GI and Urology Test Updates

My poor baby is crying...so this will be as quick as I can make it.

The upper GI and SBFT showed that Verity's anatomy looks just fine, but stuff moves slowly through her system. Not surprising. Poor baby--that was a rough day, with them having to give her barium multiple times because she kept vomiting it out.

The good news is that she is doing very well with the 24-hour continuous feed. We are currently at 26ml/hour during the day and a bit lower at night (because she did struggle with reflux recently and we are being cautious). We are to increase by 1ml/hr every 2-3 days until we get to 30ml/hr, and then after she is stable with that amount, we will work on cutting the time down while maintaining the volume so that she can have some tube-free play time.

At the urology appointment today (which was scheduled because of her two UTIs in the fall), Verity weighed in at 12 pounds, 12.8 ounces! She was down to 12 pounds, 5.9 ounces when we last saw the GI on December 19.

Today was a hard day. Ted took the day off because the tests were up north, and we decided to have him take Verity with our nurse. I'm thankful he was able to do that--it sounds like it was an absolutely awful time. :-( The renal ultrasound went well. The VCUG got off to a rough start since they had to cath her FOUR TIMES, finally calling the urologist himself to do it. Grrrrrr.

The scan showed that she does have some renal reflux; the urologist called it a 3 out of 5 and at this point only wants to follow up with another ultrasound in 3 months unless she gets another UTI in the meantime.

As I said, it was a rough day, and there was much screaming, crying, vomiting (from the screaming and crying), and more screaming and crying. She is finally pretty quiet--she must be exhausted, poor dear. I know it will be painful when she urinates the next few times, so prayers for quick healing would be appreciated.

More thoughts later when I'm not so tired...

Valentine's Day Check-Up

Yesterday we went in for what may very well be Verity's final ultrasound! It's hard to believe we have made it past 38 weeks with this pregnancy. I really am starting to think it would be just like God to have Verity be our "latest" baby and come well past the 40-week mark! (So far that award goes to Tobin, who arrived only 2 days after his due date...most of our babies have been early!)

My mother-in-law, Rhonda, accompanied me to my appointments, and Ted joined us there from work. What a blessing to share the ultrasound time with her this time! My mom got to see Verity in November during our Thanksgiving week ultrasound, Charis has accompanied us a couple of times, and Ted has seen all but one in person.

Verity's heart rate was great, over 150bpm, and as usual she was wiggling all over the place. She is head down, and we got a great look at her little legs, knees and feet (but no pictures) that showed some meat on those little bones! Best of all was the news that she is weighing 5 pounds, 15 ounces, an astonishing amount of weight gain in 4 weeks...last time she was 4 pounds, 1 ounce! This puts her in the 8th percentile, up from the 4th where she was holding pretty steadily over the course of a few months. This also gives her an even better chance of faring well during and after birth. Her big sister Kenna, the earliest of our babies, arrived at 38 weeks and weighed 6 pounds, 5 ounces. It's entirely possible that Verity will outweigh Kenna depending on how much longer she "cooks!" Our doctor seems to think all is going well and reiterated that the nurses are all on alert and ready for our arrival when the time comes.

Over the next couple of days, I have a project in mind: sorting through Rhema's newborn clothes and setting the smallest ones aside for Verity. Confession: these outgrown clothes have remained in bags in our basement because I couldn't muster the strength or energy to go through them, uncertain of whether they would ever be worn by another one of our little ones. But now...today...I feel pretty darn sure that we'll be bringing our girl home from the hospital! It's time to NEST!

This Week's Appointments

We had two appointments on Tuesday (both of which Ted was able to attend with me): Verity’s ultrasound followed by my first OB visit with one of the doctors who may very well be there for her birth. Dr. T was actually the one who called me back in September when the amnio test results confirmed the Trisomy 18 diagnosis, and he is very much like I pictured him—a grandfatherly, (extremely) chatty gentleman who is personable, kind, and compassionate. It was a bit hard to get a word in edgewise with all of his various stories, but overall, I like him, and we were able to give him a copy of our birth plan as well as two research articles that I want to be sure our doctors read ahead of time. This afternoon he has a meeting with other doctors on our team, during which they will be discussing our case, and I requested that he share the birth plan and articles with everyone involved. Prayers that this actually happens would be welcomed…

Anyway—the appointment itself was uneventful but allowed us to verbally emphasize our wishes concerning supporting Verity at birth based on her physical needs and not simply her diagnosis alone. Then, since we were his last appointment of the day, Dr. T took us to the Labor & Delivery floor, as we had not yet figured out exactly where we need to go when the time comes. I feel much better just knowing how to navigate all the corridors and elevators, lol. A nurse gave us a quick tour of the area and answered some questions; she was going to peruse our birth plan as well before giving it back to Dr. T to make copies of to place in my chart and pass around.

