Monday, December 29, 2014

20 Weeks Old

Merry Christmas and a Happy New Year!

Abby is now half as old as my pregnancy was long - I'm not entirely sure that sentence made sense, but whatever, I am very tired. Jameson and I are also celebrating our seventh anniversary today! Last year we had to forego any celebrations due to my out of control morning sickness, so we're excited to let my sister and her husband hang out with Abby for a bit while we get out for a fancy dinner.  Hopefully the munchkin will behave herself!

Abby has had a weird week. 

Highlights include:
- Celebrating her first Christmas! She was awarded a brief trip out of the step-down unit to see the hospital in all its decorated splendor. She also received a multitude of lovely things from her many admirers around the continent, thank you everyone!
- Visiting with family in from out-of-town. We had some of Jameson's family here over Christmas, and some of my family are here now. Abby has loved hanging out with everyone, and we haven't minded it too much either ;)
- We've been enjoying lots of sweet smiles, baby babble, and seeing Abby actually show some interest in a few of her toys!

Less awesome things (Lowlights?) include:
- Abby starting a serious puke-fest Christmas afternoon that continued through the weekend and on into today. Turns out her white blood cell count was very high, and a urine culture suggests that she has a urinary tract infection. :( She's been started on antibiotics. 
- She had to have an MRI to assess whether or not the code event caused any noticeable brain issues - while the results came back looking ok, she screamed through the whole thing. It was pretty dreadful. My poor pumpkin.
- The oxygen saturation levels in her blood have been dropping in her sleep (de-satting). We're not sure why this is happening all of a sudden or if it's related to some of her other respiratory issues, but she's on the list to have a sleep study done.

Other things:
- We're working on re-establishing Abby's pacifier sucking skills. Since heart surgery she has wanted absolutely nothing to do with the pacifier or bottle. While this sort of oral aversion is pretty common after a long period of intubation,  for kids like Abby who have never really been able to eat by mouth, it's very important to keep up with the use of these muscles. Little by little she's coming around to it though. She's at least shown lots of interest in her fingers!
- We've also had the opportunity to start working with Abby in something called a tumble form chair. It gives Abby the chance to work on her sitting skills without having to hold her head up completely on her own. She has a very difficult time with head control, so this is great for her.

All in all some ups and downs, but she's stayed pretty happy through everything, and we pray these new challenges will remedy themselves quickly! Our holiday celebrations continue to be odd, but wonderful - we hope all of your holidays have been merry and bright as well!

Sunday, December 21, 2014

19 Weeks Old

It's a good thing I have these posts to look back on, otherwise I'm pretty sure I would have lost count of how many weeks old Abby is now - but as it happens, last week was 18, so this week must be 19. ;-)

On Wednesday, Abby finally got to bid the CICU goodbye, and we headed back to our home away from home: the cardiac step-down unit. I can't tell you how happy we were to get back over here. Though we had some wonderful doctors and nurses in the CICU, and had the chance to meet a lot of truly special families, there is a certain tension in the CICU that just doesn't exist in step-down. Just minutes after getting to Abby's new room, we were sitting on the floor with our nurse, NP, and Abby in a bouncer instead of the crib. If we can't be at home, I feel like this is a pretty good substitute. We were laughing and trying to make Abby happy by singing Rudolph the Red Nosed Reindeer - it was like a huge weight had been lifted.

We're getting to see more glimpses of Abby's personality returning, including lots of smiles during the day and even her first sleep laugh! It's been so good to see our sweet girl having happy moments again after such a rough month.

Unfortunately though, Abby is still having some odd spells of being completely inconsolable for hours and hours on end. Before being extubated this last time, she never had anything even remotely resembling these fits - and the doctors all seem to agree that something's up (I know some babies go through periods like this, but nobody seems to think this can be explained by anything "normal"). They don't know that it's all withdrawal related, so Neuro is getting back involved to make sure that everything she went through post-heart surgery (e.g. the code event, cpr, etc) didn't cause some sort of issue. She'll be having another MRI, as well as a sleep study, to try to get to the bottom of her irritability and breathing issues.

We're looking forward to family coming in for Christmas. Though it may be atypical, we're going to make the most of our first holiday season with our little bird!

Sunday, December 14, 2014

18 Weeks Old

Abby has started doing much better in the last couple of days. She was able to be weaned off the nasal cannula yesterday morning and finally is able to paw freely at her tube-free face! She has developed a new love of chomping on her fingers, and she still needs to work on not scratching up her sweet little nose and cheeks. 

