Wednesday, February 12, 2014

Part 1: Children's Mercy Visit #1 {Forgive me, it's a long post, but it's what we went through in one day}

"You hem me in, behind and before..." Psalm 139:5
"...You quiet me with Your love..." Zephaniah 3:17

Those verses kept coming to mind during the night before when I couldn't sleep. Thankful for that reminder that the Lord is my Father and loves me as His child, and will quiet me with His love throughout this day. Reminded me of how often when our other children are sad, scared, frustrated, that we help to quiet them by loving on them. Thankful for that reminder that in the midst of this day, He has promised to do that for us. After navigating the rough waters that are Kansas City at morning rush hour, we arrived at Children's, not really sure what to expect or what the day held before us.

"The sun comes up, it's a new day dawning. It's time to sing Your song again..."

Our first appointment was a combined meeting with a social worker and genetics counselor. The first question they asked was, "So, Trisomy 22? That's really unusual." Yes. We know. We're learning that ourselves. Even the geneticist admitted to having to research it more before our appointment, and tried to give us a printed resource to read, but alas, it was the same one we've already seen and read. Unfortunately genetics took up too much time to meet with social work {about things like Ronald McDonald house when she's born/costs of travel since we're driving from Manhattan/activities for our kids to do during our stay/etc.} so that will have to be another appointment on another trip. Genetics did a good job of explaining the different ways the MT22 could have occurred, be it if Alan is a carrier, or if I am a carrier and happened at conception, however {and although we won't know for sure without a future test}, we do not carry any signs or symptoms of having it, nor does anyone in our family, so genetics is pretty certain that it happened spontaneously on its own at conception. Lightning strike was again the term used to describe the rarity.At this point, there's not a lot genetics can or will do until she is born and then we can begin to see what other traits she has.

"For You created my inmost being; You knit me together in my mother's womb. I praise You for I am fearfully and wonderfuliy made..." Psalm 139:14

Next up was our hour plus fetal echo-cardiogram. This consisted of a sonogram specifically for her heart to watch for blood flow, to see how it's fearfully and wonderfully designed, to gain any knowledge we can this side of birth to know how to help her when she is born. Chloe was a bit less than cooperative. Forty-five minutes in, and she finally gave the tech a few good images, to the point the tech said something to the effect of, "these might just be the best three images we get this whole time." I believe the words the tech used were ornery and stubborn. It would be a theme for ultrasounds that day.

From the fetal echo we were taken to meet Dr. Swanson, the fetal cardiologist, and her nurses Lori and Amy. It's important to note her nurses as they were A) amazing, B) so kind and caring, and C) will be our #1 speed dial resource for questions, concerns, medications, treatments, to call about anything from if Chloe gets a cold to if Chloe is starting to turn blue and so on after Chloe is born. Thankful we get to know them now before she is here.

Dr. Swanson started by explaining and showing us a diagram of a normal heart, and one specifically drawn up of Chloe's heart. Because of the depth of info from this meeting, I'll be posting it in Part 2, specifically of this appointment and all that is going on in her heart and what treatments will be. To sum up for now, the diagnosis is Tricuspid Atresia. Chloe is missing the right atrium (bottom right chamber) that pushes/pumps the oxygenated blood to the lungs and rest of her body. Treatments will include waiting up to 2 weeks after Chloe is born, but monitoring closely in NICU from the moment she is born. There are a couple of ducts in the heart that are there at birth in most every infant, but close off over time after birth. In cases like Chloe's those ducts usually do not close right away but instead stay open. If hers stays nice and open, then we could bring her home as soon as 2 weeks after birth and monitor her from home (being trained in how to care for her and watch to watch for). At this point, she would need her first heart surgery at 6-12mo, then 3-4 years. If that duct isn't staying open, then they would do surgery around that second week after birth to surgically make that duct stay open, around 2-3 weeks after birth, then next surgery would be more like around 12-18months (because the shunt would keep it open longer), then 3-4 years. Dr. Swanson said she probably won't ever be a track star or play in the olympics, but that she most likely can run track or try for olympics...meaning no restrictions, but monitor activity. However, the downside to all of this is that around age 20-30, Chloe would most likely need a heart transplant. That was the part that got me the most. For more about Chloe's heart, diagnosis, and treatment, please read Part 2.

