Saturday, June 28, 2014

Cramps & Turkeys

28 Weeks
2 Years

I’ve slowly been washing Nora’s old items and getting baby items in order - I washed all the newborn items and could barely remember those days of Nora being so small! Nora loved seeing all her old clothes, “Ooohh they’re so cuuuute!”




Passed my glucose test this week and received my Rhogam injection to protect my O- blood from possible attacking Hannah in the womb. 

Kicked off the Third Trimester today! And not in a great way… after waking up, around 8:30 I had some mild cramps. They weren’t timed out, it was a constant uncomfortable cramp. Hurt more when I was sitting. Hannah was still moving around, too. I drank a ton of water and ate some food and they went away by lunchtime. My abdomen was also tightening up in intervals so I’m pretty sure I was having some bad Braxton-Hicks. 

I gal I know delivered her baby early at 28 weeks - ! I can’t imagine… feeling those cramps today made me think… I am not ready! My labor with Nora was all back labor - I did not have the menstrual cramp feelings that typically occur. It wasn’t pleasant and I hope this time around isn’t as long as the first!

We also hit the Farmers’ Market this morning. I walked around holding Nora’s hand and after passing a gentleman, I heard him say “That turkey’s done!” Um, wow. No sir, my turkey is NOT done - I have three more months hopefully! Good day to YOU!

Tuesday, June 24, 2014

We Made It

It’s been our busiest weekend this summer - with no A/C - and we made it. 

After over 24 hours, 333-HELP [formerly Thompson Heating & Cooling] never called me back after I asked twice if someone was going to help me. Very disappointed - they lost a customer for good. Waiting until Tuesday’s install seemed like a lifetime away. 

Friday Tim had some business to take care of so I took Nora to the Children’s Museum at Union Terminal. It was our first time! Hey, two working parents, it’s hard to get to these things. It’s a really great place for families and it was nice to just let Nora GO. I didn’t feel like I had to hover over her, she just ran from exhibit to exhibit. We only stayed for a little over an hour and she probably could have kept going, but I kept lunch + nap time in mind. 


Ja' Mon!

Getting the doggies water at the “vet.”



Tim met us and we ended up having lunch at Mellow Mushroom in Wilder, KY. Nom! 

My Mom came at 3pm to watch Nora for the night while Tim and I went with some friends to see Chris Robinson Band in Louisville. I put my Mom in our room since it had a ceiling fan… bless her heart for rocking with no A/C. 

It was strange leaving Nora that afternoon - I felt like I kept forgetting something; I think it was the little person who is always with us!

It was nice to kind of unplug and leave responsibility for less than a day. We stayed at the Seelbach Hilton which I highly recommend. Part of me missed being able to have a drink - a bunch of parents out on the town? I was craving a beer! We ate at BBC which was fun and super hippie. Enjoyed catching up with close friends.

The show was really good - a new venue that’s super small. The music was great, very hippie vibe, a handful of older Grateful Dead fans there, lots of noodle dancing : ) Being super sober is always interesting… I had one drunk girl touch my belly. Geezum. And at least 3 others almost touch and say “Awww!” One older lady stopped in front of me and say “I’ve never seen someone so skinny with their belly so far out!” Um… thanks? 

That knockoff American flag? It’s a Freak Flag. Love it.


Even though I feel pretty “able” when I’m pregnant, standing on my feet that long was rough. Not to mention Nora had been up since 5:50 that morning… Gah! At set break, we were able to sit on some couches upstairs which helped… I made it to 11:45pm. I couldn’t take much more on my feet. I was back in the hotel bed at 12am - crazy late for me! 

We got back at almost noon and cleaned up because we had a family wedding that night - ! We have so many weddings on my Mom’s side in recent years, so we try to get to at least one a year. It’s hard with schedules and living 2+ hrs from these weddings. 

