This time last year, Dillon and I were taking our maternity pictures. We finally shared with the world how our life was about to change:
January 15th, 2018
“Every good and perfect gift is from above.” James 1:17
At 12-weeks pregnant, Dillon and I received upsetting news that our baby girl has a high possibility of having Trisomy 18. When you google Trisomy 18, the first thing you will read is “incompatible with life” followed by, the statistics of babies that live with this genetic disorder. We began seeing a specialist and at our 20-week anatomy scan we saw things that we were hoping that we wouldn’t see. Our precious girl had large choroid plexus cysts, microcephaly, clenched hands, a possible VSD, hypoplastic left heart syndrome, and overall was measuring small – all common markers of Trisomy 18. We had two more ultrasounds after that, one at 24-weeks, and one at 27-weeks. By 27-weeks, she no longer had choroid plexus cysts, microcephaly, and we had a pediatric cardiologist look at her heart and she had no signs of a VSD or hypoplastic left heart syndrome. She also opened a few fingers, which is uncommon in Trisomy 18 babies. She looked perfect. We then decided that it was time to do an amniocentesis, which is a procedure that is used in prenatal diagnosis of chromosomal abnormalities. This diagnosis came back positive for Trisomy 18. Here we are now, at 35-weeks, and we cannot wait to see our baby girl. Every day we continue to pray that we will get to spend as many hours, days, months, and years with her as we possibly can. Please do not feel sorry for us, we are simply posting this so everyone will keep us in their thoughts and prayers.
Now, we are celebrating Harper’s 11 month birthday. In one month, she will be one. ONE! Something we never thought would happen. Only 10% of babies that are born alive that has Trisomy 18 live to be one. In one month, Harper will be a part of that 10%.
This past month, Harper got the heart surgery she finally needed-Christmas Eve Day to be exact. The whole month of December she was in the hospital for a number of reasons, read here for more information. Instead of waiting until the first of the year to do her heart surgery, Harper’s team of doctors realized she needed surgery sooner, rather than later. The surgeon was able to repair all of the holes in her heart! Shortly after being discharged, she was readmitted on New Year’s Day for seizure activity-the doctors put her on a small dose of seizure medicine that we hope we can take her off of in the near future. Now that we have Harper on all the right medicines, her heart is repaired, she has become a whole new baby. In a good way!
She’s gaining a healthy amount of weight, she’s almost 11 1/2 lbs! Harper is also about 23 inches long. We’re slowly increasing the volume of her feeds. Right now, she gets a little less than 3oz every three hours-day and night. She still gets fed through her g tube and the feeding pump feeds her over an hour and a half. We hope by summer, she will be able to tolerate her feeds over thirty minutes.
Since being home, we have resumed seeing her speech therapist. It’s still a working process for her to do the “suck, swallow, breath” technique. But she is doing so much better! We won’t start seeing her occupational therapist until after her birthday. She has to wait 6-8 weeks, from surgery, until she’s able to run and play with her friends 😉
Speaking of, Harper can now roll from her side to her back and her back to her side. Her head/neck is getting so much stronger. When I have her sitting on her bottom, she can hold her head up for 3-5 seconds. She’s also learned that she can keep herself from falling backward.
The best news (honestly, I’m afraid to talk about it because I know I will jinx it) is that Harper is finally getting a sleeping routine down. Depending on our plans for the day, she will either take one-4 hour nap or two-2 hour naps. For bedtime, she usually falls asleep around 1am and wakes up around 10/11am. If she does wake up in the middle of the night, its only for a few minutes. It’s hard to say, but I think her heart was doing double the work and she couldn’t get the proper amount of sleep beforehand. Harper also hardly ever cries anymore. If she does, its because she’s hot/cold, needs her diaper changed, wants to be held, or something is hurting her-like some of her teeth coming in! They haven’t popped through yet, but they are for sure coming in!
Next month we will be celebrating her first birthday. I will be sharing a lot of pictures from her big day, so don’t forget to follow her Facebook page.