Monday, May 14, 2012

Love Will Take You

Everytime Stella cries, this runs through my head "Is she hungry, poopy, or too hot? Is her Chiari Malformation acting up and she has a headache? Is her Ventriculomegaly turning into hydrocephalus? Oh my gosh maybe it's really bad! I wish I had an MRI machine at home. Maybe her back is hurting and she has an infection on her repair site.She could have a UTI and I don't know about it and she's in pain. Maybe I will just drive her down to Childrens so they can see her" I feel her head, look at her eyes, examine every inch of her to see what the problem is. So far it seems its all just normal baby fussiness. We are having some breast feeding issues that we are working on (that I truly feel is the Chiari) but other then that she recovers fine from her spouts of crankiness.

Thankfully I have a very reassuring husband. Her doctors are also very reassuring and always give us all the signs to look for and their phone numbers and the "Feel free to call if you think there's a problem...." I still check on her every hour or so through the night. My body is so tuned to it that I perk right up and go into her room to lay my hand on her back. It usually startles her and she snorts and moves around. Then I sigh a breath of relief.

Sometimes when I get up to check on her, I think about Roman being a teenager and out with friends. I think about him driving around and being a typical teenager. I have pretty much resigned myself to the fact that the worry is never ending! My dad still reminds me to lock my front door at night when we are talking.

I am (slightly) into Twlight, Ok, I'll admit it I love the books and movies. I've been listening to the Breaking Dawn soundtrack a ton lately and there is a song I like and I love these lyrics from it.


If we never found this loveIf we never took that roadIf we hadn't had the heartWe wouldn't have this home


It just reminds me of Sam and I meeting. I think of all the long talks we had about our lives and I don't think we ever in a million years could of pictured of love & joy we would share, bringing these 3 perfectly beautiful and unique children into the world.

Monday, May 7, 2012

I wanted to write something tonight but didn't really know where to start. The other day I put a little update on facebook talking about the peace I've found lately with Stella having SB. When I went back and reread it, I was wondering "Do people think I say all this positive stuff just to look good and who acts like they've got it all together but really cracking at the seams?" I really like facebook because I have a lot of family and friends who I don't see often and it gives me and them a chance to see what's going on in each others lives. I sometimes think that if someone says something out loud enough, they start to believe it. The combination of facebook and being able to 'create' an image of your life for others is fascinating to me.

I truly believe the peace I've found is otherworldly. Meaning there is no way I could of done it on my own, without God helping me every inch of the way. I really don't want to sound like I have this perfect life with a perfect husband and perfect kids. I definitely have my moments where I am not the best version of my self. My husband and I fight sometimes. My kids can be naughty. I have felt at times so much guilt for my daughter having a birth defect that I fear one day she will blame me. I'm a work in progress, as I think we all are even until the end of our lives. I do know that prayer and faith and trusting in God can move mountains in anyones life.

I prayed throughout my csection and pleaded with God as Stella was in surgery. I told God that if my daughter came out of her surgery that I would recommit every once of myself to Him. Looking back I'm thinking, why would I only do that if He saved her? What if something would of gone wrong? Would I have turned my back? I'm slowly (after about 16 years of being a Christian) learning what prayer can do. Not just prayer, but an open dialogue with Jesus. Being able to see doors closed and accepting that sometimes the answer I want isn't the answer I'm gonna get.

So back to the facebook update I did. I wrote it because it's feels like a ton of bricks have been lifted off my chest. I refuse to let her SB rob us and her of being happy. I refuse to let the worry and stress and "What If...?" take away anything that's less then the best for her. Yes, I know there are going to be challenges, and tears, and lots of stress. It could come tomorrow or a year from now. All I can really trust is that my God is GOOD and FAITHFUL and handpicked our daughter for us.

One last thing, I honestly could feel the prayers of others while we were in the trenches. We didn't tell people what was going on for 2 weeks after our first ultrasound. We weren't even totally sure what was happening so we didn't want to give our false information. That was a really dark time for us. Once we finally opened up, we received such an outpouring of love from our friends and family and even strangers. Especially while Stella was being born and her hospital stay. Thanks again for lifting her up in prayer.

Tuesday, May 1, 2012

What Do I Do All Day?

I never imagined myself being a stay at home mom. Especially after almost 2 years of beauty school and quite the chunk of student loan debt. Once Roman was born, I just couldn't leave him. With how much I made as a hair stylist, it would be paying for daycare. Plus, I love being at home and Sam likes it to so it works perfect.

I have 3 kids, ages 4 and under. All 3 require the same basic needs. Food, clothing, shelter, a clean butt. And LOTS AND LOTS of love. Yet each one has different needs for their age.