We drove about 2 hours to my cousin’s wedding. It was nice to see family, especially my 88-year old Grandmother. Visit with some family and Nora of course started falling apart toward the end. She’d already been to the library and Nature Center that AM! 

Welcoming the bridal party on Grandpa’s lap. 


We left at 7:45pm, got home around 9:45pm and CRASHED. 

---------

It is Tuesday now at 5pm and I worked from home all day because the A/C tech came at 7:15am. He was wrapped up and left at 3:15pm [he’d also installed a new all-house humidifier]. I could cry I’m so thankful the house is back to cool.

The poor tech guy from Recker & Boerger was in a polo shirt and khakis - I got him 3 big glasses of ice water throughout the day. I’m going to be sure to give good customer feedback! 

7 Days without A/C during the hottest week of the year thus far. I did my best not to complain because there are far worse situations to deal with. 

No complaining about heat from the little one!


Onward!

Thursday, June 19, 2014

Father’s Day 2014

We spent this year’s Father’s Day with my Dad and while Nora stayed back with my Mom, we all went canoeing with my Dad - it was really awesome. I haven’t been canoeing since before Nora was born and it delivered on the relaxation. Not to mention this was the first time since they’ve moved in that we could enjoy the screened in porch - I could spend all my time out there!






She looks so old!

It's Pouring

26 Weeks

“When it rains, it pours.” Truth. 

1. Tim was summoned for jury duty for the months of July - August... It’s a high possibility I could deliver early; i.e. end of August. Tim submitted a letter of dismissal about our unborn daughter’s complications and that I could deliver early. Denied. Two big middle fingers to Clermont Co. Court system. 

2. I came home Tuesday evening and looked at the thermostat. It read 77˚ when I’d set it at 72˚ that AM. Went downstairs and the one pipe [?] was frozen. Awesome. We knew the AC was 15-20 years old. Last summer we simply had a handyman recharge the freon. We felt it was silly to recharge again for another $400 this year and simply replace the system since it needs to be anyway. 

I had called a local place at 8:30am on Wed and again halfway through the day only to be told twice, “Someone will call you.” It’s currently 11:20am on Thursday and they never got back to me. I since have called Recker & Boerger who helped me immediately and within one hour I have an appointment for Tuesday [unfortunately the soonest available] for a new installation. 

3. Someone who knows me made an unintentionally insensitive comment via social media about feeling wonderful after receiving a “normal” genetic test result for their unborn baby. I’ve grown to dislike the word “normal.” I was already grumpy about the AC and seeing this statement really got me. I couldn’t help my anger and resentment bubble up. I realize a lot of people probably don’t know or realize things they say can be insensitive. I’m trying to get a thicker skin, but it’s going to take a while. 

It also made me hope I’ve never said insensitive things along the way of babies/fertility... not until knowing friends who struggled with fertility or miscarriages do we take for granted a “normal” pregnancy. I think that’s why with my second pregnancy, from the get-go I wanted to keep it off social media. I’m just more in tune with oversharing “perfect” pregnancies. Especially for women who struggle[d] or are having complications. 

So for my dear acquaintances who have been through the trenches - I hope my first time around, I wasn’t that annoying pregger. Now I’m on the other side and it’s hard. Seeing all these adorable babies on the computer is fun, but hard because my sweetie will have tubes galore... but that’s okay because she’s still our awesome daughter. 

In summary - all of theses things bundled up made for a really rotten day Wednesday. I cried when I got in my car. Then I got home to an 80+ degree home and I cried more. Tim sweetly rubbed my feet before bed and we slept decent and today is a new day! 


Thursday, June 12, 2014

Hannah’s MRI & Echo [Long Post]

25 Weeks

Today was the day we’ve been anticipating - get some solid answers and have a semi-plan. So to start off I’ll top line with: it was a good day, everything suspected was confirmed and there were no surprises. So we left Children’s Hospital feeling good. 


