The Weekend

Photo and video editing at www.OneTrueMedia.com

We have been enjoying a lot of family time during the past couple of days. On Thursday night, I took Chloe to our local library to see "Don't Bug Me." She loved the musical program and she learned all about insects as well. Chloe is about to turn two and it's such a great age! I can have conversations with her since she is speaking in sentences now, she says her ABC's, she counts to 10, she occasionally goes on the potty, and she loves to listen to stories and understands them as well, and loves to attend special programs/events around town. I am having so much fun with her! She is moving from babyhood to becoming a little girl. She loves to wear my jewelry, put on my shoes, and does not like to be messy:)) Such a girly girl! This past week, we had such a "normal" problem that I was so happy and wanted to throw a party! Wyatt and Chloe were sitting next to each other and Chloe hit (gently tapped) Wyatt on his shoulder and he began to cry. So Chloe had to apologize to Wyatt for hitting him. It was there first real brother/sister fight. It felt really good to have a normal problem.

Wyatt's personality is really coming out as well. Since he encountered so many "strangers" from being in the hospital for so long, I thought he would not develop stranger anxiety. However, Wyatt is so sensitive and sometimes shy around people... it's too cute:)) Whenever Chloe cries, so does Wyatt. Whenever an unfamiliar person talks to Wyatt, he gets a scared look on his face, looks at me, and then cries.... and the cutest thing of all... my friend's mother came over to visit and I was holding Wyatt. When she talked to Wyatt, he nuzzled his head into my chest because he was so bashful! Why is this cute to me? Because Wyatt has a sense of family and knows that he belongs to us:)) Wyatt is also imitating us. Whenever we wave hello or goodby to him, he waves back to us and smiles. Whenever I shake my head "no," he does the same and laughs. Tummy time is a struggle and so is eating. We are making small baby step progress.

Today my college friend Stacy traveled from northern Virginia to visit with her two kids, Kaityln, who is four and Connor, who is 3 months old. They are adorable kids. Stacy, Whitney, and my other friend Laura and myself were all Hall Directors at Lynchburg College together and we still continue to get together throughout the year and keep in touch. Gone are days of sitting around and gossiping while drinking a glass of wine! We were all chasing kids all day, holding babies, teaching the lesson of sharing, while of course... drinking (less than one glass) of wine and gossiping, and eating our lunch in shifts! Things sure have changed! But for the better:)

Last Thursday I watched the show Hopkins and it brings back so many memories of the early days with Wyatt. Two of Wyatt's doctors were featured on the show with the segment of the baby that had an enlarged heart and needed a heart transplant- Dr. Berkowitz who put Wyatt on ECMO and was my "mentor" when it came to Wyatt's care and decisions that had to be made, and the other Dr. Fackler, who was very instrumental in getting Wyatt off ECMO. Dr. Fackler is a genius and experimented with different ways to wean Wyatt off ECMO since the traditional way was not working as planned. It worked and I owe it all to him! I remember that I even had a question for Dr. Fackler one day and he left to go home before I got to talk to him. As he was walking out to his car in the parking garage, he called me and talked to me and answered all my questions... after his long day of working in the stressful PICU, he remembered that I wanted to talk to him. In the Hopkin's show I was a little surprised when the doctors were talking about what to do for the baby with the enlarged heart and he said, "let the child die." The doctor's disagreed because the test results had not come back yet. In the end, the child did get a heart transplant and survived. Now I am sure there is more to the story and TV just shows you a tiny clip, but I was surprised Dr. Fackler said this comment because he tried everything possible for Wyatt's recovery. I remember during Wyatt's last surgery, Dr. Fackler was his anesthesiologist and he walked in the operating room saying, "let's get this show on the road and knock this kid out!" I laughed because I knew he was joking... I am hoping that Dr. Fackler did not mean to say "let the child die" and there is more to the story... in his defense:) Click here for more about the episode. One thing I do like about Hopkins is that there are so many doctors from different services caring for your child that when a major decision needs to be made, usually there is a discussion with other colleagues and sometimes disagreements, but hopefully in the end, the right decision is made. I remember the night after Wyatt's surgery, Wyatt was extremely fragile and was bleeding alot. The surgeons, Dr. A and Dr. C and the attending physician stayed by Wyatt's side because later I was told, they didn't think he would make it through the night. We got to witness a powerful discussion between brilliant doctors about whether to give Wyatt Factor 7, the blood clotting drug often used in Iraq. The two doctors read research articles on the web, discussed the dosage, etc... all by Wyatt's side while we sat in the background just watching them do everything possible to save our little baby in the wee hours of the night.... that's what I love about Hopkins.... eventhough it's a big hospital and you can get lost in the mix, it also seems very grounded and there are many times the "team" meets before any major decesion occurs. This can be good or bad... but hopefully more good comes from it.

Other CDH babies- I was not following this story (I just discovered it) but another CDH baby passed away- Daniel, a beautiful little boy who was born in December. Our thoughts and prayers are with their family. On Jack's blog, his mom Vicki reminded us all that the survival rate of CDH is around 50%. Babies that survive CDH are miracles... It's a little know condition that needs more awareness and research. Skyla's page also has a nice tribute to Daniel.

Also, it looks like Sofia reherniated. Her parents picked up on the signs fairly quickly and Sofia will be getting repaired shortly after they find out more from the CT scan on Monday. Our thoughts and prayers are with the Miller family as well.

A small world- This blog can be very powerful and I am so happy that I created it. A mom from Canada left a comment saying that she had a son born with CDH in Nov. 2007 and he is doing very well... his name is Wyatt too! I will be e-mailing her soon... but I hear Chloe calling me now so I am signing off!