Potty Training and other Adventures

Well, Let's just get it out of the way and say that potty training is about as much fun as riding in a hot air balloon only to discover that you forgot to go to the bathroom before you left the ground. I decided to let Hayden go naked the first day. That worked great except we were land locked inside our house.(We did have a couple of escapes to the mail box--I wonder what the neighbors think) However, there were no accidents. It was really a joyous day. Hayden learned where we keep our stache of M&M's and all was great. Then day two arrived. Before I even got out of bed, Hayden had pooped in his diaper. Well, not big deal--since he had held it all day yesterday, I thought we were bound to have it happen. I didn't scold, just encouraged. I think that's what you're supposed to do. Then, by noon we had had two more accidents and I had a Dr.'s appointment to get to. Let's just say that I took the sissy way out and put on a diaper.
This I did to save myself any humiliation in public. It seems everywhere I go, people are dying to help me. I know I must look a sight. Hayden has learned to hold onto my back to get down from the shopping carts and I have learned that if you don't want Landon to throw up, you constantly hold him. Then, when we go to the Dr.'s office, I have to strap Hayden in the double stroller, just to keep him in one spot. I have learned that candy usually works--unless you're waiting for the GI Dr. and then as soon as he walks in, your son spills skittles all over the floor.:)I could just imagine Hayden having an accident in a Dr.'s office and decided to take the safe route.
Day three--I decide to go back to naked. It was working great. Our morning had just begun. Hayden was playing in the bathroom, right by the toilet, I was getting Landon's feed ready when I hear Hayden yelling for me. He ran out of the bathroom looking scared. I thought he had seen a spider or something. Nope. He had pooped on the bathroom rug and it scared him to death. So I said to myself, "Self, he's just not ready."
Day Four--We wake up, Hayden is playing and then he says, "mommy, I need to go poop." I thought he was joking, however, he was not. Is there any rhyme or reason to potty training? Don't applaud yet. After that, he doesn't want to go potty much, however, he keeps saying that he wants a bike, which is what daddy promised if he would go poop in the potty about a month ago. He has an amazing memory.
Halloween was so much fun for him. When we explained the holliday, he said, "Let's go Halloween, put the candy in the pumpkin!" It totally reminded me of Jerry Seignfeild's story--"Bing-Bong. I'm superman, look at the pants."

As for myself, I am just treading water. We are still having GI issues. Everyone pray that landon will not react to my breastmilk by bleeding. We need him to learn how to eat and he will not drink from a bottle. I am amazed at the little temper he has developed where eating is concerned. He has flat out let me know that he's not interested in a bottle, no matter how I try. We have been off breastmilk for three weeks and are just about to reintroduce it. I believe in miracles, if it's the Lord's will.
Serge is super busy. We're on week seven, I think. Only three or four left to go. He made hayden a toddler's bed. Ofcourse, it duos as a couch. Hayden loves it and even though it's not totally finished, he sleeps in it. We have just some sanding left to do and some design for the back board.
Landon is growing. He is almost holding his head up. He's at least 11 lbs. and that is something. He actually has bum cheeks! We've been waiting so long for this to happen. It's a big deal for him. If only mommy's could give away some of their rear ends, this could've happened a long time ago. He smiles a ton when you talk to him. He really is such a blessing to have in our home.

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

Look at me! I'm practicing!

I'm coming home in a couple of days!

Sleeping in my brothers' room.

