So my husband and I appear to be approaching this Spina Bifida diagnosis in two very different ways, which is typical of our personality styles… I am envisioning that Colten will be born, have a simple surgery to remove a cyst/sac, and we’ll go on with our lives. If it is anything more than that, we’ll just take things as they come. Richard is expecting the absolute worst-case scenario and figures if it’s anything less than that, then good for us! I’m assuming we should just meet in the middle.
However, I spoke to a wonderful, helpful and patient nurse yesterday at Sparrow and had so many questions answered (thanks Layna!). Unfortunately not all answers were what I wanted to hear. First, she had me adjust my “best case scenario” – that this isn’t just a simple removal and done situation – there will be more to it. My baseline best case scenario should include some level of dysfunction with bowel and bladder at the least. So that’s my new baseline.
Some of the most upsetting things from yesterday’s meeting…
- Parker & Max will not get to meet their new little brother until he is OUT of NICU and on his way home. This is hard for us, as it was so wonderful to have Parker come meet Max at the birth center within 30 minutes of being born. We just have a new normal with this little guy.
- Most likely, I won’t be able to breastfeed Colten until after his surgery. I can start pumping but he will be on glucose, water and electrolytes pre-surgery, possibly even antibiotics. Knowing how beneficial breastfeeding is, this tugs at my natural instincts and makes me cringe.
- No one can stay with Colten overnight or “room-in”, and only parents are allowed in the NICU (grandparents has yet to be confirmed). This should’ve been a “duh” thought, but what made it real was that I would be recovering from my own surgery and wouldn’t be able to be next to him 24/7, as I’ve done with both other kids.
Some of the more informational, useful or positive things from the meeting…
- Barring any other complications during the c-section, I should be allowed some skin-to-skin time with Colten prior to surgery. Surgery itself is NOT immediate, it will be within 1-2 days post-delivery. Much of that depends on his health and the medical team’s coordination of schedules.
- We have the perfect-timing opportunity to meet other families with children diagnosed with Spina Bifida THIS weekend at the annual picnic Sparrow has for their patients. Three generous families have agreed to come a bit early to meet us, let us meet their kids, and share their own experiences with us. I think the reality of these encounters will be extremely difficult for us, but so very valuable in both the short and long runs.
- If all goes well, the expected hospital stay for Colten will be 1-2 weeks. The entire time is spent in NICU, there is no downgrading to the pediatric unit. When he’s well enough to get out of NICU, he’s well enough to go home. In a way this is nice because then we’re in ONE place with the SAME team of nurses the entire time.
And finally, some of our realizations…
- We both have pretty good backgrounds to hopefully provide Colten with the best life we can. Richard’s degree, experiences and education in Kinesiology will give us a leg-up on any physical obstacles we need to work with Colten on. My educational background and degree in Special Education will come in handy as well. We certainly have so much to learn, and most of it will come in bits and pieces as we discover Colten’s abilities over the years, yet we have a strong foundation.
- Our current jobs provide us with extreme flexibility to be where we need to be for Colten and our other boys. Sure, NOT working will greatly impact our financial state, but being able to be flexible allows us to hopefully continue some work while providing the care needed to Colten and the upbringing needed by our other boys.
- We have a great family network and circle of friends. They are already coming forward offering to help tend to Parker & Max while we get Colten healthy enough to come home. This will be a huge relief for us. It will be hard enough to be away from them so much and feeling guilty about all the time given to Colten, but we need to make it work so we can have all three little boys together in the end.
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