5:30 am: Mom & Dad wake up and shower, Nora wakes up 15 minutes later due to all the bustling. We’re out of the house by 6:20am. 


7:10am: Find our way to Children’s Hospital. Embarrassingly, after attending UC for 5 years, I’d never realized Children’s location nor seen it until today. The hospital itself is like a small busy city - people moving everywhere constantly. 



Our day-long schedule - !


7:30am: Register with Radiology for my/Hannah’s MRI. We were asked various questions and I changed into gowns and got into the MRI room by 8:15am.


8:20am: I lay on my left side and the technician secures my mid-section with some foam pieces as well as my upper legs. I laid on a pillow, had a wedge for my belly and a pillow between my legs. I opted for music, so also laid on some large headphones. I was told it was going to be loud and it was; to the point I could not hear Bob Seger singing his Night Moves in my ears. 


For those of you who have not had the pleasantry, MRIs are not fun. It wasn’t so much being in the tube, but being slightly strapped down in one position for 1-hr that was hard. It’s a major exercise in mental escapism. It helped that my head was close to the opening… when the huge noises weren’t occurring, I would wiggle my feet and hands. But knowing you can’t really stretch or move position was rough. And twice I was asked to hold my breath for 20 seconds for photos. Ugh. 


Thankfully it went a little faster than I thought and was given a handful of graham crackers and apple juice - because I wasn’t allowed to eat prior! 





10:30am: Echocardiogram for Hannah - way easier since it’s essentially an ultrasound. The cardiologist came in immediately afterwards and confirmed what had been suspected: Hannah has an AV Canal Defect. The doctor said in terms of heart defects, it’s common. He talked and drew out what a “normal” vs AVCD heart looks like - she’s basically missing some connecting walls that can be taken care of through meds until somewhere between 4-6 months old when she’ll need open heart surgery [so somewhere between January - March 2015]. The cardiologist seems confident, he was great to talk to and super friendly. 





11:30am: Lunch [finally!] in the really nice cafeteria. Two observations - 1. Lots of kids stared at me presumably because of my belly. 2. Children’s Hospital employs a lot of special need people which impressed me.


12:30pm: Meet with an RN, Amy, who was incredibly nice. Met with a Genetic Counselor who asked about extended family medical history. Met with a social worker who can recommend more resources for Hannah’s [presumed] Down Syndrome. 


2:15pm: Meet with the Director of Fetal Medicine, Hannah’s Pediatric Surgeon and the Neonatal Director. These men reviewed Hannah’s MRI and Echo photos. First, her mildly large brain ventricles were brought up due to a bit of extra fluid. There is no blockage, so this will be monitored the rest of the pregnancy. If it becomes too much, she will need a shunt put in to drain the fluid to another part of her body. I really really hope this doesn’t happen because I’d prefer Hannah to NOT have a 3rd procedure. 


Second, her Duodenal Atresia was confirmed. The surgeon was very soft-spoken, but felt this was a very straightforward occurrence that they treat often. He also drew on a board what her stomach looks like and how they'll fix it. 




Third was the only surprise of the day: they saw a 1" cyst on Mommy’s ovary! Wheeee! Haha. Honestly though, they saw no concern and will pass this information to my OB. Great. 

Next, the Neonatologist went through what will happen immediately following delivery which was a huge help so we know what to expect. They all said to deliver at Good Sam based on their Level 3 NICU. 

First, I do have a higher risk of delivering early based on the T21 - average of a couple weeks possibly. They agreed I can proceed with what birth plans I want, but said I could have increased risk of a C-section simply because Hannah could have heart stress during the labor process. 

Once I deliver her, they will give us what bonding time they can, but the Neonatology team will need to assess her quick with her lungs, then heart. They will hook her up to an IV for nutrition fairly soon and give her an NG suction tube to remove the excess fluid in her stomach and duodenum. Within 1-4 hours of birth will transport her to Children’s Hospital. Tim will follow the ambulance and they will get me over when I can. That’s going to blow : (

Once Hannah is at Children’s, our team will assess her for how quickly to do the duodenal surgery. They will transfer her IV to a picc line which they can leave in for a longer time to continue to give her the nutrition she needs while waiting for surgery  as well as any meds she’ll need. 

