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Showing posts from July, 2023

Induction, Waiting, Induction?

Right before our induction here in Hays on Tuesday afternoon, I accidentally opened a can of worms by asking our OB if there was any reason to be concerned by the suspected uterine attachments mentioned in our ultrasound notes in relation to the induction.  He was fairly concerned since he was totally unaware of them and immediately recommended that we not go into the induction until he'd researched it more.  While this is good and was the right call, it was also very hard for Tella and I in a unique way.  While both of us are confident that delivering our girls' bodies will be very hard for us emotionally and psychologically, we also had both geared ourselves up for it and were prepared to take that step Tuesday night.  To suddenly not be taking that initial, hard step towards some semblances of closure left us both feeling a bit like we were in limbo. Today (Wednesday), we had to bounce back and forth between several parties, but ultimately it is deemed safest that we deliver

Return Trip, Illness, Decisions

Though I could go into greater detail, our return trip had some tearful goodbyes, mild logistical challenges, and some good conversations and realizations.  Among realizations, it occurred to me that while Dr. Gebb was likely wrong and Grace had almost certainly passed away before I walked over to Tella to pray for Grace a final time in the recovery room, that may have actually been when Abigail was passing.  Again, there's no way to know--Abigail had a good, normal heartbeat and normal readings after the procedure, but she passed away sometime between then and Friday when they checked, and if it was due to the pressure drop, it could well have been about then.   As far as other notable return trip occurrences: poor Simon seemed to be getting sick by the time we got onto our last flight.  He was draining heavily and felt warm to us.  He also seemed to get progressively more miserable on the car ride home and had a slight fever by then (we brought a thermometer along).  We were able

Tension of a Bow, Abigail's Death

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The morning we arrived at the Children's Hospital of Philadelphia for our scan of Baby B was filled with tension.  My mental, spiritual, and emotional state were neutral in a positive/negative sense--I wasn't afraid nor was I anticipating a specific result; I was lightly hopeful and knew that numbers were on our side, but I was concerned that Tella hadn't felt any movement.  However, there was a deep seated tension in all parts of me, waiting to hear how Baby B was.  Tella and I had arrived at the hospital itself early, so we went to the food court to eat breakfast and talk.  Due to the restrictions from the procedure, I was pushing her everywhere in a wheelchair, so it took a bit longer to move around and get our food.  Even so, we still had extra time before the appointment, so we headed upstairs to check in early. In the waiting room there were a shocking amount of couples.  Apparently slightly later in the day, the office gets extremely busy.  We had to wait so long to

Abigail Crossed Too

Abigail Jessie Nimz left to be with her sister on the other side.  We pray she still hovers, investigates, protects, and plays with her sister, Grace Mary Nimz.  I cannot post on here any more for some time.

Quick Thought

 I did realize that I am or was having trouble hoping.  After having several hopes recently disappeared, I had slightly developed a new fear of hoping.  We have decided to not make any decisions in this whole process based on fear but based on love, which is an opposite of fear.  As such, I've prayed about and worked on losing fear and hoping.  It's been helpful.  I also realized that if this procedure is looked at as two procedures (since they had to enter twice), risk may have been as high as 20% since it would be two different 10% risk procedures.  I can't assume they add directly like that, but they may.  Somehow, though, that fact can be tinged with fear, so when I drop the fear I realize the odds are still 80% in our favor even in that worst case scenario, and then it isn't so bad.  Overall, I'm hopeful we'll see a Baby B with a happily beating heart on the monitor like it was after the procedure.

Schrodinger's Baby

 This morning at around 1:30AM I woke up, stressed that Baby B had passed.  I had a sick feeling that she had, but as I woke further I realized it was simply fear.  I don't know how to explain this difference that exists within myself, but I can somewhat 'feel' the source of a feeling.  When the nurse gave us a 3D image of both girls, I had a feeling that she'd seen something much worse than what we'd been told.  For lack of a better phrase, this was intuition or intuitive feeling.  It was foreboding, but with a strong ring of truth.  What I realized I was feeling at night was something closer to panic, anxiety, or fear.  It wasn't based on any deeper intuition or sensitivity.  It also wasn't based on spiritual clarity, which is a different place I can sometimes 'feel' things from.  I also realized that Simon was rolling around in his sleep, clearly uncomfortable.  That was probably what had me stressed in my sleep and what woke me up. Simon then wok