My so called life

So here's the scoop! A week ago, I changed a diaper that had frank (red)blood in it. In a nut shell, the GI doctor tried to say that he was having an allergic reaction to my breastmilk. What a crock! Possibly could it have been that he was allergic to the cow based formula you were adding to my breastmilk? Needless to say, after a lot of X-rays of the abdomen(medically called a KUB) and a whole week of not eating, he is back on just my breastmilk. I keep trying to tell the doctors to just leave my breastmilk alone, but now I have proof. The initial bleed was probably caused by the huge dose of asprin Landon is on to keep his shunt open. So the cardiologist took that down to 1/2 of what it was previously and we gave his gut a rest. They did find one suspicious looking KUB where they thought he had NEC, which is a medical term for an infected loop of the bowels. However, it looks like it may have just been a scare. We hope that is what it is. They have me off of all dairy products, just incase he has an allergy to cow proteins. Can I just tell you that I really miss icecream?! But, other than that, I really didn't have that much anyway.
As far as feedings, it's kind of hard to work on something you're not allowed to do. He latched on and sucked three times the day they took him off feeds. Oh wells, back to square one with feedings. Today they restarted him and he's getting fed 5cc per 3 hours. That doesn't amount to much and so he's on a nutrient IV called TPN. OH, I forgot to add that he lost weight without his feeds and then had a pressure scare because they were diaresing him too much. So anywho, not we have a stable pressure and a pink baby again--Yeah! I just pray that he gets stronger. I know this is so crazy and I just want to be home, but I'm so thankful that these things happened while we were still here because I don't want to have to come back to the hospital once we get home. We know it's in the works as soon as we get the medication thing stablized and the eating thing down.
Thanks all for your prayers. I have seen so many miracles and know that the Lord hears our prayers.
Hayden and I are going to Knotts Berry Farm tomorrow for Serge's compay party. Serge is not going to be attending, as Brigham is coming into town with BYU football tickets. Since I can't go see Landon, I figured I should do something fun with my sweet Pea, Hayden. He is so cute with Landon and gets very upset if he doesn't get to visit Landon. Although, when he does visit, he is more interested in Landon't teddy bears and stickers.
Tony the tiger and the Keebler Elf came to visit the hospital yesterday and we got Landon's picture with them. They left us a back pack big enough to fit Landon and about two other babies in it. Needless to say, Hayden was very excited to inherit a back pack filled with goodies.
Alas, Serge started a new job this week. He is back working for Marshall Engineering with a nice pay raise, full family medical and a shorter commute to Glendora--Lots closer than Burbank!
Serge and I celebrated our 3rd anniversary on Tuesday. Let's just say that I have a very wonderful husband who totally pampered me. If you would like him to speak to your husbands or future husbands, just let me know. I gave him an $80 gift card to rockler and let's just say that I felt like my gift was exceedingly stingy after his gift to me. Not to be mushy, but I have to tell you that I don't know what I did to deserve someone so wonderful, but marrying Serge was one of the best decisions of my life.

Look who's smiling !

Getting warm after my bath.

August 31

Well,
things are still going good. Landon is still breathing on his own! I thank the Lord every day that he does. He is getting stronger, but still not gaining weight. We are still working on eating issues. He is fed through his nose tube(NG tube) continuously. We have been working on getting him to suck and swallow. He can do both independantly, but the two together are still not going well. They want to put a stoma in his stomach, not for permanent, they say, but I'm not sold on the idea after only a few days of trying and only once a day. So this weekend, we are praying for another miracle--the coordination of sucking and swallowing--ie eating from a bottle. He seems more interested in mommy, than a bottle, but he still won't suck from either. He does suck on a passifier though. As soon as we get eating down, we will be going home--which we hope will be in the next couple of weeks.

I have a cute story to tell about Hayden. Sunday was Kevin Hyatt's farewell--our bishop's son. He stood up and said, "Good morning." Hayden enthusiastically replied , "Dood morning!" That got the audience roaring, which only spurred Hayden on. "Dood morning, dood morning, dood morning." I thought I would have to take him out of sacrament meeting before he would whisper it.
Just now, he's asking, "hey hooties?" which in Hayden language means, "play cooties.", you know the game where you put a bug together in pieces. Maybe I could teach him the /k/sound. Anywho, thanks for your continued faith and prayers. We love you all. I'll try to get more pictures of Landon up.

With the vent & w/out. Miracle!

Do you believe in Miracles?

