Planning for JT

Here we are with less than 10 weeks to go. In less than 1 month I will know exactly what JT's birthdate will be and then the countdown will begin. For the first time one of my children will be delivered via scheduled c-section in Peoria at OSF. I have known this all along, but I've kept it in the back of my mind, because it's scares me to think about how this is going to play out. On the day of delivery, we'll all drive over to Peoria and St. Francis. My Aunt and my Mom will be there to take care of the girls, as we plan to keep them in Peoria and close by so we can see them often. Then we'll proceed with the C-section to deliver this Duffy child who so loves to shove his feet in my ribs. Upon delivery, JT will be whisked off for a sonogram of his brain to ensure that he has not suffered a brain bleed in utero or during delivery. What we can never know about Izzy was when her fatal brain bleed started. It could have been incurred as a result of passing through the birth canal during delivery, so the c-section is to eliminate that as a potential threat. Also upon delivery, umbilical cord blood will be collected and sent to the lab which will be on standby. We will be running a PT and PTT test which will check the length of time it takes for his blood to clot, it will also test his Factor X level. The clotting time tests will come back first and if his clotting time is too long, it will indicate a deficiency and we will begin a blood transfusion to give him, hopefully, longer clotting times and avoid any internal bleeds. The result of the Factor X levels will take longer, and those will determine if it is a severe deficiency, like Izzy, or a moderate deficiency, like Abbey and I. Dr. Tarantino, our brilliant hematologist says we are in unchartered territory as there is no documentation on treating a newborn at birth for potential Factor X deficiency. This treatment is historically successful in treating traditional hemophiliac newborns and avoiding brain bleeds, and he feels comfortable in this course of action, but there is always that unknown. I have avoided doing my own research this time. I spent many hours after Izzy's death and diagnosis looking for answers and explanations and information, and I don't want it this time. I'm not sure how I'd make it the next 10 weeks with an even higher level of impending doom hanging around the corner. I haven't let anything in the house bigger than 6 months in size. When the girls talk to me about what it'll be like for JT at Christmas, or when they talk about him at the softball fields next summer, I just say "we'll see." I can't stand to hear them make plans and then have them dashed and their hearts broken again. I added a high chair to my registry and felt foolish for doing so, because I might not need it. And I assume if I'm feeling like this, selfish and stupid and horrible for having another baby, then other people must be thinking the same or worse. It's been a very lonely pregnancy because Duffy hasn't been the same either. He's withdrawn, hasn't talked to JT but a few times, and is very remote from me too. In my mind he's keeping his distance so he won't get too attached in case it goes wrong. But I miss him and how excited he usually gets and how he talks to the belly and says ridiculous things. I wonder if this is normal when having a baby after a loss like ours.

Comments

  1. I just want to send so many hugs and kisses your way. I will be praying and sending positive thoughts your way every day. Your story touched my heart and I hope that writing helps you to heal a little bit each time. What a strong family you must have and how proud you must be.

    You are truly an inspirational writer and I hope you continue to write. Good luck.... {{{{{{HUGS}}}}}}}

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  2. Take a deep breath and know that all of the planning and knowledge you have put into bringing JT into the world will be worth it.

    In our family, Teresa (factor V deficiency), had an intracranial bleed at 2 months. When it was time for her sister to pop out, they did a C-section and then infused her with FFP, no questions asked. Testing "later" showed she also had factor V deficiency. All I can say is that my husband said, "you know when you poked Maria, it really pissed her off." She is now 29 years old. Teresa is 32 going on 33. Love, Cheryl D

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  3. Great Blog! I have Hemophilia myself and I know it is no fun! Keep writing! xoxo

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