Random Thoughts

Over the last 24 hours Saela has continued to make slow but steady progress in the right direction. At one point she had her O2 weaned to 48% - but due to sensitivity to other treatment changes had to go to a higher percentage last evening. She is currently back at 50% and doing well at that number - the team will continue to try and wean her O2 percentage today. (Room air O2 is 21% for those that are interested.) She is off BOTH of the medications that were being used to support her blood pressure - so that is a fantastic step in the right direction. We have also started to wean her sedating medication. She is still very sensitive to change - so we are taking things slowly. For those with medical curiosity - her current working diagnoses include: pneumothorax (collapsed lung), pneumonia/pneumonitis, persistent pulmonary hypertension of the newborn (PPHN) and hypotension (low blood pressure).

For the most part Steve and I are holding up well. This is not something that anyone ever imagines will happen to them. It's hard to believe that just one week ago everything was proceeding as it normally should and them bam - curve ball. We are very lucky to have such a vast amount of support from our friends and family. I think there are church congregations in greater than five states that are praying for us right now. Routine seems to help me (surprised?) - every couple of hours I need to pump breast milk and then use the restroom (for those that know me well - again not a surprise.) This small but essential task gives me something to do other than sit and watch numbers dance across a screen. It makes me feel somewhat useful - knowing that eventually she will use the milk I am providing.

Everyone always says - enjoy this period because 'they' grow up so fast. Thoughts like that run through my head and I try not to dwell on the fact that "this was not how it was supposed to be" - because God has a plan. He will see us through this in his own way and on his time.

What was envisioned is so drastically different from reality and yet this has now become our life for the time being. We get up and we go to the hospital. We spend the day with our daughter watching her through her little cocoon - longing for the moment that we get to hold her. I only briefly held her after she was born and Steve has yet to have that same opportunity. We see other parents for which this has also become their reality - one I'm sure for them was also unexpected. It's hard to even explain the feelings of loving this little person so much and feeling so helpless in her care.

My mom is here right now (a trip that was planned previous to the events that have occurred - coincidence - I think not) and has been a great help - especially with Jax & Jilly. At least this way they are not alone the entire day and evening. I think it's one thing to expect for them to take a seat on the back burner when a new child comes into the home and entirely another to be totally abandoned for days on end while we suddenly disappear. Jilly was pouting a little bit yesterday - but she seems to have rebounded nicely - nothing sharing a little apple with "mom" can't fix. Steve's parents and our friends have also been a great support over the last few days.

I hope to get this blog website out to all of you soon. The hospital library computers block me from using my e-mail and since the storm on Friday, I have been unable to use the Internet at home - therefore, unable pass along the web address. I have found that writing about this has been very therapeutic for me. It is also less emotionally taxing than trying to speak the same words out loud.

We anticipate the day when we can look at her without all of the extra equipment, hold her, or even just hear her cry - but we did get to hold her hand today and let her tiny fingers wrap around ours and for now that is enough.

With love,
Steve, Brenna, Saela, Jax & Jilly