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.

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.

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.

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!

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. 

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.