Sunday, November 30, 2014

16 Weeks Old

This past week has been the most difficult of my life...and I'm a lot older than 16 weeks.

Our sweet Abby girl is in kind of a rough place, where the doctors don't seem very sure of what is going on or what would be the most helpful for her. She's had a few more "events" that thankfully were caught before they became life-threatening. It appears that when she gets overly worked up, she either holds her breath or her airway closes off, and she stops moving air altogether. It's the same sort of thing that she did the day before her g-tube surgery, but the episodes are becoming more frequent. They currently do not know what is causing this or how to avoid it, but are working on a plan. Part of that plan involves dong another examination of her airways. When she had her bronchoscopy done a week and a half ago, the pulmonary team was unable to complete their scope (due to her desatting and needing to be intubated) and didn't get a full picture of her airways. So, the next time they extubate they may do so in the OR in conjunction with trying another scope. They are also talking about exploring whether or not there may be a neurological component to the episodes. What the team does agree on, is that the issue seems to be multi-factorial and that while they will look for one, there may not be a clear cut answer. Until then though, she has to stay sedated so she doesn't constantly gag on the endotracheal tube or get herself so worked up that she stops moving air again. Seeing her sedated for so long is very hard on us.

This week, just looking at Abby has made me cry. She looks better this afternoon now that some of the swelling in her face has gone down, but for the last few days she has looked more like the baby we saw a few hours after birth, not the spunky Abby we've gotten to know over the last 16 weeks.  I'm thankful that she's starting to look a little more like herself again, and I pray that things start to improve so we can begin attempting to collect answers and hopefully hold our baby girl again soon.

Friday, November 28, 2014

It's been a terrible afternoon

Abby's ok now, but has been intubated again and put back on heavy sedation. Her breathing has been getting progressively worse throughout the day, resulting in the cardiologist recommending they put her on cpap instead of the high flow respiratory support. They think one of her lungs may have collapsed, and when they started the cpap her heart rate plummeted. They called a code and I was ushered out of the room as at least a dozen others ran in. They had to administer epinephrine and do chest compressions, but they got her heart rate back. Though she was able to breathe, she wasn't doing so very well, and they decided to re-intubate her. Her numbers are looking good now, but we are very rattled.

Wednesday, November 26, 2014

Post-Op Updates

It's been two days since we handed our baby girl over to the cardio-thoracic surgical team to fix her tiny heart. She made it through the surgery beautifully, and though her recovery has been slow-going, everyone has assured us it's going well. 

They have kept her heavily sedated since she returned from the OR, which has been hard to deal with, but we understand that she needs time to rest and heal from such an intense procedure. She came back from surgery covered in more tubes and wires than I could count (even more than after neurosurgery, which I didn't think was possible), and was on more intravenous drips than I would have ever expected. The scariest of these are two chest tubes that are draining fluid buildup from her chest cavity - eventually they will be surgically removed, but it may be a while before they're able to do that. Late last night they finally were able to start removing a few tubes (she was finally extubated and switched to the high-flow nasal cannula for oxygen support), and have started to wean down some of her medications. This has been a much more prolonged period of recovery that after her previous surgeries, but they want to give her the best chance to heal successfully and not put too much strain on her little body. 

Hopefully now that things are progressing, we will get to hold her soon and see some glimpses of Abby's personality returning. 

Thank you a million times over for your continued prayers.

Monday, November 24, 2014

Out of Surgery!

We were just visited by Abby's surgeon, and everything went well and there were no surprises. She was on by-pass for approximately 2 hours (which, if you haven't looked up, do - it's the most amazing thing), and he was successful in closing both the ASD and PDA. It will still be at least an hour before we can see her. 

Thank you, thank you, thank you for the amazing amount of prayers that went up for our sweet girl today - she can definitely still use them as she recovers, but we truly appreciate how much love has gone Abby's way already!

Surgery #3 - Open Heart Surgery

They took Abby back for her open heart surgery at about 7:45 this morning, and we just got word that they've gotten started at 9:30am. 

We talked to the surgeon this morning, who said that he'll be closing Abby's ASD and PDA (but leaving the VSDs alone, as that would complicate the surgery greatly, and they don't believe they're causing any problems). In the grand scheme of open heart surgeries, an ASD closure is considered fairly straightforward, but Abby's case is made considerably more difficult by the severity of her hypertrophic cardiomyopathy. They will be taking extra measures to protect her heart during surgery because of this, but the surgeon and anesthesiologist expressed that this was very concerning to them.  They don't necessarily think that this surgery will solve all of her breathing problems, but we hope that it will at least help.

Abby's blood oxygen saturation levels started dropping again last night, so they put her back on oxygen support. Though this wasn't what we were hoping, it did give her a break from working so hard going into surgery today. She was sucking on her pacifier again and seemed pretty content.

Thank you to everyone for your ongoing prayers!

Sunday, November 23, 2014

15 Weeks Old

Abby is now 15 weeks old! She's had a less eventful past couple of days and was weaned off of the nasal cannula last night. With that and the NG tube now gone, this is the first Abby hasn't had anything stuck to her face for more than a few minutes! She is very much enjoying pawing at her face sans mittens and is having to learn how not to claw out her eyeballs. We love getting to see her awesomely chubby cheeks.

Though Abby's numbers have evened out considerably since Thursday, she is still working too hard and hasn't completely bounced back to where she was on Tuesday. Because of all this, Abby's open heart surgery is scheduled for tomorrow. If everything goes as planned, we're looking at a late morning start-time and for the surgery to last 4-6 hours. Though we aren't looking forward to tomorrow, we hope that it helps our sweet girl and that she won't have to work so hard to simply exist anymore.

We're praying for the surgical team, the anesthesiologists, the doctors and nurses who will be caring for Abby post-op, and of course, for our baby bird. 

Friday, November 21, 2014

It was a rough night....

Abby girl had a particularly rough night last night.  They were able to get her CT scan done later in the afternoon, but the sedatives they were giving her caused her blood pressure to drop a lot. While they were working on administering extra fluids to bump up her blood pressure, they decided not to extubate. Unfortunately, Abby did not respond well to being intubated once they started weaning her off the sedatives. Her heart rate, respiratory rate, and temperature spiked a few times throughout the night, culminating in a heart rate in the 240s, respiratory rate over 100, and a 105 degree fever. The cardiologist finally just told the respiratory team to pull her tube despite her blood pressures, and she finally started to even out. She's still on high-flow respiratory support and back on sedatives, but she finally seems comfortable. 

Needless to say, nobody was very pleased with how she did overnight, and since pulmonary didn't come back with anything conclusive from the bronch, they're talking open heart surgery in the next week. They want her to be able to go home, and are pretty sure they've exhausted all other options now, so heart surgery it is. 

We don't have a schedule for anything yet, but ask for prayers that things go smoothly leading into what will be a very hard day for all of us. 

Thursday, November 20, 2014

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.

Monday, November 17, 2014

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.

Tuesday, November 11, 2014

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: 

Sunday, November 9, 2014

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.

Your Mommy

Thursday, November 6, 2014

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!

Sunday, November 2, 2014

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).   :)