Friday, July 1, 2016

Medical odds and ends

Many people have asked and I’m sure even more are curious wondering “What the hell happened? This kind of stuff isn’t supposed to happen anymore.” And let me say I wholeheartedly agree with both sentiments. Let me share a piece of what they think happened and if we gain any new info from the official autopsy report I’ll be sure to let you know.
From what the doctors are saying and what I observed go down they are pretty sure it was an Amniotic Fluid Embolism, or AFE. To quote www.AFEsupport.org:
Amniotic fluid embolism is most commonly referred to it in its abbreviated form, AFE. Originally defined as a disease in 1941, it remains an unpreventable, unpredictable and often-fatal complication of pregnancy.
AFE is characterized by acute and rapid collapse of mother and/or baby as a result of an allergic-like reaction to amniotic fluid entering the maternal circulatory system. It is important to note that many laboring mothers have amniotic fluid or fetal debris enter into their circulatory system and do not suffer such a response. It is most generally defined as a two-phase response:
The first phase is characterized by rapid respiratory failure and cardiac arrest. It is noted most fatalities from AFE occur during the first phase.
The second phase is known as the hemorrhagic phase. The mother begins to bleed profusely at the wound site; typically at the site of placental attachment or cesarean incision. Disseminated intravascular coagulopathy (DIC) or consumptive coagulopathy develops, which prevent coagulation.


Pretty freaking scary right!? The BD3 won some kind of sick and twisted lottery. I never even considered losing Sharry to be a possibility. In fact even as they wheeled her out of the room with a pack of doctors flooding in from the announced “code blue.” I was scared to death but mostly for the baby’s well being it never even crossed my mind that my sweet sweets who I was cuddling with in a hospital bed literally minutes earlier could be at risk. Obviously I was completely off. An impressive team of doctors and nurses did their best to save Shar but after doing everything they could (CPR, blood transfusions, surgery) it was clear that she was not going to make it past her baby’s birthday. I long to know if she at least saw JJ for a second OR somehow their souls kissed as she saved her beloved baby’s life.


They were able to have JJ out by emergency cesarean within five minutes of his mama’s collapse. This is critical because I have learned when a woman’s life is at risk one of the first areas to lose oxygen and blood flow is the uterus and in this case JJ. Sharry and the doctors saved his life. Based on early blood work and his trauma at birth they categorized JJ as likely severe brain damage. They placed him immediately into “induced hypothermia” where essentially they cool his core temperature for 72 hours to slow down his metabolism hoping to halt or slow any possible brain, lung or heart damage. It is a relatively new technique where they have seen amazing results with newborns who have traumatic births. On top of losing Sharry it was salt in the wound to not be able to hold JJ but watch him shivering hooked up to all sorts of respiratory, nutritional and diagnostic cords and tubes.


After 3 days they gradually warmed him and I was able to hold him on Father’s day but the verdict was still out on what kind of brain complications we are working with. On the day of the funeral viewing they were doing the MRI. My mom and I waited to be with JJ before and after the magnetic imaging knowing that we would not be able to know the results until after we returned from the funeral. One of the nurses afterward told us that she felt so at peace in the MRI room and that she really thinks Sharry was there with JJ, again all I can say is “I hope, I hope, I hope.” As we left the NICU to head to the funeral in St George one of the Nurse Practitioners came running after us which provoked an “oh shit” response from both my mom and I. She saw our faces and immediately assured us it was good news. The doctor who assesses MRIs had called and they saw no evidence of brain damage and she would not need to see JJ for four months! What a miraculous turn around to go from possible severe brain damage to zero evidence. To be totally clear this does NOT mean 100% JJ will have zero complications from this tragic entrance into the world but it is a great sign.


As I’ve kind of hinted at before I don’t really know where I stand for sure with God, the afterlife and all of that jazz but I hope, I hope, I hope that Sharry has been and will continue to be her beautiful baby’s guardian angel and that all of the hundreds and possibly thousands of prayers and good vibes sent our way through social media are in fact making a difference.


We are on night number two with JJ out of the NICU and honestly and truly I miss it. They staff of nurses, doctors and medical professionals have been incredibly capable, kind and compassionate. I am going to miss the nights when I could not sleep at 3 am so I went into JJ’s room to find a loving and supportive angel in scrubs watching out over him who would comfort and console his grieving bubby. As we checked out of the NICU yesterday I think we gave at least two dozen hugs to people we were incredibly grateful to, a mismatched family brought together under unspeakable tragedy.


JJ update. He is doing well. He is sticking to his NICU training of eating every 3 hours from a combination of formula and donated breast milk from some pretty awesome family members. Lola his big sister who happens to be a kitty has accepted him more than I hoped. It is freaking hard to be home in our house with the nursery that Sharry prepared without her. She knew how all the baby stuff was organized and what we would need when. In fact I am sleeping on the couch while my super supportive parents sleep downstairs. My mom and I are alternating who takes care of JJ which night so at least one of us could make an attempt at a good night’s sleep. Tonight is my night!

6 comments:

  1. Jarred, we miss having you and JJ around too. :D I'm so sorry I snuck out on you the morning you guys were discharged but thought you'd appreciate the sleep as uninterrupted as possible. Every staff member you guys came in contact with from nurses/practitioners/physicians to radiology, to dietary, to administration has you and your family in their hearts. (this includes extended family, Sharry, and all of her family as well) I really do hope you can keep up on this blog so we can keep in touch.

    -One of the J's ;)

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  2. I have you in my prayers and think you are very brave!! Remember to listen to your inner voice and trust your instincts. When we are quiet we are more likely to hear our angels.

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  3. Oh my goodness. I can't imagine how terrifying that must have been for you. I hope, I hope, I hope along with you.

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  4. Thank you for sharing your experiences. I pray for you, and your sweet boy and your wife. I remember you from high school- I don't know if you remember me. I am thankful for social media that I have learned about your experience and want to pray for you to be strong. Have faith.

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  5. Your blog posts are beautiful, thank you. Just wanted to say that I've held you and J.J. in my heart since hearing about this and will continue to do so. Stay strong my friend.

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  6. Hi. I saw a preview of your story this morning on CBS This Morning and have spent the past hour reading some of your blog posts and listening to your beautiful angels voice. She was certainly an incredible person, hunh? Amazing. You, too, are amazing. You found your words through unimaginable loss and grief and uncertainty, navigating being a first time father to a newborn in very dark days. Your perspective is so impressive. Sharry would be so incredibly in awe of you, now more than ever, and I, too, hope hope hope she is able to watch you grow. Best to you and JJ and lots of love and tears from a mom and wife in SC. Keep on.

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