The ultrasound showed that Verity continues to grow, holding firmly to that 4^th percentile, but at least she IS gaining. They estimate her to be about 4 pounds, 1 ounce, which honestly doesn’t sound so scary, especially since I have seen much lower birth weights in both Trisomy AND healthy babies who are born prematurely! This alone gives me peace going forward; even if I were to go into labor this week, for example (not that there are indications that will happen!), she would stand a much better chance than if things started rolling a month ago. I think we were kind of expecting early labor based on what we learned initially, but after reading that a third of T18 babies actually come post-term, I’m actually starting to assume that will be our story. I know one should never assume, but somehow it seems almost more likely than not, even though I can’t explain why I feel that way. Not that I WANT to be pregnant that long, and perhaps it’s a bit of a denial of reality, trying to delay the inevitable transition that MUST be made no matter when it happens.

At any rate, Verity gave us some lovely views of her little face, showing poochy cheeks and growing hair. She is as active as ever, and her “practice breathing” in utero (diaphragm moving up and down) makes me wonder if she will be one of the fortunate T18 babies who actually DON’T need respiratory help. I have no idea on that score…perhaps a question to ask my Trisomy community, but really I don’t know if anyone can tell us anything about that or not.

Chubby cheeks!

Arm across face

Hair is growing! Funny how we can see it's longer than last time!

Sweet little fist...looks like she's sleepily rubbing her eyes!

We didn't get great 2D profile pics this time, but this was the best.

December Check-up and Ultrasound

I'm a bit behind in posting--not surprising, given the time of year!

On December 9 I had my monthly OB check with yet another pregnant military doctor, lol. She was due within 3 weeks, so I'm assuming I won't see her again! I took along a little heart-shaped recorder to capture Verity's heartbeat in recorded form. The kids were delighted with this little treasure (part of a keepsake box so thoughtfully sent to us by a beautiful organization, String of Pearls)...a bit too much so! I had to put it away before Rhema or Seanin made off with it! There was not a lot of information to be gained from this appointment, though one of my questions about the previous ultrasound was answered: I had been wondering about the level of amniotic fluid (it can often be high with T18 babies) and learned that it was high but not out of the "normal" range. We decided to go ahead and schedule one more appointment for me at the military base (set for January 9), after which point I will start having my check-ups every two weeks at the university medical center where we get our ultrasounds done.

Our last peek at Verity was December 20. Ted was able to leave work early enough to meet me at the center; he had missed the November ultrasound, but my mom and Charis were there with me that time.

Our tech was extremely bubbly and so sweet! She printed out tons of pictures for us, gave us multiple looks at Verity in 3D, and exclaimed over every little positive thing. She was exemplary in her treatment of us and our little girl! Here are some views of Verity at 30 weeks, 3 days:

You can see the cord floating in front of her face, but I love her little nose!
Also you can see a bit of fat on her cheeks and those adorable lips. 

She is showing us her bicep, lol! Precious little fist up by her forehead.
The shadowy thing across her nose is the cord;
the tech was able to "erase" part of it.

Did you know you can see hair on an ultrasound?! I didn't!
This is the top of Verity's head, easily seen by the outline.
But at the back...little hairs!

Verity's profile at 30 weeks, 3 days.
The "bubble" over her nose is the umbilical cord.

In November Verity was measuring in the 7th percentile; this month she was down to the 4th. Obviously this is compared to all other babies, most of whom are "normal." So I was excited that this time, we had some extra information on hand: a "growth chart" of sorts for trisomy 18 babies. It shows birth weights at different gestational weeks, dividing the girls from the boys and showing a ranking within T18 babies. Based on THIS information, Verity's 2 pounds, 13 ounces (or 1264 grams, if I remember correctly) has her weighing in at the 50th-70th percentile when compared to other trisomy 18 baby girls. Granted, the numbers from this pool are pretty small, maybe 25+ babies at the 30-week mark and about 15 at 31 weeks. (We were kind of in the middle so looked at both sets of numbers, but either way Verity ranked in the middle for size.)