She's finally happy being held again, and she's spending more and more time awake and not furious. I still wouldn't say she's happy, and she's still fussier than usual, but it's a huge step in the right direction. 

Once we can get her completely off of some of the meds she's on she'll be ready to move back to the step-down unit! After almost a month in the CICU, it will be so nice to get back to our home-base. 

Wednesday, December 10, 2014

4 Months Old

Dear Abby,

You are 4 months old today! I prayed that today I would be able to tell you that things were so much better, but I can't do that yet, sweet baby. 

Since last month, so much has happened. You have had three surgeries and your daddy, puppies, and I moved to a new house. We also celebrated your first Thanksgiving! Though you were still in the hospital, and recovering from open-heart surgery, we watched the Macy's Thanksgiving Day Parade together and you got to meet some more of your aunts and uncles. 

Some truly scary stuff happened too though, Abby. The day after Thanksgiving I thought we had lost you. The doctors were trying to help you when your lungs weren't working very well, but instead of fixing the problem, your heart rate and oxygen saturation plummeted. I remember looking frantically between your face turning blue and your falling heat rate on the monitors and being overwhelmed with a single thought. She's dying.

Almost in response to my thought, the doctors hit the code alarm while a nurse all but dragged me out of the room. I was trying to call your daddy, but I couldn't figure out what to do. The nurse called him while the social worker took me by the shoulders. She asked someone to call the chaplain, and I panicked, "not the chaplain, anyone but them, the chaplain only comes when something terrible has happened." 

I cried and cried while doctors and nurses were running around, calling out different instructions. At one point, somebody yelled for quiet, and the whole pod instantly fell silent. I remember nothing between that and one of the residents coming out to tell me that you were still alive. There had been a point where they couldn't find your pulse and had administered chest compressions, but you were alive. 

It was terrible, Abby, truly terrible, but I am so thankful that you made it through.  If I didn't treasure every moment with you before, I certainly do now.

You were kept on the ventilator from then until two days ago. The doctors prepared you as best they could to be taken off the ventilator, and everyone was very hopeful that this time would be a success. But, as we've come to expect, nothing is ever that simple. You are still struggling with one of your lungs collapsing. It's difficult to pinpoint the root cause, but lots of measures are being taken to try to get it to inflate again, and avoid a repeat of what happened a week and a half ago. I won't lie though, when I walked back in the room yesterday to find them doing lung treatments again, my heart dropped. Not again, please not again. Luckily, so far you're doing ok with them. You're struggling through withdrawal from all of the sedatives they had to have you on when you were intubated, but it seems like like little by little you're getting more comfortable. I think these next few days will be very important in understanding your healing process from here on out.

Though this month has been so so hard, Abby Wren, I am more thankful than ever to get the opportunity to love you. Yesterday marked the one year point from first finding out you were going to be joining our family, and though nothing has happened the way I would have anticipated, I look at your beautiful face each day and am reminded what a blessing you are - an absolute miracle.

I love you, Aberdeen. Keep fighting, baby bird.

Your Mommy

Sunday, December 7, 2014

17 Weeks Old

Abby is now 17 weeks old and has made a lot of progress in the past couple of days! Lots of fluid has come off and she is back to her normal size. Yay! They've started doing pressure trials in anticipation of extubating early this week, fingers crossed. This involves setting the ventilator to mimic being extubated (they can't just turn it off, or Abby would effectively be breathing through a straw) - that way they can see how ready she is to extubate with the security of having the ventilator already in place. So far she's done well enough to make them happy. Another yay!

Hopefully, now that she's had time to heal, she won't face the same respiratory struggles she dealt with previously.  She's been slowly weaning off the sedatives, and we've gotten to see her eyes more and more without her being super agitated. She's been bound and determined to pull out all of her tubes and wires, so she has to wear soft restraints - which at first we were really sad about, but they actually seem to help her stay calmer. We are hopeful that this next extubation attempt will be successful and that we can start looking at moving to the cardiac step-down unit soon!

Thank you for all of your kind words and thoughts in regards to Jameson's post earlier this week. Though these were sentiments we've discussed at length, we're never really sure how other people will react to the feelings we've had to contend with throughout this process. It's really encouraging to hear such positive responses. It helps us lift our heads up a little higher and allows us to be honest in a situation that involves a lot of doubt and insecurity. The love that has been shown our family is truly astounding. Thank you, a million times over.

Abby will be turning 4 months old this week and I pray that I'll be able to update with lots of good news!

