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 theĀ process of building our home! Stay tuned šŸ™‚

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 onĀ FacebookĀ 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 myĀ 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:Ā Julie Natalie Imagery

Will Harper Take a Bottle?

“Will Harper take a bottle?”

“When will she be able to start taking a bottle?”

“Why doesn’t she drink from a bottle?”

Harper was born with a tracheoesophageal fistula.Ā The first three days of her life she had a suction tube down her throat to keep her from swallowing her own spit or she would aspirate. She was given dextrose through an arterialĀ line that was placed in her belly button. On her fourth day of life, she had surgery to fix the fistula. During the surgery, the doctor noticedĀ tracheomalacia.Ā Her esophagusĀ was also only 3mm in diameter which is half the size of the average baby. The doctor also placed an NG tube so she could start getting milk.

They waited a week to do a swallow study to make sure the surgery was a success ( which it was šŸ™‚ ) A few days later the nurses began giving her small amounts of milk to see if she could handle it. After a week, she was able to tolerate full feedings of milk through her NG tube.

So, why can’t she drink from a bottle? Well, there’s a few things to consider…

1. For the first two weeks of her life she was not required to take a bottle, therefore, she never had the opportunity to learn the sucking motion with her lips. As of today, she won’t even suck on a pacifier.

2. TracheomalaciaĀ is a very serious deal. She could aspirate while feeding.

3. Her esophagus was only 3mm in diameter. The NG tube was 2mm in diameter.

Well, when will she be able to drink from a bottle?

During her G Tube surgery, the doctor dilatedĀ her esophagus to about 5mm in diameter, his ultimate goal is for her to be around 7-8mm. She had surgery on April 24th to do another dilation. The surgeon was able to get her esophagus to about 6-7mm. It is possible that she will need to have another dilation in the next couple of weeks to reach the goal of 8mm. Why is this necessary? The risk of aspiration goes down.

Harper will also begin to see a speech therapist to help her learn the sucking motion. That could take weeks, months, or even years.

So, to answer your question, we have no idea when Haper will take a bottle. She may never take a bottle. But what is important, the G Tube allows her to get all the milk she wants. I mean, look at those rolls in the pictures above šŸ™‚

 

Harper currently gets about 2oz of formula, over an hour, every three hours.

The Perfect Mother’s Day Gift for a Special Needs Mom

Mother’s Day is May 13th.

I have had a few people ask me if I am excited about this year being my first Mother’s Day. I count this as my second (I talk more about thatĀ here) but this is my first as a special needs Mom. Since I haven’t been a SN Mom for a long time, I decided to reach out to my SN Mom friends and asked what they would like for Mother’s Day.

The Mom Who Wants Sleep: Offer to watch her child for a few hours so she can get a nap in.

The Mom Who Wants To Be Pampered: Schedule her a day with a facial, massage, and mani/pedi.

The Mom Who Is Always Out: Give her a gift card to her favorite restaurantĀ or coffee shop so she can grab a bite to eat.

The Mom Who Wants A Clean House: Hire someone to go to her house and do some spring cleaning.

The Mom Who Wants A Date Night: For the hubbys, plan a romantic date night. Don’t forget to get a babysitter!

The Mom Who Wants Updated Photos: Book a day with a photographer to take pictures of her and her family.

The Mom Who Wants A Girls Day: Plan an afternoon for her and her girlfriends to visit a local winery.

The Mom Who Wants Jewelry: Give her a necklace or braceletĀ that has been personalized with her child’s name or birthday. Check outĀ Pink and Blue Co.

The Mom Who Wants To Be Recognized: Sometimes all a SN Mom wants is to be recognized that she is doing an amazing job.

Life Update: Harper

The first three weeks of Harper’s life were in the NICU. She had her TE fistula repaired at 4 days old andĀ had an NG tube placed. Harper was able to go home on March 9th. She went home with an NG tube, oxygen (1/4 of a liter), pulse ox and a feeding pump. We had aĀ checkup appointment on March 21st which ended with us being admitted to the hospital. Long story short, the doctor noticed Harper was having a hard time breathing. After x-rays, ultrasounds and a bunch of tests, the holes in her heart were allowing too much fluid to enter into her lungs. The cardiologists put her on medicine to reduce the amount of fluid flowing in her heart and she improved within 24 hours. They sent us home on March 29th.


 

Harper turned two months old on April 15th!

