Emotional Roller Coaster

What I learned/experienced/felt this weekend at the Race For Hope:

• I am so very blessed to have BOTH my babies, some families there have lost both their babies, some have lost one. We are truly blessed.


• I have totally taken for granted the fact that I had two healthy pregnancies prior to the twins.


• Twice as many babies die from TTTS than from SIDS, yet everyone has heard of SIDS and hardly anyone knows about TTTS.


• There is so much pain in remembering all that we went through during that pregnancy. Other parents too, just talking about it or talking about Dr. Chmait, would bring the tears out.


• I am so deeply grateful to Dr. Chmait, and the surgeries he performs. He is such a humble man that he thanked me 3 times for "The kinds words I said about him" during a speech I gave on Saturday night at the reunion dinner. He was thanking me?? I owe him much more than kind words, he gave me two precious lives.


• It was freezing, 50 degrees and raining, us desert dwellers don't know how to handle that kind of weather. The Princess was randomly crying, and the Prince would not come out from under the blanket.


• If your husband is in better shape than you are (mine works at a gym) and he is running in a race and your are walking and sometimes running, make sure you have the bottle that belongs to the baby in YOUR stroller.


• Be grateful to the Lord for every moment you have with your children!The kids fun run before the race. Nurse Mary and Dr. Chmait, we are eternally grateful!!The miracle babies!!

Fetalhope.org is a foundation started by a man whose daughters survived TTTS. He was in charge of the race and is working on raising awareness and giving hope to families who suffer from many different fetal distresses.

At The Beach

After we went to the Aquarium we went to the beach. We just pulled off the main street and walked down a bazillion stairs to let the kids experience the sand. It was just a quick stop but they managed to make a disaster in no time. The prince went into the freezing Pacific Ocean with all his clothes on, He had so much fun, The bulldozer was everywhere, he was so excited he could barely stand it. He loves to explore! The munchkin sat on the sand and put some in his mouth, and the princess had fun watching her big brother and she explored as well.

At The Aquarium

We had an awesome time at the Aquarium Of The Pacific. It was very crowded and we only had a double jogger so it was hard to maneuver around people. I am not used to using the side by side kind of double stroller around lots of people. It was difficult. The Prince got splashed by a sting ray so he was soggy, wasn't expecting that! Also we forget to bring the diapers and wipes in with us, The munchkin was so stinky, especially in the closed up rooms. Luckily we were just about done anyway so we just left and went to the beach.

Organization in the laundry room on a "Thoughtful Thursday"

Okay so I was going to try to do something thoughtful for my husband today and make a conscience effort to do it weekly, "Thoughtful Thursday". My plan was to just be nice and do things for him without him asking and not asking a whole lot from him. Well, the way I should always be treating him but I don't. I sometimes do though. Anyway, I messed up, before the clock even reached 11 o'clock. I was mean to him on the phone. Well I guess I will try again next week. Maybe I can actually follow through. So I have decided instead to write a post about organization. No, it isn't at all related but I have been thinking about it so here we go.

After looking around other blogs I was feeling very unorganized, because certain aspects of the way we do things here at our house are not like other families. But I wanted to share a major organization step we recently took. Our laundry area. Laundry has always been an issue, washing, drying (forgetting about it in the washer, can you say mildew?), folding and putting away. We used to have mountains of clean laundry just waiting to be folded. It would first land on our bed. Then by the time we went into our bedroom, we were so exhausted so onto the floor it would go. Then in the morning, we would make the bed and pick it up off the floor and add to it with more clean clothes. This would continue until someone took the initiative and brought it out to the living room while we watched TV. Even then sometimes it wouldn't work. When it finally did get folded kids would be sleeping and we wouldn't dare risk going into their room to put the clothes away so in the hallway in front of their doors it would go. Only to be unfolded by one of the kids in the morning.
I decided that "system" wasn't working!!!! I did research on the Internet on how other families deal with laundry. And I incorporated many of their ideas. I have baskets on the shelf, one for each room, that I put folded clothes in so when they wake up I can put them away. I have a basket lined with a net laundry bag just for socks. Each person has their own type of socks, my husband has black Hanes on the toe, my daughter has white with bows, oldest son has green Hanes on the toe, the little boys have plain white. So I can sort them easier. I usually don't wear socks, I wear flip flops.
I also have a trash basket in there and my soap is huge and heavy so I wedged it behind the dryer so I can reach in it without having to pick it up. I used a shower curtain rod to hold hangers and shirts because at our house all shirts, except the babies, get hung up. We also have a three section laundry sorting basket that fits perfectly next to the dryer. All laundry goes there, towels, whites and darks. Then on the top shelf I have a small basket for my stain removers.This is also where bleach, an ddryer sheets go. I wash at least one load of laundry per day and if I want to dry that load, whatever is in the dryer has to be folded, right then. It does not get moved from the dryer in a bundle. I have to fold it. If I don't have time, the stuff in the washer has to wait. If I want to avoid rewashing because of mildew smell, then I make time for it.

