Recent Appointments

It's been awhile since I've been able to sit at my computer without interruptions. Today was supposed to be that time for me, but as it stands now, I have an ill husband in bed and a non-napping toddler wanting attention. So...we'll see how far I get. The goal for this post is to record notes from my last couple of visits with doctors before things get any more muddled in my brain...

On November 10 I had a regular monthly OB visit, which lasted about an hour as the doctor took her time with me, asked questions, and really listened when I shared about my experiences at the university hospital. She also encouraged me to send feedback about the NICU doctor to the medical center's Patient Services office, which is on my mental to-do list but honestly just hasn't happened yet. 

Other than that, the biggest things I remember about this visit were the doctor's recommendations for the following:

1. She thinks that I should go ahead and transfer my regular OB care to the university medical center staff once I reach 32 weeks. (The decision to remain at the military health clinic for my regular check-ups was entirely up to me...if I wanted to transfer to UNMC sooner, I could certainly do that. The convenience and more personal feel of the military clinic were the biggest factors for me, as it is twice the distance to UNMC.)

2. Given my past birth history and Verity's overall good health (considering), she believes I'm a good candidate for delivering vaginally as opposed to planning a C-section. In her opinion, even if Verity is in a breech position at the time of her birth, that alone would not need to be a factor in our delivery options.

3. She also advised continued monitoring of Verity's growth via ultrasound, something recommended and covered by Tricare (our military healthcare). This was a pleasant surprise to me, as our last ultrasound had seemed to have a note of finality about it--I wasn't given the option to make a return appointment, and since they had seen Verity's heart and profile clearly (unlike the first ultrasound), I assumed that since no one said anything to me about scheduling another appointment, then obviously we were done with ultrasounds. Looking back, I can't help but wonder if the doctor who had evaluated the pictures felt continued monitoring was unnecessary...? I can't say for sure, but I had the distinct impression during our two meetings with her that she was rather negative about continuing the pregnancy and the chances for Verity's survival. 

At any rate, the military clinic staff set up the appointment for an ultrasound that would be about 4 weeks after our last one, which ended up being November 23. Since my parents were in town for Thanksgiving, my mom and Charis went with me for this one, and we joined Ted plus my dad and the rest of the kids on base for a squadron open house after we were finished.

Verity at 26 weeks

This appointment was a very quick screening and included getting to see Verity's sweet little face in 3D! After the images were recorded, I met with a different doctor than before. (I was pleased to learn that my doctor from the military clinic had requested for me to see someone different this time!) We learned first of all that while nothing else seems to be showing up as potential problems at this point, Verity is still very small, only in the 7th percentile...and that is with a later due date than my original one. Our initial due date was based on LMP, giving us February 16. After some early concerns--long before we had any idea about the Trisomy 18--I ended up having two internal ultrasounds about a week or two apart that seemed to agree with each other on a February 25 due date, based solely on the gestational development at the time. The doctors have not adjusted the due date since, even after the diagnosis, so we are basing everything on February 25. I'm not sure how adjusting it would affect her percentile...either way she would be pretty teeny.

Verity at 26 weeks, 3D. Can you see her right ear, eye, nose, and mouth?!

Dr. N is very kind and gentle and also took time with me to discuss some things no one had yet asked or told me about. For example, he asked how "aggressive" we wanted to be during the pregnancy itself. This part was a little confusing at first, but after asking some questions, I think the gist of what he wanted to know was how frequently we would like ultrasound monitoring. With any other baby measuring less than the 10th percentile, they would typically recommend ultrasounds every 2 weeks. That sounded exhausting to me. 

And then he explained that some couples choose to intervene with early C-sections based on any alarming ultrasound findings, even if taking the baby early wouldn't affect the outcome. I suppose one could certainly ask the question: how do we KNOW the outcome wouldn't be affected? But at this point...Verity looks good. She doesn't have heart issues or other organs affected like some T18 babies. I don't see that going in twice a month is going to be any more beneficial than once a month (which the doctor seemed to agree with, even though he made it very clear that it was our decision). So our next ultrasound will be on December 20. 

