This week has had many ups and downs. Ali is still not tolerating her tube feeds very well but we have made the decision to attempt to increase the volume of her feed very slightly anyways because she hasn’t grown since she was born (in length or mass). Not growing could affect her neurological development so it’s crucial that we make some changes to ensure that she is getting proper nutrition. The other option would be to increase the calorie value of her formula but that hasn’t been overly successful in the past. Today she seems a little uncomfortable on the increased volume of the feed but so far she’s kept it all down.

Yesterday the decision was made to discontinue Ali’s Digoxin. This is the medication that she was overdosed on earlier in our time here.   This overdose left her very ill and thanks to this medication we went through what was absolutely the most terrifying experience of our lives.  Once the medication left her system initially, it was restarted but unfortunately even on a very conservative dose, the concentration of Dig in her blood stream got really high again. We (Jason and I and the pediatrician) felt that she was going downhill again on this medication so after consulting with the cardiology team we all agreed to take her off the med and leave her without cardiac medication and just see how her heart reacts. We will probably be looking at a new medication for her next week but for now she is in a safe place and if she goes into SVT there are trained professionals around to intervene if necessary so we’re comfortable seeing how things go without so many meds in her system.

We have been attempting to give her bottles. She hasn’t been overly successful yet. Her ability to swallow seems to have been slow to develop which is why she is primarly tube fed. Sometimes she is able to take in 5-10 ml of formula by bottle and at other times she chokes or gags. It’s going to be a slow process but it’s my hope that eventually she’ll learn to bottle feed.

We are very hopeful that once the dig clears her system she will begin to improve in all areas. Jason and I feel very strongly that after being OD’ed on Dig, it is not a medication that is good for Ali and we’re very happy that she’s not taking it anymore.

This morning Ali went for a “Gastric Emptying Scan”, no results yet. There were also some metabolic tests done and we are awaiting those results as well!

I will update again as soon as I have the chance to!