Sunday, December 30, 2007
Wednesday, December 26, 2007
Monday, November 19, 2007
On the left is Luke's face at the height of swelling, and on the right is Luke just 24 hours later. They took off the dressing this morning and the little trooper was pretty much himself. He made friends all over the pediatric floor just in time to say goodbye to everyone who treated us so well. We are home now and life is hopefully returning to normal, although it seems eerily quiet with Grace still with her grandparents.
This is our last daily post of Luke's progress. We will go back to occasional posting when notable or funny things happen (or next time Grace gets her hands on a baseball). We will eventually post some more pics in his regular photo galleries, but we will spare the general public images of his gruesome 6" scar. Instead, we will thank everyone for their many calls, notes and prayers for his recovery and our well being. We really felt the support from everyone.
We will have much for which to be thankful on Thursday, and Luke has become a fan of UCLA for life. We just hope that they have a decent football team by the time he is old enough to know better.
Happy Thanksgiving, indeed.
Sunday, November 18, 2007
We came back in around 8:00 and Luke spent a happily uneventful day eating, snoozing and watching football with me. By afternoon he woke up and gave everyone the huge smiles that he is famous for. What a lift!
We alternated between being watchfully concerned for him and for being thankful that he didn’t have the dire conditions that many of the other PICU kids were dealing with. Spend a day in a hospital intensive care unit and you will undoubtedly find yourself counting your blessings. Ours are many.
As expected, Luke’s head and face are swelling. He’s already pretty chubby, but his face seemed to be popping out of his dressings. That is expected to continue through tomorrow, after which is should improve rapidly.
By mid-afternoon, we bade farewell to the PICU team and were moved to a semi-private room on the normal pediatric floor. He’s off his IVs and one by one seems to be losing his tubes and monitors. We have really liked everyone who has been caring or him, but do feel the need to stay on top of his pain management schedule. We were able to hold him briefly, but the tubes and cords that he still has make that a little tough. We think that he should lose the rest of them tomorrow.
They gave him Tylenol with Codeine this evening, but he didn't seem nearly as comfortable as he did with the regular Tylenol. In fact, it became clear that he was fairly uncomfortable. If he could talk, we're guessing that he'd say he had a "splitting headache." They switched back to regular Baby Tylenol and he was snoozing comfortably.
The room has a “bed” for one parent to stay, and looks like Chickee drew the short straw, so she will attempt to stay with him through the night. I hope she gets some sleep.
We are VERY thankful that he is doing well, but nobody would confuse this with a day at the spa.
Friday, November 16, 2007
We are staying at the Hotel Angeleno, and we have special thanks for Thomas the bellman, who took an interest in Luke when we checked in last night. We returned today to find a little gift and a sweet note from him to Luke today. It was really unexpected and much appreciated. Thanks, Thomas!
Monday, October 29, 2007
Q: What is Craniosynostosis?
A: Babies’ skulls are very soft and moldable, which allows for them to navigate the birth canal, and then provide the rapidly-growing brain room to grow. The bones of the skull are connected by tough, flexible tissues called sutures. There are several of them, and they eventually harden into bone as the skull matures, by age 5. Craniosynostosis results when one or more of these sutures hardens prematurely.
Q: What is the big deal when the suture fuses too soon?
A: Several things could happen. The most common issue is that the brain can’t grow in its normal shape, so it pushes the head out where the sutures are open. The result is that the baby's head can become badly mis-shapen. In more severe cases, the growing brain doesn’t have anywhere to go and pressure develops in the brain cavity. Thankfully, Luke doesn’t have this type.
Q: How common is this?
A: It’s not common at all. Only 1 of 2,000 babies have this condition. Luke has premature fusion of the Sagittal suture, which is directly at the top of his head, running from just above his forehead straight back to the back of his head. It is the most common form of craniosynostosis.
Q: How is it fixed?
A: Surgeons perform a craniectomy. They literally will cut out the portion of his skull that is affected. They will also do some other things to free up the space for his brain to grow, but the removal of the fused suture is the crux of the surgery.
Q: It sounds awful! Are you scared?
A: Yes, of course we are.
Q: Will this impact his brain?
A: No. The brain is sealed in a tough pouch called the Dura. This surgery is on his skull and they don’t plan on puncturing the dura.
Q: How long is the surgery?
A: Less than two hours.
Q: When is the operation?
A: November 16th.
Q: How long will he be in the hospital?
A: Three or four days.
Q: Where is it going to be done?
A: At UCLA Medical Center. We are fortunate to have so many great facilities to choose from. We visited with surgeons at Children’s Hospital of Orange County (CHOC), Children’s Hospital of Los Angeles (CHLA) and Loma Linda before settling on UCLA. They were all excellent, but we felt the best about the team at UCLA.
