Today was the first of many appointments at Childrens this month. We didn't have our first appointment till 11 so it was nice to not have to wake up pretty much in the middle of the night to be there early. We got up at our normal times and ate breakfast then were on the road by 8. Our first appt was a PT assessment. Stella has a PT who comes to our house every 2 weeks to work with her but this is more of an assessment of her muscles. Thankfully she was awake and happy most of the time. She showed the therapist her rolling and sitting and grabbing at objects. I'm always a little sad when she is tickling her feet and ankles and there is no reflex or movement. She can move her big toe and feet but not on a reactionary level. A lot of times when we are out, people come tickle her feet. I think it's just something people do to babies. Her big grin and giggles always distract people from the fact that she has no feeling. Her sensation starts about mid-calf. When I see other babies her age, unfortunately, I compare their feet to hers. Hers are precious and tiny and I kiss them daily, but obviously they do not move like a "typical" baby,

Anyways, the therapist thought she was doing really well. Her hips are showing more movement and are much less tight then when she was born. She thought her tracking, head control, and strength were good.

After this appointment, we took a little break and then went to see Dr. Walker. He is her neurodevelopmental pediatrician. Before he came in, we talked to a 'fellow', who answered my many questions. I brought a list! I read so much online but when we get to actually speak to a professional, I like to get their opinion. We talked a lot about her latex allergy. Did you know Koosh balls have latex? No Koosh balls for this baby. No balloons either. That one will be harder as she gets older but her big brothers are learning they can't have them.

So.... to the shunt. Her head is measuring off the charts. She is doing so well but it's hard to ignore the fact that her head circumference is getting bigger and bigger. So she will have a shunt placed. It is a great invention for people who need them but can be a hassle and have known to malfunction, get infected, and require revisions. It is considered brain surgery. She will have 2-3 nights in the hospital.

I know this is good for her because the extra fluid needs to go somewhere. The doctor really wanted me to know how intense her head will look when its done. She will have a horseshoe shaped scar that once she grows hair, will be unnoticeable. She will also have a small incision in her tummy, where the catheter will be inserted, It runs from the valve in the brain, all the way down to her tummy, where the excess fluid is drained and reabsorbed.. Everything is internal. Once she is healed and with a head of hair, you wouldn't even know it was there.

I'm pretty numb tonight, Stella is my everything. My logical part of my brain knows she will do great but my mommy, emotional side is hurting. She can't nurse for 6 hours leading up to her surgery. I'm praying that she does ok with that. I love her so much and just have to pray, pray, pray for this to all be ok.

Her doctor was really happy with how her back scar is healing. Now that she is getting bigger, it's looking so much smaller. He showed me where to feel her spine where her defect is. You can actually feel the separation of bone. We do massage therapy with her but I try to avoid that area. In about 2 months she will get her first set of AFO's (braces) to help with weight bearing.

In this next few days we will find out more of the game plan. They may want a current CT or MRI before surgery. We have an appointment already set up for Wednesday. So we are waiting to see if they want to do surgery then or wait a week.

Prayer Requests:

1. That Stella does well under anastheia, comes through the surgery with flying colors, and heals quickly.

2. That she does not encounter an infection or malfunction. Many things can fail on the shunt and extra revisions can cause a delay in healing,

3. That Sam and I can emotionally get though this surgery. That we can be strong watching her being wheeled off into surgery. Also, that the boys do ok during this and don't get lost in the stress.

4. That Sams work schedule can work around this and any shifts he cannot work will be filled.

PHOTO BOMBBBBB!!!

These are some pictures from the last couple weeks. Some I already posted on FB. These kids are just so happy and smiley. Always a good photo op! We took a couple days and went down to my parents house then drove out to Long Beach for a day. Boys played in the ocean and Stella nursed and slept in my arms. We spent another day at Lake Whatcom. Most of our summer days are spent at home, playing outside. The boys jump on the trampoline and Stella and I hang out in the shade. Sam enjoys playing guitar outside. 

So whats going on with Stella right now? She is almost 6 months old! She is rolling around, starting (a little bit) of solids, grabbing at objects and blabbering and learning her voice. We took her swimming with the boys and she LOVED it!! She is just into size 2 diapers and her 6 month clothing. I think I am in a bit of denial about her getting bigger and haven't gotten rid of her newborn clothes yet!