The doctor who spoke with us this time was a new face, but he was kind enough...he didn't really give us any new information. I almost feel that we are at the point where WE may very well have more information than our medical caregivers, so I am going to be sure to carry copies of the research articles I've been reading (see previous two posts) to give out as needed. (Our genetic counselor was delighted to see us again and receive copies of them when she visited our exam room just before the ultrasound!)

Next ultrasound is January 13. I was pretty content to have scans done every 4 weeks or so, because I wasn't convinced there would be any benefit to doing them more often. (We aren't monitoring her heart, for example.) However...when I saw someone comment about the importance of weekly scans on the trisomy parent Facebook page I keep up with, I asked why. This is the response I received:

"If the baby has trisomy 18, that means the placenta also has the faulty chromosomal makeup, and often the placenta fails first and then the baby passes in the womb. They will Doppler the cord flow from placenta to baby to see if it's elevated at all or restricting oxygen. If the baby is going to pass in the womb or something go wrong, it can be caught first by watching the placenta to the baby!"

So this has given me something new to consider. So far, however, things have looked very good, and Verity is an incredibly active baby--possibly even more so than my others! Now I'm praying for wisdom to know if we should increase the monitoring in the future. The med center has offered to do more frequent scans, though the doctors have all indicated they don't think it's necessary. (Not that--we've learned--we want to rely on what the doctors think is or isn't necessary for a trisomy 18 baby!)

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!

Ultrasound #2: Facts

We had another ultrasound yesterday since the last one had not yielded good visibility for Verity's heart. I was so looking forward to getting another glimpse of our baby girl, whose movements grow increasingly stronger day by day. I was also anticipating some answers--something, anything--that might help us prepare for what Verity will need, what she will be like, upon her arrival.

Verity was in the exact same position as at the ultrasound 4 weeks prior--face down--but her increased growth allowed much better visibility for the tech whose priority was to get good shots and measurements of her heart and profile. Aside from her little feet turning inward and the clenched hands, both typical of Trisomy 18, everything looked so beautifully normal to us as parents. Our technician was kind and talkative and able to complete her tasks quickly. It wasn't long at all before we heard from Dr. B, the female doctor who had spoken with us after Verity's last ultrasound.

I will do my best to summarize the facts as we learned them yesterday. Considering it has been 24 hours and I did not take written notes, I may very well forget something, but here is what I remember the doctor telling us:

• The baby's heart looks very normal--this was an immense relief and an answer to prayer, as many T18 babies have heart issues. We have been praying that we will not have to make a decision about any major interventions that may cause harm to Verity, and knowing her heart is healthy in utero gives us peace.

• Verity's profile is absolutely beautiful. Oh wait...I'm supposed to be giving facts here, not opinions! ;-) But that is my interpretation of what Ted and I saw on the monitor coupled with Dr. B's assessment that there is no sign of a cleft lip (which could indicate a cleft palate but is not something that can be determined by ultrasound). Again, cause for celebration. I firmly believe that no matter WHAT this precious baby's appearance, I will see her as beautiful; however, one of my prayers from the beginning has been that our other children will feel connected to and not repulsed by their baby sister. Additionally, it gives me hope that perhaps I will even be able to nurse her. 

• Despite slowed growth being typical of T18 babies, Verity is of an average weight for a baby at 22 weeks gestation (about a pound). Now that I'm typing this out, I realize I neglected to ask specifically about her head circumference, which was in the 5th percentile last time. I will see if I can find out anything about that.

• The doctor could see no other physical concerns that were not already noted in the previous screening. Again, reason to praise the Lord!

• Based on this assessment, Dr. B is even questioning the need for Verity to have to be in the NICU, assuming she arrives close enough to her due date and is delivered without complications. She also suggested that whether I chose to do a C-section delivery or not would not make any difference. Now...the fact that she said these things is...a fact...but...this leads me to a topic for what obviously needs to be a follow-up to this post, which is feelings...so, I will unfortunately have to leave you hanging there for now.

Dr. B asked us some questions we honestly could not answer, mostly because it seemed so many of those answers would have had to begin with the words, "It depends..." I don't remember all of the questions, but I do remember phrases like hospice care, medical interventions, and ethical decisions. As Ted and I stared blankly at each other throughout these queries, it became all too obvious that, despite the reading we have done, we simply do not have enough information to equip us for the wide range of possibilities ahead of us.

