be improvement at the next exam in two weeks.

As for my health, I had my 3 month check up with my Endocrinologist today, and she was happy that my A1c level, or average blood glucose, is now at 6.1%. Compared to the 14% I started out at when I went into labor, (which was so high it wasn't even on the chart I got in my Diabetes education class), this is really good. Now we are going to work to control my lows (when I become hypoglycemic) by adjusting my long lasting insulin dose I take at night. Hopefully this will also improve when I am no longer living off of fast food and not eating as often as I should when I am running back and forth to the hospital.

As we prepare to spend Thanksgiving in the hospital (and my first Thanksgiving at home in all of my 29 years!), I can't close without mentioning some of the things I am most thankful for. As you can imagine, the list is pretty extensive as we have a lot to be thankful for this year, but in a season of giving thanks, I wouldn't have made it through the last 3 1/2 months without all of these things:

1. Casey - First and foremost I am thankful for our little miracle baby and all that she has overcome to get to where she is today. We know we have a long road still ahead, but we are thankful every day that she is here and for the precious time we get to spend with our Doodlebug.

2. An Incredible Husband- I can't even begin to imagine going through this long journey without Brian by my side. Words can't even describe the overwhelming love I felt when I saw my husband holding our tiny girl for the first time. B, thank you for being the strongest person I know. You are my rock and Casey is so lucky to have you as a Daddy!

3. Family - We are so lucky to have such an amazing support system in our family. Our parents have been there to comfort us and encourage us from the day I went into the hospital, and we appreciate you so much! I have to say a special thanks to my mom, who makes the long drive to the hospital every couple of days to sit with my sweet baby and who has willingly agreed to sacrifice her first year of retirement to watch Casey so that I can return to work when the remainder of my maternity leave ends. Brian's parents have also been incredible and have made the long drive up from Houston every few weeks to visit Casey. Our extended family has been so amazing in checking up on us and staying updated on her progress, and your words of encouragement have meant so much.

4. Modern Medicine - It goes without saying that without the advancements in modern medicine, Casey's future would have been a whole lot more uncertain. We have had an incredible team of doctors and specialists who have helped Casey overcome some pretty tough odds.

5. Amazing Nurses and Hospital Staff - We have been blessed to have some outstanding nurses caring for Casey, and I think our precious girl has made quite an impression on some of them as well. In the NICU, we were fortunate to have 3 primary nurses, Lauren, Amanda, and Lindsey, along with many others who were always there to encourage us about her progress, answer our bazillion questions, and have even checked in on us in the weeks since we have moved to Special Care.  We also loved our favorite Respiratory Therapist, Jeni, who always made sure her oxygen equipment was just perfect. We have now grown very fond of several Special Care nurses, particularly our weekend nurse Olivia, who always takes the time to sit down with us and talk about how much improvement she has seen.

6. Caring Coworkers and Faculty - I am truly blessed to work with the kindest and most compassionate faculty. I was flooded with cards and messages of encouragement from them when Casey was born, and they have continued to check on her progress and make my transition back to work so much easier. They also made sure we were well fed by providing delicious meals for many weeks! My fourth grade team has also been incredible, and I can't even imagine coming back to work without all of their help and support.

7. Our Friends and Blog Readers - We know there are so many people out there following Casey's story and praying for our daughter every day, some that we have never even met! We can't thank you enough for all of your kind words and prayers. Even though I can't respond to all of your messages, please know every one of them has been read and appreciated, and please keep the prayers and encouraging words coming!

We hope everyone has a blessed and wonderful Thanksgiving! Our nurses keep commenting on how expressive Casey is, so enjoy the many faces of Casey Elise:

"Look mom, no tube!"

 Look at those cheeks!

 She was over picture time!

 I can't get enough of this face.

Snoozing away!

Pretending she can actually hold her own paci...moments later we were putting it back in her mouth.

Big girl in a bouncy seat!

Our sleeping beauty

 My two greatest loves!

 Thanksgiving Family Photo!

 Happy Thanksgiving!

"But I don't wanna wear my Thanksgiving outfit! I know, I'll just spit up all over it!"

And this lovely face is the "Eww she just spit up, but quick get a picture of her cute turkey booty!" look.

The turkeys I made our nurses for Thanksgiving.  Another Pinterest idea!

100 Days

Well the triple digits have new meaning when they mark the number of days you have spent in the hospital. Yesterday on Casey's hundredth day of life, her weight was 6 lbs 11.4 oz and she was 18 3/4 inches long. Apparently at the hospital, 100 days isn't the big deal it is in elementary school, and the nurses do not dress up with 100 buttons, safety pins, or other items attached to their clothing to celebrate! It was still a pretty busy day for our little one. She had her eye exam, and it is still showing stage 2 ROP in her left eye, and stage 1 in her right. Her retina development has moved to zone 3 in both eyes, which is a a positive sign. This means that the retinopathy disease has not improved (stages), but her retina development (zones) has shown some progress. For now, she will continue to have tests every three weeks, but unless there is a significant change, the doctor does not anticipate her needing corrective surgery. The doctor also ordered that "since she is a big girl now," they are going to try lowering the head of her bed once again and they are going to stop venting her feeding tube after feeds, so time will tell what this does for her reflux.

