Living on a Rainbow

                                               *DISCLAIMER *

I am NOT pregnant, I technically cannot have anymore babies, and am very very satisfied with my children. 

But seriously I kinda miss being pregnant and having a new baby. I delivered 3 children in a 4 year 4 month period. All I have known for the last 6 years is getting pregnant, being pregnant for 9 months, giving birth, then when that baby is about 16 months old, getting pregnant again. There was a 3 month time between weaning Phineas from nursing and then getting pregnant with Stella. We found out we were pregnant with Roman the month after I turned 22 and Stella was born on my 27th birthday.

Sam thinks I am crazy. He has seen me have horrible morning sickness, listened while I was miserable during that last month of pregnant, held my hand while I delivered our babies and been there for the many many sleepless nights. I told him the other day I missed it all and he looked at me like I was out of my mind. I told him I think all mothers, even when you are 100% sure you are done having children, feel some sort of tinge in their stomach when they see a newborn baby.

We made the decision to have a tubal ligation done after my cesarean with Stella. It wasn't even necessarily because she had major complex medical needs but it was because our family was complete. We had our 2 boys and our girl and we just *knew*  we were done. Now that our kids are getting older, it's getting easier to go do fun things. Sam takes the boys to the movies, and trips to the park and library are crazy fun. Roman is in school and transitioning to a much more independent child. Phineas is a few days from turning 4 and is a bright kid. Our little Stella is rounding the corner to her 2nd birthday, very active and verbal. These are all amazing things and it's such a blessing to see these little people grow up.

I've purged most of the baby goods in our house. Most clothing that is smaller than 2T is gone, all rattles and newborn toys, pacifiers, bottles, play sets, and baby gear is gone. I've kept a few little outfits that all my kids wore home from the hospital, plus their newborn wristbands and hats they wore in the hospital. It's been cathartic for me to free myself of that and look forward to the future. I will always "Awwwww..." when I look back at pictures or reminisce about the past. (Which I definitely did while finding these old pictures)

On Tuesday I gave a speech about Stella and her journey thus far, with an emphasis on PT and the Early Intervention program in our county. Early Intervention or "Birth to 3" is a program for kids, some with a clear diagnosis, like Stella, or for kids without a dignosis that are showing a delay in an area of development. Stella qualified automatically for the program, given her diagnosis of Spina Bifida. 

A few times a year the staff at her therapy center meet with others in the community that are involved with young children that have either a developmental delay/disability. I spoke in front of maybe 20 women, the only man there was Sam :) They meet about all sorts of topics but open up a time slot for parents to speak about their expiernces with the center. I cried the first time reading it to Sam, but thought I would be OK when it was time for me to speak. But when it was time to speak, I couldn't even make it through the first sentence without the tears starting! If you speak to any parent that has gotten a prenatel diagnosis, it doesn't matter how long ago it was, it is hard to talk about. I still, probably once a day think about what it was like for Sam and I when we found out Stella had Spina Bifida. Hard times. 

I made it though my speech, stopping a few times to catch my breath and wipe my tears away. Stella wanted me to hold her so I held her the whole time! It was such a wonderful group of people to speak to and I am really glad I did it. Here it is!!

 September 26^th, 2012 was a great day for our family. We found out during my 19 week ultrasound, that our third child was a little girl. We already had 2 boys, and were estastic to find out they were going to have a little sister. We were absolutely shocked when the following morning, my midwife called me to tell me some abnormalities were found in our unborn childs brain. The next few weeks were a blur.We were immediatly sent to a High Risk OBGYN in Everett for further testing. After a handful of ultrasounds, blood work, and an amniocentesis, were were told our child had an open neural tube defect, myelomeningocele. Or, what is also known as Spina Bifida. Her spine had formed down to her lower Lumbar and upper Sacrum region, where it eventually malformed causing an opening in the skin. The malformation of the spine caused excessive spinal fluid to collect in her brain, a condition known as Hydrocephalus. She was also diagnosed with Chiari Malformation, which means a downward tugging of the brain stem. We were told she needed immediate surgery, within 48 hours of birth, to close the opening in her back. She might also have needed a shunt to drain the excessive fluid. A shunt is a internal valve in the ventricle of the brain that is connected to internal tubing that runs from the brain to the abdomen. It helps with the flow of spinal fluid. We were told since the spinal defect was low she had a good chance of walking, though most likely with assistance, and that all children born with Spina Bifida had issues with bladder and bowel control.