So...we left the medical center with another appointment scheduled for next week: a consultation with the genetic counselor as well as a doctor from the NICU. These folks will be able to help us think through the "what ifs." Actually, perhaps it would be more accurate to say they will first help us know what exactly some of those "what ifs" are...

Despite hearing all of these facts, we left somehow feeling as if we know even less than we did before the ultrasound...

Ultrasound

After 96 hours of waiting...it was time. A time we had all anticipated and dreaded. I was ready...and yet so unprepared. I felt rather nauseated and yet somehow perfectly calm.

"There's a peace I've come to know

Though my heart and flesh may fail..."

Our ultrasound tech was young and energetic, but we could tell she was careful in selecting her words. We didn't expect to hear much in the way of diagnostics, but we were eager to learn the gender of our baby, the one normal aspect of this whole process. We love getting to meet our babies in utero! What a beautiful thing it is to see a tiny person wiggling around inside my belly, even as I can feel little movements.

The first thing we saw was "the string of pearls," a beautiful spine. Baby was face down at first, but that position didn't last long. We soon learned our little girl is ACTIVE! And fairly contentious, lol, as she didn't make it easy for the tech to take the needed measurements. In fact, we didn't learn for sure that we were having a girl until quite some time had passed; those little legs were clamped together!

Even though we didn't have numbers for comparing, Ted and I have seen enough ultrasounds to know that our baby was different in at least one respect. I waited...longed to see...those little hands opening and closing. I had never wanted to see that "Hi, Mom!" pose more, a snapshot we have in other baby books lining our shelves, a beautiful profile with a little hand "waving." But our baby never waved. Her hands remained in clenched fists, one of the common problems associated with Trisomy 18. 

"There's an anchor for my soul;

I can say, 'It is well...'"

Aside from the flailing fists, we really were not sure what to make of the whole ordeal. It seemed to take so long to get all the required measurements and photos. The tech even returned to the room after leaving so that she could attempt to get some better takes--we noticed that she zoned in on the top of the baby's head and her heart.

After what seemed an eternity, a doctor entered the room to speak with us. (I was so incredibly grateful to learn that they would not send us away from the medical center without some answers: how difficult it would have been to have to go home and wait some more!) The doctor noted several concerning things from the ultrasound, all of which are characteristic of Trisomy 18:

• The clenched fists, as we ourselves had observed
• Clubbed feet
• Small head (measuring in the 5th percentile)
• Fluid on the brain

While she said the ultrasound results did not show specific problems with the heart, she verbally indicated that there were some suspicious aspects that made them wonder--still, the official report does not indicate anything of concern with the heart. It is, however, something that they will look at closely during our next ultrasound.

Based on these findings, we followed through with an amniocentesis, the first I have ever experienced in all my pregnancies. 

"There's a peace I've come to know

Though my heart and flesh may fail...

There's an anchor for my soul;

I can say, 'It is well...'

Jesus has overcome, and the grave is overwhelmed.

Victory is won--He is risen from the dead.

And I will rise when He calls my name,

No more sorrow, no more pain

I will rise on eagles' wings

Before my God fall on my knees

And rise...I will rise

There's a day that's drawing near

When this darkness breaks to light

And the shadows disappear

And my faith shall be my eyes...

Jesus has overcome, and the grave is overwhelmed.

Victory is won--He is risen from the dead.

And I will rise when He calls my name,

No more sorrow, no more pain

I will rise on eagles' wings

Before my God fall on my knees

And rise...I will rise."

["I Will Rise" by Chris Tomlin]

This song was the soundtrack playing in my head during the whole hour and a half or so that I lay on that table. The few people who knew of our situation at that point were praying, and it was evident. Even as I tried to hold back tears, I could truly say, "It is well with my soul." 

We were told that the initial results of the amnio would come as soon as 1-2 days, with the final analysis finished within 7-10 days. Numbly I received more papers--Ted held quite the growing stack by this point. We scheduled another ultrasound for October 24, and finally the ordeal was over. We had spent nearly 4 hours in the university medical center. But the hardest part was to come: sharing with our parents and our other children what we had learned and then waiting...for what? Confirmation that our baby girl really does have Edwards Syndrome? We knew. We knew! The DNA analysis hadn't even begun, but in our hearts we were already On That Road.