Out of Surgery

Abby is out of surgery and everything went pretty well. So far it sounds as though the g-tube placement was uncomplicated and they'll have results from the bone marrow samples in a couple days. The bronchoscopy wasn't entirely successful because of her need to be intubated, but from what they could see, their observations are inconclusive. They saw some things that were odd, but aren't sure whether or not they're concerning at this point. They couldn't do the CT scan of her lungs in the OR, so she is still sedated and intubated while we wait for them to be ready for her. Hopefully after that they will be extubate her, but we don't really know yet. 

Thank you for all of the prayers, hopefully the next few days will be uneventful as she recovers.

Surgery #2 - G-Tube Placement

Though Abby misbehaved yesterday and found herself back in the CICU after going into serious respiratory distress, it looks like everything is a go for today.

At approximately 12:30 this afternoon, Aberdeen will be having her g-tube surgery as well as a bone marrow aspirate and biopsy, a bronchoscopy, and a ct scan of her lungs. We are hopeful that somewhere in there will be an explanation for what is ailing our girl.

We've been appropriately nervous about this afternoon, but after a very restless night (for both me and Abby), I'm feeling especially anxious. Please pray that Abby does well through her procedures and has an uneventful recovery. Thank you.

14 Weeks

Brief update:

We have officially moved. Whew. It was a crazy crazy weekend, but it is done and we're working on getting unpacked. Even though the timing was not ideal, we are very happy with our decision - especially because it's looking like we may be inpatient for quite a while.

Abby's respiratory effort has not improved, and may even be a little worse now. Her white blood cell count keeps climbing, but they can't figure out a concrete reason for it. Hematology has gotten involved, and they are exploring lots of possibilities - some of them pretty scary. We're praying that the lung evaluation she'll have along with her g-tube placement on Thursday will shed some light on what's going on.

Abby still seems herself, and got to meet her Auntie Megan this weekend! Megan was a huge help with the move and is already such a sweet, wonderful auntie. 

Please pray that all goes smoothly on Thursday and that the doctors are able to find some explanation for what is going on with our baby bird.

Cath Complete

Abby did great during her heart catheterization today. Unfortunately, the cardiologist was unable to fix any of her problems in the process. They were able to measure the pressures in different areas of her heart and in her arteries, which was helpful in explaining which issues are the most problematic in Abby's unique case.

Here's where it gets complicated, and I will do my very best to explain everything...

What they found is that the blood flow across her ASD (a hole between the two upper chambers of her heart) is causing a pressure ratio of 1:2.5, when it should be 1:1 - this is a significant difference. This causes an overload of fluid in the capillaries around her lungs, which in turn, leak out, and they have to give her diuretics to expel the fluid. If her only problem were the ASD, they would simply diurese her and monitor her hydration levels. But, it's Abby, so nothing is that easy. The diuretics increase the outflow obstruction caused by her thickened heart walls (hypertrophic cardiomyopathy), so they have to give her more beta-blockers to keep her heart from overworking. This balance is nearly impossible to achieve, and ultimately means that she will have to have open heart surgery to close the ASD. What they are trying to determine now is when that will need to happen. The cardiologists are hoping that when pulmonary does their exam they will find something else that explains the increased pressure in the arteries around her lungs that can be fixed so that they can continue to put off heart surgery. If they don't, the pressure in her arteries could cause pulmonary hypertension - which is irreversible, and we'd probably be looking at heart surgery in the next couple of months. The bigger she is, the better she'll tolerate open heart surgery, so they really really want to put it off as long as possible.  

Though Abby did great during the cath, she had some trouble coming out of anesthesia, so we're spending the night in the CICU. She's just having some temperature fluctuations and increased work of breathing, and they felt more comfortable having her closely monitored overnight. Hopefully we'll get moved back to the step-down unit tomorrow. 

There was some question of whether or not she would be staying inpatient between the cath and her g-tube surgery next week, but now we know she will definitely be staying. Her white blood cell count has been elevated since admission, and it hasn't resolved itself, indicating that they still have some exploring to do to determine the cause.

