MEDICAL UPDATE
March 30, 2011
FB post: Jedi is gaining and growing; he’s only 3 weeks behind now. They think he might be 3 lbs, 9 oz given his measurements. The hole in his heart was visible today. He was completely uncooperative in moving his hands from his face, so we only caught a glimpse of his cleft lip and palate. We did get a “chubby cheek” side shot, though. Heart was beating along at 139.
It is so interesting to me that the brain and tissue donation that we requested information for is located at
the University of Maryland. It is actually the “bank” of these donations for developmental disorders. I have to contact them myself (the federal government’s law), so please pray that I am able to hold it together during that
call and correspondence.
Also, I am supposed to be receiving information about the closest milk bank. I’ve gone back and forth on it so often, but I’m not sure that I can do it, not just because of the physical limitations as those of you have had pumped are aware of. As much as I want to in theory, I am not sure that emotionally I can put myself through that, even while knowing it would be helping a little one who so needs the nourishment.
March 29, 2011
I have no desire to do anything. No more memorial planning, no more hoping for a miracle, no more sitting under the lights, no interactions with others, no more wondering about saying the right thing or responding the right way, no reading. Sleeping holds no sort of escape. Rearranging the boxes scattered throughout the house is tedious and pointless. People try to encourage me, but I don’t feel encouraged today. Don’t get me wrong; I know their hearts are in the right place. Mine is not. I know they are trying; I am not. I realize it is an evening’s melancholy, but it is where I am at this moment. We will see the doctor tomorrow. Probably see another ultrasound. I should be excited. I don’t know what I feel. 34 weeks. 16 of them I have had to grapple with the reality of imperfection, not just Jedidiah’s physical ones, my own. Did my age cause this? Did my desire for more children? Did I make a mistake asking Jim not to make any permanent decisions about the size of our family? Will I ever feel like being around people again? I am so selfish, yet, yet… yet what? I do not know.
Man, rereading that 1.5 days later makes me disappointed in myself yet at the same time so glad that I have the
technology to be able to get it down and out of my head for the moment as well as thankful for a husband who, the next morning, realized that I needed to get some stuff off my heart. He asked, more than once, and when I could finally speak, I realized that I had let despair and my lack of control take over my thoughts. He just listened, shared but a few words, and then kept loving me anyway. We pray for those who feel they have no one to talk to—that God would bring along someone with whom they could share their dark thoughts, not being overwhelmed or discouraged by them, but finding a safe place to vent them so that despair cannot get a stronghold. Or, as was first in my case, allowing them to journal (possibly not for the world to see) in order not to allow the thoughts of a few moments to become a belief system that will eat away at them. We have been so blessed by being able to ‘be real’ here, and I pray that my willingness to post will lead someone else into
the knowledge that they have a voice. God always has an ear for us, and I am so thankful that He has never left
me alone in my despair, even when I could not feel or hear Him.
What would I do without all of ya’ll’s prayers, support, and encouragement? I might have sounded so ungrateful in that evening’s moment, but please know that is not my heart of hearts.
March 28, 2011
While trying to get the computer set up for the children for school, I got distracted with some of the files I had
been working on the day before—namely, the one for memorial plans for Jedidiah. Jacob came up from behind me, gave me a quick hug, and then just looked at me a moment. I wondered if he was annoyed that I had made
him wait longer than I had said, so I said, “Sorry, just something I have to do.” He replied, lovingly and kindly
without a hint of any annoyance, “I know but I wish you didn’t have to.” What an amazing young man!
March 28, 2011
Stained Glass Windows by Daniel Doss Band
Last week I walked on water
Today I’m sinking low
Can Your hand reach down to me
Pull me up once more
The dreams I had are shattered
All scattered on the floor
The last time You picked up the pieces
And helped me dream some more
CHORUS:
‘Cause we’re making stained glass windows
Every piece a different shade
Broken and then put together
Like a big mistake
Oh, but when the light shines through
The colors form a tapestry
A hundred different images of how
You keep loving me
Oh, each moment You are with me
Each word I hear You say
Helps me understand and trust
In Your higher ways
Oh, the roads that go through valleys
Oh, they help me cling to You
And when we find a mountaintop
We’ll dance the whole day through
CHORUS
March 24, 2011
Here are three of the images we have of Jedidiah. Sorry it has taken so long to get them on here.
