2 weeks

Eli-Grace Mahala Schultz
Born March 14, 2016 at 7:57pm weighing 7lbs 15 oz and 22 inches long.  

Without getting into a lot of details, we had a slow start to labour, not really a big surprise, since this has been my mode of operation with both of the other girls.  Once things were really going, around noon on the 14th, the reality of our circumstances really hit me hard.  It was by far the hardest thing I've ever done, labouring with such an unknown waiting for me at the end of it.  Apparently I kept saying out loud between contractions, but I'm going to get to hold her, this was some kind of strange motivation, but it was the one thing I knew for certain, that no matter what happened, I would hold our baby Eli that day.  
Once Eli was delivered, I was able to pick her up.  Turns out God heard our prayers, I wanted so very much to have some time with Eli, to be able to bring her home.  As I held her, I realized she was breathing, her colour was much better than Elianna's, everyone in the room was amazed.  The doctors tried suctioning her, but there wasn't really anything to suction.  A bit of oxygen was used, just to encourage her to keep breathing.  Realizing things were stable, we had Milena brought in to meet her sister, and shortly thereafter made the call to go home as planned if she was stable.  Milena got the privilege of cutting the cord and was totally grossed out by vernix.  She went and got a wash cloth to wipe it off my shoulders and chest, so sweet!  We got ourselves together and headed home a few hours after Eli-Grace was born.

The first few days at home were a little chaotic, as we arranged our living space to accommodate our newest family member.  The key things were out of storage or still nearby from Elianna's life, but we hadn't officially made a space for Eli in our home.  Milena is the most doting big sister a baby could ask for, but needs some help channelling her love in ways that are helpful.  

I inserted a feeding tube when Eli-Grace was about 16 hours old and gave her her first feed shortly thereafter.  It went smoothly, even though it's a skill I hadn't used in over a year.  This time around, tube feeding was much less stressful and I had the confidence to follow my maternal gut instincts, rather than some feeding chart and pressure from doctors to meet calorie requirements.  I am pumping breastmilk again to feed Eli-Grace, and it is going well.  Again, much more relaxed this time, as I have confidence in my milk supply.  Our doctors and midwife have been amazing, checking in with us regularly, smoothing the road for us and coming for home visits.  

Eli-Grace's condition seems similar to Elianna in some ways, and in other ways feels different.  The prenatal diagnosis still stands, she does have Zellweger Spectrum Disorder.  The list of symptoms is long and varied, but here's what we know is going on with Eli-Grace.  She is having seizures, she has low muscle tone, potential vision and hearing impairment, and poor reflexes, particularly her suck/rooting reflex seems to be non existent (which is why she has a feeding tube), and she has had some apnea episodes and has silent reflux.  She does have some sensitivity to pain, based on the fact that she cries when I insert the tube, and even fights it a bit, or remove the tape that holds it in place.  She seems to cry to let us know she's hungry, which has meant the schedule has been held to more loosely, since it feels like we can rely on her to tell us she's hungry.  Most of these issues can be traced back to neurological problems caused by the disease, and as such are not curable, though some symptoms can be managed with medication, like the seizures.  

Overall, we are doing reasonably well.  With a prenatal diagnosis, we have been able to better prepare ourselves for this journey, and yet in many ways still feel totally unprepared.  Emotionally we are not in such a state of shock.  We have more flexibility in our work lives and our support people have been ready to jump in and help when we need it.  This is not to say we aren't stressed or tired or anxious.  We are.  We are caring for a dying infant.  That is hard.  Nothing can change that, but it feels just a tiny bit less awful this time.  Maybe it's because we are somehow a little bit accustomed to living in this kind of tension, I don't know.  

The famous question of how is Eli-Grace doing is a tough one to answer.  We have had our share of ups and downs in these first two weeks.  Every little thing leaves us questioning if it's an indicator that death is imminent.  That being said, as we get used to her normal, we have less of these freak outs and feel comfortable that today isn't going to be the day she dies.  So, when we say she's doing well, it just means we don't think she's going to die today, or even this week.  The things she is doing are within what's expected for her condition and are part of her normal, but it certainly doesn't mean there isn't things going on, apnea and seizures are scary things to witness.  It also doesn't mean she isn't going to die on some day in the future.  We don't know when that will be, so for the moment, we say she is doing good because that is what we know.  

We appreciate your love and prayers and practical support.