Medically, she's doing pretty good right now. In the beginning of the month we found out she had a UTI and some reflux into her of her kidneys. Her Urologist suggested upping her caths to 3x a day. After she finished a course of antibiotics, she started a daily low dose antibiotic. She was having a 'Urodynamics' test done when they found the UTI and couldn't finish the test. It's a test to see how her bladder functions, and it is rescheduled for the 31st of August. Her renal ultrasound showed the reflux. Going from 1 cath a day to 3 is not too much of a change. It's just another added part of her daily SB care. The whole process takes about 15 minutes. After her next test we will know more about her bladder but from what we know right now she does not empty it completely. She can void on her own but there is some residual urine left. Cathing removes that excess urine. If that urine was left it would reflux back into one of her kidneys, causing a higher risk of developing a UTI. Eventually I will not be talking about ALL her medical complexicites :)

We are still on "The Great Shunt Watch!" She had an MRI and we had the same conversation we've been having since she was born. The MRI pictures show that her ventricles are enlarged but she is tolerating the pressure. Her neurosurgeon thinks maybe some kids handle the pressure more then others. Signs of not handling the pressure would be lethargy, vomiting, extreme fussiness, and "sunsetting eyes" where she wouldn't be able to look up. Stella has another MRI on August 22 where we meet with a new surgeon. Her other one is on paternity leave. I asked about what if there was brain damage being done that we didn't know about. He said there is just not enough data to show that enlarged ventricles cause brain damage. He sees kids in the clinic with SB and no shunt who are progressing well. Stella is thriving and amazing us so I am trying not to worry. She has a slight gross motor delay (which is most likely contributed to her S1/L5 spinal defect). From what we know she has no feeling in her feet but I have seen her toes move and ankles flex. When I fill out her assessments she scores very high on the communication section and her fine motor skills are great!

Her other big appointment in August is with Children's PT and Neurodevelopmental Pediactricain. I am hoping we start talking about getting her started with orthodics. She cannot bear weight with how her feet flex up so getting her a pair of braces will help her . I can stretch her feet all day but I think having braces on her feet will help her. The PT may want to wait until shes a little older but I am interested in hearing what they have to say. Stellas Occupational Therapist thinks it would be good for her. By the way we LOVE her therapist and shes only here for a few more sessions. Hoping we like the new one too!

Her Neurodevelopmental Ped is an awesome doctor! He is the go to guy for all our questions. Thankfully we have not seen any issues with her 'Chiari Malformtion' or 'partial agenesis of the Corpus Callosum'. Those are those brain abnormalities that may never cause an issue but we are always thinking about them.

I know after reading all that information it sounds so scary! But really, all that is just second to how amazing Stella is. She's just a baby. She's a little sister who laughs at her brothers and loves to cuddle and play and eat!! We are sooo lucky she is in our lives.

Funny Words

My kids have quite the vocabulary. They SOAK up everything we say. Lately I just can't get enough of there conversations. Here are a few things I've heard lately.

Phineas (Age 2)

-"Open the freakin'  door!"
-"I love my mom. I love you Missa."
-"Call me Phinny Jack Abraham."

Roman (Age 4)

-"Mommy, why do aliens live on Mars, and humans live on Earth?"
-"When I'm a man I'm gonna do dishes and mow the lawn."
-"What was I like as a baby?"

My boys talk ALL DAY. They have great conversations with each other and play so well together. They are usually playing Batman or Star Wars. Today they were cooking pasta for each other. They giggle and joke and are goofy little guys. So so lucky to be their mom :)

Stepping Out

Today I made the decision to totally step out of my comfort zone. During our OT session on Wednesday, our therapist mentioned the 'Parent 2 Parent' program in Whatcom County. It's a support group for families with children with special needs and/or developmental delays. They can match you with families with a child with a similar disability or medical need, or that has a child around your childs age. They also run support group meetings and activities for siblings. She mentioned a picnic for the program.

Today was the picnic.

We have so many supportive friends and family. Everyone in our lives always has kinds words for us and been nothing but amazing. I really can't complain! I do however, struggle with having other parents to talk with that have a child with special needs. I have met some AMAZING moms online that have children with SB. Even some that were born almost to the day Stella was! I also met a mom in Seattle who has a son that is older with SB. These parents are my live line! It makes this journey a little less lonely.

Sam was working tonight so I took all 3 kids to the picnic. It was at Fairhaven park. I wasn't sure what to expect. They had little stations set up all around for kids. Bubble blowing, face painting, and basketball, and a ton of other activities. There were kids (13 and older) who are trained in babysitting kids with special needs who were around to help. The boys had a blast!! I tried to watch them but give them some independence to interact with other kids. I was hesitant at first to talk to anyone. But, after awhile I warmed up and was chatting with a few different parents. Most of them had children in the 'Birth to 3' program.

I left feeling really good. I plan on getting involved more and they have meetings for 'Dads Only' that I know Sam wants to be a part of. Though no one there had a child with SB, just meeting other families that have special needs children was nice.

Next week is a BIG week for Miss Stella. She has a long day at Childrens. First off is a renal ultrasound at 7:30am. We need to check on her kidneys to make sure they are nice and healthy. Afterwards is a test called a Urodynamics test. She has to lay on a table for an hour while getting xrayed. They will test her bladder and what muscles work when she has to urinate. They also see how much her bladder holds and checking for an reflex. I can be there with her and feed her and comfort her during the test.