Grace Crossing

Yesterday morning we got up quite early and left Simon with the grandparents at the Ronald McDonald House.  On the way out I picked up a yogurt and some tea since the 24 hour coffee was down for refilling.  We hopped on the shuttle and headed to the hospital.  Finding our way to the special delivery unit that contains the operating room was a bit challenging, but we made it in.  We had to fill out some paperwork and met with a variety of nurses and doctors throughout the morning who explained how the procedure and recovery would go.  Some chatted more and some chatted less.  Tella and I got a chuckle out of virtually every one of them asking if I was in medicine.  I'm not 100% sure why it happens except that I generally understand what they are talking about, but Tella says I give off some kind of vibe.  Regardless, having it happen several times in the same morning at least occasionally broke the tension with some smiles/chuckles. The waiting was very hard.  Though I didn't qu

Grace's Status and Prayer Requests

Yesterday's travel went much more smoothly, overall, with some small hiccups and highlights.  Due to the tight nature of our time this morning, I'll gloss over that for now.  Yesterday's visit at least brought peace with our course of action up until then.  Grace is dying; her Dopplers were worse with new, intermittent, bradycardia (slow heart rate) appearing in between a more normal heart rate.  This is in addition to other abnormal and worsening readings.  The doctor said she was glad we were in yesterday and not today, or it may be too late to intervene to protect Baby B.   We decided to name Grace: Grace Mary Nimz just this morning.  Grace is a grace to us and to her sister.  Mary means a few things, including beloved.  We've also decided to use Jessie in Baby B's name.  Jessie means 'He sees' or 'The Lord exists.'  It's also in honor of my great grandma, who was very sweet and loving in her life. Our radio frequency ablation is scheduled for

July 9 Late Night Chats with The Girls

I chatted with my girls again last night. I told them that mommy and I love them both so much. I apologized to Baby B that it may seem like we've spent our primary attention and energy on Grace, but I explained that we very much love her dearly, too. I told Grace that I would pray to God for her again tonight, and that I would love for a miracle for her. I told her that I was selfish, and if I had the power, I would never ever let her go, but also that I don't have that power. I told Baby B that we don't want to let her go, either, and that's part of why we'll make what decisions we do. I told them that if it was in our power we would never let either of them go. We love them so much. I told them I thank God that we get to at least all be together right now, and that I hope they sleep well and spend a good night resting full of cuddles.

A Visit to Children's Hospital of Philadelphia in July of 2023

Our trip to Philadelphia started off a bit rushed.  We'd hosted the 4th of July party for the dojo the night before, and we had cleaned up as much as possible that night, but we still had to get around in the morning and pack for Simon to stay with his grandparents, pack for ourselves, meet a person who had wanted to swing by for an unknown reason, and chat with one of the dojo students who had spent the night in our basement.  The night before, sleep was a bit disrupted as Simon had woken up very upset and needed calmed and rocked down for an extended period of time. Thankfully, each part of the morning went relatively smoothly; the visit with the individual was emotional, but a blessing (they had heard about our circumstances and gave us a card that contained money that would cover much of our airfare), breakfast with the dojo student was busy but fun as I was cooking for Simon, Tella, them, and myself, and the packing went as functionally and as dysfunctionally as any packing be

July 2nd Public update about our twins that I posted to Facebook

 On July 2nd I posted  " Update for those praying for our twins or following along with the situation: our last visit had bad and good news. Baby A has a previously unseen spinal scoliosis/bend and it is very severe. Her upper spine is normal but mid-to-low spine twists such that her butt is near her head. She is also growth restricted, which is normal for limb body wall babies, but potentially increases the risk of death in utero and thus the risk of death and harm for Baby B. Baby A also has had several prayers answered; they had reason to wonder about diaphragm and other organ issues but did not find any problems. They expected to find heart issues but did not find any. Those are both excellent pieces of news—that all organs appear normal and functioning helps us greatly. That said, we don't understand the degree of growth restriction, but it is concerning to our doctor enough that we are traveling to Children's Hospital of Philadelphia for a higher level evaluati

June 7 2023 Public update about our twins that I posted to Facebook

 On June 7th I posted " I did want to make a post for those who've been praying for all 5 of us with the situation with our twins and/or for those who want to keep up to date about how the situation has been affecting me. I had an experience on Saturday May 27th that I consider a God-directed encounter due to the sheer improbability of the occurrence happening through random chance. Since part of what makes this experience unique is how very improbable it was, I will be adding extra details to highlight that as I share it. Early in the morning on Saturday May 27th, I had headed down to the southern edge of Wichita, which is around two hours and forty-five minutes from my house, to teach Aikido to a group that I usually teach once every other month or so. This was not the weekend I should have been in Wichita—I was scheduled to be there a totally different weekend, but I got food poisoning, and this was the make-up time that most students could make. Additionally, class