11 Months Old!

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, 2017

“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.

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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.

Harper is 10 Months Old!

This past month has been a rollercoaster ride for Harper. We took Harper to our local ER on November 30th because she was having a hard time breathing. She was immediately transferred to the hospital where she would be having heart surgery. The doctors put her on hi-flow and we settled in for the night.

Early that Saturday morning, Harper woke up and started to get fussy, which led her to have a hard time breathing. She was so worked up that her left lung collapsed and her O2 sats were down in the teens. The doctor had to bag her a few times to keep air flowing. They ended up putting her on bi-pap which opened her lung back up and she became stable. The following week, Harper began developing random fevers throughout the day. The doctors ran different tests and everything came back negative/normal. Since we were already at the hospital, the doctors decided it was best if they tried to get her on the schedule for her open heart surgery. They thought it was pointless to send us home only for us to have to come back after the new year for surgery. The surgeon has a pretty busy schedule so it was only a matter of finding a day to squeeze Harper in.

On December 8th, Harper began running a fever of 106. For a 12-hour period of time, she never got below 104. By 5:00 that evening, Harper was restless and agitated from not getting any sleep and fighting a fever all day. She began to get worked up again and started to have a hard time breathing, therefore, the doctors decided it was best to intubate her.

Over the next couple of days, her fever broke and she seemed a lot calmer. The doctors were able to extubate her on Tuesday, the 11th, and put her on hi-flow. But of course, by that night, she began running a fever again and she started to get worked up so they had to put her on bi-pap. Moving into the weekend, the doctors were finally able to figure out a medicine regimen to keep her calm and she started to act like her normal self again.

Friday, December 14th, Harper’s team of doctors had a meeting to decide on a game plan. They concluded that since all of the labs and cultures are negative for infection, her fevers are central related because her body is under so much stress. They also decided that instead of doing open heart surgery, they are just going to do a heart catheter and plug the PDA and possibly the ASD. The doctors are hopeful that by doing the heart cath, it will keep Harper from undergoing open heart surgery because the rest of the holes should close up on their own.

The heart catheter is scheduled for tomorrow. If you would like to stay up-to-date, please follow Harper’s Facebook page.

As far as Harper’s weight, feeding schedule, and milestones, nothing has changed from last month. She has been getting IV fluids for the past 2.5 weeks and she hasn’t been able to see OT/PT a whole lot due to being intubated and being uncomfortable. Hopefully, when we get discharged from the hospital, we will be able to get back to our normal schedule.

 

Heart Surgery

This topic has been kept quiet for some time now. We haven’t talked about it because honestly, people can be overwhelming when such big news is shared. But since we have had time to soak it in and prepare ourselves, we are ready to tell everyone.

Harper will be having heart surgery.

Y’all those words are scary to hear. But we are excited. Seriously, we cannot wait! We met with one of the best pediatric cardiovascular heart surgeons in the country and he is very optimistic that fixing Harper’s heart will dramatically improve her quality of life.

Harper has 3 VSDs, 1 ASD, and a PDA.

VSD: Ventricular septal defect is a hole in the wall between the right and left ventricles of the heart.

  • A ventricular septal defect can allow newly oxygenated blood to flow from the left ventricle, where the pressures are higher, to the right ventricle, where the pressures are lower, and mix with unoxygenated blood. The mixed blood in the right ventricle flows back or recirculates into the lungs. This means that the right and left ventricles are working harder, pumping a greater volume of blood than they normally would.

ASD: Atrial Septal Defect is an abnormal opening in the dividing wall between the upper filling chambers of the heart (the atria).

  • In an atrial septal defect, there’s an opening in the wall (septum) between the atria. As a result, some oxygenated blood from the left atrium flows through the hole in the septum into the right atrium, where it mixes with oxygen-poor blood and increases the total amount of blood that flows toward the lungs.

