10/19/10 - 9:00 am

So, yet again, I have started my day with tears.  I honestly don't know how I have this much water in my body.  Surely after all the tears I have cried already, I should be completely dried up.  I am struggling to put one foot in front of the other these days.  I am so very tired of seeing my newborn daughter hooked up to a million tubes and wires.  I honestly don't care how nice everyone has been, and they really have been, I don't want to see another nurse taking care of my daughter.  That is supposed to be my job.  I am supposed to be rocking Riley to sleep and waking up in the middle of the night to feed her.  I would sacrifice almost anything that I possibly could at this moment to make that happen.  I am struggling to be a good mom to Zoey right now and am trying so hard to keep it together whenever she is around.  I am sure that we will be the very best parents that we can be for Riley, and we will get her anything that she needs.  I just so desperately want to get her big enough & well enough to come home where she belongs.  I hate, hate, hate that Riley's 1st holiday and possibly the 2nd as well, will be spent in a NICU.  I fully intend on dressing her up in her costume on October 31st.  I guess it's a good thing that she's too little to know what is going on.  I can only pray that we will get enough of this medical stuff behind her before she is old enough to realize what is going on.

On a brighter note, Riley increased her weight from 5 lbs 10.7 oz to 5 lbs 11.4 oz, almost an entire ounce.  Hopefully she can keep this rate of weight gain up and get herself that much closer to being able to have surgery.  Also, I spoke with the daycare that we have been planning on using for Riley when I go back to work and luckily they told me that they would be able to accommodate a feeding tube.  I can't even begin to tell you how much of a load off my shoulders that is.

So we have a plan, and that is what Josh & I have to focus on, as hard as these days may be.  We need Riley to get to 4 kilos.  Then we need to assess getting the G Tube and re-assess Riley's ability to swallow. In the meantime I am praying that with increased size and maturity perhaps the swallowing may improve to some degree.

I have reached out to the local 22q support group today and hopefully I will hear back form them rather quickly.  I know that I need some help mentally & emotionally to be able to move on to the next hurdle.