Lessons from Loss

Auggie 32 weeks and 3 days

pondering Auguste

Bluebird

Oliver and Auguste

belly shot

Family picture taken by my dear friend Julie Blum as she visited from Baltimore

Trying to enjoy every bit of my last pregnancy

On Tuesday, Christmas Day, our Auguste made it to the 32 weeks mark.

 I went to the doctor today for an ultrasound and a visit with the maternal fetal docs in Greenville. Things looked really good. His chest was almost completely lear of fluid with only a small amount of fluid at the base of each lung. His abdomen was still distended. Two measurments were taken, one measuring 36 weeks and one measuring 37 weeks and 5 days. A week and a half ago the abdomen measured 35 weeks and 5 days. So, basically it wasn't clear if the abdomen was stable, improved or worse....but Dr. Dillinger was still unimpressed and doesn't seem to be overly concerned regarding the abdomen, stating once again that it is the last to reabsorb. I am of course bothered by it, but I am relieved by the way the chest looks. They estimated the abdomen in the 97th percentile, obviously...and they estimated weight at 6 lbs 9 oz (give or take a lb) and that of course is mostly extra fluid.

Dr. Johnson at CHOP has told me that he has not seen things get worse after 33 weeks, and therefore, I think i will breathe a sigh of relief when things look good next week (wishful thinking)....however, due to the nature of this horrible hydrops, I am not sure I will be at ease until I hear him crying and see him doing well...as I know that all of these babies present differently, and anything can still happen.

However, this is not to say I am not thrilled about the way things looked today.

We took a few more photos. This child has had one to two ultrasounds a week for the past 13 weeks and yet, I can never get a very good photo of him because he HATES the paparazzi. He always holds his hands over his face and is very uncooperative, but here is the latest image of today. The little parts of him we do get photos of are quite beautiful.

Can you believe we have been on this journey for 13 weeks?  I have reflected a lot lately about those first few weeks. The idea that termination was recomended, and that had we taken that route we would have never had all these experiences, good or bad...it amazes me. I look at his little face and I thank God that we never considered such a thing. Our lives have been changed so greatly by this little boy and I have to keep pinching myself as the weeks pass and he keeps improving, because I truly never expected things to move this direction. I prayed for it, hoped for it, but truly looked at the reality of the situation and the logical part of me did not think it was possible...and yet, today, on his scan, his lungs looked so big and full and expanded to the chest wall and he keeps kicking at me (which at this point is quite painful) and I dare not complain because I am just so very grateful for every second.

I wanted to post something beautiful written by my friend Jaclyn, after the loss of her sweet Gianna on 12/26/2012. Most of you know that Jaclyn and I met on a hydrops support group page form facebook and became fast friends due to the similarities and the fact that we were both getting treated by the same doctors at CHOP and had due dates in the same window. I am devastated by her recent loss...but her strength in the face of this storm has enocuraged me. I loved how she described what she had learned from carrying a baby with this condition, and it reminds me that every minute is worth it.

What a long journey this has been for my family. Our little girl Gianna Renee Natale was born Dec. 26 at 1:54 pm by c section. I was so scared knowing the out come may not be good. Ii never gave up on my little girl. When the took me in for c section I was given anxiety meds to just keep me calm. Baby was born and my husband was there watching her. The neo natal dr took her right away to try to stabilize her. While i was being sewn up neonatologist told us they were doing everything they could but she wasnt reacting to it. I knew we had to let her go be with the lord. The Lord gave us two hours after she was delivered where she lived and we held her and loved her and kissed her and told her how strong she was and she was our angel. Her heart stopped beating as she was held in her father's arms.
There was no breathing tubes, machines nothing just our girl being taken so peacefully! I am so thankful for those two hours we got with her! The Lord gave us that to remember forever! My heart hurts terribly but I know she has another purpose and the lord needed my angel.
I will never forget this experience as I may not have had much time with my daughter but she taught me so much. She taught me not to be afraid and to face my fears, she taught me to never give up, treasure my family and appreciate every single thing about life and to love until it hurts! She will always be our little girl and im so thankful for this experience!
Thank you everyone for your support.  I met a great friend here... Who has been such a support and constant reassurance as she is hurting too she never stopped being a great friend to me! I pray for you all that have traveled the same road as I and i continue to pray for the families that are still fighting there battle! Love to all

 — with LisaandMickey Losinski.

I feel that she touched upon something very profound in that message, because she reminded us that even when things disappoint us, even when they don't turn out the way we want or expect, even when our hearts are broken to pieces, that we still grow and learn and become better people, especially when we recognize that. Auguste has taught me to face the greatest fears of my life head on...don't try to avoid them but walk towards them and rememeber that every single experience in this life helps us grow. Loving til it hurts, and giving sacrificial love is what life is about...letting go of all the self preservations you possess, letting go of pride and expectations and just loving unconditionally even in the face of inevitable pain...this is the only way to truly experience life.

I was doing a bone marrow on a man today and as I was performing it his wife and our medical assistant were talking about the fate of the world and the future of our children and revolutions etc...I thought about it and just said "I choose to believe that there is much more good in the world than bad, with every bad thing that happens, there is a response from a million good people. I choose to believe that more people want good for the world, and more people desire peace and compromise and happiness...I know that the media shows us lots of horrid things, but just because someone is the loudest or the news reports the bad and rarely the good...that doesn't mean it represents the majority, and I choose to believe the majority represents the good in the world and in the end, that will prevail".

Maybe that is the little pageant queen within me who dreams of accomplishing "World Peace", (which, incidentally, was #3 on my friend's 8 year old daughter's Christmas list)...so keep believing, keep praying and keep loving one another until it hurts...


Love to all,

L