Finally, without me having said anything about delivery options, the doctor spent some time on that topic as well, and when I told him what the military doctor had told me (about us being a good candidate for vaginal delivery), he nodded in agreement. This was encouraging for me, as he affirmed my desire to not bring further harm but that if things were looking well for us both during labor, then we wouldn't necessarily need to go in planning a C-section. Certainly if it looks like that will be the only way to deliver her alive, we will definitely go that route. Now that I have heard from two compassionate doctors--two medical professionals who respect our desire to do the best we can with and for Verity, who affirm that they and all involved will give whatever support and help is needed for her during and after her arrival--I'm feeling at peace right now with not assuming we MUST do a C-section. I may learn more information down the road to indicate we need to change the plan, but it's comforting in a strange way to have a birth "plan" of sorts that fairly well resembles our previous births: natural delivery if possible, meds if necessary, C-section if necessary. (I've never had a C-section and only managed to do 3 of our 8 kids' births without any medicine whatsoever.)

With reaching 27 weeks tomorrow even by the later due date, I suppose that means we are officially in the final trimester. Only God knows what will happen between now and her arrival!

And...by the way...for the inquiring minds who want to know, this post was written with many interruptions, but some bread and butter went a long way, as did a session of reading new library books!

Of Healing and Miracles

I’m learning that faith in the fire isn’t easily defined. We can say we believe something, have Scripture to prove our points, and then find ourselves being tossed by the waves of circumstances beyond our previous realm of experience. All we can do is keep our heads above water, gulp enough air for breathing, and trust that the faith nurtured by the Holy Spirit is enough to keep us buoyant until the seas grow calm.

The “air” I’m inhaling, then, is the truth I KNOW, the foundation I don’t even have to think about.

God is real.

God is love.

God is all-powerful.

God is eternal and ever-present.

Let’s add a life vest—other truths that are buckled tightly around me and keep me from flailing and slipping underwater when I grow weary.

God has saved me through Jesus Christ and will never let me go.

God is sovereign; God is good; God has eternal purposes beyond what I can see.

God’s ways are higher than my ways, His thoughts higher than my thoughts.

This part is easy. These things I know. What I do NOT know is how, exactly, God will wield His power and work His purposes in particular situations.

God is all-powerful: so can God do miracles? Of course—Jesus used miracles to prove His claim that He is the Son of God.

God is eternal: so does He do miracles in these days when Jesus Christ doesn’t walk in a physical body on earth? Undoubtedly—many of us can testify to supernatural works that can only be attributed to the intervening hand of the Lord.

God is sovereign: so does God bring healing that overrides a doctor’s diagnosis? Sure, sometimes…I don’t have proof of this, but I suspect God really gets a kick out of showing up and showing off when people predict doom and gloom. I think He takes delight in doing the unexpected in order to get someone’s attention and draw them to Himself. (Come on…a donkey speaking to Balaam? A boy defeating a giant with a slingshot? A Jewish girl chosen as queen of Persia who just happens to save her people from mass slaughter? I could go on...)

So yes, I know these things. I believe God is powerful. I believe that if He wanted to, God could “heal” Verity.

Let me tell you what I don’t know. I don’t know what to say—how to respond—to kindhearted, well-meaning, faith-filled, encouraging proclamations about how people are praying for healing for Baby Verity, praying for nothing less than a miracle.

The night we got confirmation that Verity has full Trisomy 18 (as opposed to partial or “mosaic” T18), we talked with our older four kids about what all this means. Our 13-year-old son asked if God could heal Verity—heal her in the sense of making her “normal.”