Aaaaand, for your viewing pleasure - this is what happens when your kid has heart problems and you get a cold:

Friday, December 5, 2014

General Updates and "Embracing the Suck"

Abby has had a pretty good past 48 hours - though she is still intubated and sedated. A common side-effect of surgery is fluid accumulation and retention, which Abby has been dealing with in spades. Her poor little belly has been puffed up to seemingly twice its normal size, which is putting pressure on her lungs and causing them to work even less efficiently. Before they can talk about attempting extubation again, they have to get the fluid off. This is a very tricky process because of her hypertrophy. Normally they would just administer a ton of diuretics and call it a day, but diuretics increase Abby's outflow obstruction - so they have to try a little of this and a little of that and hope the fluid comes off. 

Normally, I don't have trouble getting through the days here at the hospital. I hold Abby and watch shows on the iPad or play with Abby while she's in the crib. We do tummy time and work on bottle feeding, and generally the days go by pretty quickly. Such is not the case at the moment. You can only stare at your unresponsive child for so long before it gets really really depressing, and there are only so many things I can do in her room to stay distracted - as Jameson would say, I think I have found the end of the Internet.  I understand why she needs to be in the state she is, but it still really sucks.  Which brings us to some thoughts from Jameson about our past week:


"Embrace the Suck...."


By Jameson Locklear


In the immortal words of Col "Curse" Platt (say it fast, it'll make sense), "embrace the suck, gentlemen." Usually delivered after getting news like "you're going to be working 14-hour days until we deploy for four months" or "we're going home, but we have an exercise for 72 hours right when we get there." In other words, it was a challenge to move past your frustration, anger, and embrace the terrible-ness of the situation you're in. It was also a tacit acknowledgement that what he just asked us to do was ridiculous and annoying and shouldn't be happening, which sometimes was all that we needed. And that's where we are now.


Aberdeen is super-fluid overloaded right now. So much so, that her mother and I have been hesitant to really take pictures, because maybe we just don't want to remember it. They are slowly getting her to pee out the excess fluid, but it is a painfully awful waiting game. She just looks so uncomfortable laying there intubated and huge with fluid, but she's getting better. Last night was really good and I'm happy about that.


I wanted to write about last Friday's "code" and its effect on me. Bethany was kind enough to comply with my request.


When she "coded" last Friday I had just dropped off my brother at the airport and I received a call from Bethany's phone, but instead of her voice it was a nurse telling me that there had been an emergency and Bethany needed me to get there as soon as possible. At the time, I was an hour away and with little information. What's the best thing to do when you don't know what to do? Make more people concerned and worried. So, I started calling people. Once all of my calls were completed I started thinking.


At least it's over and she's not suffering anymore. Maybe we can go away for a while. I wish that I had gotten to teach Aberdeen how to throw a softball. I wish I had known how she spoke and what she was interested in. I'm so glad that I don't have to keep going to the hospital all of the time. Please don't let her die...but if she's going to, please don't just torture her for the next few months and then have it happen.


I was overwhelmed. I decided to call the hospital and they got me in touch with Bethany. She told me that Aberdeen was still alive and that they had done chest compressions. That was overwhelming as well. I finally got to the hospital and saw both Bethany and Aberdeen. Then the physical exhaustion set in. I don't know if I've been that tired ever.


This Monday we found out that the chest compressions separated her sternum and she had to be opened back up. I was so angry. I thought someone had missed something. Turns out they didn’t, but it was the second most difficult day for me of Aberdeen’s life.


Now, I'm doing alright. I'm embracing the suck. This is not fun. It doesn't matter that it could be worse, this is bad enough.


All I want is to find out what Aberdeen's favorite movie is and why. What food she likes the most. What she believes about herself and her experiences... how has all of this affected her? Someday.

Monday, December 1, 2014

Out of Surgery

Abby's procedure went fine and her sternum has been rewired. The breaks in the wires caused Abby's sternum to separate by an entire centimeter - which multiple cardiologists told us they'd never seen before - apparently she received really good CPR on Friday. Hopefully now that this is fixed she will finally start to heal. Please pray that everything goes smoothly for the next few days so that we don't have to deal with anymore setbacks on Abby's road to recovery. Thanks.

Surgery #4 - Sternal Rewiring

We just found out that when Abby had to have chest compressions done on Friday that the wires that were holding her chest together broke. She will have to go back to the OR to have her chest rewired shut - the procedure will most likely be early this afternoon.