Being at Home....

I was hesitant about updating our blog with the new information, but then I realized that with the power of prayer thus far, I truly believe Zoe has done extremely well and is in better condition than she was in utero.

She was discharged on Wednesday.  The happiest day thus far (besides her birth).  When I got to the hospital, unfortunately the many team of doctors couldn't agree on whether she should stay one more night for observation.  Zoe isn't gaining that much of a significant weight, but she's doing everything right.  Our nurse Lindsay rooted for us and said Zoe is ready for home, there's not much more they could do there at the hospital that we can't do here.  The pediatric nurse practitioner (works under our surgeon, Dr. Madonna) came to talk to me.  It was a ridiculous conversation as I thought she was a terrible liaison between the surgery team and us.  She made me think it was my decision if Zoe should stay or go.  Then she also said for us to expect an ER visit because we'll never know if and when she's in distress if its her heart or intestines.  I looked at her with big eyes and in my head was thinking, "and you are sending me home because????".  Then her next statement was but "Zoe is doing so good".  Long story short, in order for them to feel comfortable sending her home they wanted us to see our pediatrician on Friday for the 1 month check up and then again on Monday for a weight check.  If she didn't gain any weight by Monday, Mike and I will have to talk to a nutritionist at Children's.  So basically if she drops weight, the possibility of an NG tube will be discussed (feeding tube) or if she's maintaining the same weight and not gaining too much, just to add something to the formula to increase calories.

I felt like a kid in a candy store bringing Zoe in the house to meet her brother.  I got my camera ready for the BIG MEET!  As soon as I took Zoe out of the car seat, Zander went nuts.  Literally nuts. Slammed his head on the floor, ran around like a crazy man, screamed.  I passed Zoe to Nonni and he went quiet.  He's territorial over his mama. Everyone else can hold her, but not me.  Over the course of the night before bed time he threw is train at her (attempted), tried to step on her, yelled "GO" to her.  Needless to say, he wasn't happy with this new little person.   The NICU nurses trained Zoe well because we have to wake her up to feed at night.  We can't let her go any longer than 4 hours without food.  We just have to get up two times at night, its wonderful.  During the day she lets us know when she's hungry. I hope this continues!

Each day Zander has warmed up to her a bit more.  He doesn't like that his morning routine is disrupted with his sister since its usually just him and I until Mike wakes up.  But now since I have to feed Zoe while he's in his high chair there are plenty of fake cries coming from Zander.  However tonight, as I picked Zander up and headed over to Mike for him to kiss him goodnight.  Zander pointed to Zoe and leaned in and kissed her forehead.  Best.Moment.Ever.

So today's news....Our pediatrician did the full body check up and wants to do an ultrasound on Zoe's spine.  She has a tuft of hair above her butt and she says the top of her butt crack is in a "y" instead of a "v"...could be nothing or it could be that her spinal cord is not free flowing.  Looking at Zoe's rear end, I couldn't even see what she was talking about until she pointed it out.  My face went white when she said this to us.  I immediately asked if this could be a problem, wouldn't Children's doctors have caught this?  All she could say was that they probably didn't do an ultrasound because they were worried about everything else with her, but this is her standard of newborn checks when she sees this.  Of course I googled it and its a form of spina bifada (sp) (actually called occult spinal dysraphism).  Praying that its not and we can finally catch a break with all these diagnoses for the last 6 months.  She did mention that 50% of babies get this ultrasound and it turns into being nothing. She's only had one baby that had this and the doctors argued whether to do the surgery or not.  She did say with Latin descent babies, they tend to be hairy at birth--Zander was and it never came up.  So if the spine is not free flowing, she will need surgery.

All in all she's doing fantastic, it was just a little disheartening to hear that she could possibly have something else wrong with her.  So if you wouldn't mind some extra prayers, I'd appreciate it.  I do have faith that everything will be ok.  It just has to be.