Sydney

Sadie

Pumpkin patch and Holding Landon on the "towch"

What's up now?

Well, we're back home over a week now and we're doing good. Landon is learning how to breastfeed. I know the doctors put him back on formula, but then we went to see a GI specialist and he gave me some things that I should avoid and put him back on breastmilk. SO--in a nut shell, I can't eat anything! Just kidding, I can have protein in the form of some meats, no tomatoes, or spicy foods or greasy foods, for that matter, and no soy--which i later found out was the real culprit. Is anyone else amazed that so many things we eat now a days contains soy in some form?
Some questions that were asked by Boris were good. No, the doctors didn't say what was causing the bloody stools, just that it was something in my breastmilk. Usually, for doctors, the easy fix is putting them on formula. I found out, when I got home and started to slowly illiminate things from my diet that it was soy. As far as the formula goes, it he was allergic to the cow protein(not lactose intollerant), then even the formula they had him on was derrived from cow's milk. However, they claim that it is pre-digested and therefore, not supposed to cause reactions. Landon vomited because it made him gassy, fussy and had more calories. I thought they had origionally watered down the formula. however, they were making it thicker by mixing it with less water to make it higher calories that it was supposed to be mixed at. They do that for "reflux babies." landon is a totally different baby on formula. Don't get me wrong, I think if it worked for him, I wouldn't make such a big deal.
So the thing about throwing up--they were 'fine' with him vomiting a whole feed once a day. however, his blood pressure continued to go down--as there were less fluids circulating in his body. It was alarming to me, but not to the doctors.
Landon is learning how to find his fists. it's so fun to watch him discover his world. He also got his first haircut. I hate to say it, but he almost had a mullet happening in the back. I am amazed at how long some of his hair was. Let's just say that he could've had a comb over in some spots.
Hayden is learning how to cook--or thinks he is. He amazes me at what he picks up. I love it when he disciplins himself--I always know that I should pay attention when he calls himself by his full name, " Hayden Mayer," or when I hear his intake of breath, "OH. OOOO Hayden!" That's usally when I find him dumping out the BBQ sauce, or eating chicken bullion cubes, or pouring OJ all over the carpet. It cracks me up when I tell him, "don't get out the waffle iron." and then he tells me, "only daddy gets out the waffle iron." Well, that statement's true! The other day he told me in the car, "Don't close Landon's eyes." And I confirmed that he shouldn't do that, to which he replied, "makes him sad." and I again confirmed this. Then he added, "makes mommy really upset." The boy is learning!
We had a great time at the Cal-Poly pumpkin patch. Hayden walked all over, declaring, "there's another pumpkin," and then running to it. There were roughtly about 5,000 pumpkins. I enjoyed watching him on the tractors.

Here's some cute pictures of Charlotte's twins. They are adorable! Dark hair is Sadie, who had open heart surgery and the blondie is Sydney. She's in a brace to fix her hip displasia--hopefully only a few more months in it until her hip sockets form around her bone. The cute little thing was scrunched up pretty tight in eutero. both are doing good--althongh Sadie is fighting RSV, but getting better. PS, RSV is from other people who have colds, not pesticides;)
Looks like I can't upload pictures right now, so I'll try later.
sorry!

Life happens

Well, just to let you all know, we just spent the last week back in the hospital, but are happy to report we are home now. Long story, but here we go. I noticed a few specs of blood in landon's stools two weeks ago. I took him to my regular pediatrician(ped.) and she put him on a formula. She said if he started throwing it up, take him to the emergency room in Loma Linda. Well, he did throw up. I decided to put him back on the breastmilk and then wait until the morning. Oh, by the way, on the formula, no bloody stools. So Friday, the 5th, we took him in to the emergency room, not because it was a huge emergency, but because our ped wasn't willing to deal with it.

Long story short, landon is still throwing up 1x a day when he eats formula. I am on a lovely diet of no eggs, dairy nuts or fish(I've lost a few lbs). However, it took them a week to get us out of the hospital. We did meet another LDS family who has a child with similar heart anatomy. It was neat to talk to them about the progress of their girl--she's almost ready for her last surgery. It helped to calm a lot of my fears--and it made me count my blessings. Their daughter, Emma, is the fourth girl in their family and they have a boy that followed--that's five and now mom is pregnant (5 months along) with their sixth! Mama mia. My hat is off to her.

