Hello Family, After a long week of meeting with specialists, hospitals, and hospice workers we have many more answers to our questions. None of which were positive but Kyle and I feel better having answers at least. We learned that this is probably not a chromosomal issue because baby does not have any 'facial flaws' and from the neck down baby is perfectly healthy. That means it was probably a fluke or an issue with a blood vessel or something - unfortunately, we will probably never know that. Last Friday we did get some happy news. We went in for yet another sonogram but this time we wanted to find out baby's gender. We've having a baby girl and we've named her Madelyn Elizabeth. I’ve attached a couple of photos of our precious Madelyn from that sonogram. Our little angel is breach so you will see her little foot on the right side of her face covering her eye.
A funny story about Madelyn’s name: from the very beginning we knew that, if our child was a boy, his middle name would be Edward. This is Kyle’s middle name and his father’s middle name and goes back several generations. So, of course, in our over analytical minds we needed to make sure that our child’s initials wouldn’t spell anything that would cause them to be teased – and out came the spreadsheets. ‘AEW’ – ok, ‘BEW’ – ok, ‘CEW’ – ok…then we got to ‘J’… after a good chuckle we decided that this probably was not appropriate. That didn’t stop us, or Brookie, from calling our buddle of joy our ‘JEW baby’. Once we found out that we were having a little girl and had all but decided on a name we toyed with giving Madelyn a name that began with a ‘J’ – just because thinking of those initials always made me smile and giggle…but Madelyn knew that her name was Madelyn and would only respond to us when we called her by her correct name. Luckily, our baby girl is not in any pain now and we will make sure that she are not in pain after delivery - however, that appears to be all that we are able to do for her. We are not able to correct the problem so fixing the symptoms would only 'delay the inevitable' and cause more pain (physical and emotional) for everyone involved. Because of baby's head size we need to go in for another sonogram next week to see if it's getting larger from the fluid buildup (right now her head measures at about 42 weeks while the rest of her body measures at 29 weeks). If her head is getting larger we have a c-section scheduled for the following week. However, the problem with this is that her little lungs will not be fully formed and she will probably basically suffocate to death sometime after delivery. Ideally, we want to wait until June 16th – which is the absolute longest the doctor is willing to wait. At that point, we'll do a c-section and just see what happens. No one is really able to give us a time frame for our little Madelyn's life. It could be 5 minutes; it could be 5 weeks - maybe even 5 months. All we do know is that Madelyn is just as stubborn as her mom and dad are and will hold out just as long as she can (she really shouldn't have made it this long according to statistics). Even though her life here on earth will be very short she has brought many, many people lots of joy and happiness during a time that we needed it very much. Every single doctor, nurse, and social worker we've met along this journey has been absolutely wonderful. I feel like they sincerely care about our feelings and only want the best for us and our family. We know that our grieving has only begun and we are trying to plan and take care of all the ancillary items before baby Madelyn arrives so that we can enjoy her short life together. Even though this is a horrific situation and I would never wish this on my worst enemy, Kyle and I are trying to focus on the 'silver linings' right now and trying to stick to our routines as much as possible. • We are super blessed to have our family and friends around us to care and support us as we go through this live event. • We are blessed to know that Madelyn’s short life will only be filled with love, not suffer and sorrow. • We are blessed to know that when Madelyn joins our Lord up in heaven she will be surrounded with family that will love her as we would (and probably keep her more entertained). • We are blessed to have gone to Switzerland which made our marriage stronger and for us to be able to work better as a team • We are very blessed to have not found out about Madelyn’s condition before we did – we could not have changed anything no matter when she was diagnosed and it saved us weeks or worry and wonder. • We are so blessed to have moved into our home when we did. If we had moved in earlier the nursery would have been complete and if we would have moved in any later who knows if we would have moved at all. • And most importantly, we are blessed to be having a baby girl. I was informed by Kyle’s father that if Madelyn was a boy he WOULD be going camping during his short life and if that meant I had to come along because I was attached to the child so be it.