I answered carefully. “CAN God heal her? Of course. He COULD. He is able. But in order to make her NOT have this condition, He would have to reverse what He has already set in motion. Verity has an extra 18^th chromosome in every single cell of her body, and unless He chooses to intervene in miraculous ways, that extra chromosome is always going to be there.”

What I didn’t want then (or now, truthfully)? False hope. A hope that rests on Verity somehow becoming “normal,” all because we hope and pray for healing and wait expectantly for a miracle. And so that night, I gently squashed the idea of praying for Verity’s healing, mostly because I myself feel that God’s purposes for Verity’s life are not of the miraculous, physical-healing kind.

I will say, however…after a few weeks of wrestling over various thoughts and emotions, God gently showed me that He WILL bring healing for Verity—she will be healed and made whole in heaven, if not here on earth. And so I had another talk with our family, this time telling them that I was sorry if I had discouraged them from praying healing prayers for their baby sister. I still think that “healing” can mean different things to different people, and I still emphasize that heaven is our real home, and THAT is where all things will be restored and renewed. So our prayers for healing WILL be answered, ultimately. And if they keep these things in mind…if they aren’t expecting a “healing” or a “miracle” to look a certain way…if they are open to God’s answer being perfect, no matter what it looks like…then, children—friends—by all means, pray for healing!

Am I wrong to put these mental limits, all these caveats, on our prayers—especially the prayers of other people?

It’s an honest question.

If someone feels led to pray for Verity’s full, restorative healing—who am I to stop that? Pray. Pray as you feel led. But I need to share where God has led ME, and that is to a peace that whatever happens, God has ALREADY done miracles. (Verity is already knit together and growing in my womb, fearfully and wonderfully made, just as she is.) God has ALREADY answered prayers. And I fully expect that He will continue to answer prayers and do miracles.

But…my miracle may not be as glorious as you envision.

My miracle may be bravely enduring labor knowing I will give birth to a stillborn baby.

My miracle may be that I have strength each day to care for a special-needs child with love and compassion, a thought that both drains and terrifies me.

My miracle may be losing our girl to the arms of Jesus just as we have finally learned to “do life” with her and all her needs, nurses, and equipment.

My miracle may be praising God and embracing the life He has given me when I would rather curl up and die.

You know what? On second thought…pray for miracles. Please…pray for miracles. 

Medical Input...the Good, the Bad, and the Ugly

This past Tuesday we had a couple of consultation appointments set up. First we met with Sara, the genetic counselor whom we met on September 26, just before our diagnostic ultrasound for Verity. This was a good and productive meeting. Sara was very well prepared and gave us a lot of positive information about babies and children with Trisomy 18, some of which is in written report form that I was able to take home and peruse when I had more time and brain cells.

Based on our ultrasound findings, both in September and in October, Sara thinks Verity has a good chance of survival. Obviously there are no guarantees, and there are often things that ultrasounds can NOT pick up, but the overall picture shows us that she seems to have a “head start,” so to speak: if any baby were to have a positive outlook with this diagnosis, our Verity would seem to be one who may enter the world ready to fight the good fight.

Sara’s whole demeanor was extremely positive and encouraging. She said she was going to give us the full story of the hopeful end of the spectrum, even though we are all fully aware of the grim statistics. In her words, we would get enough of the negative from plenty of other sources, so she wanted to focus on things that would be helpful for us in the event that we are able to bring Verity home from the hospital.

So we discussed things like feeding options, breathing assistance, and so on. Ted had to leave a bit before our meeting time ended since he had to get to the airport for a work trip. I was bummed that he had to leave before we saw the NICU doctor but figured it wouldn’t be a big deal to fill him in on the information later.

As it turned out, I definitely could have used the moral support.

Dr. B works in the NICU. I was looking forward to hearing what measures the medical team would naturally take at the event of a Trisomy 18 birth. I was rather startled when nearly the first thing out of his mouth was something about dealing with a “retarded” child. He then seemingly excused his use of that term by explaining that he grew up with a “mentally retarded sister.” Over the course of our meeting—which was less a conversation than it was me listening in stunned silence—I gleaned some information that gave a bit of insight into his wording and overall lack of understanding or compassion for this situation.