"I cry aloud to the Lord; I lift up my voice to the Lord for mercy. I pour out my complaint before Him; before Him I tell my trouble." Psalm 142:1-2
"You are my hiding place; You will protect me from trouble and surround me with songs of deliverance." Psalm 32:7

Our final appointment of the morning was to meet with an OB nurse and then OB anesthesiologist about delivery at Children's, and I might note that both of them started off by saying, "Trisomy 22? Really?" Sigh. The best way to explain it is that Children's is just that-a children's hospital. However, they are equipped to deliver here so long as the mother is healthy enough to qualify. Thankfully at this point, I am considered healthy enough to deliver there {though we still have questions such as how long am I allowed as a patient after birth, considering with my other deliveries I was in the hospital for 3-4 days}. The anesthesiologist explained this is pregnancy, there is still time to develop things like high blood pressure, pre-eclampsia, and so on and at that point, we re-evaluate where to deliver. There is a hospital called Truman right near Children's, with a covered bridge for transporting patients from one hospital to the other. If I do become high risk, then I would deliver at Truman, and they'd take Chloe via that bridge to Children's NICU asap.

"He gives strength to the weary and increases the power of the weak." Isaiah 40:29

By this point we had a break for lunch, but were both already exhausted from the long morning and overwhelmed with all the information we were learning and attempting to soak up. We found some encouragement in the thought that there's a chance we can bring her home after 2 weeks, or if she did need surgery, that it'd be between 5-6 weeks from birth we could bring her home as compared to the months we expected to be there. And we were thankful in general that her heart is even operable. We were thankful that I passed the health requirements to deliver there. We were thankful for the kind nurses, sweet fetal sonotech, and amazing compassion from Dr. Swanson. But we were on the verge of drained, and still had a long afternoon appointment ahead.

After both of us nearly falling asleep in the waiting room waiting for our next test, we met the next sonotech and headed back for the two hour sonogram. On paper it should have been from 1-3pm including the counseling/discussion with OB doctor at the end. However, Chloe, in true Chloe+ultrasound fashion, was beyond stubborn. By 2:45pm we still had a ton of measurements to try and get since she was not cooperating (again). At one point she scared both us and the tech by making us believe the blood flow from me to her through umbilical cord was not flowing properly, which is a huge concern. However our sonotech got creative and just watched her without moving for a few minutes, and was able to determine that Chloe simply had the hiccups. {This is where the three of us all sighed heavily and the tech called her downright naughty}.

"My frame was not hidden from You when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body..." Psalm 139:15

Our sonotech was amazing. We told her that we understood that the doctor would need to discuss the results with us, but that if we sat through one more silent ultrasound without knowing anything, we'd lose it. She was kind enough to say that unless it's something major, which if we wanted she would gently explain, but most likely if she was quiet it was simply because she was concentrating, otherwise she would talk us through things. Hence why we could tell when she got quite watching the blips that shouldn't be there during the hiccup episode. She was kind and encouraging, asking about our story so far, joking with Alan about candy crush, and telling us of her own 2 year old and episodes of tantrums and mommyhood. It was the most laid-back part of our long day. Thankful for that.

Highlights from the ultrasound:
*No fluid in brain that should not be there. {Very first sono at 19weeks showed fluid in the brain}.

*No fluid in or around lungs that should not be there. {Again, this was found on the first ultrasound}.

*Looks more like cleft lip than cleft palate-lip is simply the lip, palate is hole in the roof of the mouth. Cleft palates are hard to identify, if impossible, on an ultrasound. It's more so wait for birth and see. For this reason, they were surprised that so far we've been told from our first ultrasound and our 2nd in Topeka that it's a cleft palate already. So we praise that for now, it only looks like cleft lip.

*No club foot!! What most likely was the case at the Topeka appt. is that her foot was simply squished up against my uterus at such an angle that it appeared to be clubbed. However, there is only one straight-on view that can really determine if it is clubbed or not, and Chloe was, in the end, nice enough to allow us to see that view on both feet. So praise that there's no club foot!! To us this was minimal, but at the same time, would have been yet another hurdle/challenge in the future. So thankful this is now not the case.

*Possibly less fluid on the neck than originally. At Topeka, it measured 10mm (normal is less than 5 I think, with her first being 9mm). At Children's, it measured around 8 point something or other mm. However, this could also be off a bit depending on exactly how it was measured in Topeka. We're going to choose to focus on the fact that for now it appears smaller {which the fetal cardiologist said can greatly diminish and go away before birth-pray this is the case!}

*For the first time, we saw BOTH kidneys, and they looked to be good size and functioning properly.

*Overall, it appeared that everything was looking good-brain looked good, organs {other than heart} looked good and were all seen, etc. The only thing that looked off is that they measured all her arm and leg bones, and they look to be off just a bit, which is called asymmetrical, meaning one side of her body might be slightly smaller than the other. However this is a common trisomy trait.

*She is small. This is to be expected as Inter-Uterine Growth Restriction (IUGR) is common with this trisomy. This simply means she's smaller than she should be for her dates. Right now she weighs about 1.5lbs, and the goal is to get her to at LEAST 4lbs by birth, but HOPEFULLY and PRAYERFULLY to 5lbs or more. If she is under the 4-5lb mark, it makes things really hard to help her/intervene as they do not make equipment/tubes/etc. small enough to help at that point. This is hard for my mind to grasp considering our son was 8lbs and our daughter 7lbs13oz at birth, and in general since their daddy weight over 10lbs at birth! However, I'm learning from other mosaic trisomy 22 families that this is really common, and gives us hope.

