Thank you to everyone who has taken the time to read my blog. If you feel inclined to comment on a post, just click on the "comment" link at the bottom of the post. I would love to hear from you!If you are new to my blog, check out the archived blog posts listed in the left column.
Today the early intervention therapists came over to visit Sylas. He was awake and active just before they arrived, so what would you expect... Sylas went into a deep sleep when they arrived. Fortunately, he finally did wake up so he could show off his moves. I laugh at myself because I am so proud of what my 3 1/2 week old son can do. He is right on target in all areas of development for a 1-2 month old! I am sure you are thinking "what is a newborn suppose to be doing other than eating, peeing, pooping, and sleeping?". The therapists evaluated a multitude of developmental skills such as his ability to visually track a moving object, focus on my face, make a variety of noises (grunting, crying, ect.), bring hand to mouth, and raise head while lying on stomach. The plan is to "monitor" him for the next few months and the therapists will intervene as needed.
Great news!! Sylas had his appointment today with the cardiologist for an echocardiogram and EKG. The doctor spent about 30 minutes looking closely at Sylas's heart and not saying much. I wanted to blurt out a bunch of questions, but I remained quiet and patient. Then he said, "Well, it appears tissue has grown over the opening of the VSD." I was completely surprised considering I was originally told that the VSD may need surgery or it may take a year to close on it's own. Wow! Sylas also has a small ASD or PFO which are both openings in the wall between the two upper chambers (atrium) of the heart. This has decreased in size and the doctor is not concerned about it. The pulmonary hypertension appears to have nearly normalized. Hurray! Do we have a green light to travel to MN............YES!! We can wean Sylas off oxygen and follow up in 6 months. It was a great day! Thank you for your prayers and encouraging comments, Sylas has come a long way in only 3 1/2 weeks.
Yesterday we had the re-do Mother's Day. The beach was lovely, the water warm, and Brett put a lot of sweet effort into the day. I really wanted to try out my rad surf skills, but I didn't want to put the other surfers to shame, so I remained in my beach chair and ate Pringles instead. Sylas napped most of the time but awoke briefly so I could snap a few pictures of his first beach day. Sam and Sophie especially enjoyed the watermelon "bowls" that Brett created from chopping both ends off of a watermelon. I truly have an awesome husband and kids.
Today I washed Sylas's hair and it dried sticking straight up. Crazy hair (see picture)!
Tomorrow is a big day because we are flying to Oahu for Sylas's cardiology appointment. The plan is for Sylas to have an echocardiogram to determine the status of his VSD and pulmonary hypertension. The cardiologist will determine whether Sylas is ok to make the long flight to MN this summer. We will pray for the good news!
Yesterday Sylas had his weekly weigh-in at the doctor's office. Once again he came through with flying colors - he gained 6 oz! It may seem like a tiny bit, but it is exactly what is needed right now. He is eating great, sometimes too much and his tummy will get upset.
Sylas is starting to look like a teenager as he now has a darn good case of baby acne. Sam had the same thing when he was a few weeks old, and I remember being a first time mom and worrying so much about it. Good grief, I worried about everything!
Tomorrow Sylas will have his first beach day. On Mother's Day, Brett was dreadfully sick so we ended up not really doing anything other than making sure Brett had a bucket near him. He felt terrible that he could not carry through on his big plans for the day, so tomorrow we are having a "redo" Mother's Day. The only info I have is that it involves the beach, a sun canopy, and a grill. Sounds good to me!
Happy Mother's Day to all of you mothers out there! What a wonderful thing to be, a mother. I am so blessed to have my mother. As you know, she has been staying with us since before Sylas was born, to help with the kids and Lola. Last night, so we could get some sleep, she stayed up with Sylas for two of his nighttime feedings. What a wonderful Mother's Day gift!
Sophie has been asking me why her baby picture is not on here, so I thought this would be a perfect day to post baby pictures of all of the kids. In order from top to bottom: Sylas, Sophie, Sam. It is hard to tell from this picture, but Sylas has the same chin as Sam.
Today we went in to see Sylas's doctor for his weekly checkup. Hurray, he gained weight and is now 6 lbs 8oz which is slightly more than his birth weight. He is doing such a good job eating now so I would have been really disappointed had he not gained weight. Oh and guess what? We have been trying to do "tummy time" with Sylas everyday to help strengthen his floppy neck muscles. Tonight while on his stomach, he lifted his head independently and turned it to the other side! I ran around the house telling everyone. So exciting!!
Here I am posting for a third time today after not posting for a week! I mentioned previously about the radiology doctor who did the 20 week ultrasound. Remember how we had another experience with him a week before Sylas was born (see 4/21 post)? I have a follow up story...
Sylas was transferred to the NICU shortly after he was born. Later that day, Brett and I were riding the elevator to the NICU floor so we could visit him. Guess who was on the elevator? The radiology doctor!! Of course, he recognized us immediately. He congratulated us, was very sincere and kind, and inquired about the baby. Brett and I talked about how it could not have been a coincidence that he was in the elevator with us. I think that God gave us the opportunity to learn that while people may not always say the most appropriate things, that does not mean they are aware of how their words are taken. It was obvious that the doctor had a good heart, which we would never have known without the elevator experience. It was also obvious that he was affected by the interactions with us, so I am pretty sure that he will alter the way he speaks to expectant parents in the future.
A few people have asked me about Sylas's name and what it means. Sylas stands for Man of the Forest. This meaning is quite appropriate as Sylas was born on Earth Day. Sylas spelled "Silas" was also a missionary companion to Paul and Timothy in the Bible. Here are a few pictures of Sophie helping with Sylas's sponge bath. She was so excited to help since she LOVES "her baby Sylas".
We are home! I can't believe how time flies! Sylas was discharged from the hospital last Wednesday afternoon, but we were not able to fly home until Friday morning at 6am because of regulations with Sylas's oxygen and the airline. We got home just in time to attend Sam and Sophie's May Day festivities at school. I have been having problems with the slideshows that I downloaded. Last night when I checked the blog, the last two slideshows were gone! Today they seem to be there, so I hope you have been able to see them. The following slideshow shows pictures of us preparing to leave the hospital. After Sylas was discharge from the NICU, he was transferred to the transition unit. The hospital is Kapiolani Women and Children's and was named after Queen Kapiolani. One of the slides show a picture of her. Sylas did great traveling home on the airplane. It was my first time riding in a prop. plane and I was a bit nervous but it was not going to stop me from getting Sylas home! We took the first plane out on Friday at 6 am, so we got up at around 3:30am. No problem, we were up anyway for Sylas's early breakfast! The final picture is Sylas relaxing in our hotel room. It was actually nice to have a few days to get used to Sylas before returning to our crazy routine at home.
My name is Elena, and I am a 36 yr old mother of three fantastic kids, Sam 8, Sophie 5, and Sylas born April 22, 2009. I began this blog when I was pregnant with Sylas, shortly after finding out about his sweet extra 21st chromosome. My husband and I have been married over 12 memorable years. I am mostly a stay at home mom, but I work occasionally to keep up to date with physical therapy and my specialty, lymphedema therapy. I am guessing that my next passion will be learning about the pediatric realm of P.T, but likely I will be on the other end as a client's mom.
I enjoy gardening, baking, looking for sea glass with the family, ...ect. and learning how to do this "blogging" thing. I feel blessed with everything in my life.
The Big Sister
The Big Brother
2008 Christmas Family Picture
Baby in Belly!
Baby at 27 weeks!
Baby looks very similar to u/s pictures done at 20 weeks when we found out about his "enhanced" chromosomes. He looks a lot like Sam as a baby.