This system has worked so wonderfully. I think my husband has only had to fold one load of laundry in the two months we have been doing this system, because I was sick. He really dislikes folding so having this system so he doesn't feel like he needs to help with folding or washing makes me so happy. He does so much for us and he works so hard that I absolutely want to have a system in place that takes stress off him, well everyone for that matter.

The empty basket on the right is the one for socks. They were being washed at the time of the photo shoot :)

I guess this has turned into a "Thoughtful Thursday". This system is in place so that the laundry burden is mine and that is fine with me. Makes free time for my Husband to play with the kids.

*The baskets were purchased at Wal-Mart.

Easter Festivities

Making our resurrection story cookies, beating the pecans
Beating pecans....

Two attempts at a good family photo... umm not so good.

Last night at 7:15 I realized that we had not colored eggs nor had we made our resurrection story cookies. So we had to whip up some hard-boiled eggs while the kids were showering, and let them cool while we started the cookies. We totally had to multi-task but we did it all and the kids went to bed only about 45 min late. We also had not finished purchasing items for the easter baskets, so DH went to Wal Mart. Normally he completely dislikes Wal Mart but last night I called him after he had been there for 1 hour to find out what was going on. He was so excited for the stuff he was getting for the kids, it was really cute. He bought a t-ball stand for the Prince, a princess tea party set for, well you can guess who that was for. Maracas for the boys and a sno-cone maker for the whole family. Also star wars toys, a dvd, a kids cd and chairs for us at the t-ball games. It was awesome. While I was walking around cleaning up and filling eggs, my ankle began hurting, and kept getting worse. I took pain medicine but I was having trouble walking on it. I woke up in the middle of the night and I could barely get out of bed. Luckily wearing high heels to church took pressure off of it so I could walk through church and just barely limp. But it still hurts. I was having visions of using crutches to go into church, thank you God for allowing me to be able to walk today.

Anyway, we woke up and the Easter Bunny had not come, we had previously asked him to wait until we got home from church to bring goodies or else we never would have made it to church at 8:15. After church we stopped by my mom's house for a quick photo shoot before heading to breakfast. Good thing too because the kids were covered in food yuck. We went to a buffet and the kids loved it because they got ice cream after breakfast. Oh the joy! It went pretty smoothly for a family who never ventures out to restaurants.

We came home and they enjoyed their Easter treasures and we watched this Jesus video we have that chronicles His life. Then we had an egg hunt. Now we are all relaxing and out of our fancy clothes and just hanging together. What a great day!!

We are very thankful for Jesus giving his life for us, it is definitely a time when we reflect on all that we have because of Him.

Bedtime... well sort of

Here is what transpired last night at our house:

Midnight: DH and I went to bed too late. Yes that is way later than the normal 10:30 but I was very busy reading other people's blogs and he was studying.

2:30: My cell phone alarm goes of to remind me to take my antibiotics tonight is the last night of that, thank goodness!

4:00 The princess comes in to my room for a drink of water, carrying of course her pink bear, white bunny and small pink baby. She tries to lay in bed with us but when I realize that the crew she brought with her is taking up more room than I am getting, she is brought back to her bed.