The first is from December. The next two are from the beginning of February. The second shows how his nose and lip are actually separated, even though the third makes it look like they are connected. The lip is bilaterally clefted as well as the palate. We have an adorable image of his little nose, but the rest of the image is so
distorted because of his position, so I didn’t put it on here. Also, the second image shows something on his forehead. That is the only time we have seen that, so I have no idea what it is. We have an appointment next week, so, hopefully, we will have more images then.
March 23, 2011
Ok. Well, yesterday, I was obviously wrong. The last hour of waiting to feel Jedidiah move proved (or is it ‘has proven’?) that I am scared beyond all measure of losing him and haven’t come to terms with it at all. After waking numerous times in the night and not feeling him and then being completely awake and waiting for an hour, Little Man finally moved and my heart leapt inside of me.
Yet, I have never known that type of fear, and as those of you who know me well know, I have struggled with fear my whole life. I have held onto His words about fear and they have brought me all measure of comfort and peace, and it was again His word that brought me comfort as I fought the fear of losing Jedidiah. Ecclesiastes 12:13 states, “The conclusion, when all has been heard, is: fear God and keep His commandments.”
Why the end of Ecclesiastes? My thoughts had jumped all over the place and settled on “Why bother? If I am going to be in pain and suffer,
whether through someone else’s actions or the death and destruction of this world or my own actions, then why bother with being nice, doing the right things, trying to honor and respect others, attempting to bring God glory? Why bother with any of it?” That’s when God reminded me of Solomon (named Jedidiah by the LORD) and his words after falling away from the LORD’s teachings and ways. After struggling with
fulfilling his life with so many distractions and pleasures, Solomon ultimately came back to the God of his youth and declared that He is the only reason for living.
March 22, 2011
How do I admit that I am scared? Not to lose Jedidiah because I have now had 15 weeks to come to some sort of terms with the fear aspect of
that. Not that I am ready for it, by any means. However, how do I admit that I am afraid of his survival? Of not being the mother who can handle having a child with special needs—a child who will take extra patience and extra knowledge, knowledge I do not have? What if I do something wrong? What if I can’t be all that he needs me to be? What if in his needs and my desire to spend every possible moment with him, I ignore or neglect my other precious boys and fail them somehow? Please, I want him to live. I want to see him grow and change and laugh and love, but I am afraid, afraid that I will fail him if he does survive.
March 20, 2011
Ahhh, church today. I told Jim yesterday that I wasn’t going to go. I have so much I want to get done before Jedidiah arrives, and sometimes it is just so hard to see and hear strangers smile and congratulate me on my pregnancy. Jim asked if I was sure but then neither said nor did anything else to relate what his feelings might be on the matter. Anywho, I wasn’t going to go, but since Jim was leading the discussion in his class, I needed to be up and helping getting the kids ready.
I realized that I really should go, not because God demands it, but because I knew in my heart that He has had a blessing for me each time I have gone, even when I really didn’t want to. When I showed up at the top of the stairs dressed and ready to go, Jim gave me the most amazing smile. I felt like the belle of the ball at her
coming out party. That man has a way of making me feel treasured… Blessing #1.
While going to the bathroom at church (pregnant women do that A LOT), I overhead a mama speaking to her young daughter about holding her dress up. I realized that there is a whole world of parenting of which I know nothing about. 😉 While washing our hands, the little girl was awed by my big belly, and her mother was so sweet in her comments about the baby that I just couldn’t help but smile and laugh at their recognition of Jedidiah’s life… Blessing #2.
We spoke with a former co-worker of Jim’s and I found out about the possibility of a very cool field trip…
Blessing #3.
Worship. Wow. We had a guest worship band—the Daniel Doss Band, and they had put the old hymn “Just as I Am” to a new arrangement with their own chorus. I was really taken with how God accepts us just as we are, warts and sins and all. But, I was reminded again of how perfectly and uniquely Jedidiah has been formed, just as he is… Blessing #4.
More worship. Bigger wow! Daniel, the lead singer, shared how he and his wife hoped to have a child of their own, but God continually said, “No.” They felt lead to adopt, and God said, “Wait.” When He finally placed a
little one in their hearts, He allowed the birth mother to change her mind, and after six days of loving their precious baby boy, they had to give him up. The hardest day of their lives. After a short time, He then placed their second baby boy in their arms; this time to stay. Daniel wrote “Stained Glass” after that… Blessing #5. (When I can get the words, I will put them on here for you guys.)
Thank You, God, for Your blessings, even in the midst of difficulties.