She’ll then receive her stomach surgery which will be a small incision in her abdomen. She could need a gastronomy tube that feeds her directly below the correction so she can get her nutrition. Hopefully within 3-5 days she’ll be eating orally. They were straightforward to tell me feeding is going to be hard - it could be a few weeks until she starts to nurse from me. I think this is what I’m anxious about because feeing any baby is hard. Feeding a baby with Down Syndrome is harder due to their condition. Feeding a baby who starts life on tubes instead of Mom is going to be super hard. I’m determined to get her breast milk as long as I can, so I think pumping is going to be key. Because her heart will be working harder due to her AVCD, she’ll burn calories faster and need my milk to be enriched or supplement with formula. 

I’m anxious about the NICU experience - I anticipate being there at the very least 3 weeks… up to 6 depending on how Hannah recovers. We’re going to schedule a tour of Children’s NICU and hopefully ask more questions like how parents stay or come and go… visiting hours, etc. We still need to have care for Nora, yet see her and Oh Yeah! We have a dog too : P We’ll figure it out and know we have an awesome village of family and friends to help us. I just know I’m going to get itchy and want to bring her home to start our New Normal. 

I can’t repeat enough how thankful we are to live in one of the best cities to care for her. I actually keep forgetting she will probably have Down Syndrome because I’m so focused on her post-delivery needs. I also keep forgetting I have to go through labor - ha! I’m reading up on the Bradley Method and again, hope that I can at least deliver naturally. Of course, her health comes first! 

3:00pm: We leave Children’s feeling confident, reassured and glad that we have confirmation of what Hannah will need, we know how the game plan will go and we can continue to focus and prepare.

3:15pm: We treat ourselves to Starbucks

4pm: We pick up Nora with the best welcome ever: She hugs us at the same time and says, “Mom, Dad I love you so much.” I nearly start crying. 

Later this evening, I told Nora that Hannah had a check-up with the doctors today because she’s going to need her heart and stomach fixed. Nora said “Oh! Hannah’s broken?” 
“Well, a little, but the doctors are going to fix her.” 
“Daddy will be the Doctor?”
“Well Daddy’s going to help.”
“I’ll help Hannah, too.”

Now we wait for her to arrive!



Monday, June 9, 2014

10 Things TO SAY To Parents of A Newborn with Down Syndrome

25 Weeks

I saw this parent’s post and thought it was very helpful - for friends, family and myself even. If the tables were turned, I wouldn’t quite know what to say either! 

http://www.gillianmarchenko.com/10-things-to-say-when-a-baby-is-born-with-down-syndrome/


Sunday, June 8, 2014

Rainy Sunday


25 Weeks
2 1/2 Years

Every now and then it’s nice to have a dreary day to stay indoors. Today was that day and we were very productive at home; swept and tidied the basement, lots of laundry including washing the Chicco stroller and pumpkin seat. I even pulled out a few receiving blankets to put in Hannah’s room which is slowly coming together. Hannah’s room will basically be all of Nora’s nursery pieces, with some new artwork on the walls.

*Oh yeah - Baby Girl’s name is Hannah Mae Kron. I don’t think I posted that here yet, but we are telling her name due to the fact that so many doctors and professionals will be assessing her. Not to mention it helps when people want to direct any positivity towards her : ) 

We also managed to give Ailo a bath while Nora napped and I washed the kitchen floor. 

Good Sunday home.


Nora was a Grump-A-Puss this afternoon. We think it was hunger.

Big Sister helping re-assemble the pumpkin seat.


I can’t believe this goofball ever fit in there!




Dipping Our Toes In...