4:15 The bulldozer wakes up, he has been teething lately (molars) and he has just been beside himself. Replaced pacifier. Back to bed.

4:25: Same baby wakes up this time he is not falling for pacifier replacement. Pick him up try to get him to lay down in our bed not working.

4:35: I give motrin for fever

4:40: The munchkin wakes up, he needs a bottle. (The loud screams from his brother woke him up) DH takes over with the first baby, I relay that I gave motrin.

4:50: DH walks past the boys room where I am feeding the munchkin.
DH: Did you give motrin?
Me: Yes
Then he continues on into the kitchen. I put the munchkin back to bed. Return to my room.

4:55 Me: What did you do in the kitchen?
DH: I gave him motrin.
Me: WHAT???? I told you I gave him motrin
DH: I asked you if I could give him motrin, and you said yes. (This is certainly not the first time we have misunderstood eacher in the middle of the night.)

4:57 Me: Hello, poison control, my son just got two doses of motrin within 15 minutes.
Poison Control: He will be fine he will probably just have a stomach ache.

5:15 everyone is back to bed

5:30 Bulldozer wakes up crying, falls back to sleep. Due to the stomach ache I am sure.

6:00 Bulldozer wakes up crying, falls back to sleep

7:30 Bulldozer wakes up cranky, and well so do DH and I, for lack of sleep of course.

Sibling Love

The two big kids were sitting at the table and BEFORE I got the camera out the Prince kept asking his sister what the colors were on the page, she kept replying "I ma know" ("I don't know" in princess speak). He asked probably 15 times and she continued to have the same answer. Well as soon as I pulled out the camera she started answering, correctly, well some of the time. We were both surprised to hear a real answer out of her.The last color? a birdie... not sure what color that is. They were both being so sweet to each other, I just had to share.

Frustration

Okay I am frustrated about a few too many things and I feel I need to vent a bit...
The frustration began at the munchkins' appointment in Loma Linda. When they weighed him we realized that last month he weighed 14.3 lbs. and this month he weighs 14.0 lbs. Ummm this is not the direction we are supposed to be going. So I am feeling very sad about the fact that my son doesn't prefer to eat and in turn is not gaining. He has been more active so the loss isn't that disappointing, right. Wrong! While the dietician is in the room with me she makes mention that the GI doctor may want to put in a feeding tube... WHAT?!? I was so not prepared for that information, I just began to cry, how am I failing so miserably at feeding my child? How can it be this hard for someone to gain weight? It has never been hard for anyone I know to gain weight, it's always losing it that takes the effort.
I have one more month to try to fatten him up, and like every month before I am hopeful that he'll be able to do it. They have switched him to a higher calorie formula. When the babies came home from the hospital they were on a 22 calorie per ounce formula. When he first began to not gain weight they increased it to 24 then 27 now it is at 30. Well he is starting another new formula and it is 45 calories per oz. Wow that is a lot! We are praying that he will be able to tolerate it without any stomach upset or pain.

Onto frustration #2: Traffic
Why in the world are people sooo rude, if someone has their blinker on why can't you just let them over. Especially if there is a freeway on-ramp on the side that the person is trying so desperately trying to get to. Yes, this is what happened to me yesterday and actually today too, minus the freeway on-ramp. I think I am just not aggressive enough. I generally don't just jump in front of someone, but yesterday when NO ONE would let me over, (and believe me they all knew I wanted to get over, my poor little blinker was just blinking away) I was either going to take my place in front of rude car #45 or continue going straight and have to make 2 u-turns. There is no way I was about to chance getting lost. Every time I go to Loma Linda I get lost whether is is going there or coming. If I happen to make it there without getting lost, they will have all on-ramps closed when it is time for me to leave and I will have to drive around for 20 minutes trying to find one and then sit in traffic for 30 min -this really happened. Why can't people be more patient and kinder, and while we are at it, how about thoughtful?....
So anyway, I watched until a car was far enough back for me to jump in front safely and I did, and he honked at me. I did not cause danger I had to get over. I was so upset, if I could have been blogging while I was driving....

Finally, No More Exhaustion!