March 17, 2011
We had our maternity photo shoot this evening. It went well. The news crew from Channel 5 (who is doing a
story on the nonprofit organization Now I Lay Me Down to Sleep) was there for a part of it. It was interesting to be mic’ed and all that.
The boys looked so handsome in their white button downs, and Allen got some great shots of them looking at
Jedidiah. Lots of great shots, actually.
I was much more nervous than I expected to be. I am not sure why. I guess some of it has to do with knowing how badly I have misrepresented the LORD in my past, and I really want to make sure that even through a story about another organization, our actions bring God glory through Jedidiah’s life. Does that make sense? Plus, who wants to look bad on TV? See, my motives aren’t totally pure, I realize. 🙂
MEDICAL UPDATE
March 16, 2011
We had an appointment today with my OB/GYN. She is great; I really enjoy seeing her. PRAISE: Jedidiah is measuring well considering how small he has been measuring. He is still small, of course, but he not only grew ‘4 wks’ since I last saw her which would be normal, he actually grew ‘5’ (uterine measurement in centimeters). Often, when measurements are taken by different doctors at different offices, I don’t pay much attention, but since she is the one who took the last one, and she was happy with this growth, I will take that as a positive. His heart was beating along at 143 beats per minute; I love hearing that sound.
March 15, 2011
The Lights and Sounds of My Life
Husband: He lights up my world. He tells jokes and makes faces and has great comebacks, just to make me laugh. He snores, sometimes, but not too badly. He prays with me every night before bed and engages me in conversations about the LORD. He listens, A LOT, to my carryings-on, and he always makes appropriate and well-timed comments; thus, I know he isn’t faking his listening. He turns on jazz and Christian music for me at various times. And, he always makes sure I have silence when I truly need it.
Boys: They run, they jump, they play, they hit, they Wii, they fight, they talk LOUDLY. Need I say more?
Dogs: Anakin whines. He barks if anyone is outside on the street, no matter how far from the house. He barks to come in. Otherwise, he’s sleeping. Cocoa snorts and sounds more like a hog than a dog. And, she snores—all night long!
Nieces: They create, they chat, they sing, they play piano. Precious!
American Idol: My family began enjoying American Idol this season. We have never watched it before, and although there are some things I would change (the non-family-friendly commercials!), we have been impressed by the talent and judging. Of course, I still take issue with the concept of ‘idol’, but this is one of the lights and sounds that has become a routine in my life.
Ceiling Lights and Ample Sunshine: I want some better lights in the house. Sometimes in the evenings and
at night, it seems so dark and dreary. Yet, during the day, with the one corner of the living room being the
exception, light streams in from our windows, brightening our time and our hearts.
Phone: It went out a few weeks ago. Wow! I never realized how much those you-just-got-a-message sounds really enhance the day, keeping me connected to loved ones.
Beam Ray: A light tube flashing blue light in my room for 3-4.5 hours a day (not all at the same time) and a speaker that beeps at various output and pulse frequencies. You were wondering what the lights and sounds of my life had to do with Jedidiah, right? Well, this is it.
Back in December after a truly difficult day of digesting all that the pediatric cardiologist had to say, we saw a friend and sister in Christ. She shared with us about the use of light and sound technology in other medical
areas, something I have been interested in for a while. She has a machine that she uses for her family and offered to have me come and sit under the lights. There is no harm to a human to be under the lights, so I knew that I would not be “experimenting” with possibly harming myself or Jedidiah. After praying about it and investigating information from multiple sources, I spoke with the owner of the company, a compassionate man who made no promises and was willing to let us use the technology if we felt led to do so. Through an amazing blessing of generosity, not only am I able to try the lights, we have a Beam Ray machine in our home for the reminder of my pregnancy to investigate if it could make a difference for Jedidiah.
I had read years ago about deep ultrasound being used to help regenerate tooth enamel (in Canada, I think).
I know light therapy is used for seasonal affective disorder. Newborns with jaundice are put under “bili-lights.” We know that microbes do react and die under certain light and sound pulses, and we have seen how lights
and sounds can be used effectively to change a human’s body signals, even to be used as effective weapons (immobilizing but not harmful).
All that said, I have no idea if the light and sound frequencies will make a difference for our beloved Jedidiah,
but I do not want to be sitting at my kitchen table 30 years from now reading a magazine (or a tablet if mags are obsolete by then) and read that technology has advanced to the point that light and sound frequencies are being used to aid in other medical applications such as heart healing, brain stimulation, and cellular reprogramming (my made-up words). Whether it makes a difference for us personally or not, if Jedi’s life can help to further impact alternative research as well as orthodox medical research (body donation), then that is what I want to do.
