Saturday, April 28, 2012

It's been a long 3 months!

I've been thinking about updating our blog for months but just put in on the backburner. Our lives are pretty busy these days. I thought I would write about the last few months.

As most people know, Stella was born Feb 6th (my birthday!) at UW in Seattle. About an hour after birth, her and Sam went to Childrens Hospital. She had surgery the next morning to repair the hole in her back. She spent 48 hours in the NICU, then after that 9 days in a medical recovery room. When we were discharged she was healing nicely from her surgery and was still shunt free. We went back every 2 weeks for MRIs to check on her fluid to make sure her ventricles were not building up. Every time we would talk with the doctors it was the same results. Fluid was building up a bit but her body was naturally reabsorbing some of it. At her last appointment with her neurosurgeon he felt comfortable waiting till July for another MRI. Things can always change and we watch daily for signs of too much fluid.

Stella has started an in-home occupational therapy program. The therapist is the nicest lady ever! She comes every 2 weeks to see how Stella is developing and shows us little stretches and things to do with her to help her mobility. At this point, with her being so young we don't know how mobile she will be. She will definitely need braces on her feet. Due to low muscle tone and her breech position she had major hyper extension when she was born. You wouldn't be able to tell now with her legs but her feet still want to push up. I know we will help encourage her and do whatever we can to help her meet all her milestones.

Along with her Spina Bifida, Stella has something called Chiari Malformation II. It is when the brain in being pulled back at the stem, That's probably the simplest definition. You can google it but it just sounds scary.  It can cause no problems or can cause lots of feeding, swallowing, breathing problems. At this point we aren't noticing it affecting her. The doctors and nurses were so happy she left the hospital breastfeeding, as lots of babies have latch issues.

There are lots of different medical issues that arise when someone is born with Spina Bifida. Way down the road, years from now, she will have surgeries to help her gain control of her bladder and bowels. Some things are so far from now but I find myself worrying about them. Me, worry? Yes! About MOST everything...

People ask me all the time how she is doing. Medically, she is pretty healthy.. Actually she is very healthy. At this point we do tummy time and stretches with her. We cath her once a day. She eats and sleeps great. It's the unknown that is scary. I have days were I hardly think about her SB, then I have days where I stress over it. I'm slowly learning to cast my fears, but easier said then done.

Oh yeah... the boys!!! They are doing great. They are so in love with Stella. She fits right in. Roman is 4 1/2 and such a little daddy! He helps out around the house and is so funny. We've decided to home school him for preschool. It was a big decision but it feels right. That kid is so loving and caring. Finn is almost 2 1/2. He is a little ham! He is at that stubborn 2 year old stage. He is demanding and hardheaded. I try to keep a big smile on my face when dealing with the attitude. He speaks full sentences and is a super smart kid. I'm so proud of them and love each day I get with them.

Sam and I are in a great place in our lives. We've been together 7 1/2 years and I love him more today then ever before. He is the most loyal, moral, hard working man. He makes us his #1 priority. He is a very trustworthy person and a great partner, helping raise these 3 kids. I never have to doubt or question his love.

I was looking over medical statements the other day. My prenatal care ( including 10 ultrasounds, 2 amnios, and countless apointments), csection surgery, and Stellas hour at UW in thier NICU cost about $50,000. Thank goodness for insurance!! That doesn't include her 11 days at Childrens, major spinal surgery, or multiple MRIs. Also, monthly cath supplies, PT, OT, and regular well baby checkups.

We are starting to have breaks from all our Childrens Hospital appointments. We go in May for a big appointment with Urology. They do tests to see how her bladder is funtioning. Then after that, another MRI and appointment with her Neurosurgeon in July. That man is like a rockstar and hard to get into. I look at  him, and a large team of doctors and nurses, and really thank them for saving our daughters life. In August we see her PT and neurodevelopmental pediatrician who also is an amazing doctor.

Other then all that, life is pretty good! We are settled into our regular routine. We live on a beautiful piece of property and have lots of plans this summer for outside projects. Our kids are growing so fast we try to savor these days when they are so young. I promise to keep this thing updated. It's a nice outlet for me and keeps our loved ones up to date.

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