I haven't written much lately because the last few weeks have been tough. Overall, I feel like Heath and I were better prepared for our journey than probably 99% of heart parents because of our congenital heart and PICU background as nurses. This was true up until we took Addy home post-Glenn. In our defense, we didn't even see our cardiologist pre-op to discuss the post-op course because "oh you guys already know the routine...no questions, right?" was what they said.
So, after our 5 day stay we took our sweet Addy home. Within 24 hours we quickly realized that this was no longer the sweet baby we handed over before surgery. She was a short tempered, clingy, incredibly moody baby who sort of resembled a pissed off smurf while she screamed for periods of 30 minutes to an hour at a time. Addy quickly became affectionately known as "dragon baby", for she looked as though she were going to spit fire at us any minute. Every time I attempt to lay her down while she sleeps, as I gently lift her away from my body I see that she is holding her breath in preparation for the neverending scream to come. She's sneaky all right- she appears to be sleeping soundly, yet she detects the slightest attempt to lay her down and is not going to have it.
On day 9 we called the cardiologist office....We asked, "Is this normal? We are shoveling Tylenol and Oxycodone into her on a regular basis but this is just not our child". Basically the answer we got was yes and there is nothing they could do but the headaches should only last about a week and she will start getting back to herself. Great, meanwhile my ears have been ringing for 4 days from a child screaming in my face. There is no worse feeling than knowing your child is hurting and being unable to console her or take her pain away. I feel helpless. We are tired, frustrated, and worried that our sweet baby is not going to return. In our defense I will say that Heath and I do not usually see these kids this far out of surgery. We take care of them while they are nice and sedated, and intubated. Then, when they come off the vent, we give them nice generous doses of Morphine until they are sent to the floor happy little campers on heavy narcotics. What we wouldn't have given for some Morphine the last 2 weeks....
2 weeks post-op, we have our follow-up appointment with Dr Kavanaugh. Yes, the screaming episodes are still going on. In addition, Addy has basically refused to eat anything by mouth since we brought her home. She starts to suck the bottle and then starts screaming bloody murder and won't take any more. Dr Kavanaugh assures us that the irritability is normal and in time it shall pass. She suggests giving it the full 6 weeks of post op recovery before we get concerned. Easy for her to say when she doesn't see how miserable she is. She also says no more Oxycodone for her....ok, can Heath and I have some? Now that the Glenn is done she should be burning a significant amount less calories than before but she only wants to go to 27 cal/oz formula right now to give her time to heal.
3 days ago- OUR SWEET BABY RETURNED TO US AND DRAGON BABY HAS LEFT THE PREMISES!!! At 3 weeks post op, the day finally came. The day when Addy finally seemed to turn the corner and start acting like herself again. Up until now Addy still would not take anything by mouth without screaming but it is slowly improving again. She now smiles constantly and is actually more of a clown than ever before! It seems that she has lots more energy than she did before, which is good except that she refuses to even nap because she doesn't want to miss a minute of anything! She has found her voice again and coos, aahs, and squeals constantly. She knows just what gets our attention and finds it funny when her antics work. She is learning to eat baby foods, even though we technically haven't been given the go ahead to start adjusting her feeds, I am. When I inquired about starting to push for PO feeds and starting more foods the cards nurse basically blew me off. We have come to the conclusion that Addy has gotten a bit spoiled with the NGT and knows that she doesn't have to eat by mouth to get a full belly. They said that now she isn't as high risk anymore, so why are we continuing to do Q3 hour feeds around the clock? What other 5 month old do you know that has to get woken up in the middle of the night to feed when they are not hungry? Tomorrow is her next RSV shot so hopefully I will be able to get a good game plan from the pediatrician but otherwise I think Momma Bear is going to have to take maters into her own hands.
The last 3 weeks have been a physical and emotional rollercoaster, for all of us. I thank God every day that Addy has done as well as she did. I read some other families blogs about their journeys and I realize that it could still be so much worse. Some days I have self pity but for the most part I think the fear is still the worst part. I know what the "worst case outcome scenarios" are, and although those are the last things I want to thing about happening, sometimes you just can't help it when the possibility is staring you in the face. I don't think there will ever be a point where we will go whole days, weeks, or months without examining every aspect of Addy's appearances and behavior for possible signs of trouble. We know only too well that she will never be completely "out of the woods", but I am going to make every attempt for her to be able to do everything as though she were complately healthy. I am looking forward to the days where there are no more NG tubes and she can eat like a regular baby. I still believe that Addy was intended for something great, otherwise why would she have been given us to take such excellent care of her? Coworkers often say to Heath and I that they just don't know how we do it. On one hand, I feel like we barely do some days. But I would say that response is mostly based on our sleep deprivation over the last 4 and a half months. Otherwise, my response is, how could we not? For every frustrating moment that I have about feeding, or medicines, or irritability- it only takes one smile from Addy to make it worth every minute. We didn't ask for Addy to be born with this, but we know that God has an ultimate plan for us all, and that we will fight to the edge of our life for her. In many ways I feel blessed to get to be Addy's mom. She is my biggest hero for what she goes through every day of her life.