Along with her measuring small, they take a look at measurements of her leg and arm bones, head circumference, stomach and determine what percentile she is on the growth chart. Chloe is at the 10th percentile. The cut off/the worry mark is at the 10th. As in, if she drops below that 10th mark, we begin to get very concerned because she's not growing anymore. Or, she could stay at the 10th percentile mark throughout the rest of the pregnancy {the facebook group we're a part of now had three people say their children did that the entire pregnancy} and there'd be concern about her size at birth, but it's better than dropping below. There is a chance if she drops below or stays right at 10th that I might have to be monitored in the hospital to keep an eye on her. HOWEVER, there's also that chance that she can GROW. We PRAY she grows. We PRAY she increases on the growth chart. Her name, after all, does mean BLOOMING.

Because of her size on the growth chart, what normally happens would be ultrasounds at Children's every two weeks to chart her growth. Because we live 2+ hours away, they've agreed to let us do the next 2 week ultrasound back home with our doctor, then the following one at 2 weeks is when we're back at Children's, and after that another one back home (so alternate where it's done, just so long as it's every two weeks to keep a close eye on her).

There's also still a bit of clarity still needed on due date. Please pray for wisdom and discernment of the doctors, because even though it might be off one way or another by only a few days to a week, this means a HUGE difference when discussing her percentile on the growth chart, as well as when to deliver.

"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not get burned; the flames will not set you ablaze. For I am the Lord, your God...Do not be afraid, for I am with you..." Isaiah 43:2-3;5. 

We felt overall encouraged from the ultrasound, and in general from the day, but also getting concerned about her growth restriction. At this point one of the first of a few OB's we'll be having came in and met with us. He started by explaining how they could tell it wasn't a club foot {to which our sonotech was behind him, smiling gently at us because she'd already explained all of this even though she wasn't necessarily meant to}. But after that, things got much more serious. Without going into too much detail here/specifics on the blog, I will say simply this was the hardest part of the day for us as the OB began to explain what complications can take place if Chloe does not grow in-utero {if she starts to drop under that 10th percentile}, and in general the risks still associated with this pregnancy because of the fact that it's not just heart condition, and it's not just size restriction, and it's not just a trisomy case, but that the combination of all three make things much more complicated. We understood all of this and what the worst case scenarios are, but wanted to be more positive and talk through what the weeks before and of delivery looked like-at what point should we head to KC to be here incase she'd come a couple weeks early, what is delivery like here at Children's and so on. Instead, the OB camped out on the complications, the worst case situations, the higher risks and negative statistics. At one point Alan, trying to consider best possible scenario and get to the positive, asked, "If she makes it to full-term, or at least late third trimester, when would we head over or when would you want us close for delivery, or at what point do we set the c-section date?" The OB answered simply, "We don't". He said for now, we focus on her growth and see what it does, we monitor with follow-up appointments every 4 weeks here at Children's, and we keep my regular weekly heartbeat checks back home with Dr. P and the every-other-week ultrasounds, and in general wait till I'm into third trimester with more information before we'd start to even think about delivery. We were frustrated that he never talked about the positive or best case scenarios...{Insert where I lost it after he walked out of the room, and where the sonotech herself agreed he was not exactly encouraging. Weary, scared, overwhelmed would best describe this particular moment}.

So thankful that our God is bigger than that doctor. We'll trust and respect all of our doctors, but just saying that we're thankful there's a Greater Physician who can make Chloe grow, should He will it to be. We pray for that. Pray, pray, PRAY SHE GROWS. I find it no surprise, I find no irony in the fact that we chose her name before she was conceived, always liking the name Chloe, and that we didn't even consider its meaning other than it was Celtic and we liked the sound of it. The Lord already knew that her name means blooming, and He's already brought her this far {considering we were told at Christmas to go home and wait for no heartbeat}. We pray to Jesus that He would continue to bring healing and GROWTH.

Thankful the Lord brought us safely home through the rush hour traffic. Thankful that the kiddos were well-cared for by their aunt Jill. Thankful for the fun they had making valentines and cookies with her. Thankful for the warm and cuddly hugs of our littles. Thankful that overall, the day was mostly encouraging. Thankful the first appointment is done and we just take things one. day. at. a time. We will post Part 2 about Chloe's heart condition soon, but for now, I must potty train a toddler and have been asked to build a race-track with a preschooler, who's hair resembles Alfalfa, and who has been in the same pj's since Monday night.

"...Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless the Lord, O my soul, O my soul. Worship His holy name. Sing like never before, O my soul, we worship His holy name."

{Spotify users: Look up 10,000 Reasons by More Than Rubies}


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