Today was a discouraging day. We spent the day at home and then returned to the hospital to find that Ali has hit another wall with her feeds. She’s stopped tolerating the feed increases and is pretty uncomfortable. The pediatricians have decided to stop trying to speed up her feeds for now. They are also extremely concerned because although she has gained some weight, she’s still not growing lengthwise or in head circumference. This is an indication that her nutritional status is poor. So now they are going to try to increase the calorie content of her feeds instead of trying to increase the rate of the feed. Once she can tolerate more calories then we go back to increasing the actual rate of the feeds. This is such a long process.
Jason dropped me off tonight and has headed home so it’s just me here now. I’m still holding onto the hope that we are on the home stretch here and that we’ll be home before I know it. But in all honesty I’m afraid that the road got a little longer again today. I feel really along right now and want nothing more then to go home.
Today things seem pretty good! It’s actually calm in Ali’s room and right now she just seems like a normal baby! The vomiting has stopped (she’s still gagging though), the SVTs have calmed down and she hasn’t had any episodes since yesterday morning, she’s is on vacation from her monitors (so no constant beeping) and she’s snuggling happily with her Daddy. Other then the feeding tube you wouldn’t even know that she’s been so sick. I hope this can last.
Occupational therapy came in to see Ali this morning. She’s been refered to OT because she’s hypotonic or floppy. The OT is going to work with her while she’s in the hospital and then Ali will hopefully be referred to an OT at home.
Tonight Jason and I are both going home and Jason will bring me back tomorrow. The point of the trip was for me to see Madi and do laundry but Madi has the flu so I won’t be able to see her and that makes me so sad. I’ll get to do laundry though and see my sweet “boys” (aka the dogs). We are really lucky that our neighbours are kind enough to take care of Madi even when she’s sick otherwise I wouldn’t be able to go home and it would be dirty shirts for me this week!
We arrived at the hospital yesterday as usual, and our little baby was all wrapped up and looking very sweet and comfortable. I noticed she had spit up a bit, so I proceeded to unwrap her and clean up all of the mess. The more I unwrapped, the wetter she was, so I kept going until she was down to her diaper. I figured I went this far, so we cleaned her and put a new diaper on. Our sweet little baby went from being sleepy and comfortable to screaming her head off for 10 min! Doh! Sometimes Daddy should leave well enough alone!
I got her all wrapped up again, and settled her down on a pillow on my lap, and she again looked very happy and sweet. And as she looked at me with those beautiful eyes, all sweet and wonderful……. she proceeded to burp in my face and let out a fart that I would be proud of, and filled her diaper like I have never seen before. Jill is always sad because the baby doesn’t resemble her……well……I think I found something similar!!! (Just kidding Jill)
It has been a long, long haul for us. Thankfully we have a lot of support from Jill`s and mine looking after Madi, and our neighbors have been nice enough to take her for my set of days off so I can spend it here.
Thank you all so much.
Jason.
Today has been a great day feed wise. Ali has been getting her feed over an hour and forty five minutes and has been tolerating it well. She had some vomiting this morning but other then that she’s had a very comfortable day.
She is pretty mucousy today, she’s been coughing up a lot of crap. Her cold is clearing up so hopefully the mucous clears up soon too.
Today has been a pretty exciting day for SVTs. Allison has gone into SVT today more times then I can count. The nurses counted 5 SVT episodes while Jason and I were out to lunch (about an hour and a half). The resident has been here a couple of times and although she’s not sure what’s going on. She consulted with cardiology and they are happy just to watch her to see what her heart does for now because she’s in hospital and there are lots of people here to intervene if need be. The SVTs are still short and she always converts back to normal rhythm on her own so everything should still be okay. Cardiology may decide to restart her on medication but it would be a totally different class of meds from the first type and at a very conservative dose. They have ordered an ECG for later today or tommorow so we’ll see what that says. Ali should be pretty sleepy for the rest of the day because SVTs are like running marathons. She’s run countless marathons today so she probably needs a good nap.
