Half a Year

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Harper is 6 months old!

She weighs about 10lbs and she is finally in 0-3 months clothing and size 1 diapers! We are now back to feeding her about 2oz every 3 hours. Since Harper isn’t a normal baby, it is very hard to determine how often we should increase the amount of formula she gets in a day. We have learned to be patient with her and allow her to tell us when we should increase the total volume. Originally, we would increase every 2 weeks, but then that led us to be admitted to the hospital because she wasn’t tolerating her feeds. Now, we will increase due to not gaining weight or if Harper shows signs of being hungry.

 We finally can answer the question, “when will Harper take a bottle?”, the answer is now! Harper has passed three swallow studies in the past couple of months and we are now seeing a speech therapist weekly, yes, weekly! We are so excited! Harper has finally learned how to suck on a pacifier and her fingers so now we are introducing the bottle. Of course, we don’t know how long it will take her to master the suck, swallow, breath technique which is what it takes in order to drink from a bottle.

Harper has also started to see an occupational and/or physical therapist weekly. She is very similar to a 2-month-old. Her favorite thing is to roll from her side to her back and she is trying really hard to roll from her tummy to her side. She still has a hard time lifting her head during tummy time and holding her own head when sitting on my lap or propped on up on my shoulder. Harper has been bringing both of her hands to midline and she still loves to shove both of her hands in her mouth 🙂

And the best news, Harper is getting her hearing device this week! Y’all, we have waited for this day for what seems like forever. Harper will finally be able to hear to her full potential. Don’t forget to follow her on Facebook to watch videos of her hearing for the first time.

I also wanted to include that this past month, Harper attended her first family reunion (my side) and met one of her Great-Great Grandmothers.

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Why We Chose Life (instead of abortion)

“I am finding markers relating to Trisomy 18. You may have an abortion since it is still early and I will respect whatever decision you choose.” That is what my doctor told us. Of course, we said no and went on with the pregnancy. Before you begin, I highly recommend reading our “An Emotional Pregnancy” blog post. It explains a lot about our pregnancy and Harper’s diagnosis.

I first want to say that this is not a debate of pro-life and pro-abortion. I just want to inform others out there on why abortion is an option and why we chose life.

Secondly, I haven’t been a Christian my whole life. There was a point in my life where I left God on the side of the street and walked away. Meeting my husband helped guide me to run to God, pick him up, and take him out for a really nice dinner because I owed him one 🙂 With that being said, this isn’t going to be a post about “What would Jesus do?” and quoting every verse from the Bible.

 When you are pregnant with a baby that has a life-threatening disorder, most, if not all, doctors will give you the option to have an abortion. I feel like there are two types of doctors out in the world when it comes to the topic of abortion. There are the sympathetic doctors who know that is can be a very stressful time for the mother and the baby, and there are the scientific doctors who “know” the baby is going to die and would rather not put their time and effort into the baby’s life. Most of the time scientific doctors will make the parents see another doctor during the pregnancy. Luckily, we had a sympathetic doctor. He didn’t want us to go through the pain and heartache of not knowing when our baby’s heart would stop beating. But if you read our “An Emotional Pregnancy” blog post, you would know that he only asked us twice and then he stopped and began to be optimistic about our pregnancy.

When the talk about abortion came up, we immediately said no. Our decision wasn’t based off of God, the Bible, family, friends, right or wrong. We knew the only way to give her a chance to fight was to give her a chance at life. So we chose life, and she is fighting.

We didn’t know what her outcome would be and we still don’t.

There are two important things that matter:

1. She is living.

2. She is fighting.

If you have any specific questions to ask us about this topic, please do not hesitate to comment below, or message us on Facebook or Instagram.

