Introduction to our life

“I don’t want this to define Livi, she is more than a diagnosis more than a stat. But I do want to encourage others, continue to build a community with others who have similar struggles and are searching the internet for familiarity and comfort.”

I want to preface by saying that I am not an expert in feeding tubes, any type of healthcare specialty, I am not a doctor; but I am a complex caring mom that has nursed my baby to life.

We are ready to tell the story of our precious little one, Livi Julianne. I am Michelle Hammons and I am married to my wonderful husband Josh. We met in 2011 and married in 2017 with a private ceremony in the U.S. Virgin Islands. Together we have two daughters Mia and Livi. Mia is 3 years and Livi is 7 months.

Since our daughter Livi was born my husband, Josh, has encouraged me to blog our journey, to share with others and connect with those having similar experiences/challenges. Over the next few updates we will catch up on our journey this far, a 7 month journey that has brought us so much joy, heartache, laughs, and tears.

To begin I will introduce our first born, Mia. With Mia everything was “normal”. I had a healthy pregnancy, after birth she nursed immediately and had no struggle with latch or suck/swallow coordination. She gained excellent weight, she met all of her milestones and is known to be very intelligent for her age. Mia has a curiosity for learning. She is currently in pre-K3 and we are touring different grade schools to see which one would best suit her with her curiosity and love of learning.

During my pregnancy with our second baby, Livi, it appeared to be a “normal” pregnancy. At my 20 week anatomy scan she did measure a little small. Both her head and her body were small but proportionate to one another, so there was not really a big concern by OB/GYN. He, OB/GYN, did want a third trimester ultrasound to "make sure there was enough fluid and check on baby." I was under the impression all was healthy and this was a routine evaluation. Fast forward from many weeks of heartburn and usual pregnancy symptoms, it was time for our third trimester ultrasound. She again was measuring a lot smaller... my OB/GYN said that it could just be the angle that the tech was able to get as my belly was larger and she was hard to get a view this day. "Livi does exactly what Livi wants to do", I have said this statement since the moment Livi came into this world. My OB was not alarmed, reassured me it was probably the angle, however, Josh did start to have a thought if something was going on inside that we really just didn’t know about yet. I completely blew him off - thinking that birthing a child with a disability or with complex care can never happened to me. Until it did.

On Monday Sept 12th around 4 o'clock AM I started to go into labor. Not entirely sure if it was Braxton Hicks or actual labor, I was 38 weeks, I held off until about 6 o’clock that morning. When what felt like contractions were getting stronger and closer, Josh and I decided to go into the hospital to check. Once we got there I was in active labor and dilated so they kept us, it was baby day! The entire day while we were connected to monitors every nurse that came in stated how wonderful the baby was doing. I was sure everything was fine, ready to meet our sweet one. After many hours of dilating I was finally at 10cm and it was time! After she was born, they quickly wrapped her up and they gave her to me and told me I could take a picture with her, and that they would take her away to be under an oxygen hood for four hours. They told me that she will be on oxygen for a little while, and if they needed to take her to the NICU that they would come and let me know. Clearly I was absolutely confused as I had what we considered a normal pregnancy, and had no idea anything was“wrong“.

The nurse did not want to alarm me, as she did not have answers at the time, but tried to assure me all would be fine. So it was time to eat a quick bite before my motherhood of two began, I was ready! The resident of the night came in to talk to me, I was still shaking from the birth experience as my body was still regaining strength. The resident told me she had three things to tell me the first and second statement she made I have no idea what she said, but the third statement was “ We believe your baby has Down syndrome."

I had barely laid eyes on my baby, much less held her for more than a few seconds of taking a picture. I became extremely emotional and upset and kept telling them I just needed to hold my baby. There were no other babies in the nursery at this time so I was able to be wheel chaired in. I watched them give her a bath and wash her beautiful brown hair, and put her back under the oxygen.

So what made them think that my baby had Down syndrome? When Livi was born she was very quiet, she was very low tone, and they said her facial features appeared to be similar to those of Down Syndrome. As a mother I didn’t see what they did. In my gut I didn’t feel it either, but we continued with genetic testing. They sent off blood work to basically confirm that she had down syndrome. It took a little bit of time to get this test back. In the meantime we were discharged from the hospital and we went home. Mia and Livi met, a beautiful meeting it was. We were holding each other up and were searching for hope and peace. During this time many people reached out to us that had down syndrome children, and told us of the absolute joy that she would bring to our life. We started to find comfort in this and were beginning to navigate and invest into the Down Syndrome community. Then the doctor called, Livi’s genetic testing was negative for Down Syndrome. One would think this would bring us joy, but it didn’t. It brought more confusion and fear. What was it going to be? What life was Livi going to live?

Over the next bit of time I will continue to share Livi's story, I want to be as detailed as possible. As we chart in unknown territories (this will be explained on our next update) if you would please share her journey as there are others among us that are fighting battles that haven't gone public, or won't. Someone may find comfort or familiarity within these blogs. This is our "why." Why we have decided to go public with Livi's story in hopes to help someone or connect with someone who is going through their own difficulties. In a very uncertain world, having a medically complex child can break you, make you feel even more uncertain. We believe Livi has a purpose, her story has only began and as we continue to open up and begin sharing our struggles, fears, and obstacles we want this to bring comfort to others. Some may not understand that our struggles and fears can bring someone else comfort? It will, when we get a new diagnoses or we notice another baby of similar age thriving as our baby is struggling it can bring heartache and questions. Every time I search the internet for a similar story, something or someone of similar lifestyle, as a complex care mom, to bring a little comfort to my broken heart. A little normalcy to our new uncertain and uncharted world.