PDA: Patent ductus arteriosus is a persistent opening between the two major blood vessels leading from the heart.

  • Normally the heart’s left side only pumps blood to the body, and the right side only pumps blood to the lungs. In a child with PDA, extra blood gets pumped from the body artery (aorta) into the lung (pulmonary) arteries. If the PDA is large, the extra blood being pumped into the lung arteries makes the heart and lungs work harder and the lungs can become congested.

Harper’s doctors originally thought that her heart would fix own its own. If her heart was not healed by the time she was a toddler, then we would consider heart surgery then. Well, Harper has been hospitalized three times in the past six weeks for a cold. While that might be very true, her doctors believe her heart is the reason behind it. As Harper gets bigger, her heart is trying to keep up, which means it has to pump harder. When Harper was about a month old, the doctors realized that she needed a medication (Lasix) to reduce the amount of fluid running through her heart. Back then she was taking 0.3 mLs – once a day. Now, she is at 0.5 mLs – three times a day, which is pretty big difference.

Harper’s heart surgery will be scheduled sometime after the first of the new year. Once we have the date, we will announce it on Harper’s Facebook page – so make sure you follow us there.

The cardiac surgeon will completely repair Harper’s heart. Harper will have open heart surgery and be placed on bypass. The surgery will take about 7-8 hours. Recovery time in the hospital will be about two weeks. The hospital that the surgery will take place at is an hour away from home, so the cardiac surgeon has asked us to stay in the same city for an additional two weeks that way we are close by just in case anything were to happen.

With that being said, Dillon and I have decided to start a Go Fund Me page to help out with medical, travel, and living expenses during that time. Dillon will be taking off a week of work during the time of surgery. When he returns to work, he will continue to make the hour drive to come to the hospital.

If you would like to make a donation, click here. Any amount is greatly appreciated and we thank you for your donation.

Between now and surgery day, Harper needs to stay healthy: no fevers, no viruses, no infections. Her heart needs to be as strong and as healthy as it can possibly be on surgery day.

Yes, we are terrified and scared for this day to come. But we are also excited and incredibly ready to see Harper grow after her big day.

9 Months Old!

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After being home for not even a week, Harper ended up running a fever. Read here to see last month’s post. We went to our local ER and then from there decided that we wanted to be transferred to another hospital. We have been in contact with this other hospital for a few months now and we wanted the doctors there to take a look at Harper in this type of condition. Harper and I had our very first ambulance ride together 😉 We only spent a few days in the hospital. All labs and viruses came back normal/negative. The doctors concluded that she never got over the previous cold.

We actually ended up back in the hospital on the day of her 9 month birthday. Harper ran another fever and was pretty congested. Of course, we were only in the hospital for a couple of days and all of her panels came back negative. Again, the doctors concluded that she is holding on to this cold. It is just that time of year.

Harper is still around the 10lb mark. Being sick for over a month doesn’t help with gaining weight. Her feeding amount is still the same and of course, she is still in the same size clothes. This past month, Harper has been holding her head at midline while sitting on her bottom a lot longer. She is eager to keep her head at midline to look at me. She gets very frustrated when she starts to get tired.

We always get asked if Harper sleeps through the night and the answer is no. When you’re in and out of the hospital, going to doctor appointments and seeing therapists, it is extremely hard to get her on a schedule. The longest she sleeps for in one setting is about 6 hours. If we’re lucky, it’s at night.

This past month, Harper has been enjoying her bottle a whole lot more. Right now, drinking from a bottle is just for fun. We do not include the amount she drinks into her calorie intake for the day. It usually takes her about 30 minutes to drink half an ounce. She is still trying to grasp the concept of suck, swallow, breathe. So usually she will suck, push milk to her cheeks, breath, swallow, breathe. Instead of suck, swallow, and then breathe…every single time. Harper also roots when the bottle touches her face, which is a big accomplishment. A few months ago, she wanted nothing to do with a bottle.