I would like to update everyone... I have been getting sleep! Three nights so far without even so much as a peep from the little munchkin who had been keeping me up for 2 hours every night for I don't know how long. I don't even need coffee in the morning, just at around dinner time to keep me going. I am so excited because we have been able to enjoy our time together! We even did a craft on Sunday, we made Easter bunny baskets out of paper plates. Normally I could barely get through the day much less plan something crafty and actually complete it, I even made two extra sets of stuff for the neighbor kids to make them too. I am soooo excited to be able to enjoy my adorable children. Thank you so much to everyone for your prayers, they have worked!!! The munchkin and I are going tomorrow for our monthly Loma Linda BPD (Bronchopulmonary dysplasia) appointment, I'll let you know if he has gained any weight. I am just gonna squash mine, okay mom? Here's mine mom!


Front view before we added the nose and mouth

Success!

First time at bat!
He's the one facing the camera, next to the coach

I made it through the t-ball game!!! It was rough, especially at first when the princess told me she had to go potty right when the prince walked away to get the team picture taken. The coach looked after him for me and I picked up the princess and pushed the double stroller as fast as possible. The bathrooms were really far away. On my way there a woman that I had sort of known from a mommy group 6 years ago saw me and asked how I was. I replied.. "Ummmm not good she has to go potty and the bathrooms are really far away...." She said " Do you want me to watch the boys for you?" "YES, please they should be fine..." as I was running toward the bathrooms. When I returned, I hugged her. She totally saved me. Another thing that was soooo hard was that the princess kept finding these stinkin' seeds on the ground. She thought they were neat so they caused her to stop..... and look.... and pick up..... and inspect..... and drop..... and pick up..... I Love that she is so curious, but not when I am on a schedule, or if babies are crying. So I would scoop her up and while carrying her she would of course drop her seed then cry.... ahhhh my seed. Oh my goodness!

The Prince really seems to enjoy baseball, he is focused, which is new for us. I don't know if it is the sport or that he is just maturing. I am so proud of him. He is doing so well in school also, he is growing up quickly.

T-ball

Okay I am feeling a bit stressed about tomorrow. The Prince has his first t-ball game ever, but that is not the stressful part. What has got my mind going a million miles a minute is the fact that we have to be at the filed for pictures at 7:30am. The coach asked everyone to be there at 7:20 so I have to aim for 7:00 BECAUSE... I will be attending without my Husband, BUT with my 4 children. So.. pictures at 7:30, game at 9:00 and then we must stay for opening day ceremonies at 10:00. Just writing about it makes me want to either cry or throw-up. There is absolutely no way that a) anyone will be able to enjoy it, b) we will make it that long without the princess having to use the restroom and c) that I will even be able to watch more than 3 seconds consecutively of his first game and more importantly, I won't be able to take pictures. I must say though that his uniform is completely adorable and so is he, I think we may have finally found a sport that he truly enjoys.

Race For Hope

I just wanted to make everyone aware of a Race for Hope coming up in Monrovia on March 30th. It supports Twin to Twin Transfusion Syndrome (TTTS). It is not very common, but our babies had it. It is where identical twins are sharing a placenta and they are also sharing blood vessels. One baby takes all the blood and nutrients and the other one gets hardly any. The baby receiving all the blood produces lots of amniotic fluid and the other baby can't produce fluid. Both babys' organs could begin shutting down, from their hearts and bladders to their kidneys.

Here is our story:
We found out we were having twins when I was 16 weeks pregnant. The week before they told me there was only one baby. Um I think they may have been wrong about that :). One of the babies had a ton of fluid and the other was quickly becoming shrink- wrapped in his amniotic sac due to a lack of fluid. We had a few options on how to correct the problem. 1. Do nothing and see if it corrects itself 2. Choose the healthier baby and cauterize the other baby's umbilical cord to ensure that at least one baby would survive 3. Have a surgery to cauterize the blood vessels connecting the two babies. If we chose to do nothing and the problem got worse we would probably lose both babies, they were using each other to survive. If one died the blood would stop flowing back to the other baby. Option 2 was not an option because even though being parent's of twins was scary we wanted both of them. So our only option, the only option with hope, was option 3.

