It really is a miracle that he is doing so well! You would never know that there is an enormous incision on the back of his head. I am overwhelmed with joy and so proud of our little guy.
I took this photo of Miles this morning to capture just how amazing he is!
***warning- graphic***Today was a big day for Mr. Miles. He had major surgery to repair his encephalocele. For those of you who don’t know what that is, Miles was born with a little bubble of skin on his skull that contained spinal fluid and some brain tissue. To repair this they had to take a portion of his own skull and cut it out and place it over the opening (the encephalocele) They then put a dissolvable plate in place of the missing skull. This should heal within 12 months and dissolve on it’s own. Pretty amazing!
It has been a long day. We had to be here at 10 am. His MRI was scheduled for noon, but didn’t get underway until 1. The surgery started at 2:30 or so and he was done around 4. We were told the surgery itself could take 5 hours or more, so things must have gone much better than planned.
We didn’t get to see him until after 5pm. And our poor little guy was in such pain! He just couldn’t relax. Every time he would come close to falling asleep, he would jerk back awake- screaming in pain. Needless to say, this was the worst part of our day. By 9pm, he had started to calm down and he has now been sleeping off and on since then (it is about 2:30am). He still wakes up occasionally in pain, but has gotten much…much better.
It has been so hard to see him in such pain and not be able to do anything for him. I can’t even hold him right now. His first surgery (the day he was born) was much easier. They say it gets worse and worse the older they are. I expected it to be hard, but until it actually happens- you just can’t know how hard it will be.
We are so thankful that at 2 1/2 months old he will not remember this pain. We also know that this surgery had to be done and will definitely help him in the long run. Thank you so much for your many prayers. I am confident that without prayer, we would be completely miserable right now. The power of prayer is an amazing, unexplainable gift!
Today I have been clinging to this verse: “For I know the plans I have for you”, declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
Easter 2008 was great! Easter is my favorite holiday. I cherish it first and foremost because it is the celebration of the Resurrection of Jesus! But I must say- I do enjoy all the candy, delicious food and the beginning of spring! I was able to attend church for the first time since Miles was born (Joe stayed home with Miles this week). Since it is the Dr.’s orders not to bring Miles out until April, I have been desperately wanting to get back to church! I miss everyone so much 
It was awesome to be able to worship with our wonderful church family. I hope you enjoy the photos of our day.
“You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here. See the place where they laid him. But go tell his disciples and Peter, ‘He is going ahead of you into Galilee.’ There you will see him, just as he told you.’”
Happy Easter!!!
This is a recipe I concocted about a year ago and have made several times. Since it is starting to warm up- I felt like something summery for dinner tonight. We knew Greta liked salmon, but discovered tonight that she LOVES capers! Here it is!
Open faced Salmon Sandwich
1-1.5 lb. fresh salmon
Marinade:
1/2 c. olive oil
1/4 c. fresh lemon juice
1/2 c. soy sauce
3 T. balsamic vinegar
1 T. mustard
1 t. salt
1 t. pepper
2 T. Worchestershire
12 or so garlic cloves, crushed
Garlic Lemon Mayo:
1/3 c. mayo
Juice of 1/2 lemon
1-3 garlic cloves (I use 3) pressed in garlic press
Ciabatta bread
Romaine
Sliced tomato
capers and lemon wedges to garnish
Whisk marinade ingredients together and place in zip-lock bag. Add salmon and refrigerate to marinate. 30 minutes to 24 hours. Turn oven to broil and broil salmon until dark on top and meat is done to your preference about 10-15 minutes depending on thickness of fish.
While salmon is broiling, combine mayo, garlic and lemon juice. Mix well. Toast ciabatta pieces and spread with mayo mixture. Top with romaine, tomato, salmon and capers. Squeeze fresh lemon juice on right before serving.
My friend Mandi, brought over a lasagna for us after Miles was born. She is a very health conscious cook and I must say it was the best lasagna we’ve ever had. I don’t ever make lasagna because Joe doesn’t like it, but we both LOVED this recipe and it’s not too bad for you! Mandi said reduced fat or fat free products can be used for any of the dairy. I’ve noted below how I prepared it. Thanks Mandi!
Mandi’s Lasagna
1 pkg. whole wheat lasagna
1lb. lean ground turkey or beef
1 container spaghetti sauce
2 sm. cans Hunts Italian tomato sauce
1 pkg. reduced fat cream cheese
8 oz (1 c.) fat free cottage cheese
1/4 c. fat free sour cream
2 c. shredded mozzarella
Boil pasta in salted water. Brown meat in skillet. Season with Italian seasoning, salt and pepper. Combine meat with spaghetti and tomato sauce. In separate bowl, combine cream cheese, cottage cheese and sour cream. Mix well. When pasta is done, place in bottom of 9×13 pan, spread 1/2 cheese mixture, then 1/3 meat mixture, repeat pasta, cheese, then meat. Finally, repeat pasta, meat and top with shredded mozzarella. Bake at 350 for 25-30 minute or until cheese is bubbly.
At 21 weeks pregnant with our second child, we went in (my husband, Joe, my Mom and I) for the gender determination ultrasound. We were so excited to see if we would be bringing home a little brother or little sister for Greta. The ultrasound started…Things were going ok. I was watching the screen and read something that said the baby’s head was measuring 24 weeks. I knew that could be a marker for downs syndrome and started to feel a little nervous. Pretty soon, the ultrasound tech told me to go empty my bladder. When I got back into the room, my OB was there and I knew that something was wrong. She said there was a “problem”. The baby had hydrocephalus, or “fluid on the brain”. I had heard of this from watching millions of birth shows on tv. She told us the same thing all of the dr’s would say- that the baby could be perfectly normal OR have severe mental or physical impairment or anything in between. The baby could also have other defects and might not live after birth.We went immediately to a high risk OB in town to have a level II ultrasound. This was even worse. The Dr. mentioned termination and the ultrasound tech said, “well, do you want to know what it is?” Like we wouldn’t care now. That was the worst day of my life.