 

5 Months Old!

 

Harper weighs a little over 9lbs and she’s slowly growing out of her newborn clothes but 0-3 months are still a little too big. She can no longer fit into Pampers newborn diapers but she does fit into Seventh Generation and Honest newborn diapers. It is so funny how big of a difference different brands can make. Her feeding schedule just recently changed. At the beginning of the month, she was getting about 3oz every 4 hours. But a few days ago she was not tolerating any of her feeds and continuously kept spitting up. Her doctors thought it was best to admit her to the hospital to monitor her and get an IV going. Right now we are feeding her continuously. By feeding her continuously, it is allowing her stomach to digest at a slower pace. It would be like if you were told you had to eat 10 hamburgers in 10 minutes. You would be miserable and probably wouldn’t be able to digest all of them. But if you had the option to eat 10 hamburgers in 1 hour, that would give you time to eat slowly so your stomach could digest each one. So right now, Harper gets fed about 0.3ml of formula every minute – which is close to 19ml of formula every hour – or 460ml in a 24 hour period of time. We do not know how long she will have to be fed continuously. Her doctors do not know why this is happening. They ran every test and everything came back normal. Right now the only thing that is important is that she is tolerating her food and keeping everything down. We have follow-up appointments with her doctors over the next couple of weeks. We are home now and she is in a much better mood as I am typing this.

Speaking of better moods, her crying spells have pretty much stopped! That medicine we started giving her is working! We can now control her crying, either by changing her diaper, picking her up, rocking her, etc. So yes, she still cries, but not for 3-4 hours. Now she only cries for about 30 minutes if we cannot figure out why she is crying.

For her cognitive and physical development, she has figured out how to put her hands in her mouth. If her arm gets lazy and falls, she gets very aggravated and figures out a way to put her hand back in her mouth. Harper also started smiling! At first, she would just form her mouth into a smile, but now she smiles when you smile. If you would like to see her smiling, here is a video of her smiling! We have also started a daily and nightly routine for her and she is slowly starting to sleep longer through the night. Right now she is sleeping about 8 hours straight, yay!

This past month we saw Harper’s cardiologist and had a repeat ECO on her heart. The holes are slowly but surely closing. We are not discussing any type of surgery because right now Harper is doing fantastic since she is on a low dosage of heart medicine. Harper will be having a sedated ABR so we know exactly what type of hearing loss she has. The past three times we have tried to do this hearing test she has always been too awake so we decided the next one should be sedated so we can get a clear picture.

If you would like to stay up-to-date on what is happening with Harper, follow her Facebook Page.

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What They Don’t Tell You When You Become a NICU Mom

Before Harper was born, we were preparing for her to stay in the NICU for a while. (Check out our Labor & Delivery story to learn why Harper stayed in the NICU). About three months before she was born, we took a tour of the NICU and met a few doctors and nurses. They showed us the different NICU pods, as well as, a private room for Mom, Dad, and Baby to stay if we decided to do comfort care. During Harper’s stay in the NICU I learned and experienced a lot of different things that I didn’t prepare for.

Here are nine things that I learned:

  • You will be on the same wing with moms and babies.

After giving birth they rolled me to the postpartum wing where I spent four nights to recover. In the middle of the night, I would lay there and listen to all of the babies cry as their mothers tried to comfort them. When Dillon rolled me to the NICU wing, we would pass mothers holding their babies in their rooms with family and friends surrounding them. At one point, I made Dillon stop my wheelchair before entering the NICU because I needed a moment to cry.

Tip: Take headphones and find a soothing station on Pandora to listen to while you are trying to get some rest.

  • You may not get to hold your baby.

I didn’t get to hold Harper until she was nearly 24 hours old. Nurses and doctors were nervous to move her because she had an arterial line in her belly button. They let me hold her again before her surgery. After that, I didn’t get to hold her for eight days. Before she was born, I imagined holding her whenever I wanted to.

Tip: Bring books to read to your baby or quietly sing him or her a song. Dillon and I would sit in there and talk about different life experiences so she could hear our voices.

  • You may want family and friends to wait to come and visit.

    Our NICU had a policy that only two people could be next to the baby’s bedside. Dillon and I would take turns walking one of our family members back to go meet Harper. We would spend 20 or 30 minutes back there, while the other spouse waited in the waiting room with the rest of the family. Honestly, we both wanted to be back there together, bonding with our new baby. Also, our NICU only allowed 6 family members to see Harper the entire time she was in the NICU. Some family members were hurt because we didn’t pick them.

Tip: Have family and friends wait a couple of days to come and visit. That will allow you and your spouse to bond with your new baby and it will also give you time to learn about the rules and regulations of the NICU. During those first couple of days, Facetime and send pictures to family and friends.

