It has taken me quite a while to build the courage to write this post. A lot of it has to deal with me accepting that my daughter has what they call, Goldenhar Syndrome.
I had a very uneventful and uncomplicated pregnancy. My pregnancy was great. I worked all the way up until I went into labor. My labor and delivery was quick. And before we knew it, Mackenzie Mai Nguyen was born on April 3, 2018 at 3:20AM weighing 6 lbs. 2 oz. and measuring 19 and 3/4 inches long.
Mackenzie AKA BigMac decided she wanted to come out in a way that no one will forget, especially me. She came out squeezing the umbilical cord that was wrapped around her neck 3 times – a triple nuchal. Dramatic, I know. After the cord was clamped and cut, she was handed to me. That’s when I knew we were in for a journey.
BigMac was missing her left ear and her lip was pulled towards her left side making her lips a little wider than normal. I can’t even begin to explain what was going through my head or how I was feeling. I was a ball of emotions. I mean, I had an uneventful and uncomplicated pregnancy. So, what went wrong?
I’m so thankful for my doctor and nurse who took care of us during my delivery. They knew exactly what to do and say to keep me from breaking down during what was suppose to be one of the most happiest moments in my life. Again, uneventful and uncomplicated pregnancy. So, what happened?
That morning, the pediatrician made a visit and reviewed her charts. She informed us that BigMac was doing well and nothing required immediate attention. Her plan was to put in referrals to be seen by specialists.
Now, how do we tell our family and friends? What do we say when they ask, “how’s mom and baby doing?” Because, honestly, I didn’t even know myself. All I asked was,”Why?”
We were discharged from the hospital after 2 days and BigMac had her weight check with her pediatrician the following day. On our first night at home, I noticed her breathing sounded irregular. It seemed like she was gasping and struggling to nurse or breathe. I expressed my concerns with the pediatrician and she placed a pulse ox on her toe. Her O2 sats were in the 80’s% (normal range is greater than 92%). She decided it was best for us to get BigMac transported to the hospital. She arranged for transportation and had BigMac directly admitted into Cook Children’s NICU, where we stayed for the next 3 weeks….
Let me start by telling you how AMAZING the doctors and nurses were at Cook Children’s in Fort Worth, Texas. The room were full of nurses and doctors. Questions were being asked. Orders were being made. And all I remember were the smiles and calmness that eased my mind and heart.
BigMac had an IV started on her forehead after a couple of unsuccessful attempts at her hand. =( She had many, many different procedures and tests done during our stay starting with multiple ultrasounds and x-rays of her head, spine, chest, and kidneys – which all came back normal. Thank goodness! My heart just lightened up a bit.
A bronchoscopy was done and confirmed she has mild laryngomalacia AKA a floppy larynx, creating partial blockage of her airway and noisy breathing. Laryngomalacia plus her widened mouth caused her to have feeding difficulties and led her to getting a nasogastric (NG) tube placed.
Other procedures include ECHO of her heart – normal, swallow study – no aspiration, and sleep study – mild to moderate sleep apnea.
Now that all of her tests are done, our next battle is getting her to feed. After a couple of weeks of trying to take the bottle with little success, we decided to move forward with having a G-Button placed. G-Button will allow her to get fed through a feeding tube directly into her stomach. It’s a surgical procedure that requires her to be put to sleep and intubated.
The intubation was tough – it gave her anesthesiologist a sweat! But in the end, everything went well! A few days later, we were discharged home!!! We will be able to continue to practice bottle feeding in the comfort of our home! Our NEW home [we’ll talk about this more in a later post].
In the upcoming months, we have many scheduled appointments with different specialists. There are still many hurdles in this journey, but we have faith that all will be well. We believe that God gave us Mackenzie for a reason. And we don’t doubt His plans. We have trust in Him.
I absolutely can’t thank the staff at Cook Children’s enough for all of their hard work in caring for our baby girl, while still making sure our stay each night was as comfortable and pleasant as possible.
I will continue to update as we find out new information and/or plans for our baby girl. Subscribe with your email –> [on the right side bar] to follow along with Mackenzie’s journey!
Feel free to leave comments, emails, and words of encouragement! They are always appreciated!