Well, what else to say and think but to try to be positive...
Shyanne officially diagnosed with 22q13 Deletion / Phelan-McDermid Syndrome (PMS)...one of the signs of this very, very rare syndrome is that she could have a high tolerance for pain. That's why I put baby Wolverine. If you know X-Men, the superhero Wolverine has a very high tolerance for pain.
More information can be found at:
Just click on the MEDICAL tab or the FAQ tab and it'll give you a very good idea of what we'll be going up against.
300 diagnosed cased WORLDWIDE.
Tuesday, September 22, 2009
Shyanne was moved out of Pediatrics ICU back to Neonatal ICU. Amazing how these little kids recover so fast. She only has 3 tubes in her now.
Our kids really want her home. Bennet especially is having a hard time with this because he misses her so much. He's cried every single time we leave the hospital. Got a real tender heart.
Bennet and Tyson started soccer. Tyson's team is short a few so Bennet got to play up in Tyson's age bracket. Bennet scored the first 2 goals for the team. Tyson then scored the last 2 goals on the team. I'd like to think that they're going to be soccer pros but they're still young and every dad has dreams of his kid going pro :-)
Saturday, September 19, 2009
Resilient kids...most of them are. I saw her twice yesterday. The first time was in the morning. She responded to my finger when I put it in her palm. She grabbed it and held on. That was nice. She had been inactive since Tuesdays surgery. I was jealous because Jeannine visited her around lunch time and she said Shyanne opened her eyes for her.
We visited her again in the evening with Bennet, Brooke, and Jovee. They're all so excited about their baby sister. They really, really love her. Bennet got emotional and cried because he's worried about her. Brooke and Jovee are very proud of her. Lots of lov'in helped Jovee recover from her neuroblastoma surgery and lots of lov'in will help Shyanne recover fast also. This time the love will be magnified because we're here in Spokane with close family and friends whereas Jovee's surgery was in Seattle.
One of the companies that I make and install signs for gave the kids a goodies bag that consisted of Pez, popcorn balls, and SpongeBob Cheez-It's. That was really nice. All the agents also pitched in to give us a very generous gift card to Fred Meyers and Wandermere Village Cinemas. So very uplifting to see the kindness of people.
The Clayton Ward, like always, was just awesome. So many ladies brought over frozen dinners, food, desserts that should last us at least 2 weeks. Just amazing.
The doctors did some tests on Shyanne's chromosomes and genes. Waiting for results, probably Monday.
Tuesday, September 15, 2009
Guess I should start a blog for Shyanne also now, huh? So the surgery was successful. Yippeee! The nurse and anesthesiologist grabbed her at 7:30 am...they kept us updated every hour and a half and finally we got to see her in ICU a little bit after 1 pm. It was sad to see her all in tubes, wires, cables, etc...At one point right when we walked in, she had so many tubes, wires, cables on her that we saw more of them than her actual body. Just got to be thankful that there's all this technology to help her recover after a major open heart surgery.
The kids and I went to visit Shyanne tonight. She's pretty out of it. Touched her fingers, toes, and head but she was unresponsive. Nurse Kim is taking care of her tonight. She seemed to be a really nice and caring nurse. Nurse Kim says she's doing good, everything, all the vitals are normal.
Got through this round...waiting for her to heal to so we can fight the next round of anomalies, whatever it is.
Jovee's tumor resection was similar to Shyanne's open heart surgery. A lot of the same tubes and lines. Geez!
Two schools of thoughts now: 1) I can be grateful that everything went well with the surgery so far or 2) I can be bitter about seeing Shyanne go through all this.
Everyone, from Jeannine's family to the ward members have been, like always, totally awesome and supportive. Wanda Day and Sheri McCullough have brought dinner over the last couple of nights. And mom Welchly also. We've got plenty of food leftover, plentiful to feed 5,000. I need to go on a diet. Well, actually I've been on a "stress diet", been too stressed to eat.
This is difficult...As Secondhand Serenade sings, "I'm wearing thin down to the core." Trying to stay strong cause I'm papa bear and I'm just supposed to be strong but this is difficult. I think what's been really the hardest is not being able to hold her or have her respond. It'll be at least another week, they say, that she'll be in PICU and then she will move back to NICU. Jeannine and I are planning on 3 to 4 weeks before we'll be able to bring her home.
Sunday, September 13, 2009
Took this picture last night at Sacred Heart NICU. This scene is all too familiar...
The nurse that prevented Shyanne from coming out...we were / are very thankful for her. She knew that something wasn't right about Shyanne but couldn't pin point anything. Call it mother's intuition. Finally Shyanne's heart rate just wasn't normal, going at around 140 beats per minute so she jumped all over that. Anyways, because of her intuition, the doctors looked into doing more tests to eventually find out about the heart.
Saturday, September 12, 2009
Nurse Brenda, Bennet loves swimming, Shyanne in her oxygen tent, Jovee at the bowling alley, Jovee in a tree, Shyanne's first few minutes...
Good news, bad news, indifferent...
Jovee's scans were on September 1st and 2nd, re-staging updated scans. Everything on the CT and MiBG came back stable. Yippeeee.
We had been concerned, like all neuroblastoma parents are, about this round of testing because Jovee had been complaining a bunch about her legs and stomache hurting. A neuroblastoma parent thinks what if it's the neuroblastoma coming back again? Anyways, everything still stable...
We welcomed Shyanne Grace Lim into our family on 9-9-09 at 5:55 am. The delivery was quiet crazy and intense. Jeannine starting having contractions at 11:16 pm. They were 4 minutes apart. Jeannine called to see if she should go in. Hospital said it's up to her. So Jeannine started walking around the house a bit and the contractions started going away. She opted to wait a little bit longer but then the hospital called again and said we should probably come in to get started on some antibiotics for the baby.
Left the house just before 4 am, Jeannine's water broke at 4:15 am just when we crossed the Wandermere bridge, arrived at Holy Family and after preping her she was checked again at 4:45, dilated to 2 cm. No big deal...nurse Brenda checked her again an hour later and Jeannine had dilated to 7 cm...last week Shyanne was head down but this time she was breech...nurse Brenda also felt the umbilical cord at the bottom of the cervix so it was dangerous for the baby to come out. Jeannine's body pushing Shyanne out and nurse Brenda pushing back to prevent Shyanne from coming out because of the dangerous location of the umbilical cord. Anyways, it all happened so fast...Brenda said to me "push the emergency call buttom"...she said, "I need a doctor in her right now!"...Doctor Brash came in, assesed the situation and said we need to operate, need to do a crash C-Section...they took Jeannine out of the room, down the hall (with nurse Brenda's hand still inside of Jeannine preventing baby from coming out), into the operating room...Doctor Brash said I can't come in...what????...anyways it all happened really fast and I just went back into the room, started to cry a little bit out of fear for Jeannine and the baby...
Anyways, 10 minutes later nurse came back and said everything went fast but fine. Wheeeewww!!
Jeannine is recovering. They had to cut her bigger than with Brooke and Bennet because of the emergency situation but she's recovering.
Shyanne had some breathing issues. Heart rate was going up around 140-160 beats per minute. She had to be in an oxygen tent (oxygen bubble). She had to get transferred to Sacred Heart Hospital via Medstar (ambulance, not helicopter). She's got several anomalies but the main issue is TAPVR, a heart defect.
Surgery is going to be most likely Monday afternoon.
Going through a lot of the things that we've already been through with Jovee's cancer. A little different but still emotionally draining. She's just days old and so fragile.
1 in 15,000 get TAPVR. Cardiologist said to me early, "Neither you or your wife did anything to cause this...". I really wonder about that statement.