Well, we have been praying for a miracle and the Lord has answered our prayers. Miracle of all miracles, Landon is breathing without the help of a ventelator!!!!!!! Here's the scoop. The Dr.(mirza) was taking it really slow with Landon because he had had him before and also because Landon had been on the ventelator for over eight weeks. For those of you unfamiliar with vents--that's a really long time and kids who are on it for that long have a slim chance of breathing on their own. And, the last time we extebated(take out the tube), was probably the hardest day of my life. It's not an easy thing to see your son struggle so hard to stay alive. Sad, it was on Serge's birthday too.
Well, so Landon was at a rate of 10 for about four days(which is very close to doing it on your own). Then the Dr's took him down to 8 for another couple of days. We were informed that Friday, the 24th was going to be his big day. At about nine in the morning they took him down to a rate of 6 and took a gas to see if his CO2 would rise. It was good and so they went ahead and pulled it out. We had to step out of the room for about 15 min. They came and got us and told us that he was doing good. I went in first and Serge stayed with Hayden. Then they let Serge and Hayden come in. Landon was very horse(who wouldn't be with a piece of plastic in your wind pipe for two months), but he was doing good. It was the most beautiful sound in the world to hear him breathe.
That day they gave him a couple of breathing treatments to help the swelling in his throat. He is satting in the high 80's to 90's. Today I heard his little cry and thought I had heard the most beautiful thing in the world. I haven't heard him cry since the 21st of June, when we took him down to surgery. I will never take that for granted.
We still have some hurdles to jump over. Landon still needs to learn how to eat. He wasn't very interested in eating from a bottle today, however, he kept rooting around every time mommy would hold him. That's a good sign. Still no sucking and he has to be evaluated and cleared by speech therapy to make sure he is swallowing properly. However, he has taken to his passifier. Most kids have an aversion to plastic after having a breathing tube in for that long.
Another huge blessing and miracle is that we have been able to hold Landon pretty much whenever we want to. Holding him is such a sweet experience. He is such a great blessing in our lives. We want everyone to know that our prayers have been answered and that we have truly witnessed a modern day miracle. Landon was off all oxygen after the first 30 min. of extebation--a miracle and his breathing is good. He's breathing from his diaphram and not nasal flaring as much. Pretty much the doctors are shocked and highly pleased. I know that the Lord touched Landon and helped him to learn how to breathe.
"Who shall say that Christ did not perform many mighty miracles?"
Thank you all SO much for your prayers!

Landon's update and the twins are here!

Hey all,
today is a new day. Landon has been put back on feeds after a day of throwing up. We're hoping that he can keep them down because they are good for him. He's pooping like a champ. He is down on the ventelator at a rate of eight and seems to be doing good. For those of you unfamiliar, that is pretty much like breathing on your own. He's not in any distress that I can see, except that he gets the hiccups!
Charlotte had her babies on the 21st--see the picture of Sydney. Sadie has yet to have her picture posted, as she's down in the NICU. They are waiting to see how she will do with her heart. So far, she's holding her own! Thanks all for your prayers and support. Keep praying that Landon can breathe on his own. Love you all!

Fwd: Sydney

Well, here is the latest for our Landon. He got moved out of the cardiac unit. I was pretty worried, however, my worries are starting to be resolved. They need beds in the unit and so they sent him over to PICU(pediatric Intensive Care Unit), which is just down the hall. They did a CT scan of Landon't head. I asked about the result today. It looks like the ventricle size(the space inbetween his brain lobes) has gone down and the bleeding has amost been reabsorbed!!! There are miracles happening for our son! However, his phenobarbital level is extremely high--so they may have to cut back on his anti-sezure medication. So anywho, because of that he has been super sleepy the past couple of days. We are still working on his breathing. Dr. Triman is his attending Dr. for the next couple of days. We like him. He is agressive on the vent, however, he knows Landon and has worked with him a lot. We are very hopeful that Landon will continue to progress. I think his brain is waking up finally and I know that Heavenly Father is blessing him. I truly believe that Heavenly Father is an unchangeable beeing and I know he has done miracles in the past. I believe we will see some yet with Landon.
Hayden is doing great. We love having him around. Grandma Hauver left on Thursday and both of them were pretty sad. Let's just say that grandma Hauver was crying and Hayden needed to talk to her on the phone lots the next day. He is learning how to talk more and more. Pretty soon he'll be spitting out paragraphs. I love listening to his conversations. He is always looking for helecopters that visit Landon. They have seen eachother a little bit this past week. Hayden says--Landon hurt(and he points to his breathing tube.) Then he names all of Landon's toys and says bye Landon. Landon just looks at Hayden with awe, just staring and totally fascinated. I think they love eachother already.
Love you all, Please keep praying that Landon can breathe well.
Sara

Landon's progress

Landon is continuing to get a little stronger. We are still praying that he can learn how to breathe. Tomorrow they are going to try to come down on the rate of the ventelator. If you could all keep him in your prayers. I know it will help! I got to hold him today. I don't think I will ever take for granted holding your baby any time you want, or hearing them cry. Landon and I had a great time. It only took aobut 20 minutes for the nurses to get him situated so that I could hold him. O.k, maybe 10, but it seemed forever. We sang songs and talked. He pretty much loved it!

