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Loxley Poet Berg
5/29/2017 Latest post:
Welcome to our CaringBridge site. Kristen has been asked about making one of these from countless friends, so I've undertaken it instead, as I will be able to update more frequently and in more detail. It seems straight forward enough. The link to our fundraising page #Love4Lox is on the page as well. The words of support have been overwhelming to say the least. We are very humbled. Much love to you all. (Loxley's brief story from his gofundme page below) -Ty
Note: things have changed slightly since our initial story. Fargo is no longer an option, not until after birth anyway. Kristen will be in Philadelphia indefinitely, until Loxley's birth, more or less on strict bedrest. One support person will also be required to be with her 24/7 while she is here. While we have a few family members who have volunteered a little of their time (for which we are endlessly grateful), I will be undertaking the vast majority of the next few months myself. I should be able to fly home for a brief time, perhaps only a couple of weeks, before I return to Philadelphia to stay as well, probably with our son, Stellan. As a result, for the vast majority of the summer, both Kristen and I will be away from our jobs and away from our home.
I’ve been asking myself many things over the last 5 days, but one thing rises over the rest. Why? Why is this happening? No answer comes.
Our ultrasound on Thursday, May 11 was supposed to be the day we found out if a little brother or sister was joining our 4-year-old son. A happy day. We found out that it is in fact a little boy, but we found out a few other things as well. Words like Spina Bifida, Arnold Chiari Malformation, Myelomeningocele, and Hydrocephalus echoed off the sides of our skulls. It was confusing. We were terrified.
We met with a Maternal Fetal Medicine specialist and he confirmed our worst fears. Our little boy, our superstar, has Spina Bifida. While the news isn’t what most would call ‘good’. There is hope.
We are one of the rare instances where both baby and Momma qualify for fetal surgery to repair the affected area of our little boy’s back. The surgery is invasive, and there are risks for both Kristen and our son, but the possible positive outcomes that our little boy could lead a relatively normal or even a mostly normal life outweigh the alternative.
This surgery is time sensitive and would take place at CHOP (The Children’s Hospital of Philadelphia), the leading facility for this type of surgery in the world. Kristen and I would be there for a consult within the week, for surgery, and for recovery and observation (up to 4 weeks), all of this in Philadelphia and away from our jobs, but even more difficult, away from our 4-year-old son, Stellan.
This surgery is just step 1. We would also be required to be in Fargo for the 3-4 weeks leading up to delivery, as well as for care afterwards. That could include more surgeries for the baby if needed, time in the NICU as the baby will be delivered preterm, and much more.
Our emotions have run the gamut over the last week, without a doubt the worst of our lives. This little boy has our hearts already. He is a part of us and deserves every chance made available to him. We could choose to look at this as a burden, or we could choose to look at this as an opportunity. So maybe the question isn’t why after all, but why not?
I don’t enjoy having to create this page. I don’t enjoy asking for money. But, this isn’t for me. This is for my family. This is for Kristen. This is for Stellan. And, most importantly, this is for our munchkin, little Loxley Poet Berg, who as you might notice from the ultrasound pictures above, is smiling at us all already. I’d be indebted to you all forever if you would find it in your hearts to help me give this little super hero a chance at a normal life.
The amount noted at the top of this page is an estimate from an overwhelmed father. I have no idea if it is right, too much, or too little. Whether you decide to donate or not, we appreciate your time and thoughts as we navigate this rocky and unknown road.