18 Months Old!

This time last year it was so surreal that Harper was 6 months old. Our entire pregnancy we thought she would only live for a couple of days. But, we were finally at the halfway mark to her turning a year old. The thought of planning her first birthday was exciting, but it was also terrifying. Anything could happen in the next 6 months. I didn’t want to start planning something that could easily be ripped away from us.

Here we are, a year later. Harper is 18 months old! I no longer fear the future. In fact, I dread the future because my baby is no longer a baby and she’s becoming a toddler (insert bawling mom face).

Harper currently weighs about 14.5 lbs and she’s about 26 in long. Currently, she wears size 2 diapers and wears 3-6 month clothes, but, she’s almost out of room in her jammies so we will be switching to 9 months! She gets a little over 3oz of formula every 4 hours (morning and night) through her g tube. I’ve had a lot of people ask if that means we have to wake up to feed her and the answer is no. The feeding pump has an interval setting on it. Therefore, when we all go to bed, we can set her pump up to go off every 4 hours throughout the night. Being a special needs parent isn’t so bad after all 🙂

Yes, Harper is still fed through her g tube and yes she is getting fed formula. If you haven’t read – G tube & bottles – it explains a lot about why Harper is fed through her g tube. Currently, she tolerates a bottle in her mouth and might drink a couple of mLs. We have also tried out some different packaged blended foods but still haven’t found the right one. We have talked to her doctors and they are not in any rush to switch her from formula to “real food”. Fed is best, right? As long as she is gaining weight, that is all that matters.

If you didn’t know, my husband and I both work full-time. We have been blessed to have found an AMAZING home health nurse to watch Harper while we are at work. Our nurse feeds Harper, changes her diaper, plays with her, and works on physical and speech therapy. Harper adores her nurse and they have created a great bond together. Dillon and I have shown Harper’s nurse some different things to look out for and what Harper looks like in severe situations.

Harper can now pick her head up during tummy time and she can inch herself forward by using her legs and hips. She can roll from her tummy to her back and from side to side. She can’t quite get from her back to her tummy. I can carry her upright on my hip and she can hold her head up pretty well. Harper has also learned that she can touch and play with her feet! She is batting at toys and learning to grab things. Harper still sees an occupational and physical therapist twice a month.

Harper was on a 6-month streak for no hospitalizations or ER visits. Unfortunately, last month, Harper developed a fever and was not keeping anything down. She started throwing up what looked like coffee grinds, which means blood. We decided to take her to the ER to get checked out and to get some IV fluid. Luckily, we were sent home that day to ride a virus out. About a week later, she started feeling much better! We’re down to seeing her cardiologist every 4 months and general surgeon (to check her g tube site) every 6 months. All other doctors we see when needed! Harper is also on NO medication. Yes, you read that right, NO MEDICATION! We do, however, give her melatonin at night to help her (and us) get some sleep. Don’t tell Harper, but she’s been sleeping 8-10 hours straight at night! Harper also has 3 teeth in!

Harper still wears her hearing aids a couple of times throughout the day. Good news though, Harper’s right ear is slowly opening up! If you are new to Harper’s journey or didn’t know, Harper’s ear canals are really narrow and have been closed. As she grows, her ear canals should get wider and open up.

Harper is developing a laugh (besides the normal baby scream) and she is now ticklish! She loves to be upside down and loves to look at faces.

As I wrap up Harper’s update for over this past month, I’d like to answer one last question. What’s next?

We get asked that question all of the time. The only answer I know is, “Well, tonight we’re going to have dinner and hope to go to bed at a decent time.” Y’all, I don’t know what is next. I can’t tell you Harper’s future. Doctors’ can’t tell you Harper’s future. Medical books can’t tell you Harper’s future. All I know is what we are doing tonight, tomorrow, and maybe next week. We live life day by day and if something happens, we go with the flow.

If you want to see more of Harper, follow her on her Facebook Page or follow us on Instagram.

If you have any questions, please email me at thejohnstonsblog@yahoo.com

2 thoughts on “18 Months Old!

  1. thanks alot for sharing your story im 23 weeks pregnant trying to educate myself on trisomy 18 i got a positive result from my blood work, doctors seen signs on ultrasounds , fish results came back abnormal, and i still waiting on my final results from my amniocentesis. im trying my best to get all the information i can and preparing myself for whatever is next.


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