March 12, 2011
I love silence; I crave it. Today, for the first time that I can ever remember, I needed to fill the silence. I couldn’t cry, again. It just hurts too much, and the headache that follows is excruciating.
March 10, 2011
Yesterday morning before 4 a.m., Jedidiah began moving more than he had in the three previous mornings combined. He was all over the
place. Soon thereafter, I began having waves of nausea. Now, nausea and I are old friends during all of my pregnancies, mostly James’ and Jedi’s, but, still, Jacob’s was the one in which labor began with four hours of waves of nausea every four minutes apart. With waves of nausea coming on, about every ten minutes, I had a contraction. I tried to calm down and remind myself that nausea had been visiting again for many nights of the past few weeks, and then I had the second contraction. I lay down and asked God for now not to be the time to lose him. After two hours of waves of nausea, now coming about every 7 minutes and contractions coming at varying times, I knew I had to tell someone. Jim awoke and a friend had sent me a fb message, so I asked them both to pray for us. I knew I was beginning to be really scared and letting fear and stress control me.
I decided to take the morning very slowly, staying in bed as long as possible. The waves of nausea began to subside soon after that, and by 8:30 I was sure that I probably wasn’t in labor. Three or four more (milder) contractions (and some pressure that I really don’t want to experience again
‘til labor) occurred, so I got back into bed until around 10. By then, everything was calm, including my heart, and I could face the day.
MEDICAL UPDATE
March 2, 2011
Jedidiah is 30 weeks and 1 day today. His measurements put him into the less than 3rd percentile in size (anything less than 10% is considered intrauterine growth retardation). His forebrain appears normal, and his cerebellum is measuring large because of the gap. The Dandy Walker malformation of his brain was obvious to us today—it looks like two cerebellums instead of one and the space between the back of the brain and the skull is too large and has too much spinal fluid. I asked the OB what the survival rate of children without trisomy 13 but with Dandy Walker is; she didn’t give an exact number/statistic, but she did say that Dandy Walker itself is not what would necessarily cause his death.
His heart was the most troubling to me. We could see the hypoplastic left ventricle, but we could not see the double outlet due to his positioning. Also, we could not see the hole between the right and left ventricles. I realize that a hole in the heart should not be desired, but I guess I had counted on that hole to give us more time with him because he would then have some oxygenated blood. Of course, the hole may still be there and we just didn’t see it. Or, it has healed. Or, it was never there in the first place. Medically speaking, I don’t know if the hole even matters.
On any account, I realize what little things I hold onto and do not realize how they have affected my views until that hope or thought is gone. There are so many unknowns. I don’t know how to prepare. I am a control-freak, and this just drives home over and over and over again how little control I have.
March 2, 2011
Preparing for His Arrival… and Departure
I sent an email yesterday to the Area Coordinator for Now I Lay Me Down to Sleep, a nonprofit organization of
photographers who volunteer their time and talents to help capture the fleeting moments of the lives of little ones when the families have to say goodbye. www.nowilaymedowntosleep.org I sent an email not sure of what to expect or what to say but received a call soon after because “this is such a personal time, I wanted to contact you personally.” Allen Manus has heart! He was comforting and respectful while also being informative and professional.
Their organization is simple. When I go into labor, I (or someone for me) will call him. If the timing works for his schedule (remember, this is volunteer work outside of a fulltime schedule), then he will come to the hospital and do a photo-shoot right there. If he is unavailable, he will try to find another photographer that is near that hospital to come. The photographer will then retouch the photos and give us a disc of them. All of this is done as a gift to the family.
Oh man! Can you even imagine such a gift?! I remember my mom taking a million pictures of the boys and how it drove me crazy, but, how I love those pictures now! I am so grateful she put up with my, “Aww, Mom, not again” and kept shooting anyway. Now, to know that there is a possibility that someone will allow our whole family time with Jedidiah without worrying about those memories being captured… what a blessing.
As I tried to compose that email, my emotions of taking this step to prepare for Jedidiah’s arrival and departure
were on my sleeve. The children had no idea what I was doing, why I snapped at them for their constant interruptions, or why I then began sobbing at the computer. Yet, all of a sudden, I had four sets of arms encircling me—holding me, crying with me. Ahh, the sweetness of that moment.
We are Jedidiah. 