Tuesday, April 28, 2009

Quality Time with Nana



Luca is getting lots of quality time with Nana this week from feeding, changing diapers, snuggling, and even some midnight feedings. We are so glad that she and Papa Jay are here to help out!

Aunt Jessica and Uncle Kimi



We had a nice visit with Luca's buddy, Layna, and his Aunt Jessica and Uncle Kimi. We are all lucky to live within a few blocks of each other. It will be so fun when Luca and Layna can play together:)

Mommy-Baby time

Swedish and Children's wrist splints



What was she thinking? Pediatric IV boards and long foam straps emulating leather gladiator wraps. How tired was I that I said Ok and walked away. I guess i was just too excited to go home. What's a blog without a little venting?

Monday, April 27, 2009

Casting week 1/? and new splints


We spent a long afternoon at Children's Hospital today. Luca got new splints made. They are actually functional unlike the crappy ones made at Swedish. Luca also got his first set of casts on his legs. They will be changed each week as they progressively stretch his feet out. We are anticipating + or - 12 weeks of casting. Big day for Luca.

Sunday, April 26, 2009

One tired Mama


Katie actually fell asleep on this rock with Luca in the sling. I took the cell phone out of her pocket and snapped this picture of her without her even waking up. Who sleeps standing up?

Father-Son time

Luca doing his stretches after eating. After each feeding Luca has to spend about 15 min stretching to increase his range of motion.

Thursday, April 23, 2009

Links

Two links about arthrogryposis that have been encouraging to us.

amcsupport.org

Abby's story has been very similar to ours. Hopefully Luca will do as well as Abby.
forabby.com
video

Praises and Requests


Thank you for your many prayers for Luca and for us. We wanted to share with you some of the ways that the Lord has answered them and requests we are still bringing before him.

Praises:
1. For Luca's life
2. That all of his organs are working well
3. Luca is eating well
4. He is moving his legs on his own
5. We were able to make critical appointments for his hands and feet on Monday, April 27th at Children's Hospital with arthrogyposis specialists to begin the process of serial casting for his feet and making splints for his wrists.
6. For the abundant love God has given us for this wonderful child! We are so happy to have him.
7. For the support and meals we have recieved from friends already as well as help from my parents.

Requests:
1. That Luca will be able to use his hands and feet during his life.
2. For ongoing thearapy, dr. appointments and scheluding with doctors.
3. For John and I have endurence to do motor exersizes with Luca several times a day, as well as going to all of the appointments. We already have four for next week.

Tuesday, April 21, 2009

First outing





Today we went to Lincoln Park for a walk. We enjoyed pushing him in the stroller and the sunshine. It was a beautiful day. Also, we put on the hat on him that his aunt Betsy made for him.
We are falling more in love with him everyday, hard to imagine loving someone so small so much!

Monday, April 20, 2009

We are Home!


We came home today! We are tired, but very thankful to be home.

Sunday, April 19, 2009

Going home tomorrow

Luca is eating so well that he is going to be able to go home tomorrow!!! We are so excited about it. Luca needs to be seen by PT/OT again tomorrow to have some splints made for his wrists. They also need to teach us some exercises for him to do at home.

In no way do I have I felt like this is vacation. Well, I guess I just have to be happy for Katie that, that is how she feels (Maybe she won't feel like that after the pain meds run out:)

Saturday, April 18, 2009

Cute Luca



Papa Jay



Here is proud Papa Jay with his adorable grandson.

First Family Picture



Well, here it is, the first family picture. We are all still in the hospital. I'm on the 4th floor, John and Luca on the 2nd floor. My stay got extended by a day due to a mild spinal headache. It seems to have subsided tonight but we wanted to make sure that it would not get worst before being discharged. The plan right now is for Katie to be discharged tomorrow morning (Sunday) and then she will move down to Luca's room where there is a twin size bed until Luca is discharged (hopefully Tuesday or Wednesday of this week). John is doing a super job caring for Luca at night and Katie is supplying him with the goods:) We are learning a lot and enjoying these days together. I have to admit that somehow it seems like a bit of a vacation. Papa Jay is also here to talk with, run around, and hold Luca.

What's going on?

Luca is now eating enough that he was able to be wheened off his IV last night. He is still not eating quite enough to go home though. Luca is a pleasant baby so far except he really likes to scream during dipper changes.

Geneticist consult:
A geneticist from Children's Hospital came to visit Luca on Thursday. Bottom line: arthrogryposis. All his organs are functioning normally, and at this point there are no signs of cognitive deficits.

Ortho consult:
Luca has severely clubbed feet, and contracted wrists. He has good range of motion through out his other joints. Luca will not have the muscle tone/strenght in his arms and legs that a healthy boy has, but the orthopedist is very optimistic that he will be able to walk and uses his arms. Treatment: Luca will have serial casting for his feet, probably for 12 weeks, and lots of physical and occupational therapy.