His sister did not get enough oxygen at birth, and so she lived her 19 years with a mental handicap. This apparently took a toll on the whole family; he spent a fair amount of words talking about the importance of “buy-in” from the whole family, because when there is a baby/child with these kinds of needs, everybody must pitch in and help. And while I don’t disagree with that, I firmly believe our family has a MUCH different perspective already…our kids understand that we have to work hard together and serve one another in order for things to run halfway smoothly! If we want to have fun, for example, we need to be willing to work together to create the time and space for certain memory-making times to happen. But life in general involves putting others’ interests and needs ahead of our own. We don’t always do this with humble, Christ-like attitudes, but still…we have this basic understanding from Scripture and work hard to teach it to our children. A precious moment that lives in my heart just from today? Seeing my 13-year-old son holding his 3-year-old brother by the hand and leading him to the family room for a story so Mom could finish something in the kitchen. My kids ALREADY help their siblings, and they don’t resent it (most of the time!). They distract the baby while I’m wiping her poopy butt so she doesn’t spread the mess. They watch out for little ones who are trying to explore something that could be harmful. They read and color and play with each other. Even the older ones look out for each other…maybe doing someone’s chores when they have other activities or making sure a sibling doesn’t feel left out at a youth event.

I digress. Back to this meeting, which I do wish I had recorded to make things easier for communicating with Patient Services. It’s been a few days, and my emotions have simmered down. I don’t remember exact wordings for everything, more like impressions. One such impression was related to the “buy-in” comments, making me visualize a family meeting where we all sit down to have a vote…are we going to “let” Verity live what this man considers a “futile” life (that word IS one he used with alarming frequency), or do we have better things to do?! (Please note he did NOT actually say this—this was an impression I got upon listening to what he did say.)

Another idea had something to do with his own experience…a child like this (i.e. mentally/ developmentally delayed) takes a toll on the whole family. It is a strain mentally, emotionally, financially. For example, Mom couldn’t take the kids to Disney World because of the sister who would have needed special care. Really?! While I love the idea of taking our brood to Disney World, there are definitely more important things in life.

In between these opinions I did at least learn that the medical staff will do basic, necessary measures such as resuscitation, assisting with baby’s breathing, giving feeding help, etc., UNLESS we instructed them not to do these things (which for us obviously isn’t an option). Beyond that…Dr. B indicated that we will need to figure things out depending on Verity’s particular situation and decide what measures we would want to pursue. He spent a fair amount of time talking about heart surgery as an example before admitting that Verity’s heart actually looks quite good, so that shouldn’t be something we need to deal with…but in the event that it does come up, there is a surgeon who has considerable experience and would be there for us. In any case, he made it pretty clear that his own opinion, and seemingly the opinion of most of the staff (he apparently spoke for them all?!) no matter what their “religious affiliation” was that beyond the basic care given immediately after birth, it would be pretty “futile” to do anything else.

I’m sure folks are reading this thinking, “Why didn’t you give him the what-for?!” And truly, as I drove home, shaking with anger and wiping away tears, I thought of a boatload of things I could have or should have said. But perhaps you’ve been in a similar situation where you felt punched in the gut—caught completely unaware, listening to someone say things so far removed from what you expected to hear, that you couldn’t even formulate words in your own brain, let alone speak them.

I did work to wrap up the meeting sooner rather than later, and as I reached for a Verity card to leave with this doctor, I was stunned yet again when he asked me, “This is your last one, I hope?” He then went on to ask what my “religious affiliation” was.

Good grief.

I was as polite as I could be and simply pray that the photo card I left with him will speak volumes of truth to his heart. No matter how long Verity lives, she is ALREADY a blessing and a gift. She is not a mistake. Her life is not futile. As her family, we may have fears and doubts about our abilities to care for whatever her unique needs are going to be, but we don’t doubt that God has beauty and purpose in all things and that He will be glorified.

