Sunday, February 23, 2014

3rd Trimester Finally Here...Let's Recap...

9/4/13  Anxious to know if we're expecting. Found a partner in crime to look at the early test with me and she confirmed what I thought I saw, but the next test would negate. Wait a few more days.

9/6/13 Day after our sweet daughter's birthday. Take another test and see two pink lines. Go take actual test at doc's and stand there SHOCKED to hear the words, "Congrats! It was postive! You can go schedule appointments now." Not sure how or why to explain it, but it felt surreal to hear those words again.

10/7/13 Opt for elective sonogram to know everything looks OK and hear heartbeat before we travel 8 hours home for two weeks. Saw the peanut on the screen and heard heartbeat. 8 weeks, 2 days, but measuring 7w4d. Not enough to change dates though. Since we saw and heard a strong hearbeat, made it facebook official!

10/14/13 10week appt with OB nurse went smooth. All bloodwork/first trimester labs look great!

Fall...nausea, as per usual for me and pregnancies. Getting through life with constant morning sickness. Having the hubs teach most of my piano lessons because I'm exhausted and nauseous. Sucking on ginger candies to get through photosessions.

12/22/13 Couldn't sleep. Dreamed all night wondering if it was a boy or girl. Excited to go buy a pink or blue stocking the next day after the ultrasound.

12/23/13 7:00am Two days before Christmas. Woke with uneasy feeling. Something seemed off. Unexpected snow storm overnight made sitters late, made my anxiety worsen, put a shadow on the morning. Made it to appointment 10 minutes late due to snowy unscraped roads.

12/23/13 8:45am Minutes into sonogram, joking with sonotech about wrapping Christmas presents at least minute and creative hiding spots when you buy presents early. Informed it looks to be a girl, but needs a better view, we'll come back to that. I ask, "Everything else look good?" to hear response, "Actually I'm seeing a lot of things that concern me." Read that story here.

12/23/13 9:20am Listen to doctor go over ultrasound strip images, which we didn't get to see, but instead sat on the counter just out of view, and told that our daughter? Son? Couldn't really tell...had many layers of concerns: Fluid on the brain-on, as in IN the brain. Fluid IN the lungs.Hard to see both kidneys. Cleft palate. Fluid on neck measuring more than normal. Couldn't see an entire chamber of the heart. Told our child would most likely not make it to birth, and if so, wouldn't survive long, unless it was due to Down Syndrome. But most likely that it wouldn't survive much longer in the womb and that most likely we'd come in for routine appointment and there would be no heartbeat. Pretty much told to go home and wait till the following Monday (week later) when we could do amnio to get more results and would proceed from there. Two days before Christmas, and told to go home and wait for our baby to not make it.

12/30/13 Day before New Year's Eve. Everyone was posting on facebook how horrible 2013 was and how much they were looking forward to a new fresh 2014. We were back at the doctor's for the amnio test, which was not pleasant, and then after told to just wait the 2-3 weeks for results. We needed more answers than that. We needed at least an appointment to hear heartbeat for peace of mind in the meantime. We prayed and decided to switch doctors. We needed to fight harder than that for our child.

1/6/14 Meet with new doctor. Already start to get questions answered. Still don't know what's going on exactly, but thankful that he went over the ultrasound measurement by measurement and explained everything to us. Game plan: wait on amnio results, but in meantime, book Level 2 ultrasound with Topeka and see perinatalogist there. Hope results are in before we head to Topeka.

1/10/14 Wait in nervous and anxious state all day for possible results. Learn what it's like to wait on important medical results. Breakdown and call nurse at 2pm and told results aren't culturing out as they should due to blood in the sample. Nurse called back at 4pm to tell us FISH results would be in hopefully by Monday and at least let us know if it's Down Syndrome, Trisomy 18, or Trisomy 13.

1/13/14 Results back by appointment time. Everything is negative for those trisomies. Relief. Smiles through tears. Joy...ish. Cautioned that it could be maternal cells that were tested (meaning my cells) but most likely not the case. Breathe sigh of relief.

1/15/14 2:30pm Meet with Genetics at Topeka. They can't figure out how the FIST result was negative because symptoms scream trisomy. Thanks for the vote of confidence. Ask if we understand the depth and want to continue with the pregnancy. Stare her directly in the eyes and say YES. We are keeping our daughter, thank you VERY MUCH.

1/15/14 3:00pm Ultrasound. Entire hour of ultrasound, with silent sonotech. Nothing on the screen was explained to us until the doctor came in. Doctor was sweet and very concerned, and again, questioned over and over how the FISH could be negative with all her findings. However, this time there was no evidence of fluid IN brain or lungs, to the point where she looked at us and questioned if that was even the case in the first ultrasound. Praise that the Lord was starting to heal her. Notice possible club foot and cleft palate. Neck fluid nearly doubled what it should be. Heart missing a complete chamber. Twenty minutes of talking and questions and information from the perinatalogist, and her explaining Trisomy 18 or 13 which were most likely possible and told to schedule follow-up repeat amnio with our doctor because again, those results just can't be right, but hey, for future reference, if your baby doesn't make it, then there's a support group in Topeka for that. Gee, thanks, we'll be leaving now.

