Tuesday, December 30, 2014

Our newest minion. Meet Shirley.

Behaving just long enough to take the picture. Chaos ensued. 

This picture from the last OB appt before Shirley was born. Yes, all 5 had to go with me. Finding a sitter is not as easy during the day. There is no way I will pay $50+ to send 5 to a daycare for 2 hours. Nope. Not happening.

As you can see, Shirley was born pink. A few hours after the Csection (interesting one) we went to our room. The Pedi came to do the newborn screening as we were calling Aunt Julie to bring the minions to the hospital. The kids literally made it to the parking lot when the nurse came in and told us that she needed us to wait. The Dr. needed to talk to us. Shirley would need to stay in the nursery.

The Dr. detected a heart murmur. She felt because nothing was detected on any ultrasound that it was most likely a PDA. I can handle a PDA. Clark had one when he was born. They gave him some medicine and it helped it close. Not a huge deal. Still, our hospital did not have the equipment needed to do further testing. The decision was made that she would be taken to the closest NICU. It was an hour away and happened to be the one Clark was in. The only hitch was, I had just had a Csection with a tubal ligation. They do NOT bring the mother with the baby.  So I remained and started begging my OB to release me so I could be with my daughter.
Shirley getting ready to leave with the transport unit.

I sent The Elder to be with her. Pa took him for support. The nurse with the transport unit felt it was more than a PDA. So they left with Shirley and my OB came back in to talk to me. She was really nice and made a deal with me. This was far from my first Csection. I already knew what not to do and danger signs. So, as long as I could pee enough on my own, as long as I could keep down food, and as long as I could make a full lap around the halls, she would release me the next day.

Testing was finished at about 10pm. The Elder had the Pediatric Cardiologist call me. Sadly, I had the beginnings of a spinal headache. I could barely follow what was going on. The Elder opted to come back to me that night (I told him to stay there with our daughter).

Dr. Chris drew this for me

This is what came back with The Elder. Dr. Chris (Shirley's Pediatric Cardiologist) had been nice enough to draw this picture for me. By this time, it was about 11:30pm. My nurse had made arrangements for the anesthesiologist to see me first thing in the morning to see about a blood patch. I was warned that they may not release me even though I was doing what they asked of me. Mainly because while I could do it all, it was clearly a struggle due to the pain in my head.

Shirley has Tetralogy of Fallot. There is a hole between her ventricles. In addition to that, the valve where the blood goes from the heart to the lungs is tight. It moves enough to let some blood through, but not enough for her to have 100% oxygen saturation. She was hanging out between 75-85%. This is why her nose was a purple color.

Shirley in NICU
My OB did end up releasing me about 30 hours after my Csection. She pretty much asked me was I sure. She knew I was struggling to do things, but she was my OB with Clara (Glow Stick). She knew how stubborn I can be. I was sure and I was released to go be with the youngest Minion.

I know she was the easiest baby in all of NICU. Walking into the nursery she was in (#11. Not a small NICU) brought back memories of Clark's 73 day stay. By then Shirley was keeping her oxygen saturation at around 89%. Her stay was extremely short. She only needed to stay for 3 days. She is on medicine to help the valve move. We have weekly visits to check her saturation levels (steady at 85-89%).

Thinking about stuff and things. 3 weeks old.

What does this all mean for us? We are lucky and we know it. We cannot let her cry a lot or she could turn blue. We have a baby that turns a dusky purple at times. LOTS of hand washing and sanitizer in the house. If she gets ill, we have to take her to be seen right away. Meds every 6 hours and she will have surgery between 3-6 months of age. They will replace the valve and repair the hole in her heart. She may never be able to do most sports, but that is ok. We will just have to wait and see how that goes. At some point she will need another surgery before she is an adult.

The goal now is for her to grow as big as she can before surgery. Either way, it needs to be done before she becomes  active. Shirley is now a month old and doing well. :-)
The Minions

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