25 Weeks

Saturday afternoon the 3 1/2 of us went to Sharonville Park for the DSAGC Early Matters Ice Cream Social - all parents of children with Down Syndrome; from prenatal [me] to 5 years old. It was very intimidating walking up to a park shelter knowing no one. We knew what Martha, the Early Matters Coordinator, looked like and started by introducing ourselves to her. 

After a nice conversation about how awesome all the families are and how well they are all doing, a nice woman, Julie, introduced herself and her 2-year old son, Jonah, with DS. Everyone we talked to was very open and honest about everything - a handful of mothers didn’t know their children were DS until after delivering - I imagine that emotional transition had to be harder than ours. A lot of families were very candid about how they went to dark places after their diagnosis. Everyone there truly said they are doing very well now and very happy and it really showed. 

I noticed that Nora towered over a lot of children there who were close to her age - I hadn’t  realized that children with DS are in smaller stature overall. Some of the children had just turned 2 and were just learning to walk. Which we’ve learned - the milestones happen much later than a child with typical chromosomes. 

We stayed an hour and felt good we’d made this small leap. The Buddy Walk is the next event on Sept 6th, but I’m a little nervous I could be close to delivering at that time! I know the Buddy Walk is a huge, wonderful event, so maybe we’ll be a last-minute registration depending on how I feel - ? 



After the ice cream social, we walked over to Nana & Papa’s house to visit and hit the St. Michael’s festival. Nana gave Nora some money to use and we played a lot of games that Nora won prizes at. The compact festival was overstimulation for Nora which says a lot!

We ran into the Morris/Godfreys and invited them back to Nana & Papa’s house. The girls played/argued over toys while the parents rolled their eyes in laughter. 

Thursday, June 5, 2014

Nora Updates

2 1/2 Years Old!

Giving Nora some blog time: 

- She’s probably 90% potty trained; we’ve braved some public places and done well... we have yet to brave nap time and bed time with big girl undies

- She’s been cramming organic grapes and cherry tomatoes lately

- She’s becoming more and more “Nora” - I told her after I put her to bed that I got all the stinkbugs out of her room [we have a gross amount]. I turned the light and low and behold, there was one up towards the ceiling. “I told you so Mommy!” Yes, you did, Nora.

This is breakfast by her choice in recent mornings.

Finding Joy Again

24 Weeks

It hasn't even been a full month since our “devastating” news... which looking back now isn’t devastating. I’m more concerned about her healthy organs than Down Syndrome! Another person told me this week, “I’m so sorry.” I responded, “Don’t be!” I’ve found other parents and some message boards that have been reassuring. 

We’re in contact with the Down Syndrome Association of Greater Cincinnati [DSAGC] who has an impressive program for all ages. Additionally, they’ve hooked us up with a 2014 birth group that has monthly meet-ups. I think this will be a great help being able to communicate with parents in our boat. 

Of course, I still want my “old” friends to make sure they keep us in their date books too : )

I had my 24 Week OB and Level 2 ultrasound yesterday - everything looked the same, which to me is totally fine. As long as we don’t get “worse.” The only change was a bit more amniotic fluid in me. 

Through the message board I’ve been using, it seems a lot of women with DS babies tend to deliver early - averaging 37/38 weeks - which would put me around early Sept! A lot of this is due to various possibilities; health problems with a lot of babies, the extra chromosome can cause the placenta to deteriorate early, or excessive amniotic fluid which pushes everything out a bit early.

I do hope we get as far along as we can - the longer she’s in there, the more time to develop. 

I’m glad my emotions have come around full circle to excitement again - you feel guilty crying and being upset at the onset of the news, but everyone tells me, it’s normal and okay to “grieve” what you thought you would have. I can honestly say I’m excited for her to arrive and looking forward to growing our love. 

24 Weeks

The technician was sweet to give us 3D photos [shhh!]

She does not have a hole on her head! Simply the image not rendering completely.