Even with the surgery there was such a small chance that both babies would make it, especially the smaller one. I was put on bed rest immediately. At my appointment at 18 weeks the babies had not improved so two days later we were in Hollywood for a consultation to see if we met the criteria for the surgery. The following day I was in surgery, I was scared to death! They only had to cut a 3mm incision and they put a fetoscope, and a laser in the tiny hole. While they were in there they took out 2 liters of extra fluid from the bigger babys' sac.
The next day they did an ultrasound to see if one or both babies were still alive. It was the longest minute of my life while the doctor was looking for their heartbeats. I was crying when Dr. Chmait told us they were both okay. The next two days we had had ultrasounds to check on them. They were fine.

I spent 3 more weeks on bed rest at home, then when I went in for an appointment I was checked into the hospital. I was dilating, I had been ever since the surgery and they put in a cerclage to close my cervix but it just wasn't helping. So I stayed in the hospital for six weeks, while I was in there people from our church I did not even know were at my house watching my children and bringing dinner. It was amazing! Family and friends were also helping. We would not have made it through without all the help. During this time my husband got a staph infection on his leg. He was not allowed to come visit me for a week. It was horrible, a week or so after his leg got better they did and ultrasound ad it showed that the smaller baby was just not catching up in size. I was devastated. I felt like I was in the hospital for no reason, I wasn't even helping the smaller baby catch up in growth. All I was doing was missing my husband and my daughter in her 11th month of life. I also missed walking my son in to school on his first day of kindergarten. I had given up, I needed my husband to just come and be near me and pray with me. I had the ultrasound on Monday and that whole day and Tuesday I just cried. Wednesday I was feeling a bit better except I had gastroenteritis and my stomach was hurting. That night I started having contractions and I had to get shots of turbutaline to make them stop. Thursday morning I woke up at about 6:30 and got up to use the restroom. When I got back in bed to go back to sleep I started really having painfulcontractions. I called the nurse to let her know I was contracting and she came in to put a monitor on me to see how frequent they were coming. When she was gone to get a shot to try to stop them my water broke. She reached down to check me and I was 9cm. I called my husband to hurry up and make it to the hospital. He was 30 minutes away and I was already being wheeled down the hall to have a c-section. He met his mom on the way and handed our daughter over to her. He walked in the door just as they were making the first cut. I was only 28 weeks pregnant, I knew my babies were going to be tiny. I wasn't worried, I knew the Lord was taking them out of me because I had already done all I could for them. Now, them being out was going to be better for everyone. The bigger one came out first at 8:10 am He let out a little cry and then they immediately intubated him so he could breathe. The smaller one came out at 8:11 am and he did not get a chance to cry because they intubated him so quickly. They weighed 2lbs. 7oz. and 1lb. 7oz. They were so very tiny. They put them in incubators and wheeled them into the NICU to begin their very long stays of 83 days and 105 days. They had blood transfusions and platelette transfusions and infections and mean nurses who told me not to touch the smaller baby. While they were in there the doctors did an ultrasound of the smaller babys' head and found that more that half of his right parietal lobe was missing. We later found out that for him that means mild cerebral palsy.

The reason I am writing all of this is because of this race for hope. I was just contacted the other day by the doctors office who did the surgery at 19 weeks gestation and they are having a reunion with the doctor and all his patients. I have not really thought about any of this for while because I am so consumed with other things like diapers and runny noses. But after the phone call I started to remember that this doctor, Dr. Chmait, saved my babies lives. It is because of him and the research that he is doing that my miracle babies are even here. I can't even imagine what life would be like without them. We are so excited to thank the man (again) that saved their lives and we are so excited to be a part of the race for hope to raise awareness of this syndrome.