Roman is 4. We spent a lot of time teaching him how the world works. Why things happen, how to approach different situations, and what is going on in the world. We work on his letters, numbers, and drawing. He just started reading a few words. He can do basic math and likes to draw. He is at the age where he questions everything and a response of "Because it does" doesn't work anymore and we really have to give him honest thoughtful answers.

Finn is 2. With him it's all about colors, animals, shapes, and letters. He enjoys picture books, where as Roman enjoys listening to a story. He needs help reaching things and putting toys away. He is forming so many thoughts and ideas at this age. It's fun watching him learn.

Stella is 3 months old. She needs constant diapers changes, feedings, being held, hanging out in the baby swing, or doing tummy time. She needs stimulation and lots of smiles and kisses. 

My days start between 5-6 in the morning. Stella wakes up and I'm so tired I bring her into our bed and nurse her while I lay there half asleep. By 7:30, Finn is awake and yelling "Get me out of my crib, Mama!" Then it's a huge battle because Sam tries to get him out and he cries and sometimes stays there till I come to get him. His yelling has awoken Roman. Me getting up wakes Stella up. Now it's 7:45 and everyone is up. Then it's diaper changes, breakfast time, taking the dog out, getting a load of laundry started. Thankfully Sam works a lot of nights so he's home to help with everything in the morning.

There is always always something to do. Someone needs a snack, help with a project, a time out or talking to,  loads of laundry and dishes. There is always a mess to clean up and a meal to be made. We like to take our kids everywhere so lot of our days are filled with grocery shopping, going to the mall, bank, doctor and dentist appointments. There is always an errand to run. Our day has to be put on hold around 1 when Finn goes down for a nap, right after lunch. Sam is gone most nights. It's a crazy crazy time at nighttime. Dinner at 5, followed by cleanup time, bath, teeth brushed, prayers, a book, getting boys tucked in with hugs and kisses and Stella all snuggled in her crib.

After that is my time. Well I'm still busy but everyones in bed so I can move freely :)  I catch up on laundry, and picking up the house. I try to get the house looking good so when Sam gets home it is nice and relaxing for him. By 11pm, I'm usually folding laundry and catching up on an episode of "Real Housewives"

It's SO much work but every minute is worth it. I don't have much of a social life. We both had that time, before babies, to get our crazies out. Sam and I are home bodies and prefer being at home.. We have a date tomorrow night to see Hunger Games. We go out maybe every 6 months. I think we have to force ourselves to take the time to go out and take a breather. Let's see if we can talk about things other then the kids!







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.


Saturday, December 31, 2011

Reflecting on our Year

I would of never thought when 2011 started that it would end up this way. We started talking about if we wanted to have another baby or be done. It seems like we talked about it everyday. Sam said he could go either way. I wanted another baby, but thought things might be easier if we were done. We had been having babies since we got married and now they were finally sleeping through the night and we were actually able to go on a vacation without them and they did great without us. We had a trip to New York that we were starting to plan. I had stopped nursing Finn in January so I was gaining some independence also.

He kind of left the decision up to me. The day we 100% decided he would be "fixed", we were driving home from Seattle and I was already a few weeks pregnant and didn't know it. I will admit it was hard at first. We were excited but a little shocked. Ok, A LOT shocked. I was so sick the entire summer. By time September came around I think things were finally settling in. Then, by the end of the month we learned that we were having a daughter. How exciting is that? We had about 24 hours between finding that out and then finding out something was "wrong".

The month of October was doctor appointments and ultrasounds every week. Paperwork, blood work, interviews with genetic counselors. I think I spent the entire month crying myself to sleep every night. By November we were SO informed and ready. The doctor appointments took a back seat to us enjoying our kids and starting to prepare for our daughter to be born.

December has been an emotional month now that our due date is getting closer. The nursery is painted, her clothes are in the closet. I am going in every 2 weeks for checkups and ultrasounds. I find myself crying more than I had been. I feel so stressed out every minute of the day. I try to run the scenario over and over again in my head of her being born and her and Sam leaving to go have her first surgery and me laying in a hospital bed in tears.

Ever since I became a mother I have become this crazy planner and organizer... almost obsessively. I have a million lists going. What to pack for the hospital, for the boys, what paperwork I need to fill out. Some insurance stuff I need to take care of. Laundry, dishes, errands, and appointments. Making sure his work schedule works around the things I need to do. Sam is on me everyday to slow down and relax. He has been great about stepping in and helping me whenever I need it but it's hard for me to give up control. I feel totally incapable of slowing down. On top of that I don't want the boys to see me crumble so I try to stay strong for them.

I spend so much of my free time doing research. I read everything I can about Spina Bifida, hydrocephalus, Chiari Malformation, club feet, bladder and bowel function and surgeries, latex allergies, ways to improve mobility. It's overwhelming at times but I like to know as much as possible.

