We first found out we were pregnant with Claire in April of 2020. She was an IVF baby and she was the last round our Clinic did before closing due to Covid-19. We were overjoyed to find out we were pregnant. We had a little bit of a bumpy experience as we found out at our first anatomy scan that she had a heart defect of tetralogy of fallot. We found out later on that Claire had an unrelated complication with her umbilical cord so we were hospitalized for monitoring the last month of the pregnancy in preparation for her likely needing to be born early. This put a whole new spin on ur plans but we prepared for her arrival from the hospital under great care.
Time passed slowly at the beginning and then was quick at the end because we knew she was coming early. We spent our last month in the hospital with friends getting our nursery ready. Mom was grateful for this time in the end because my only focus was on Claire for the last month of the pregnancy.
Claire weighed was born at 34 weeks and 4 days. She weighed 3lb 6oz. We stayed in the NICU for 8 weeks after her arrival. Most of this time was in the Progressive part of the NICU.
The hardest day was the day she transferred from the NICU to the Progressive Unit. She had been doing well and passing big milestones with getting off oxygen, getting her IVs out etc. Upon transfer we had to wait for them to get her settled to go back to see her. When we got there they noticed her blood sugar had dropped and they were recommending a feeding tube. We learned very quickly that Claire needed to do things on her own time and any sudden changes like coming off the IV medication too quickly did not mesh well with her. It was scary coming from doing so well to a new environment with now added stresses with more tubes being added back.
Claire required a feeding tube in order to come home as it was initially assumed she wasn’t able to eat enough due to her heart defect. She just got too tired. We chose to be trained to use an NG tube (through her nose) instead of one surgically inserted because it was thought after she had her heart surgery at 5 months old she would no longer need the tube. This was however not the case as she developed a feeding and bottle aversion in the process. The feeding tube was then eventually changed to a g-tube in her stomach at 7 months of age. After much research, many specialists and therapy we were able to finally put the right team of people together to help her wean off of it at 14 months old and then get the g-tube out at 18 months.
Claire started with Occupational Therapy and Speech therapy in the NICU in the first couple of days of her life. Since she was early and had a heart condition that would need surgery we knew she would have a couple road humps along the way in meeting her milestones.
Occupational Therapy gave us a good foundation to help give us tools to make sure she had skin to skin time, extra proprioceptive and sensory input that she missed out on by coming early. Speech therapy helped us make sure she had a safe swallow and that we progressed her feeding appropriately. She started physical therapy about a month after we brought her home which lasted for almost a year. This helped keep her on track with meeting her developmental physical milestones and allowed us to modify things for the time during her heart surgery restrictions. Speech therapy and again occupational therapy helped transition from the bottle to solid foods and ultimately helped us find the right team of therapists out of state for her tube wean. Being able to become free from the feeding tube had the most impact on our family being able to do “normal” things and not being bound to supplies, tubes, time restraints, very strict schedules and only mom and dad being trained to be able to care for her.
Both our physical therapist and our social worker through Child Developmental Services told us about Bee Mighty. Since we were paying out of pocket for her Physical therapy and then ultimately her Speech therapy this allowed us to chose the right therapists for Claire. With her complex feeding needs there is a very narrow network who truly specialize in feeding tube weaning. This was a great support for us that allowed us to focus our time on Claire without being stressed about the financial restraints.
Claire is a typical almost two year old. She eats and drinks normally. She goes to preschool three mornings a week. Looking at her now you would never know all she has been through. She has always been the happiest baby and now little girl. Through everything she went through she did it with a smile. She loves swimming, playing outside, reading books, and celebrating all the joys in life.
The first year of Claire’s life was not “typical”. There were only a very small number of people who had any clue what we were going through or how to truly support us. Lean on the community of people who have been through this. The other big thing is to trust your gut, trust your baby and be an advocate for your baby. We had many great healthcare professionals along the way but ultimately we had to get second and third opinions for Claire to reach her full potential with her feeding.