As for the eating, I wish I could say she has made some progress on that front, but we really are in about the same place as we were last week. She is back to attempting about 5-6 bottles per day, and she takes between 30 - 45 percent of her daily volume, with the remainder gavaged through her feeding tube. The positive news is that we have switched from slow flow nipples back to the Dr. Browns system, and she seems to be having less bradys and handling feeds much better. This weekend, the doctor told us that in most ways she acts and responds like a term baby, but as far as eating goes she is still at about 36 weeks (let me tell you how enthusiastic I am about 4 more weeks in the hospital!) For now, the doctor continues to feel like the best option is to continue to wait and see if her endurance picks up. Another possibility we are considering is to remove her feeding tube for a couple of feeds and see if her hunger urge takes over when she does not automatically get the remainder of what she doesn't finish through the tube. My main concern with this option is that if she continues to only take a small volume, she might end up waking up to eat every hour or so. When you already spend close to 30 minutes bottle feeding and then have to hold her upright for 30 minutes after a feed, we could end up doing nothing but feeding, or getting ready for the next feed. Our doctors have also discussed the possibility of sending her home on a feeding tube, but from what I understand, when you insert the tube it is kind of a big guess as to whether the tube actually hit the stomach or the lungs, so I am pretty hesitant about that route as well. So the waiting continues....

Our main prayer needs continue to be for progress with her feeds, brady free days, continued eye improvement, and of course that her IVH (bleeding in the brain) is healing on its own.

Here are this week's pics of our little chunky monkey:

 She looks like such a big girl in her little pants outfit

 The nurses all raved about how cute she looked in the outfit my team gave us.

 The little bear bottom is the cutest part!

 Getting her swaddle bath.  She looks angry, but she actually seemed to really liked it.

 "What are you guys doing to me now?"

 Not sure if this look was to say "Daddy, please help me?" or "Will you people ever stop taking pictures of me?"

Fresh and clean

 

Our little cupcake

She has been so alert lately

Check out those arm and leg rolls

My husband thought this was hilarious (and yes, I realize I can't do this once we are at home and she is not on a monitor).

For a kid that screams like this when she wants a bottle, you would think she actually finish it!

In other news, my faith that we will have a perfectly well behaved child is wavering a bit after walking into the living room to find this little scene:

 Sienna decided MY chair looked cozy (after almost 9 years she most certainly knows that she is not allowed on furniture)

 And then there was Porter, who decided Casey's bouncy seat was the perfect place for him to lounge (Mimi, I will be expecting a phone call about this one!)

Due Date

It is hard to believe that today actually would have been my due date. While I am so thankful that Casey has come so far in the past three months, I can't honestly say that I wouldn't have wished she had an easier start. There is definitely some sadness when I think of what this day could have been, but at the same time it is hard to imagine we should have had to wait another 3 months to meet our sweet girl. Yesterday we celebrated Casey's three month birthday with an official weight of 6 lbs 6.5 oz, and today marks the day that Casey actually turns zero. Preemies are given two birthdays, the day they were delivered and their adjusted birthday, which is their actual due date. Their adjusted age is the age that is used to see how they compare on height and weight charts as well as how they compare developmentally to other babies their age.

Today was also our goal date the hospital has given us all along for when we could hope to take her home.  Unfortunately, we aren't going to make our goal of having her home by her due date, and realistically it could be a few more weeks. Overall, this week has been pretty frustrating as far as progress toward her homecoming goes. After my last post, Brian and I became increasingly concerned that Casey was having more and more heart rate drops while she was feeding. The nurses didn't seem too worried, and when we brought it up with the doctor she indicated that she would only be concerned if the bradys were happening at almost every feed. We then learned that the nurses were also experiencing quite a few dips in her heart rate when she ate, but they were often able to catch them and stimulate her before they registered on the monitor as a brady. This was leading the doctor to believe that these episodes were still infrequent. Our frustration level only increased when we arrived Thursday evening and discovered the alarms on her monitor had all been cleared, leaving us with no idea of what had happened for the last few feeds. We decided it was time to have some pretty serious conversations with the doctor. We both expressed to her that we were no longer satisfied with the "wait and see" approach, and we wanted every effort to be made to see if there was something more going on that was hindering her feeding progress. After hearing our concerns, the doctor ordered that she be changed back to the slow flow nipple, that the head of her bead once again be elevated, and that she be held in an upright position for 30 minutes after feedings as preventative measures for reflux (an extremely common condition for preemies). The doctor also ordered a swallow study and upper GI test yesterday to see if Casey is aspirating when she swallows. Thankfully, the results showed she was not aspirating, which would have meant thickening her feeds and switching her from breast milk to formula (pH imbalance between rice cereal to thicken and human breast milk). The test did show she has some minor reflux issues, but not enough to medicate. The good news: she is not suffering from severe reflux. The bad news: she is not suffering from severe reflux - which means there is no quick fix right now except continuing to wait for her endurance to build. Since the changes the doctor made, we have been encouraged that the heart rate drops have significantly decreased, so we are at least hopeful we are moving back in the right direction.

Our prayer needs this week are for her feeding stamina to improve without an increase in heart rate drops, for her eye exam next Monday to show improvement, continued prayers for healing of the bleeding in her brain, and for our strength as we get through this last stretch.

Enjoy the latest pictures of the Doodlebug:

I think at this point she has come to accept that I am going to take her picture in pretty much every outfit she is put it. 

Could she look any sweeter?

Giving me the one eyed "I know you are sneaking more pictures look"

Just chillin' with my paci

 Her confused look

This is the note that was on the wall after we talked to the doctor about our feeding concerns.  Bet you didn't know my kid could write already!

 

Trying to block out the bright hospital lights

 Checking out what mommy is doing

 Three Months Old!

Feeding in her new upright position