Q: Will he need a blood transfusion?
A: There is a very large blood supply to the head, so he will likely need a transfusion. The good news is that he has the same blood type as me (O+), so I will be donating as much as he needs.
Q: What is the prognosis for recovery?
A: The success rate for this procedure is excellent. Other than a scar on his scalp that will soon be covered by hair, nobody should ever be able to tell he’s ever had anything done. Someday we will tell him about this scary adventure during his first few months of life.
Q: He got sick and had to spend a week in hospital when he was a newborn. Is this condition related to that illness in any way?
A: Not at all. This is a condition he was born with. That was a random bug that made him sick for a few days and went away. Probably came from his sister (thanks, Grace!). In some ways it was a blessing, because we took the opportunity to ask the neonatologists at the hospital about the shape of his head, and by the time we brought him home, we had a referral to the surgeon who diagnosed his condition.
Q: When and how did you first notice this?
A: He was born via C-section, and I noticed the minute he was born that the shape of his head wasn’t quite right.
Q: Is there any risk of developmental impact?
A: There are some types of craniosynostosis that are connected to developmental syndromes, but thankfully, Luke does not have that type. He should be just fine.
Q: Is this a genetic condition?
A: Not likely. There is no family history on either side.
Q: Then what is the cause?
A: We don’t know. There are several theories but none have ever been proven in a proper study. Everyone keeps telling us we are just lucky.
We appreciate all of the prayers and kind wishes. We will keep everyone posted after we get home right before Thanksgiving.
Monday, September 3, 2007
Melissa's parents spent Labor Day weekend with us, and her dad brought a baseball and his mitt, ostensibly to play catch with me in between "honey do" projects or assorted babysitting.
Well, Grace decided that she wanted to play catch with her grandma, (she calls her "Omi", which is German for grandma) . Unfortunately, Omi was on the receiving end of one of Grace's fastballs...and it was caught on videotape.
Lest I divulge too much, click the video:
Friday, August 31, 2007
Some people think having to share a birthday is a drag because they only get half of the spotlight. Quite to the contrary, I always felt that made me special, and that in a family of five children, that my sister was special to ME. Indeed she is, but not in the "special olympics" sense.
So today we celebrate our birthdays. We live far apart so we will have to make do with a phone call. She always identifies herself as "your sister" which is specific because she is the only girl, but it still strikes me funny.
This morning, I asked if Grace had anything to say to her Aunt Marci:
Happy Birthday Marci!
Saturday, August 25, 2007
Well, our not-so-little boy now weighs 9 lb, 10 oz, a whopping 20% increase since his birth! Wow. The nurses at the NICU, who are normally used to dealing with preemies, were amazed at his appetite, and warned us that he would eat us out of house and home when he becomes a teenager.
We can only hope. We thank God that he is well and home.
Wednesday, May 30, 2007
I just returned from Hong Kong and brought back a couple of traditional silk outfits for Grace. She seemed to like wearing them as much as I enjoyed snapping photos. I particularly enjoyed shooting pics in the bathroom as she checked herself out in the mirror.
Check out more at http://picasaweb.google.com/mmfriedl/GraceMay
Tuesday, May 29, 2007
Grace just turned 2, and she and her 20-month old friend Sydney celebrated with cupcakes together. We don't often give her sweets, so this was a pretty new experience for her. I think the same went for Sydney, but they figured out what to do with their cupcakes. It was priceless. [Grace is on the right. Sydney is on the left]
Wednesday, May 16, 2007
We had this done with Grace when she was around 30 weeks along, but she was sleeping with a hand over her face so the images were very poor. This time, the baby is 28 weeks and so has more room to move around. Melissa drank some juice right before and the baby was very active, so the images are much better.
We got some video, and may try to post it later, but for now, here are some images. Very cool!
Oh, we still don't know what we are having, and told the doc to make sure he 'stayed north. Click here for more pics: 'http://picasaweb.google.com/mmfriedl/4DNewBoo
Thursday, April 12, 2007
Wednesday, April 11, 2007
She did, and BOTH got hired! They spent a busy day in Malibu shooting countless poses with Grace in a highchair and Chickee trying to look natural while looking at both Grace and the camera.
They told us that the photos would be used in two catalogs. Here is a shot that landed in the first one.
In mid-February, we were shopping for stuff at a baby store and after we were there for a while, a clerk came up and asked to Chickee, "were you two in a Graco catalog?"
They had recognized them! And because we hadn't seen the catalog yet, we were really excited to take a stack of them with us. My girls are famous!
My times were as follows:
total is 800m at 2:24.5, or 4:49 mile pace. It's a good start.
I iced my right Achilles aftewards and seem to be no worse for wear. The plan for next week is to do 8x200 at the same speed.