Sunday

Grace is tucked in for the night and a quiet weekend draws to a close. Tomorrow she will be one month old. We will see what the week brings since she has a barrage of new tests tomorrow. More updates to follow.

Off topic, I have been reflecting about the senseless loss of life in Mumbai, India over the last week. One thing Grace's struggle has taught us is how precious and tenuous life is. Every victim of the Mumbai attacks (as well a their killers), were once tiny infants like Grace and surely were loved by their parents and families. Their lives were infinitely valuable. I find it so hard to believe that any religious person (whether Christian, Muslim, or Hindu) can truly believe that taking the life of another will further their cause, advance their religion in the eyes of the world, or somehow lead them to salvation. It is a sad comment on the state of tolerance in the world today and how little value we place on life.

On Track

The results of Grace's head ultrasound were revealed to us today. No significant changes. We consider that a positive result. We would be concerned by increasing fluid build up in the ventricles in the brain, but although they are larger than they should be, the have not increased since the last one. We have another ultrasound Monday to check again.
Not much progress on the ventilator. She does well, but we are not moving very quickly on changes. Part of that is due to the holiday weekend, part of that is planned. She will get a cardiac echo on Monday to see how the PDA is doing since it might be affecting her ability to wean from the ventilator. At some point it will need to be closed.
Finally, they stopped giving her nutrition by her IV today and she is now completely reliant on breast milk via tube feeds for her calories. She is tolerating them beautifully and seems to be plumping out a little. I will try and get more pictures tomorrow.

Chowing Down!

Grace had another quiet day today. We really like quiet days. Yet another increase in her tube feeds today. We are now chowing down on 16 cc every 3 hours. She's a long way from porking out yet, but we are happy to see her put on a little weight. She had a head ultrasound today and we expect the results tomorrow. Fingers crossed.

Grace had a neighbor named Makenna for the first couple of weeks in the NICU. Makenna has been transferred to St. Louis for additional care and we have heard that that she is having a difficult time. We got to know Makenna and her family and they are kind caring people deserving of your thoughts and prayers. Please join us in extending our sincerest wishes and heartfelt prayers to Makenna and her family for a speedy recovery.

Happy Thanksgiving

Hope everyone ate well today. Grace did. Her feeds are up to 12 oz every 3 hours. She had a nice quiet day. Mom spent the day with her while I ran home to visit my family, and then we tagged and I spent the evening with her while Deb ran home to her family. Funny the things you have to do.

First Family Photo!

Here it is, the first photo of the Williams family to date. When we arrived for our evening visit, the nurse that was on asked us if we wanted to hold her. Deb was sweet enough to let me hold her for almost two hours. I was thrilled and nervous, but Grace seemed to settle down against her Dad's chest without too much complaint.
They made me snuggle her next to my skin which meant I had to change into a gown with a room full of nurses present. A tad embarrassing since they all seemed to be young and pretty for some reason tonight. My minor discomfort was more than made up for by the opportunity to keep Grace warm close to my chest and to feel her wriggle and kick. And no, I am NOT breastfeeding, although I forgive you for being confused.
See how this rollercoasters goes? Such highs and lows in the space of less than 24 hours.
Wishing you all a happy Thanksgiving. Remember to be thankful for those loved ones around you as we are thankful for you and all your love, generosity, friendship and unwavering support.

Tube Feeds

I'm looking for a more positive note today. Grace has been tolerating her feeds so they are going to increase the amount. It will now be 3cc every few hours in a bolus dose. This should help her grow and gain strength for whatever comes next. We have spoken with the cardiologist, the neonatologist and neurosurgery today, and seen her ultrasound ourselves.

Basically if the ventricles in her brain fill too much with fluid (hydrocephalus) then they will need to be drained. How they are drained will depend on how she is doing. An indwelling reservoir would be preferred, but if she is not strong enough to go to the OR for that, then serial taps of the fluid are an option. Let's hope it is not necessary. Regardless, the chances of her developing CP are extremely high, but to what degree is unknown. You can read on your own on CP. I am too drained to go into too much detail. Suffice it to say that there is no way to predict the severity at this time. We just will have to wait - until she is one or two.

We have neglected her heart lately. Unfortunately the ductus arteriosus is still open. This is the embryological vessel between the aorta and the pulmonary vein that is supposed to close at birth. See prior posts for a better description. She tolerates it well, but at some point it will have to be closed surgically. At the moment she is not strong enough to go to the OR so they have decided to hold off until either she is stronger or the PDA shows signs of becoming a problem.

Everyday Grace gets bigger, stronger and prettier. We become more exhausted, stressed and drained than we ever thought possible, but gain our fortitude to continue from Grace and the love of friends and family.