This gofundme is to raise funds to help Sophia and Spencer with medical expences and hotel costs etc.
Ben was diagnosed with another UTI but was able to recover on his own without antibiotics...just probiotics! Go Ben! They still want to do another urine culture in case he still has a UTI but no fever. We opted out of another catheter and are taking sterile cups home for him to pee in since he pees on his potty all the time.
Sophia is still trying to boost her milk supply with supplements and lactation consultant home visits. Only pumping about 5 oz in a day when she needs at least 25 oz daily to feed Ben with just her milk. So we are still relying on donor milk and are very grateful for this. We had been noticing Ben has preferences on which mommy milk he likes best so now we are trying to sort that out.
Spencer has been hard at work with his business and doing construction on our house. Our dishwasher and fridge stopped working so we had to buy new appliances. Luckily, we have lots of friends who have been trading their electrical and plumbing skills for trade with Spencer's business. So we are out of a kitchen temporarily right now. Toaster oven meals are getting old. Except Trader Joes stuff bell peppers...amazing.
Ben now weighs 10 lbs 5 oz. We are getting closer to his next surgery date so we are being extra cautious about germs and keeping us all healthy. Thank you everyone for your well wishes!
Yesterday, we took Ben to the ER with 103.6 fever. They did a chest X-ray and ruled out pneumonia. The nurse failed to get enough urine to run a urine culture but his urinalysis came back clean so no UTI this time. They sent us home with Tylenol and to keep an eye on him. Sophia and Ben took a nap once they got home but Ben woke with 105.5 fever. We called the advice hotline and were encouraged to cool him down with a sponge bath and start Tylenol. This worked. He slept. We all slept. The fever cools down then slowly rises again until we give more medication.
We went to the pediatrician today and they want to run a bunch of tests (blood test, lumbar puncture) to rule out sepsis and meningitis. We opted out, deciding to monitor him at home for awhile longer in case it's just viral. We will take him back in if anything changes.
Sophia is working hard at keeping her milk supply going. Last Monday, she was only able to pump less than 2 oz all day. We are doing all sorts of supplements to boost supply and happily, it's working!
Spencer has been working his butt off juggling his business all day long and jumping into daddy mode when we need to change an ostomy bag, give Ben medication, hold Ben whole Sophia pumps etc.
This little man is giving us a run for it and we are barely hanging on for this ride. You are worth it little man!!
Mommy, daddy, Ben and grandma Eve have been all getting much better at ostomy bag changes. Ben doesn't cry like he used to and sometimes actually smiles at daddy's silly songs during. A few weeks ago, Ben was hospitalized with 104 degree fever and UTI from his bag leaking into his mucus fistula. He's better now and we are "looking forward" to his next surgery so we don't have to worry about that anymore.
Next surgery will be mid September. They will be separating his fistula and rerouting it to a brand new booty opening! He won't be using it till it heals tho. Roughly two months later, they will connect his intestines again.
We go to the doctors once a week to check his oxygen saturation levels. So far, he's been 100%. Once he falls below 90%, we will need to stop everything and schedule his first of two open heart surgeries. Hoping his heart holds out until his booty surgeries are done tho.
Because of his heart condition, we are still needing to fortify his breastmilk to increase his calories without increasing volume. It's like running a marathon just to eat. He will most likely stay lean and long verse chunking up. Sophia is working with a lactation consultant to build up her milk supply so one day Ben can drink just her milk. Until then, we have been relying on milk donations.
Ben is at a fun/challenging age of 2 months. He's become opinionated and harder to please. Compared to some babies tho, it's a cake walk. He's still pretty content and easy. Everything is just harder when you're tired. He has been smiling and just started giggling a bit. Best thing ever! He started peeing on his baby potty! Hoping this will make potty "training" easier.
Sophia and Spencer are doing well. Sophia is enjoying being a full time mommy and looking forward to the day where we can put the bottles away and Ben can just nurse. Spencer's business has taken off! We are glad he works just downstairs so he can run inside for all of Ben's milestones. We are so grateful for the continued support of our community. So many people have brought food, breast milk, baby items etc to us and it means so much! We are truly blessed to have so much support. It takes a village!
Thank you again to everyone who contributed financially to our little family. We have been able to afford lactation support, pay medical bills as well as have Ben and Sophia cared for by more holistic practitioners. We still have a long journey with many more hospital stays but we feel much more prepared now for the emotional and physical tolls.
Ben has recovered from surgery and has started nursing! We can see home in our future!
He will still need three more surgeries over the next 6 or so months to reconstruct his bottom, put his intestines back together, and his heart surgery. These will all require hospital stays and more recovery time. This means more hotel stays for mommy and daddy. We appreciate all the donations! Not only will it help cover Bens medical funds, it helps us to be able to stay close to our baby.