Whew, that was a lot.  Here's our smiley girl shortly before heading back for the cath today: 

3 Months Old

Dear Abby,

You are three months old today, and it's been as many months since I last wrote to you. I've been, and am still struggling to find the words to adequately describe the time since you were born. Most importantly, I want to tell you that I love you. You are the most beautiful thing that has ever happened to me, and I treasure you more than I could have ever imagined. Feeling so strongly for you makes living our day to day even more difficult.  Because, baby bird, things are really hard right now. I hate watching you struggle, and I hate that I can do nothing to help you. It makes just existing painful. Today we have the nurse that we had your very first night in the CICU. I wasn't allowed to hold you yet, but he encouraged me to lean down over your crib and talk or sing to you - I will never forget that. But I haven't yet found the strength to sing to you without crying, and so many songs I hear make me burst into tears now. I didn't want any of this for you. I just wish that God would heal your tiny body, so that we can leave this hospital with you and never come back.

It has been amazing watching you grow and change over the last three months. After working so hard, you have now surpassed ten pounds and have grown out of your newborn clothes and diapers. You love to kick your legs and take walks down the hallway, but still hate sponge baths. We get to see a little bit more of your personality each day, and I am so proud of you and all of the strides you've made. You truly are miraculous.

We are getting ready for an extremely busy couple of weeks right now. This week, the doctors will look at your heart and lungs to determine whether or not there's anything we can do to be helping you more. Next week you will be having your second official surgery. I wish that I could stand next to you through everything and hold your hand, I wish you could know how fervently we'll be praying for you. Between your procedures we will be moving to a new house closer to the hospital. I didn't think I would care about leaving our current house until I sat in your room yesterday. The room your daddy and I spent so much time making perfect in anticipation of your arrival. The room I'd hoped you'd be spending lots of time in, laughing, smiling, and growing. The room that you've barely even seen. I know that we'll recreate your room in the new house, but something about it just won't be the same. I hope that someday you'll recognize that space as your home, instead of this hospital room.  

Though so many things about these last three months have been utterly heart-breaking, there is nothing in the world that makes me happier than seeing you smile. It helps me to believe that not everything you are experiencing is negative, that between all of the struggles, you still feel loved and cherished. I pray that you do. 

I love you so much, Aberdeen. You are my heart.

Love,

Your Mommy

We're going to have a crazy 10 days

We finally got the dates for Abby's cath and g-tube surgeries set and they are only ten days apart...oh, and we will also be moving within those ten days.  She will be having her heart catheterization this coming Tuesday, we are set to move on Fri/Sat, and she will be having her endoscopic g-tube placement the following Thursday. Because Abby is still exhibiting signs of respiratory distress, the ENT and pulmonary teams are also getting involved to assess her airways. They will be doing this during one of the procedures, so we won't have do another round of anesthesia, which is great.  We won't know whether or not we'll be coming home between procedures (just in time for the move) until after the cath. 

It should be interesting!

12 Weeks Old and working on a plan

Abby is 12 weeks old today! We are still hanging out at the hospital, but we're finally working on a game plan. Basically, despite trying some different things, Abby's work of breathing is still inconsistently labored. Sometimes she seems completely comfortable, while at other times she has a lot of nasal flaring, grunting, and abdominal retractions - indicating that something is just not quite right. In addition, she has developed a nasty cough that seems to be related to her NG tube/reflux. 

Yesterday we started working on a plan for either actually doing something or getting out of here. Firstly, we have decided that it is time to switch to a g-tube. It's been a very difficult decision to make, but her ability to feed by mouth isn't improving, and NGs weren't really designed for long-term use. We don't have a surgery scheduled, but are hoping it will be sooner rather than later, as Abby seems increasingly uncomfortable. Secondly, the attending cardiologist this week thinks it's time they got an actual look at her heart via a catheterization. This will allow them to see how much of a problem the holes in her heart (specifically, the ASD and PDA) are causing and better inform the doctors on what meds she actually needs, instead of just guessing. The procedure isn't considered a surgery, but still requires anesthesia. Our cardiologist is hoping they can coordinate the cath with the g-tube placement, but pediatric surgery doesn't seem to like that idea. Not much happens around here on the weekends, so we'll have to wait until tomorrow to get the ball rolling.  If they can get us in for either procedure this week, we'll stay; if not, we'll probably go home and come back. 

*I will update once we have a clearer idea of what we're doing*

On a completely different note, Abby got to spend Halloween here, which turned out to be pretty fun. The hospital passed out toys, the staff dressed up, and one of the nurses made hats for the kids in this unit.  I hadn't managed to get anything together for a costume before we were readmitted, but my mom made sure Abby was covered (with two outfits)! She made an absurdly adorable lamb (though I may be biased).   :)