Harper had her g tube placed on April 12th and weĀ were sent home two days later. She no longer needs to be on oxygen but we do have a tank with us at all times just be safe. We still use the feeding pump as well as the pulse ox to monitor her oxygen saturation. Harper weighs a little over 7lbs and gets about 2oz of formula every 4 hours. She is still taking medicine for her heart as well as medicine to reduce reflux.

Harper is currently the oldest baby with Trisomy 18 to be seen at her hospital. Her doctors enjoy seeing her (as long as it is on good terms šŸ™‚ ) and they are very optimistic about her health!

 

 

Labor & Delivery

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There were a few reasons why we chose an induction day. (1) We specifically chose a day that my doctor would be on call at the hospital. My doctor knew our birth plan and what we wanted. (2) My doctor was nervous that if my water broke at home, Harper’s umbilical cord could slip out before her in the 40 minutes it would take to get to the hospital. (3) We wanted to monitor Harper’s heart rate closely during contractions.

We arrived at the hospital at 5:00am on February 15, 2018 (I was 39 weeks and 6 days pregnant). And believe me, I begged my doctor to let me come after the sun came up so I could sleep in šŸ™‚ After getting checked in and getting comfy in the hospital bed, they started the induction process by giving me some medicine so my body could start contracting. Over the next few hours, my lower back started to get uncomfortable but never really painful. Please note, during this time my wonderful, amazing husband thought it was the perfect time for him to go get a haircut across the street and a bite of lunch. By lunchtime, I didn’t progress a whole lot so my doctor wanted me up walking and moving around. Around 4:00pm I still wasn’t progressing like I was supposed to so they gave me a higher dosage of medicine. At this point, I still had moderate pain in my lower back and I could start to feel my belly contracting, but I could easily walk and talk through it. After hours of sitting, walking, talking, and laughing it was time to get serious. My doctor came into the room around 8:00pm and said it was time to break my water. We both agreed that I could get an epidural beforehand just in case we needed to do a c-section. She broke my water around 8:30pm. For the next 20 minutes, Harper’s heart rate would drop every time I would have a contraction. Around 9:00pm my doctor decided it was best to call a c-section. She was nervous that if Harper’s heart rate dropped again, it may not come back up. Within 5 minutes the OR team was in my room rolling me out. I did have enough time to hand a nurse my camera and to give Dillon a kiss. Over the next 20 minutes, it was a completeĀ whirlwind. When you have a c-section it is like getting a tooth pulled; you don’t feel the pain, but you do feel all of the tugging and pulling. Luckily, I had a good team of doctors and nurses that kept telling jokes and being funny to keep my mind busy from what was really going on.

Harper Abigale Johnston was born at 9:19pm, weighing 4lbs 11oz and was 17inches long. She had to be given oxygen immediatelyĀ because she couldn’t breathe on her own. After they were able to get her stabilized, a nurse brought her over to me for a few minutes and then she was taken straight to the NICU.

Harper was born with a TE fistula (her esophagus and trachea were connected together, so anytime she would swallow her saliva, she would aspirate), 3 VSDS & 1 ASD (holes in the heart), cysts in her brain, her left kidney wasn’t fully developed, clenched hands, and a mild case of rocker bottom feet. We did not do any type of genetic testing to confirm Trisomy 18 because her markers relate to the genetic disorder.

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Harper had her fistula repaired at 4 days old. She remained in the NICU for three weeks. She went home on March 9th, 2018.

 

Side Note: I recovered well from my c-section.

 

An Emotional Pregnancy

When we got the blood results back at 14 weeks that our precious baby was high risk for Trisomy 18 we were heartbroken. We just had a miscarriage five months ago and now this baby had a high chance of not making it. I constantly asked Dillon, “Why us? Why couldn’t we have a perfectly, normal baby?” But the thing is, we had a perfect baby. She was God’s perfect gift to us.

Our anatomy scan wasn’t until 20 weeks. For 6 weeks we thought that maybe this test was a fluke. What if we were the few out there that had a false positive. I searched on Google for hours, every day; “False Positives on Materni 21 Test”, “Positive Materni 21 Ending in Healthy Baby”, “Can The Materni 21 Test Be Wrong?”. You name it, I Googled it.

