Giant leap forward!

Gabe is continuing to do well. His oxygen saturations continue to be in the 90's on room air and his respiratory rate is staying 40-60's. He has increased work of breathing only with feedings at this point. His color is good... some mottling, but no blue episodes. They were saying in rounds that he doesn't appear to be showing signs of heart failure anymore. So the big question is what happened last week? No one totally knows for sure, but here are some theories that have been bounced around. Gabe was stressed from something and his heart just couldn't take it causing him to work really hard to breath and have difficulty recovering. He may have been stressed from something viral, not being able to tolerate feeds due to poor pacing and reflux, or getting to the point where he required cardiac meds and went into distress quickly (even though this is not typical). Nothing he has shown has really been typical. The blood they drew looking into potential enzyme deficiencies is still pending so we're still waiting to see if there is another diagnosis out there, but b/c he is looking so good, they're thinking he has recovered and it just took him a long time to bounce back and there may be no other diagnosis. They are hoping we will be able to go home Friday or Saturday. He will still have a feeding tube. We tried giving him a bottle very slowly today and paced him every 4 sucks to catch his breath. Gabe can't suck and breathe at the same time, so he needs breaks from sucking to recover. He just took 2oz by mouth! They want him to have 70ml per feeding, so we're putting the rest down his feeding tube. Home Health will come to our house to check on the tube feedings. He will also stay on Captopril, Lasix, and Zantac once we go home. The docs are acting like the plan is back to where it was which is fatten him up as much as possible and aim for surgery around 4 months. Gabe is the most wide awake he's been in over a week. He's tracking with his eyes and playing and acting himself again. It's crazy to think how a week ago he was so sick and we were so scared.

The waiting game

We're still waiting on lab results to see if there is another diagnosis out there to explain Gabe's ventricles. The labs take awhile to run, so it's a waiting game right now. He did have a video swallow study today and did really well. He may have some reflux, but his palate, throat and esophagus all look really good when he swallows. They are spacing out his tube feeds and we may be able to offer him a bottle in the next couple days. Other than that, there are no changes. He looks good clinically, we are just hoping his Echo continues to show improvement with his ventricles. He slept all day today so of course he'll be awake all night. Thanks to Kelly, Tammy, and Andrea for the treats. I ran home just for a minute and must have missed you. We really appreciate everyone's support. Reading this blog is the best way to keep updated on what's going on. It's hard returning all the phone calls. If you don't hear from us, we apologize...it's been busy around here, but keep checking the blog.

1 step forward

Gabe's echo came back with some improvement today. His ventricles definitely still aren't where we want them to be, but they have improved some and I'll take it. They tested his adrenal glands and they are normal. They also sent some blood work looking at enzymes to give us more clues as to what's going in with the weak heart pump and they are still pending. They moved us out of CICU today and we are now on A6C. It's nice to be able to have visitors and food in the room again. Speech and OT also came by and tried some tastes and he was able to take 10ml by mouth before looking stressed and that is a big improvement from Friday. They'll probably do a swallow study and sleep study sometime this week while we're waiting for lab results. They will also probably do another echo at the end of the week and hope that it shows even more improvement.
I went to Lactation today and they gave me some herbal medicine to increase my milk supply. They also told me that I've lost alot of weight very quickly and need to eat more regularly and increase my protein. So, for those of you who have offered to make us food (cough cough...Rachel), I'm to the point where I will graciously accept.
Keep thinking good thoughts everyone...I hope we're on the right track. This is crazy rollercoaster and I'm ready to get off!

Here I am crying out for mercy and calling out for Your help, so if You hear me I need a hero