Of course we cared. It was our baby and we loved it already no matter what! We decided to name our son Miles, which means soldier. I also decided that God must think I’m an awesome Mommy to give me this little boy. If he thinks I can handle this, I can.
The next months were filled with ultrasounds, a fetal MRI and appointments with the Neurosurgeon, NICU, and lots of prayer.
After hours and hours of research on hydrocephalus. I came to the conclusion that we really wouldn’t know the prognosis of our son until he was at least one and a half years old. We decided not to do an amniocentesis, because we did not want to put our little guy at any further risk. Even if he did have a chromosomal disorder, it didn’t matter to us. We would love him just the same. The Ultrasounds showed that his little head was getting bigger and bigger. At my 34 week ultrasound his head was measuring 50cm and his ventricles were measuring 45 mm. I don’t know how we made it through those months. Everything was so uncertain and so scary. If only we could know for sure what the outcome would be! The only way we made it through was by the amazing support of our family and church family. We could feel their prayers EVERY day. That was the only thing that made that time bearable.
On January 3rd, 2008 we went in for our scheduled c-section. I was extremely uncomfortable at this point and could not wait to have my normal body back again! The surgery started at 7:45am and Miles was born at 8:08am. He was 10 lbs 7oz and 21.5 ” long. His head was actually stuck in my ribs and he started crying before they could remove him completely. That was a strange sensation! They briefly showed me my son and whisked him off to the NICU. What a miracle! Other than an encephalocele on the back of his skull, he had no other birth defects. Any time there is the presence of one birth defect, the probability of others jumps dramatically. He had shunt placement surgery the evening he was born and stayed in the NICU for 14 days. He did so well and other than his surgery, never had to be on oxygen. He passed his hearing test at the hospital and as far as we know has no other medical conditions.
Miles is now 2 months old and doing great. His first big challenge will be to lift his head from the floor. That is the first step for sitting, crawling, and walking. We are working with his physical therapist once a week. He will have a surgery on the 27th to repair the encephalocele on the back of his skull. It will be so great to not have to worry about hurting that part of his head any more. He will also have 2 additional surgeries this summer to place a new shunt in the correct position on his head and remove the existing shunt.
He is a lovely little boy and he adores snuggling. We love him so much and could not imagine life with out him.
Here is a photo of Miles in one of the hats that I made for him. I copied the pattern from a hat lovingly sent to us by Sara at www.oghats.com. Her son Owen was born one week before Miles, also diagnosed with hydrocephalus. I came to the realization that Miles is going to need a lot of hats. With 3 surgeries planned for this summer, the hats will not only be a fashionable addition to his little wardrobe, but will protect his incision sites.
Well, we had to take a week off in our study due to sick kids! This week the characteristic is God is above. The verse is Every good and perfect gift is from above, coming down from the Father of the heavenly lights who does not change like shifting shadows. James 1:17. What a comfort to know that God is above everything. That the one who is in charge of every single thing is good and pure and DOES NOT change. I’m so glad that God is not like me- inconsistent, constantly changing my mind. He is above all and knows what is and what will be. Every last thing that happens to us is all according to his plan. God is never surprised. Before I was born, God knew that I would marry Joe, that we would have Greta and then Miles. He knew we would live in Lincoln, and even what color our mini-van would be. Sometimes I wonder if God is really interested in the fine details of my life. He is above all and can see everything all at once. Does it really matter if I gossip about one person? Does it really matter if I am not supportive of my husband? Then I think of the amazing detail that goes into one single flower…created by God. If a flower created for the sole purpose of looking beautiful and giving off oxygen can be sooo detailed. I know that God cares that much more about all the details of my life. The details of this earth are not an accident, not a pleasant surprise. They were planned by a loving creator who is above all.
It amazes me how much of a personality a 2 month old baby can have! I didn’t realize how much I loved his little personality until it was temporarily gone. After his surgery on Thursday- he was sleeping all of the time, not eating much and was definitely NOT smiling. It was so sad because he had just started to smile a lot. I had to wonder if he would ever return to his self. Miles normally eats ALL of the time and does not sleep very well. I never thought I’d miss these things. Yes, they are an inconvenience to me, but right now those are the things that make my little boy Miles. I am pleased to say that he woke up this morning (after a 2 hour stretch of sleep, very typical Miles) very much resembling the little boy that I know and love! After eating a HUGE breakfast, he played with his favorite toy and wiggled and kicked around in his crib. He was making all of his goofy noises and even cracked a few smiles for Mommy.
Greta helped Mommy make Easter cookies today! This was a tradition in my family growing up as well. We made and frosted sugar cookies for Easter each year. Such fun! I tried to get Greta to use her rolling pin correctly, but she would just stick it handle side into the dough 
Tonight was our first time dyeing Easter eggs as a family. It was fun to watch Greta’s reaction to the colors changing on the eggs, but I think Joe had even more fun than she did. This was actually Joe’s very first time dyeing Easter eggs, too! After Greta got bored (about 5 minutes) Joe and I had fun playing around with the dyes 