1/16/14 Repeat amnio with our new doctor. More waiting on results.

1/20/14 Heartbeat check appointment. Results starting to culture, but not in yet. More waiting. Spend week depressed, searching out anything we can on information about trisomies.

1/27/14 Heartbeat check appointment. Results now in, it's Mosaic Trisomy 22. We have a diagnosis, but  does it mean exactly? It explains how the first FISH test was negative, because most likely cells drawn didn't contain any extra chromosomes. Crushed to know it wasn't negative again. Thankful to know our daughter could live a decent life with a mosaic trisomy. Left bewildered, as was our doctor, because there are only 15 reported medical cases of Mosaic Trisomy 22. Spent week trying to get our hands on any ounce of info we could. Dr. put in call to Children's to get seen up there.

2/3/14 Morning: found a facebook group specifically and only for those who have or know someone with MT22. Join. Feel encouraged. Finally finding answers-real answers, ages, birth weights, stories. Afternoon: Heartbeat check appointment. Review questions to ask at Children's. Check heartbeat...can't find it. Slight (a lot of) panic. Quick ultrasound to confirm and BREATHE that there is indeed a strong heartbeat.

2/10/14 Appointments a Children's. Read Part 1, Part 2. Encouraged in the morning by knowing there are surgeries and things that can help her heart, that surgery wouldn't be asap and we can see and hold her first, hopefully. Encouraged that cleft palate looks more like cleft lip, and no more club foot suspicions, but growth chart shows IUGR, or intrauterine growth restriction (aka she's small...really, really small). Then meet with first OB, and was crushed for the next 20 minutes as he talked potential for still birth due to her many 'complications'. Drove home in tears and frustration.

And now...we wait. We continue heartbeat checks every week. Growth check ultrasounds every two weeks. Children's Mercy follow-ups every 4 weeks. Sigh. It's been a roller-coaster.

We hit 3rd trimester today. Part of me is so excited that 2nd trimester is FINALLY done. Over. History. We made it. She made it, despite our first doctor, the perinatalogist, and the geneticist all sure she wouldn't.
God is healing her, a bit each ultrasound. We're encouraged by that. But it's still scary.

With our first two children, I was a super nester. I planned. I prepped. I can remember sitting at the desk at my job at the time while I was pregnant with Isaac and mapping out schedules of how to balance childcare between the two of us without needing extra hands to babysit (and pay for). I had the nursery planned and done before 3rd trimester. I had every gift and stocked item opened and put in its place weeks before delivery. With Abi, I planned for weeks ideas for how to make one bedroom work for both a boy and a girl. I picked colors. I moved furniture in their room. We bought a toddler bed and transitioned our son to big boy bed. We bought pink, even though pink hasn't been around in my husband's family for more than five generations. I went to endless garage sales with Grandma Bff when she visited. I got up at 7am on rainy Saturdays all summer long to accompany Becca, or Lydia, or Emily to garage sales in an attempt to be frugal yet stock the closet pink.

With Chloe, we had a name picked before that first ultrasound, but that was it. We didn't buy anything before that ultrasound. Nor after. On the days/appointments that gave us hope, we bought a taggie. On the days/appointments that brought frustration and tears, I put the taggie out of sight. After Children's appointments, we decided to love wrecklessly and cleaned up the changing table, hung some stuff on her wall, bought a blankie, started considering NICU approved clothes and preemie clothes for her dresser.

Hung out with a friend yesterday who is due just over a week before us. Talked about how to make her nursery work for a boy and a girl. Talked through organizing a closet for both blue and pink clothes. Brought back home the baby bathtub, Abi's baby clothes, and a few other trinkets I'd loaned her when her first was born. Realized that I have nothing else prepared for Chloe, and we're 12 weeks out from delivery. Eleven weeks out if she makes it to week 39 which is most likely when C-Section would be. Nine or ten weeks out if you consider the long thread of MT22 mama's telling me they all went into labor around week 36. Getting nervous for what the spring has in store. Getting anxious that I should be digging through the totes of baby stuff, finding pump, finding burp clothes and getting them washed up, looking through Abi's newborn clothes to see if any will work and washing them up. Can't buy bottles yet...don't know how she'll feed with cleft lip. Can't stock up on possible formula if nursing is a disaster again. Can't stock up on diapers because we don't even know what size she'll need, or if she'll have surgery or a feeding tube and if so, will that brand of diapers rub on her belly? I know there's time for all of this (or is there if she comes early?), but I'm such a nester and I want to nest. I long to nest. It's in me as her mother to want to prepare a home for her. But I'm hesitant. I don't even know how to prepare for her. How long will we want her in our room for closer monitoring? A few months? 6 months? And then back in our room again for more monitoring after her 2nd surgery at 6 months? {Note: find baby monitors in storage}. Till she's 18 years old? I wish. I might. Sigh...

Welcome, 3rd trimester. Lord, be with us now.


  1. I am with you on this journey, Jodie. She and You never leave my mind. Love you, Mom