 

 

 

8 Months Old!

I cannot believe in four months Harper will be a year old! Not a lot has changed with Harper this past month. She’s right on the 10lb mark, in 0-3 month clothes and wears size 1 diapers. Harper is still obsessed with putting her fingers in her mouth. She still gets about 2.5 oz every 3 hours through her g tube. Harper has also figured out that when she cries, Mom and Dad will pat her bottom until she falls asleep.

A couple of weeks ago, Harper was admitted to the hospital for not breathing very well.  On a Friday morning, we noticed that she was really congested and she was having a hard time figuring out how to catch her breath. We gave her a little oxygen and that seemed to help. The rest of the day she was fine. The following morning, Saturday, she woke up really congested and we gave her some oxygen but she was still having a hard time catching her breath. We monitored her throughout the day. By that evening, her oxygen sats were sitting in the low 80s, so we decided to take her to the ER. After lab tests, x-rays and ultrasounds, the doctors concluded that her heart is starting to work harder as she gains weight. If you don’t remember, Harper has 3 VSDs, 1 ASD, and a PDA. When the heart starts to work harder, in Harper’s case, the fluid starts seeping through the holes and into her lungs. The doctors decided to increase her heart medication to keep as much fluid out of her lungs. We were finally discharged that following Friday.

( If you follow us on Facebook then you know we were admitted again a week later, but I will update the blog on her next monthly update 🙂 )

I highly suggest following us on Facebook or Instagram to find out what Harper will be on Halloween. Comment below and take a guess!

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Harper is 7 Months Old!

Harper still weighs a little under 10lbs. This past month has been pretty rough for her and for us, Mom and Dad. Harper began her nonstop crying spells. Of course, we went down the list of changing her diaper, rocking her, laying her in her bed, giving her a bath, wrapping her up, etc. After a couple of days, we switched up her feeding schedule to see if that would help and of course, it didn’t. About a week later, we finally contacted one of her doctors. They suggested that we increase her “stress medicine”. So we did. Usually, it takes about a week for it to make a difference. Nothing changed and Harper still continued to cry. We decided to see all of her doctors for a checkup and to see if anyone of them could figure out what was wrong. Her GI doctor suggested that we should change formulas and increase her reflux medicine. Of course, it takes about two weeks for the formula change to make a difference. But, can you take a guess what happened? Nothing. Nothing happened. Harper still cried. We went back to her GI doctor and Harper lost nearly half a pound, which is a big deal in her case. The doctor decided that we should completely change her reflux medicine to a different kind. We also contacted another doctor about the “stress medicine” and we decided to completely max Harper out on it. Within 48 hours my sweet, precious, little 7 month old began to smile and laugh again. She also gained half a pound back within a few days.

So what is life like now? Harper gets about 2.5 oz every 3 hours through her g tube. We’re seeing a speech therapist weekly and he feels very confident that she will take a bottle in the future. Bottle feeding and pacifiers were put on hold during Harper’s crying spell. Harper did not like messing with bottles and pacifiers when she was constantly crying and we would never force her to take either one. We want bottles and pacifiers to be a positive experience. Harper is still wearing 0-3 month clothes and wears size 1 diapers.

We also see some type of physical therapist at least once a week. Harper is working really hard to roll from her back to her side. She is also starting to lift her head up way more during tummy time. We also will put a rattle in her hand and she is holding that a lot longer. She is still obsessed with chomping down on one finger and I think she’s figured out that she can put one finger from each hand in her mouth. I have also noticed that when Harper hits one of the toys on her mobile in her bassinet, she realizes that she can make the toy move by hitting it, so she will hit it again, and the toy will move.

Harper also got her hearing aids this past month! She still isn’t used to noises and sounds. I usually try and put them on her a couple times throughout the day but after about 10 minutes she starts to get fussy. If you want to watch her really hearing for the first time, check out her Facebook page.

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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.