  • You may have to leave the hospital without your baby.

    When it was time to pack up our belongings, I folded Harper’s going home outfit and put it in my bag. We got in the car and left without a baby in the car seat. When we got home, I walked into Harper’s nursery. I sat down in the glider, wishing she was in my arms so I could show her what her room looked like.

Tip: Find out if your NICU will allow you to decorate the baby’s bed and put clothes on him/her. I didn’t know this until week 2 of Harper being in the NICU. I was so excited to put pretty blankets on her bed and dress her up in clothes and bows.

  • You will make friends with other NICU parents.

    Dillon and I became friends with other parents who had babies in the NICU. We were so excited for each other when a baby got to go home.

Tip: Ask parents if they would like to go have lunch with you and your spouse. We did this with one of the couples and it was so nice to leave the NICU for a couple of hours.

  • You will learn medical terms that you didn’t know existed.

The first few days I thought the doctors and nurses were speaking a foreign language. By day five, I’m pretty sure I could pass the medical board exam. I’m kidding. But seriously, we learned a lot of medical terms. This is when talking with NICU parents come in handy because it took a while for our close friends and family to understand what we were talking about.

Tip: If you have no idea what a doctor or nurse is talking about, ask them questions and have them explain whatever it is. It took me a while to feel comfortable to ask questions because I wasn’t sure how or what to ask. When I finally started to understand what words and terms meant, I asked every question that came to my mind.

  • You will love and envy your baby’s nurses.

    All of Harper’s nurses were amazing. They were all very optimistic about her life knowing her diagnosis. When Harper was able to get milk through her NG tube, the nurse on duty that night waited until Dillon and I got there so I could give Harper milk for the very first time. I smiled from ear to ear when she handed me the syringe full of milk. There were also times when I envied the nurses. They were with Harper 24/7. If she cried in the middle of the night, I wasn’t there to be able to comfort her so a nurse would have to.

Tip: Buy a cheap recording device and record yourself singing a song or reading a book. When you are not there, ask a nurse to play the device when your baby starts to get fussy.

  • You will celebrate milestones that are not common.

    Harper was on different types of oxygen: intubated, CPAP, and high flow. Every time the doctors bumped her oxygen down and she maintained her saturations, we celebrated! When nurses removed her arterial line and IV lines, we celebrated! Dillon’s favorite milestone was when Harper graduated from the bed with the heat lamp and put into a regular bed.

Tip: Buy or make milestone tags. There are a few shops on ETSY and Facebook that make them for NICU and/or premature babies. Take pictures of all of those milestones! This is one thing I wish I would have done.

  • You will feel every emotion when your baby graduates.

Harper spent three weeks in the NICU. When she finally graduated and able to come home, Dillon and I were so excited. We were also sad to say goodbye to all of the amazing nurses that we created relationships with. The biggest emotion I wasn’t prepared for was being scared. Harper came home with a lot of eqipment. What if something stopped working or I forgot how to use it? What if she stopped breathing or her ng tube came out? At one point, Dillon told me to stop worrying and just enjoy the moment of her coming home.

Tip: Give your baby as many kisses and snuggle with them for however long you want because your baby is finally home.

Read our latests posts to see what has been going on with Harper:

Harper is 4 Months Old!

Three Months

Will Harper Take a Bottle?

Life Update: Harper

Disclaimer: This is my experience during Harper’s time in the NICU. Some or all of these may not apply to other NICU moms. My experience is also based off of the NICU Harper stayed at. All NICUs are different and follow different rules and regulations.

Harper is 4 Months Old!

She weighs about 8 1/2 lbs and wears newborn clothes and diapers. She still eats about 2 oz of formula every 3-4 hours through her g tube. A couple of weeks ago she had her third and final esophageal dilation! Her surgeon gave us a thumbs up to start bottle feeding, but of course, we still have to meet with a speech therapist. (There aren’t a lot of speech therapists/pathologist in our area so we are waiting our turn in line.) As far as her cognitive and physical development, when laying on her tummy she can turn her head from side to side and she smiled for the first time a couple of days ago 🙂 She is also noticing her hands and will bring them to her midline. She has been opening her hands a lot more too! When she is sitting on your lap she can bring her head to her midline for a couple of seconds. My favorite thing is watching her watch and follow me whenever I walk by or around her.

