On Friday, March 27th, my sister gave birth to the most beautiful little baby boy. He was excited to snuggle up with mom right away and very alert! There had been a concern with one of his kidneys during pregnancy, but everything looked fine.
By Saturday, that started to change. Sammy wasn’t latching right and wasn’t getting enough milk. Later in the day, he started to get paler. His fingers and toes were a little purple, but everyone thought it was normal.
Late Saturday night, a nurse ran some tests and found that Sam wasn’t getting enough oxygen. They took him to the NICU to run further tests. At one point his oxygen levels were down in the 50-60% range, when a healthy newborn should be between 90-100%.
It was determined that he has TAPVR, a type of Congenital Heart Defect (CHD) which will require open heart surgery. He took a med flight to a nearby children’s hospital. Even though it’s nearby, the hospital is an hour away (with minimal traffic) from where my sister and her family live.
Back in December, my sister lost her job due to an accident at work and so money was already tight. She, her husband, and their 2-year old daughter live with the husband’s dad and grandma. They’re amazing and incredibly helpful, but Sammy’s medical condition will put more strain on a tight budget.
While Sammy is on MediCal, it is likely that everything connected with his care will not be covered. To add to that, having to leave Sammy at the hospital and take the long drive home is really upsetting for my sister’s family. The hospital has a few lodging options for families, but there is a waiting list and there are many deserving families on that list.
Families need to be together in rough times like this in order to help Sammy not feel alone. I know it would help immensely if my sister and her little family could stay closer to the children’s hospital or at the very least not have to worry about expenses for the drive back and forth every day.
If you can help at all – even a few dollars – to help my sister and her family out, I would so very much appreciate it – and I know she will too. You can donate via this GoFundMe page.
The following are updates from my sister’s facebook page:
9:45pm Pacific Time:
Heading home after spending a good portion of the night with my Sammy Jay. He looks awfully pale but he’s getting a good portion of formula to supplement while I’m not there and until my milk comes in. His oxygen in his limbs is still not ideal and was pretty stead at 70 ish percent.
The doctors said that if Sammy is able to get some oxygen and get those levels up and keep them up he may be able to come home for a week or two then go back in and have that surgery but they need to monitor him for the next couple of days to see whether there are any changes good or bad and we’ll get a better answer about if things are okay or not.
Leaving him there tonight is honestly the hardest thing I have ever done and it’s killing me. I know I can’t take care of him if I don’t take care of myself but leaving him is such a hard thought. I’m so grateful that it is something fixable rather than the tons of defects that are so horrible and devastating.
The hospital has a family housing area but the room is first come, first served so while we are on the list, it may be a few nights before we get a room but at least there is a chance we may be able to be within walking distance.
Thank you so much to everyone who has my Sammy Jay and my little family in your prayers and thoughts. I will never be able to explain the love and appreciation I have for each and every one of you.
At the very least I’ll be heading back to Oakland Children’s after about 9am pst to hopefully avoid too much commute traffic. I’ll try to keep everyone updated as we get through everything.
Two hours later:
I just called the NICU to check up on my little Super Sam. The nurse literally just got on shift but she said his vitals looked good, aside from the feet and hands not getting enough oxygen still and she noted that when he cries he’s started turning a little blue so they’re keeping a closer eye on him. One of the previous nurses took the IV out of his foot and they needed it for fluid management so they were in the process of trying to get a new IV in his foot. He was crying and screaming but it did me so much good to hear his little voice, even if it was him being upset. I know he is in good hands, but I wish he was able to be home, in my hands and the different hands of my family, healthy and happy.
With that news to ease my mind I’m going to try to get some sleep so I can drive out to Oakland tomorrow.
Please continue to keep him in your thoughts and prayers.
Just woke up and called over to the NICU. Sammy’s IVs came out so they’re concerned with him not getting the sugars from the IV. They were trying to feed him some formula but he needs to have the IVs put back in which is difficult for any baby but his veins are especially adept at hiding from needles. I’m concerned about him and if he has sugar but I know he’s in good hands and they’ll get him taken care of.
When you have a baby you never really know what to expect but I know Sammy is a fighter and I know he can and will get through this like a champ. It’s funny how someone so small can make your entire world (and perspective) change in such a short amount of time.
I plan on heading up there at about 10am. I’ll post another update when I get more info.