Something I realized with this last visit is that when we get done with landon's surgery he will operate on only 1/2 of his heart--one atrium and one ventricle. That is amazing. however, when I think about it, it totally makes sense. His heart will only pump to the body and the shunts that he will have will connect all of his returning blood strait into the pulminary artery to be oxygenated. Amazing what goes on to help correct his defect.

Hayden has been such a good boy. I feel terrible pawning him off on others. I missed him something terrible. Serge is striving to keep his head above water with work and school and I'm just trying to survive.

We did get pictures and I hope you all enjoy them.

Sara

Life at home sweet home

let's just say that getting out of the hospital is trickier than it looks. It seemed like at the last moment they wanted to run just a few more tests--as if we hadn't been there for 3 1/2 months! Honestly. And another thing, speech pathologists are not my favorite. With that being said, it is so good tobe home! It is a ton of added responsibility, but it is soooo worth it. When we came home and said family prayers together that first night, it was like heaven being in our home all together.

Landon is doing good. I hate to say it, but he was not ready to come until this time. That's always hard to swallow, but it was true. It took that long for both serge and I to feel comfortable with landon and his issues. Also, Landon was just too fragile to come home until this little while.

So we came home on September 19, 2007 around 4:30 pm we left the hospital. Serge took Landon in the stroller for a "victory lap," he called it. all of the nurses came out to say good bye. It was a bitter sweet memory. We were glad to leave, but it oddly felt like leaving family. They were so good to us.

Almost every room mate he had said, "your kid is so popular. all these nurses come in and we ask them if they are the nurse and they say 'no, we just came to see how he was doing.'" Doctors who had worked with him would drag other doctors in to tell them about the remarkable progress he has made. It is just miracle after miracle. "Look how good the mayer kid is doing," they would say. It's, frankly a far cry from what they said origionally, which was, " Well, it's just the Mayer kid and nobody can figure him out."

After the second surgery when they removed the pericardium(heart sac) he has done so much better. Even Dr. Baily(who is probably THE pioneering doctor of heart transplants on infants), who has done thousands of surgeries commented, that it was so rare to see his issue. It is a miracle that they suspected it in the first place. I call it a miracle.

At home his favorite things to do are lounge in his swing, be kissed by Hayden and poop. Not that they happen at the same time, but he loves them just the same.

He is still working on eating. I had them send us home with a nose tube to feed himn with instead of putting another hole in his stomach for a G-tube. I thought I could work with him at home. Can I just say that miracles happen. When we came home from the hospital, he was taking on a really excellent try 17cc out of 60. Since we've been home and mom works with him on a bad try he takes 40cc. He has taken his whole feeding 2x, but it's rare. Such improvement!

Hayden is keeping me on my toes. He loves to get into things he's not supposed to at the most inconvenient times. Mostly when I'm trying to listen to landon eat. The other day he came out of the kitchen eating a stick of butter with the foil still on it. Today he was whining that he wanted to go swimming at 7am. It lasted until 1pm. Mommy put herself in time out several times. He also likes to have conversations with Landon. "Hi Hayden," he'll say for Landon. He showers him with kisses and loves. today he had to go to time out because he was trying to force Landon to close his eyes. He's talking in full sentances now and it's amazing. I love it when he thinks I should apologize for something I've done to him. "I'm sorry Hayden," he'll say to me. Then he'll say, "that's o.k."

Serge is liking his new job and enjoying school. I'm just trying to get enough sleep so i'm not a bear and to keep on top of the meds. The farthest anything is apart is 3 hours. asprin only 1x/day, Zantac 2x, Lasix and Aldactone 2x, phenobarbital and Kepra 2x, captopril every 8 hours, magnesium sulfate 2x, regalin 4x and McT oil 4x a day and feeds 8x. let's just say thank you to whoever created excel!!!

All of this said, I'm not complaining in the least. it's so sweet to give him a bath, lotion him down, dress him in his jammies, snuggle him close and rock him to sleep. Then have him right there. I must say that it is nice that he sleeps through the night. I love his little baby breath! He sleeps from around 10pm until 8-9am. I ofcourse don't get to not get up because I feed him through his tube and give meds all night, but he is sleeping great. He is gaining weight and just looking pretty good.

Thank you all for your prayers--they are answered