This past month has been pretty rough in the Johnston household. For the past 4 weeks, Harper has been crying a lot. You can tell in the pictures above that she does not look happy, because well, she isn’t. She cries about three-four times a day/night and it usually lasts for about 45 minutes-4 hours. There is only a handful of times when she is awake and in a decent mood. We have tried everything to help her; change her diaper, take her clothes off, swaddle her, rock her, put her in her bed, feed her, stop feeding her, “burp” her, try a pacifier, give her a bath, play music, sing, take her outside, drive her around, give her some Tylenol and/or gas drops, lay her on her tummy/side/back, give her a baby massage, we even saw a chiropractor, nothing works. One night she started crying at 8:00 and she was still crying at midnight so we took her to the ER to make sure there wasn’t something we were missing because of her diagnosis. All tests, ultrasounds, and x-rays came back normal so they sent us home.

Some doctors suggested she could be a colicky baby. But how do you determine that when she isn’t a “healthy”, “normal”, baby? Could she be teething? Most likely not because Trisomy 18 babies have a slow growth rate and that includes their teeth.

During this time of Harper crying, we contacted one of her doctors that see Trisomy 18 babies. She told us that she has seen a lot of Trisomy 18 babies that experience neurological pain but there is no rhyme or reason why. She suggested giving Harper a medication to help calm her down and relieve any stress that Harper may be having. We put this medication off for a while until we had tried everything possible because we didn’t like the idea of giving her more medicine than what she is already on. But, a few days ago we finally broke down and gave her the medicine. The medicine takes a couple of weeks to get in her system to make a difference.

This has been an extremely stressful and exhausting month for our family. It breaks our heart to see our daughter cry and there is nothing we can do. We also second guess ourselves on whether or not we are doing the right thing by giving her a medication that may or may not work. But, we do hope this medication will ease any pain or stress she might be having. I will update the blog on Harper’s next monthly update.

 

Good news is, Harper is still the cutest baby in the entire world 🙂

 

Dillon’s Career in the Army

For the past three years, Dillon has been a service member in the United States Army. His time as a soldier is coming to an end. He decided to get out early due to Harper’s medical needs. It is a bittersweet time; joining the Army was the best decision he made for himself and for our family, but we are both so excited for this new journey. Here is a recap of the past two and a half years.

In January 2015, Dillon and I made the decision that it was best for him to join the Army. On March 12, 2015, he swore into the United States Army.

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He left for basic training on August 24, 2015, and endured the physical and emotional challenges for 10 weeks at Fort Sill, OK. He graduated on November 6th, 2015

 

 The following day, Dillon went to Fort Sam Houston, TX to begin his 52 weeks of AIT as a 68K – Medical Laboratory Specialist. Luckily, I was able to join him. For the first 15 weeks, he lived in the barracks. I lived in an apartment a few miles away from post. His AIT was split up into two phases, Phase I and Phase II. Phase I consisted of book work, homework, tests, and a lot of studying. Dillon was finally able to move off post in February 2016. He graduated from Phase I on June 3rd, 2016.

 

For Phase II, Dillon had the option to go to Fort Lewis, WA for training, but he decided to stay at Fort Sam Houston. Phase II was a lot more relaxed, it focused more on hands-on training. During this time, he had to have a minor surgery on his shoulder in October. This set his graduation date back a couple of months. He graduated from Phase II on March 14th, 2017 and obtained an associates degree in Medical Laboratory Sciences.

 

His first and final duty station was at Fort Hood, Tx. We laugh all the time because we thought joining the Army would allow us to travel and live in different places, but we never left Texas 🙂 Dillon began working at the blood donor center on post. He was promoted to SPC on June 7th, 2017 and later became NCOIC of the mobile blood drives at the donor center.

Dillon recently accepted a job at a hospital nearby. He will continue working as a lab tech.

 

If you have any questions about military life or Dillon’s MOS, feel free to contact us!