When we arrived at our anatomy scan we were nervous and scared. It took a little over an hour for the tech to get all of the pictures. When the doctor came in he didn’t have a good look on his face. We simply told him to not beat around the bush and just tell us. Our baby had a VSD, clenched hands, HLHS, microcephaly, rocker bottom feet, cysts on the brain and she was overall measuring small. He asked what our thoughts were about aborting and we told him there was no point in talking about it because it wasn’t an option. We asked him how long we would have with her and he said with babies like ours there is no estimated timeframe. Most Trisomy 18 babies usually do not make it to birth and if they do they might live up to a week. We weren’t sure how to feel after we left after that appointment. When were we going to have to say hello and goodbye to our daughter?

We had a follow-up appointment at 24 weeks and another one at 27 weeks. But things started changing at our 27 week appointment. Our doctor decided to have a pediatric cardiologist get a better look at our daughter’s heart. It took over an hour for both doctors to do the ultrasounds, our doctor looked at her overall organs and growth and the cardiologist did an in-depth ultrasound of her heart. When they were done they both shook their head. Again, we asked the doctors to not beat around the bush. They began to say that all of those things they previously found were no longer there. She didn’t have a VSD, the cysts were gone, her head and body were measuring on track, her heart looked normal, her feet looked fine, and her hands were opening. Um, our baby is normal? So the blood test was wrong? Our doctor wasn’t sure what to say and then asked if we would like to do an amniocentesis for an exact diagnosis. He was nervous that there could be something else wrong with our daughter and he just couldn’t see it.Ā We decided to do the amniocentesis for peace of mind and to truly know what we wereĀ dealing with.

It took a few days to get the results back. Those days felt like years. We constantly kept asking ourselves “What if she has this?” or “What if it’s positive or negative?”. I finally got a call from my doctor, the test was positive for Trisomy 18. At this point, Dillon and I finally accepted the fact that our daughter has Trisomy 18 and there was nothing we could do to fix it or change it.

I had one last ultrasound at 34 weeks to see if anything changed. Our daughter’s growth was below the 10th percentile. My AFI was also at 39 (AFI is the amniotic fluid index, the fluid that floats around the baby. A normal AFI ranges from 8-18.) which is why I looked like I was carrying twins. It was still confusing on why our daughter didn’t have any other markers. When you Google Trisomy 18 markers there’s a ton of markers! We then thought, “What if the amniocentesis is wrong?” I Googled many times “How accurate are amniocentesis?” Every answer I found always said, “100% accurate”. After a few days, I finally told myself, it is what it is. I was making myself miserable with Googling every little thing. I knew deep down that no matter what, we would have a for sure answer whenever she gets here.

I started to see my OB weekly to monitor our daughter and to make sure she still had a heartbeat. We also met with a chaplin to go over our birth plan. How do you write a birth plan for a baby that may or may not make it? Our birth plan included moderate interventions. We wanted her to get oxygen if she needed it but we didn’t want to intubate her, nor did we want to put her on any kind of long-term life support. We also had to go over what we wanted if she was stillborn, which included holding off on weight/height measurements because we would want to hold her until it was time to let her go.

For the next 6 weeks we waited. And then it was time to get induced…

 

Finding Out Harper’s Diagnosis

IMG_0353First, let me start from the beginning. It was June 5th, 2017. I was able to watch my husband get promoted from an E3 to an E4, it was a very exciting day. When I got home, I noticed that I hadn’t started yet. Dillon and I had been trying to get pregnant since our miscarriage in January. So, I took a pregnancy test and it was positive! I had the best promotion present for him. The following 6 weeks were hard. We lost our first baby at 10 weeks and we didn’t want to lose this one. All we needed to do was to get past the first trimester. And we did! At our second trimester appointment, we decided to it was best for us to get genetic testing done just to be on the safe side. But to be honest, I was ready to find out if we were having a boy or girl. We waited a week for the blood work to come back. On August 18th, we got a call that changed our entire world. I answered the phone and it was our nurse practitioner. She was sorry to say that my blood work came back high risk for Trisomy 18 or in other words, Edwards Syndrome. I’m thinking this whole time, “oh the baby will just have something like Down Syndrome, no big deal, we got this”. The nurse then said that most Trisomy 18 babies do not make it to birth. That is when I lost it. Before we hung up, I asked if she knew if it was a boy or girl. She said it was a girl. I knew it, I just knew it was a girl all along. I called Dillon immediately afterward and told him that this baby wouldn’t make it. He came straight home and we Googled for hours all about Trisomy 18.