On February 6^th 2012, my 27^th birthday, Stella Joy Abraham was born by cesarian section at the University of Washington Medical Center. She was sent immediately down the street to Seattle Children's Hospital, where at 20 hours old she underwent major surgery to close the opening in her back. This surgery does not fix the defect, but is necessary to reduce the risk of infection. She spent 11 days in the hospital. While there, my husband and I learned how to catheterize her bladder, change the dressing on her incision, and what we should expect the first year. She was so fragile, this 7 pound newborn baby, but she had the spirit of a champion fighter. She was off pain medication within days of her surgery and her Hydrocephalus was stable, so surgery for a shunt wasn't needed at his point.

Before she was even a month old, we were contacted by Ann Marie, at the Whatcom Center for Early Learning, to start the process for her Physical Therapy. We had met with Physical Therapists during our initial hospital stay who taught us different stretches to do with her but knew we needed to start formal PT right away. She had very little movement in her legs, they were stiff and hyper extended. Ann Marie made all the arrangements around us. She came to our house and was patient while Stellas big brothers played and we cared for a newborn. We talked candidly about our family and what is important to us. After a few visits we had an Individual Family Service Plan made. We eventually did a physical assessment, and we found she had an obvious gross motor delay. This was expected considering the nerve damage in her spine that causes her weakened legs.

I had never heard of in home Physical Therapy. I thought we would be going to a therapy center to receive our services. Ann Marie explained how beneficial in-home PT is. How teaching children in their natural environment and in their comfort zone helps them reach their maximum potential. Also, it was helpful since we had 2 older children and on days that my husband was at work, our boys could go play in their room while we were meeting.

By the time Stella was 2 months old we were starting our therapy. We worked on tummy time and stretches to do with her. She was so little at this point, sometimes only nursing and sleeping through it. We also talked about, and were offered other resources in the community such as the Parent 2 Parent support groups.

Around 6 months old, Stella was starting to roll over and was attempting to sit up, unassisted. We started working with a new therapist, Alis, and changed our every other week appointment to once a week. I felt like this was a critical time in her development. Her legs were relaxing and she was showing she had feeling lower in her legs then we had expected. Her feet and ankles still had very little sensation but her hips were getting stronger. Once we switched to PT every week, we saw her development blossom. She started sitting unassisted and eventually started army crawling. By 9 months old, she was ready for her first set of Ankle Foot Orthodics. Alis contacted Stella's doctor for the prescription, wrote a letter of medical need for insurance, and came with us to her appointment to be fitted. At this appointment, our daughter tried to stand for the first time. Alis brought over a standing frame for her to learn to bear weight. I credit this piece of equipment, probably from the 1970's, with strengthening her legs. She stands up in it and is secured into it and can play with toys in the tray or eat a snack. Our couch has been one of her main therapy tools. It is the perfect height for her to stand at and independently learn to bear weight.

One of the tools that I love is the AEPS. Every 3 months we sit down and do an assessment of Stella's skills. I like evaluating not only her gross motor but all areas of her development. She always shows growth in each area, especially scoring high in the communication and social areas. We always have goals set – short and long term. We periodically discuss these goals to see which she have met and how we can help her reach the ones she has not.

At 13 months old, we were blindsided a bit by her Neurosurgeon deciding it was time to intervene regarding her Hydrocephalus. Her head circumference was going up and we were seeing some swelling on her lower back, indicating that spinal fluid was still not flowing properly. She thought Stella would be a good candidate for an ETV – an Endoscopic Third Ventriculostomy. They would enter her brain and puncture a new hole in her ventricle, to allow for spinal fluid to flow more freely. This sounds scary and extreme, but if this was not offered then she would of needed a shunt. Shunts save lives but have 100% chance of needing at least one revision. Her ETV was performed seamlessly, she needed only 1 night in the hospital. As of her MRI last month, it seems to be working perfectly. Now that her hair has grown back, you can barely see the scar from the surgery.

In April we started a whole new journey in the Whatcom Center. A spot opened up for the weekly playgroup. It is an amazing opportunity for Stella to interact with kids her own age. I love the structure of play time, songs, and snack time. Every week I see her come more and more out of her shell. She is starting to initiate play with others. This is also a great time for myself to talk to other parents. We have such supportive family and friends but don't know many people who have a special needs child. The parents I talk to at playgroup understand what it's like to watch your child be poked and prodded by numerous doctors. They understand what it's like to be your child's advocate and work to show the world your child will not be defined by a diagnosis. Playgroup has become a priceless aspect for Stella's continued growth.

Whatcom Center has helped make therapy become a way of life for us. Alis not only works hands on with Stella but teaches us what we can do to help her flourish. In that 1 hour a week we meet, she answers any questions we have. She is a great resource for sign language, games to play to enhance fine motor skills, and ways we encourage speech. She gives us the tools we needs to give Stella every opportunity to thrive and explore. We always discuss upcoming doctor appointments and her general health. There is never a time when therapy is over and I have unanswered questions.