Guest House Update #1

Y’all, we are landowners! I still cannot get over saying that 🙂

Over the next few years, we will be building on our 10-acre lot. There will be the main house, guest house, shop, and potentially a barn for animals. This week Dillon has started on the groundwork and framing for our guest house; we will live in the guest house while he is building our main house. Wait, Dillon is building both houses? Yes! I’m pretty lucky to have married such a handyman 😉 He actually built our first house when we lived close to his family. It was a 16×16 two-story shed that we converted into a tiny house.

The guest house will be about 700 square feet. Can you imagine a family of three and three dogs under 700 square feet? Yup, I am still imagining it too! Don’t worry, the guest house will consist of a bedroom, bathroom with a tub/shower combo and full washer/dryer, and an open-concept living room and kitchen.

Our style is craftsman-farmhouse. So if you’re good friends with Chip and Joanna, let them know we would love their help 😀 Here is a Pinterest board of our guest house:

Our color palette will consist of warm whites, greys, beiges, hickory brown stain, and bronze metal accents. I’m 75% sure that this will change because I can never have my mind set on one thing 🙂

Dillon hopes to have us moved in by the end of summer! If you have any organization tips for small house living, please let us know!

Starting Somewhere New

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When Dillon joined the military 2.5 years ago, we knew whenever he got out we wanted to buy land and settle down somewhere. His time in the military has come to an end and we are so excited! We have been stationed at Fort Hood for the past year and a half and we have grown to love the area. We have also created amazing relationships with Harper’s doctors and want to continue to see them as she grows older. With that being said, we have bought 10 acres in Central Texas. Our dream is finally coming true!

I will be updating the blog with the process of building our home! Stay tuned 🙂

Three Months

Harper is three months old! She loves sleeping, laying in her bed, taking baths, and sitting up (of course with some help). She doesn’t like her car seat or to be messed with. She is starting to roll over from her side to her back and move her head side to side when laying on her tummy. She weighs 8lbs and is 19 inches long. She still gets about 2oz of formula every 3 hours.

For the past 6 weeks, Harper has developed a symptom doctors refer to as retching. Throughout the day, she will start gagging/dry heaving but nothing will come up. We have tried many different options to see if we could prevent it from happening but nothing seems to help it. We will be meeting with different specialty doctors to see if they know a way to fix it or prevent it from happening. We have also learned that Harper cannot hear to her full potential due to her having small ear canals. Over the next couple of months, we will be meeting with an audiologist and ENT doctor to go over our options.

Follow Harper on Facebook for more updates!

Mother’s Day

On February 15th, I became this precious little girl’s momma.

The moments before her arrival, I cried. I was terrified to become her mother. I wanted her to stay in my belly forever because I knew that was the only place she was safe. I laid on the operating table not knowing what the next chapter in our life was going to be like. When she finally arrived, I didn’t know what to do. The first two days Dillon wheeled me to her room, I just watched her. I barely touched her and hardly talked to her. There were so many wires and tubes in and around her. A part of me didn’t want to believe she was mine. I know, how could I possibly think that. A wave of postpartum depression came and went. At four days old, Dillon and I had to make a tough decision to decide if she could handle the surgery to repair her fistula. The day after her surgery, the hospital discharged me. I left the hospital without my baby. For the next 2.5 weeks, I watched nurses take care of my baby. I didn’t get to change her first diaper or give her first bath. At night I would wake up every three hours to pump. Those were some of the hardest moments; sitting there in the dark, wishing my baby was in my arms. Before Harper came home, it took almost a week to learn how to take care of her. We learned how to feed her, tape her NG tube and cannula to her face, monitor her heart rate and oxygen saturation, fortify breastmilk, give her medicine, bathe her, and talked about what to do if “x,y, and z” happened. (To the moms who take their baby home in 48 hours after birth, I salute you.) In the past three months, I have sat in a waiting room three times hoping and praying my daughter would make it through surgery. I have watched her cry in pain when no doctor knew what to do.

Here we are on Mother’s Day and let me tell you, motherhood is hard but it is so worth it. I get to wake up next to the most precious, beautiful little girl in the world. She has taught me to appreciate life and to love unconditionally. Her strength shows me to never give up. I have become her voice and her advocate. I am so incredibly blessed that God put her in my life and made me her mother.

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photography: Julie Natalie Imagery