I created these photo cards to give out to people whom we meet along the way...maybe those who are already praying for us or those who strike up those polite conversations in the grocery store. I know there are days when trying to answer may cause me to be emotional; or there are times when I want to speak truth about our situation but don't have time to share everything. These cards have made their way into a number of medical caregivers' hands as well as our local prayer circles. They also serve as a good reminder to us as Verity's family!

Raw, Ugly Truth

Yesterday afternoon I had two consultation appointments at the university medical center where we have had Verity's ultrasounds and where we anticipate birthing her. The first meeting was with the wonderful genetic counselor with whom we met immediately prior to our diagnostic ultrasound. The second was with one of the NICU doctors. While I do plan to unpack the information (and opinions) we received yesterday, I feel pressed by the Lord to first be completely open about my own personal struggle. I'm still dealing with the log in my own eye.

It's ugly. It's painful. And I need God to fully deal with it. I don't know how long this part of the journey will take (I suspect it will be an ongoing struggle), but I know it's all part of His refining fire. (That doesn't mean I have to like it.)

Anyway, below is what I wrote in my prayer journal yesterday morning...more to come later, I'm sure...

****************

Job 30:16-22 [part of my assigned daily Scripture reading] seems so real to me today.

"And now my soul is poured out within me; days of affliction have taken hold of me. The night racks my bones, and the pain that gnaws me takes no rest. With great force my garment is disfigured; it binds about me like the collar of my tunic. [My non-academic paraphrase: I feel as if I'm choking.] God has cast me into the mire, and I have become like dust and ashes. I cry to you for help and you do not answer me; I stand, and you only look at me. You have turned cruel to me; with the might of your hand you persecute me. You lift me up on the wind, you make me ride on it, and  you toss me about in the roar of the storm."

God...this heaviness. I can't bear it. Help me. I have no right to ask for your help, no right at all on my own merit. You know the depths of my heart: the ugliness. Selfishness. Resentment. Fear. Feeling resigned to a burden I may carry for...who knows how long? As awful, as ugly as it is, I can't be anything other than completely naked before you. After wrestling and somewhat coming to terms with the real possibility that our baby may die...I find myself now completely terrified that...

...she might live.

Devastating. I'm devastated to face that ugliness inside me. I'm ashamed of what it reveals about me. I'm sorry to say that my heart isn't always in line with what I know is true...

• Your grace is sufficient.
• Your power is perfect in my weakness.
• Your mercies are new every morning.
• Your faithfulness is unending.
• Your steadfast love never fails.
• You carry all my burdens.
• You give joy in the morning.
• You work all things for good.
• You will accomplish your purposes.
• You are refining us and making us more like you.

What can I say?? You've never "listened" to me when I've cried out, "ENOUGH! I can't take any more!" My hands were more than full when Kenna came along! And though I can't imagine life without our precious Kenna, Lucan, Zaden, Seanin, and Rhema, I AM FULL. OVERWHELMED.

I know special-needs families LOVE their children. Life revolves around serving these vulnerable, precious ones, and they wouldn't trade it for anything. I see, hear, feel the love as they talk or type about their children. I already love Verity, and I wouldn't trade this for my own plans--we all know that your plans and ways are much higher than ours. I know. I know. I KNOW.

But.

Sigh.

Someday maybe I won't need the but. Today is not that day. Today I look ahead and see real possibility of a life centered around medical appointments and special equipment for our special girl. I see lack of sleep, lack of order, lack of energy for my marriage and our other kids--our eight other precious kids whom YOU have given to us. Certainly no room for a business or ministry outside my home. Sure, I also see a lot of growth and compassion and love. But. (There's that word again.) It comes with a huge dose of exhaustion and ever-present concern.

And I am utterly, completely overwhelmed.