So as we say goodbye to 2011 and welcome in 2012 I am trying with every ounce humanly possible that I can stay positive. This year our daughter will be born, Roman will start preschool, and lots of good things will happen. We will feel the lowest of the lows and highest of the highs. I am hoping to come out of this a stronger person and a better wife and mother.

Saturday, December 17, 2011

I thought I would write a quick update on whats going on before I forget it all! First of all, I "passed" my additional gestational diabetes test! Thank goodness. I went in for Ultrasound #7 yesterday morning. The baby was looking good! It was hard to see a lot because she is getting so big now she is taking up all the space! She is about 3 pounds right now. It's also hard to get a good look and see how clubbed her feet are because at this gestational age, babies are in there with their feet crossed at the ankles. The fluid is continuing to build up and her ventricle size measured 16mm. They were 14mm at our last appointment. This is a very gradual increase. Which is good because if there was a huge jump, that could be a reason to deliver early and she needs to stay in there as long as she can!

I also had an appointment with my Bellingham OB. She won't be involved with the delivery but I see her for my prenatal care. My blood pressure, baby heartbeat, and tummy size was all good. I go back on the 30th for another prenatal appointment and Ultrasound on January 5th.

My parents are in town for the weekend since our family and my brother and Erin won't be able to make it down for Christmas. We are going to see Santa today then doing our little "Christmas" festivities tonight.

Bobbi and I got Stellas room painted the other day. The color is so amazing! It's a bright lavender color then all the trim is white. It's looks great with the color of the wood floors and the white furniture that is in there. Now just making the transition for Finn to go into a toddler bed and for him to give Stella is crib. I'm kinda dreading this because he sleeps great in his crib and doesn't even try to get out of it. I'm thinking by time we are back from Seattle he will be ready. Sam and his friend Russell are going to eventually make bunk beds for the boys.

I hope everyone is enjoying the Christmas season! :)

Tuesday, December 6, 2011

Anymore surprises?

We are officially into our third trimester now. It's unreal how fast these last couple of months have gone. Next Friday I go in for another ultrasound (#7) to check on Stellas ventricle size. They are monitoring the fluid on her brain. Luckily, this ultrasound and the one 2 weeks after that are done at my doctors office in Bellingham. No more trips to Seattle until mid January to see our "team" down there and schedule our c-section.

Of course, more complications have rose up. My routine gestational diabetes test showed that I may be diabetic. When the nurse called, I really wasn't too upset. I have dealt with so much "bad" news and complications that I am just rolling with the punches. Yesterday I did another test. I fasted for almost 20 hours and had my blood drawn 4 times over a 3 hour period. I am hoping the doctor calls tomorrow with my results. I did a lot of research and feel like I do have many of the symptoms but a lot of the symptoms are common in a healthy pregnancy.

Everyday I still have my ups and downs. I have a horrible fear of going into premature labor. If I did go into labor early the doctors would try to stop it and if it didn't would be flown to Seattle, That's too crazy! I am trying to take it easy but I still have 2 little ones to care for a a house to take care of. I can't believe I worked until 37 weeks with Roman! I am so tired and sick all the time, I'm thankful I have the opportunity to rest throughout the day.

Stella is kicking all the time. I love every time I feel her move. I used to get annoyed with it with my past pregnancies, especially when I was ready to go to bed. This time, every time she moves it reminds me that she is alive and at least for now is safe in my tummy.

I finally went and saw the new Twilight movie. I am a pretty hardcore fan of the books and movies. No I didn't wait outside in line for hours to see the midnight showing, but just ask my husband.... He gets sick of me talking about it! And yes my first girl name was Bella but Sam shot that down fast! It was nice to get our for a couple hours with my best friend and just relax. I know people rag on Twilight but it really means something to me, deep down. And seeing Bellas love for her unborn baby despite the odds, reflect some of what I'm feeling. (Except I am not carrying a half human and half vampire kid :)

We are gonna paint Stellas nursery this week. She will probably do most of the painting while I sit and watch! I have 2 beautiful shades of purple picked out. I am going for a clean and simple look. White crib and bedding with purple accents like the wall color and rug.

Other than all of that, Sam and the boys are doing great. Roman can now write and spell his name. I almost cried the first time he did it. Since turning 4 he has changed so much. Finn is doing good too. His speech is incredible and he can speak full sentences.

Finn: "Roro look, it's Cat in the Hat!"

Roman: "No, I am busy playing DS."

Finn: "No Roro look!! It's Cat in the Hat book!!"

Roman: "Ohhh cool brother!"


I put a new hoodie on Finn the other day and Sam said "Hey Finn, cool hoodie!" Finn replied "My Grandma and Grandpa gave it to me!!"