So you notice your perfect baby maybe has a delay. Maybe you knew this was possible throughout your pregnancy or maybe like me you felt it the day they were born, or maybe it came later in the weeks, months or even years that followed. I know for me this triggered hours and hours of googling sessions and there was very little information out there. Most were simply posts to reassure you that your baby was not delayed and how to relax. I found this very unhelpful and even more stressful. I didn't know where to start or who to even ask. Because of this I wanted to share the story of our road to diagnosis. Full disclosure before we hop in, V is currently 26 months and I still don't have a solid diagnosis but we do have a lot more answers than we used to. I also hope to share some things I learned along the way to possibly save others some stress later.
I'll start off by saying my third pregnancy was a little different. I had preeclampsia with each of my pregnancies so it was not totally unexpected. However with V I also has high fluid levels (polyhydramnios) and had to have tons of extra scans as a result. Never was I told this could mean anything in terms of delays for her. She was much quieter than my other kids in terms of movement, though I was also told this was due to her positioning. She was born by scheduled c-section at 37 weeks. Her initial apgar was good but at just a few minutes old she looked very purple to me. After checking her they decided to let me hold her for 5 minutes then take her to the NICU for a check just in case. I was taken to recovery and she went to the NICU. I was having a hard time managing my pain levels after surgery and didn't immediately worry much because my nurse was very experienced and seemed to think she was fine. I was then set up in my hospital room and not allowed to go see her until the following morning due to my surgery. My husband went to spend the night with her. After a night full of stress I was finally allowed to get out of bed. My husband came to get me and told me that twice during the night she had oxygen destats and they had placed her on a cpap. As you can imagine this did not help me stress levels in the least.
Almost 24 hours after she was born I was finally allowed to hold her. She was so perfect to look at but the tubes, monitors and lines were scary. She graduated from the cpap only to start destats again so she was placed on a cannula to maintain her oxygen levels. During this time I tried to breastfeed her but she seemed to be getting nothing and didn't have the same suction as a typical baby. I got my mom to bring my pump in so I could pump for her as much as I was able. Even bottles were tricky though she would often choke after only a small sip. Just as we were about to be discharged her bilirubin levels became elevated and we upped the length of our stay. At this point I was aware something was entirely different. She was a large baby, 8lbs 4oz, however she had very little interest in eating and had to be woken to eat. It was hard to keep her awake long enough to get a feed in her. Her whole little body felt like a ragdoll and it seemed like she just didn't think anything was worth the effort. She never cried and slept constantly.
A few days in my best friend came to see her. At this point I was living in that happy new mommy bubble even with the extra challenges. I saw her, I knew she was different. I remember being scared to hand her to my best friend. Not that she would love her less but that it would be a moment that would change everything. She took V from me ever so carefully. Looked over her little body, admiring her hair, cheeks, fingers and toes. She looked at me with the most wonderful look of just knowing on her face and told me she was absolutely perfect. In that moment I knew things were different but they were still beautiful and good.
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