After that we meet with a Urologist. I'm hoping everything is going good and we can continue to cath her once a day. She has something called Neurogenic Bladder/Bowels that will require some pretty heavy duty surgery when she is older. For now her cathing is more to check how much residual urine is left in her bladder.

Then in the afternoon she has another MRI. It's been over 2 months since her last one. Her head went up 2 cm from 2 to 4 months. I was a little worried at her 4 month wellness visit but it still puts her in the 85th percentile. We meet with her amazing neurosurgeon after the MRI to talk about placing a shunt. I'm trying not to worry. I know and trust they will not place one unless they were positive it was time. And if it's time, then I am happy she was able to make it so long without one. It's a pretty straight  forward procedure but it does require holes drilled through the skull and that is just a scary idea. The hospitalization is only about 24 hours afterwards.

We are fiercely working on her therapies and yesterday she rolled over 6 times in a row from tummy to back. I can see everyday the fire in those bright blue eyes. She is just blowing us away with how strong she is.

I wanted to do my Finn blog entry but I want to do it with a good updated picture. So I will do that tomorrow! Things with Stella have been pretty good lately. She is such a good baby. I mean, at 2 months she was sleeping though the night and just very content. Lately shes been more fussy than usual. Not wanting to be put down and put in her swing. I worry when she is having a crying spurt but then she will be happy and smiling and back to her normal self.

She is just so hungry all the time! I spend hours nursing her and then end up supplementing with formula also when I got nothing left! I am hoping it's just a growth spurt. She is now 12 1/2 pounds and 25 inches long. My 2 main worries right now are a UTI or her needing a shunt. She has an MRI on July 5th. I am praying that foremost she does not need a shunt but if she does it is not an emergency situation.

I have been struggling a bit lately when I see other babies her age doing things she quite can't do. She is trying so hard to roll from back to tummy. She CAN roll from tummy to back, which is great! I just have to get over the sadness I feel. Especially when kids her age will be starting to walk. I think it's normal to periodically to feel a little sad but I try to snap out of it fast. We are lucky and blessed that she is thriving so well.

We recently added massage therapy to her list of daily activities. She seems to really be liking it. She is reaching more for toys and cooing and babbling a lot. When I took her to her 4 month wellness visit I filled out a questionnaire about her development. She scored very high in each category, except gross motor. She was a little below where a "typical" 4 month old is. It was great to see she scored so high in the communication area.

Rome Dog Millionaire

My dear little sweet baby Stella has pretty much taken over this blog! I thought I would write about my first born, Roman, because he is getting so big and I want to remember this stuff!

Roman is..... Loving, Feisty, Imaginative, Hyper, Inquisitive, Fast, Helpful, Strong Willed, and Creative. I could name about a million more things but those are some of his greatest (and sometimes most challenging) qualities.

He is 4 1/2 going on 13 sometimes. He can put in a videogame and get playing, and download apps onto my Kindle with no problems. I swear he's gonna be teaching me about technology as he gets older. It's not a huge surprise since Sam is the same way. This kids knows A LOT about comic books and super heroes. You could quiz him on Star Wars and there is a good chance he knows the answer. He likes watching The Big Bang Theory, Ricky Gervais show, and Conan with us. Of course he loves cartoons like Batman, Adventure Time, and Star Wars Clone Wars. The other day he said something about Mitt Romney and brought up Stephen Colbert's SuperPAC. What a little smartie!

He loves jumping on our trampoline, playing soccer, and having NERF wars outside with his Daddy and brother.

In a lot of ways he's like Sam. He has lots of interests and hobbies and they are totally made for each other. They have an amazing connection. BUT lately I see a lot of myself in him. It's kinda funny but he is really gaggy and sensitive to things like I am. If he sees vomit or poop he is running in the other direction. He hates the sight of blood and if he saw moldy food he would be sick. He's always been like that. He is also like me where he just chit chats a lot. He will just talk and talk and sometimes it really doesn't go anywhere. He is much more outgoing then I was as a kid. Sam and I were both shy kids and Ro is just the star of the show! He is the party guy and loves to dance.

I love the age he is. It sometimes makes me sad to see him growing up and soon he will be 5 and I will probably cry a bit. He is in the "testing" phase where he likes to see what he can/cannot get away with. It's hard sometimes figuring out how to parent a little boy, not a toddler. We struggle a lot with hoping that we are making the right decisions. We are choosing to homeschool him next year for preschool. He is gonna be one of the older kids in his grade since his birthday is in October. I'd like to keep him home this upcoming year and then after that, start him in Kindergarten.

I'm just really proud of the boy he has become.  Even though he has times where I swear his ears have fallen off, he is really a great son and big brother. He is the leader of the little Abraham Army. Finn and Stella are in good hands!!

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.

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.

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!

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.