I have a few side notes that are interesting:

• The surgery I had was experimental and still is.
• The insurance company was not going to pay for the surgery because it is experimental.
• The smaller baby's umbilical cord was not implanted into the placenta it was next to the placenta and blood vessels were connecting it so he could receive blood.
• He was only receiving about 10% of the amount of blood he was supposed to be receiving.
• The hospital I stayed in in Hollywood was Hollywood Presbyterian, the nurses were talking about blessings and praying for us. That was out of the ordinary for a hospital.
• Everyone we met through our journey we know was placed there from the Lord.
• My doctor out here was devastated when he found out the smaller baby had brain damage. He had wished taht he had noticed it when I was still pregnant. I feel it was a gift from the Lord. They may have thought he was hopeless and talked us into terminating his life.
• From a medical standpoint our little munchkin is not perfect and has a damaged brain, but from the Lord's standpoint he is perfectly made. The Lord made my sweet Angel EXACTLY the way he wanted him, he has a plan for him.
• The smaller babys' first and middle names mean gift from God, who is like God.

Here is a link for the race for hope:

tttsraceforhope.org

Another site with information about TTTS:

http://www.americanpregnancy.org/multiples/ttts.htm

Exhaustion

Everyone is sick. Not one of us got a good night sleep last night. Actually that is not all that unusual for me but for everyone else it is not so good. I am going to need to do some serious praying today for help, energy, patience and the ability to be kind when it would be much easier not to be. I am so tired my eyes are burning, that usually doesn't happen until much later in the day... it's only 10am. I will be needing coffee and lots of it. Ooh I wonder if everyone would nap at the same time so I could get a nap? Probably not, that only happens when I am not tired and I have nothing to do... which is never.

My landscaper

Okay at first when my Husband started showing an interest in the backyard I thought I was going to lose my mind. He was spending so much time outside, but who can blame him it's crazy in our house. When we moved in the yard was dirt and he has worked and worked to make it the beautiful yard that it is. Now that projects are completing I really appreciate all his hard work.
He is amazing. There is still more to do but it has to happen in stages because we don't have endless amounts of money. He has made and amazing garden with cilantro, parsley, strawberries and dill. Tomatoes, Peppers, squash and spinach will be coming soon. We have a new tree, a Bradford pear. We have gardenias, calla lillies, jasmine, a lemon tree and other plants. He built the walkway on the side of the house, he worked so hard on it and it looks amazing. I just wanted to share some of his hard work. I will post more picture as projects are completed. His First Rose!!! The walkway before he planted the Calla Lilies
Straightening the creeping fig

Elbows and Knees

The princess just yesterday discovered that she has two elbows AND two knees. She was so excited that I decided to interview her regarding her new found limbs. I have included a video of the interview. To Grandpa zippy and Grandma C: she is wearing her Tinkerbell pajamas that you got for her, we were watching Peter Pan and she just HAD to wear them.

Shower Mishaps

Mishap#1
Okay so apparently I don't get enough sleep because it affects my morning shower. About two weeks ago I was getting into the shower and one of the babies was starting to whine so I was thinking that I will just be really quick. Well I put shampoo on my hair and then I realized I needed more so I reached down, eyes closed and pumped some more into my hand. But now my hair was no longer bubbling. I had grabbed conditioner instead. Okay, now I had to rinse and start over again because my hair wasn't clean yet. So now the shampoo went fine, I got enough the first time (I made sure of it). But now it is time for conditioner, put some in my hand then I realized I needed more, I reached down with my eyes closed to get more and put it in my hair. UH now my hair is bubbling! So I rinsed out the shampoo/conditioner mixture and finished my very long shower that was supposed to be short.
Mishap#2
I was in the shower the other day and could not remember for the life of me if I had put shampoo yet or did I already put conditioner and rinse it out, or nothing. I stood there for a good minute or so trying to recall getting shampoo, I went through motions and everything, No luck. I could not remember so I began with shampoo.
Mishap#3
I was in the shower and I really needed to shave so I began with my leg then to my underarm and continued until I was finished. I got out of the shower and started to put lotion on. I got lotion all over my body, when I was putting it on my last limb, my right leg I realized I forgot to shave that leg, so I had to get back in the shower and shave that leg and then re-lotion that leg.
I think I need someone to monitor me in the shower or maybe a checklist or something..... I cannot keep wasting shampoo and time like this, it's ridiculous.