Landon's breaking in his new bed! Lovin tummy time.

August 12

Well, another day and some improvement. Landon is on the slow and steady track. I keep telling him that he doesn't have to be an over achiever. He has opened his eyes a lot more today. I've started giving him his nightly rub downs. I don't know when they will start his physical therapy up again. There is a cute old lady who comes and works him with his range of motion. Most of the time he just sleeps through it.

Anywho, He has had quite an eventfull day. He had his A-line(arterial line) removed from his leg and his "blake drain" which is the catheder that drains his heart area after surgery. He has stopped leaking out of his old dialysis opening--which they just took out two days before his second surgery. He's still retaining fluids, but the good news is that they are feeding him breastmilk again and he had a great poop. He's been known to explode poop on the nurses and once he splatted mommy's shirt. That was a memory I'll always treasure:)

We're still working on lowering his bloodpressure and getting him to breathe on his own. Now that they finally found a big issue in why he has failed to come off the vent several times, he is weak and has been on the vent for 7 weeks. So it is yet to be seen. However, we know that miracles can happen, which is what it's going to take.

Hayden had a fun birthday. He is starting to exhibit the usual fun two behaviors. We ask him how old he is and he quickly responds, "wun." This makes me laugh, because he never would say it when he was really one. He likes to tell fibs, I think. When people ask him what his name is he tells them, "Max." I'm not sure where that one came from--Love that boy! Just think, two years ago, I was quickly approaching 24 hours in labor and going to an operating room to have my boy.

Landon's update

Landon is still recovering. Today he is continuing to have high bloodpressure. However, he is not de-satting as much. Last night he had a scare where he went down to 3% oxygen in his body. For those of you unfamiliar with saturation(sats), that's totally scarry! None of that today. He is still in a lot of pain. Serge and I think that he looks so much better than when he came back from his last surgery. It is still to be seen how he's going to recover. He opened his eyes quite a bit today. THat's encouraging! He cried a little bit, which is totally ok with me. You can cry when you just had your chest ripped open for the second time in seven weeks. He's totally a fighter. He's got such a sweet personality of wonder and excitement for life. He's my hero!

Hayden Turns Two

Hayden turns two tomorrow, August 12! He has had a lot of growth and a ton of memories that I will treasure. He has learned to walk, speak, swim, blow bubbles in the pool, drive his mommy crazy at times and melt my heart most of the time. He has been such a bright spot in my day, espcially lately. He loves to give big hugs and "squeeze a mommy." One of my favorite things he has done is learn how to talk on the cel phone. He will pretend like he's calling Landon and the conversation goes something like this. "Nandon 2 2"(which means Landon in room 2 bed 2), "O-Tay, Uh, O-Tay, Talk-t-vader, bye" (which means talk to you later, bye.) He gallops everywhere, which just makes everyone laugh. He is very friendly and is the first person to say hello to a stranger. Everyone thinks that he is 3 going on four because of his size and how well he talks. He loves to tell himself "no" when he knows he's not supposed to get into something, however, he doesn't always listen. A mother could not love a son more. He is such an amazing blessing in our lives

Beware ladies!

Great News,
Landon is out of surgery and the surgeon said things went well. They fixed some restriction and clamped off the pulmonary artery. he looks great for just being out of surgery. we are now back to the same game of "waiting and seeing." We thank you all for your love, prayers and support.
-Serge

Fun at elephant bar!

Hey all,
We just wanted to let you know that Landon is going in for his second open heart surgery today. They did a heart cath yesterday and discovered extremely high pressure in his lungs. so we're hoping the surgery will work today where they remove the heart sac and tie off the pulminary artery. We'll keep you posted