Alis recently brought over a walker for Stella. She is starting to warm up to it a bit and will put her hands on it. She quietly studies and explores it. It's exciting to know that we are working on her walking. We have accepted the fact that no one has a crystal ball to see exactly what Stellas future mobility will look like. Braces, Walkers, Crutches, and Wheelchairs. They used to be intimidating but now we look at all of these as tools to help our child experience life just like everyone else.

Currently, at 16 months old, Stella is a very typical toddler. She is feisty and funny. She absolutely glows when her brothers are around. She is opinionated and wants independence to explore our home. Just because she is not walking, does not make her any different then any other child her age. The staff at Whatcom Center treat our child as if she is their own. We are greeted with nothing less then a warm welcome. Having this support for our family is absolutely invaluable. I feel like we have these people on our team that will do whatever they can to assist Stella and our family. For that, I will be forever grateful.

You're my Sweet

I just peeked over at our blog and realized its been 6 months since an update! I keep a pretty good update on Facebook but there is something cathartic about blogging. So much awesomeness has been going on.

Roman - - The dude is smart. He turned 5 last October and is starting Kindergarten in September. We are trying to ready him for school and we are seeing so much development! He can read so many words. We've lost count. At least 35+ words. He is just so full of excitement for everything and loves life. He still loves to cuddle and just loves his family so much. He is growing into an amazing little guy. Everyday I have a moment where I look at him and think of him being a newborn. He made me a Mama and we have a bond that is irreplaceable.

Finn - - Ohhh Finn baby! He turned 3 in November. Finn is the most loving boy. He tells Stella and I how pretty we are and how much he loves us. He tells Sam ALL day long "I love you Daddy!" We are in the trenches of the "terrible 3's" where my smiley boy goes from pure JOY to  a hot mess, really quick. He is still learning sharing, consequences and discipline. He is really coming out of his shell and very hyper and talkative. He just has the most beautiful brown eyes, it just melts my Mama heart. He looks up to Roman and wants to do everything Ro does.

Stella - - She turned 1 last week. Where did this year go?? I put on FB how amazing her 1 year check up with the Neurodevelopemental Pediatrician went. He had nothing but good things to say. Last time I blogged, I had written about how he wanted her to have a shunt, A week after that, her Neurosurgeon said that she didn't think she needed one. When we saw him last week he seemed happy she didn't have one and thought she is still doing good without one. He did a PT assessment of her and said "Oh yeah, this kid is definitely gonna be a walker." So when I first heard this, obviously I was overjoyed. BUT after we left the appointment, I told Stella that I wasn't gonna go light on the PT just because he said that. PT is not just once a week when her therapist comes over. It's all throughout the day. From having her crawl around and stretch, without her braces on, to standing in her "standing frame" twice a day. We do lots of work with her standing at the couch and doing "side steps". It's just a huge part of our lives. Her PT thinks she will be a walker (isn't that what they call the zombies in Walking Dead?), but we know this will take time. When she starts being able to cruise along the furniture, we will try out a pediatric walker. There are no guarantees about her future mobility but we will give her every opportunity to see what she is capable of. As of today, she is a FAST crawler. Shes in this transitional crawl where its a little better then an "army" crawl but not quite the 4 point crawl that most kids do. Just yesterday she went from a laying to sitting position, which is GREAT. She just freakin amazes us!!! Other then all that medical stuff she is just LOVE. She laughs all day long at her brothers and almost always has a smile on her face. I'm proud to say she is still nursing. Not too often, maybe 3 times a day, but it's still great we made it this far.She loves exploring, eating, and interacting with her brothers.

Other then all the kid related bragging, stuff is just good over here. Sam and I are working on using our spare time (what little of it there is) on productive stuff. His main focuses are writing and playing music. I am pushing myself to read everyday and try to spend some time for myself, even if it's just giving myself a pedicure or taking a long bath. It's just SO easy to spend every second with these kiddos, then after they go to bed, worry about housework, then catch what sleep I can. I gotta remember that I matter too!

My husband is just a rock star in this house. When I tell people that I'm lucky to have him and that he is so great... I'm not just saying it to be nice. He is encouraging, and honest, and always knows how to bring me back to reality when I'm asking all the "What if" questions. I need that because I am my own worst enemy. I sit, and stew, and question, and worst case scenario not just Stella but Roman and Finn too. I am a natural worrier. I can say it is getting better. I see happy faces in front of me all days long, so I must be doing something right.

Anyone else obsessed with The Lumineers Song "Ho Hey"? I love these lyrics:

I belong with you, you belong with me, you're my sweetheart

I belong with you, you belong with me, you're my sweet

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 :)