I am now a Dad

Even though Luca is still in the hospital I am getting my first real taste of parenthood. Yesterday afternoon Luca got to change floors. He is no longer in the neonatal intensive care unit but is a private room with bed, called the infant special care unit. Last night I spent my first night with Luca. Every three hours I did what every parent of a new born does. I woke up, changed him and fed him (9:30 pm, 12:30 am, 3:30 am, 6:30 am, 9:30 am,). I am now a Dad.

Friday, April 17, 2009

Luca Ellis Walker- Day 2





Today was much better than yesterday so of the highlights included:
John and Katie both getting 9 hours of sleep at night
Luca feeding well and being able to move from the NICU to his own room in a step down unit where John (or I when discharged) can sleep overnight
Lots of visitors and phone calls
Beautiful flowers from church and my parents
Falling more in love with our beautiful son, Luca
Feeling awake and walking around

Thank you for your continued prayers and support. We are so thankful for this gift of life.

Thursday, April 16, 2009

Feeding Luca



He is adorable, eating and doing well. We are so thankful for him.

Birthday




Today Katie's AFI was only 3, so Katie was admitted to Swedish Hospital for a c-section. At 9:15 pm Luca Ellis was born weighing in at 5 bls 14oz. After a few brief moments with Luca, he was transferred to the ICU to monitor him more closely. This morning Luca to will meet many Doctors for further evaluation.

Wednesday, April 15, 2009

New hair do


I got my hair trimmed before the new baby arrives! Not too short, but relayered a bit:)

Monday, April 13, 2009

Celebrating Easter!



John and I both have jobs that sometimes require us to work on holidays. We both worked this Easter Sunday, although I had some time off in the afternoon. A few of our friends came over for a potluck which was wonderful! Everyone brought something. It was relaxing, tasty, and great time together. I made a plate for John that he ate when he got home from work. We all missed having him there.

Friday, April 10, 2009

Friday Appointment

We had a growth ultrasound, non-stress test, and dr. visit this morning. The baby is estimated to be 5 pounds 6 ounces although since the baby is in a breeched position the head is more round and often makes the estimate lower than he may be. The baby was very active during the non-stress test and passed with flying colors. The c-sections is still on for April 21st.

Tuesday, April 7, 2009

Our townhouse



Here are some pictures of our new rental! I am really enjoying it.

A picture of my world



I had an ultrasound and non-stress test today, both went well. The baby is growing, moving, and enjoying his little space. Here is a picture of me taking the non-stress test. Jess and Layna came with me today. Layna smiled the whole time.

Visit with Dad Walker


John and I had a great visit with dad Walker two weekends ago. He flew in on Thursday and we went for a walk at Lincoln Park and then had dinner with Jess, Kimi, and Layna. Saturday night we enjoyed a play at Taproot Theater called Tuesdays with Morrie; which was a very well done drama with lots of humor, reflection on life, and tenderness. Sunday John and Harry went on a fishing trip on Lake Washington in the canoe. Unfortunately, they didn't catch any fish but had a good time on the Lake. We ended the evening with burgers on the grill. Here is a picture of us walking at Lincoln Park. You can see the ferry behind us. Thanks again for coming, Dad.

Saturday, April 4, 2009

My Favorite Place in Seattle



What a glorious day to spend at my favorite place in Seattle, Discovery Park. The weather today was sunny, 57 degrees, and beautiful. John was working today and I was geared up to go on a big walk by myself, bringing along my cell phone and my Ipod in case I got lonely or needed help:) The trees were starting to bud and the spring flowers were beautiful. I heard the birds singing and saw about 100 sailboats racing on the sound. I think I would live right next to the park if I could. I thought I could do the 5 mile loop no problem, I mean, I am walking after all not running. I got about half way and I was both tired and hungry. So I laid down on a bench and took a break. The last haul up through the meadow was exhausting but wonderful. Next time, I will at least pack a snack and some water but maybe it will be when I have a little guy strapped on my back (or someone else:) instead of in my belly. I am thankful for this place to be "out of the city" without going too far. I didn't take these pictures myself, but this is what the park looks like in case you haven't have the opportunity to visit lately.

Friday, April 3, 2009

Another Doctor Appointment

John and I went in for our Friday visit. We were pleased that the ultrasound showed that my amniotic fluid index (AFI) had increased this week to 6.5. The a non-stress test (NST) went beautifully. I started laughing pretty hard near the end of the NST which made me have a large contraction. The doctor we met with confirmed that she thought April 21st was a great plan for the c-section unless my AFI drops drastically. We are thankful again for another good report and go back on Tuesday to check my AFI and have another NST. Only 4 more doctor visits to go!

Wednesday, April 1, 2009

Breeched baby and Casting for clubbed feet

I thought I would add a few more details that we know about and I haven't included before.
  • The baby is currently breeched (head up) which is why I have to have a c-section.
  • The baby's feet are both clubbed so he will have serial casts from his feet to the top of his thighs. Usually they cast about 24 hrs. after birth and every week the cast is changed to help straighten out his legs and feet. Usually this last for about 6-8 weeks.
  • His hips may or may not be dislocated, we won't know until he is born.
  • He will have splints for his hands.