Gabe is still in ICU. He has a feeding tube giving nutrition. He has a PICC line which is an IV catheter inserted near his heart to give him medicine. They have him on Captopril and Lasix. The valves in his heart are still leaking significantly. The more concerning issue continues to be his ventricles. The bottom half of his heart is not beating strong enough and this is something surgery would not correct. They won't even do the AV canal repair until his ventricles are working better. The medication they tried giving him was not really improving this function. The big question is why. All the doctors talked about him yesterday at a care conferenece and they all agreed that poor ventricular function to this extent is rare with AV canals and Down Syndrome. They think something else might be going on with the heart...something seperate causing poor ventricular function. They are going to draw a bunch of labs on Monday to look at all sorts of weird stuff to see if there is another diagnosis going on with the heart muscle itself. They may eventually do a cardiac cath or biopsy, but that's still a maybe. They will check another ECHO (ultrasound of the heart) next week to see if there are any improvements. Gabe looks pretty good and is still a cutie. He looks so good for having such a weak little heart. Thanks again for all the thoughts and prayers. I apologize for not answering my phone very often or returning calls. It's exhausting explaining everything and it's busy around here with lots of docs in and out. Justin and I are hangning in there. We've been sleeping at home since Gabe is stable and we're trying to take brakes from the hospital when Gabe is asleep and the doctors aren't coming in to talk to us in order to stay sane. We'll keep you posted on how everything goes.

update

We're still in Cardiac ICU. Gabe has shown some improvement over the last day or two. The big question is why is all of this happening so soon. He has pulmonary hypertension and leaky valves in his heart. The surgery could help with this some. More concerning are his ventricles. The bottom half of his heart is not pumping efficiently and we don't know why. They're trying a medly of medications to help with this. All of the stuff we're seeing is not typical of an AV canal. They usually have gradual work of the heart, not suddenly like Gabe. Speech and OT came by today and tried giving him a bottle. While his oxygen sats stayed high during the feeds, his work of breathing increased and he started turning mottled (kinda blotchy looking). They decided to put an NG tube in (feeding tube). They are also giving him some blood to help with his labs. They might do a cardiac cath to check on pulmonary hypertension to see best treatment. A care conference is planned for Friday to review all the information and see the best course of action. He is looking better, his monitor is alarming less, and he is getting nutrition now which are all positives. The Chaplain is working on getting a priest available to Baptize him here at the hospital in the next couple days. Thanks for all the prayers and positive thoughts.

Not good...

Cash went into congestive heart failure on Monday and was taken to the Emergency Room and then Cardiac ICU. At Children's they determined that he had a lot of leaking around his bad valve and that his ventricles were not pumping well. I left my trial and came up to Children's, and Michelle and I spent the night here last night. They are running a bunch of tests on him today, mostly trying to determine if they'll be able to hold off on the heart surgery as long as they want to. The odds on the heart surgery are very good at six months old, but at this age all the doctor would tell us is they're not very good and we'd cross that bridge if we came to it. Part of the problem is that they don't know what caused the failure to come on so quickly (he was fine early Sunday afternoon), and so we are meeting with a lot of different specialists - pulmonary, ENT, cardiology, etc. We know he is going to get a PICC line (which threads through an artery to his heart) and an NG (feeding) tube.

Congestive heart failure for a baby is not irreversible like it is for an adult, so there is still a chance we can come through this without any permanent impairments. Last night was troubling until around midnight, but they seem to have stabilized him since then. He is back to having irregular O2 levels even while on oxygen, which puts us right back to where we were the day he was born. He actually has more wires and IVs than he did the first time he came through - the picture is below. Still the situation is steadily improving from last night - they just took him to 2 liters of O2 from 7 liters last night.

We don't know a lot about the future yet, except that we'll be in the hospital for awhile. They are going to do more tests and are trying some medication on him that will help his heart pump better. The doctors are being typically obtuse about what our milestones are, but I suspect they're watching to see if he can take his medications orally/nasally rather than intravenously, and to see if they can get him back off of oxygen. At some point, if they can't send him home they'll have to do the surgery, but I don't know how much time they're willing to take before they call the shot.
JLL

Gabe makes funny faces

Gabe makes the funniest expressions. He has a very pouty bottom lip and a very playful smile. He is impatient when we are warming his bottle at night. Occupational Therapy said his suck is really good. Lactation pretty much gave me permission to stop trying to nurse because it just isn't happening. I am continuing to pump about 5-6 times a day. We are going for a speech eval this week so they can do a swallow study to see if Gabe has reflux (I really think he does). He doesn't throw up alot, but he seems uncomfortable after feeds and has lots of congestion still which makes me wonder if he is getting clogged from the refulx. We also meet with the Cardiology dietitian for another weight check this week.