Here is our latest update. They checked the heartbeats of the babies twice Friday night and they were doing really well, the nurses seemed really surprised about that. Then I had an ultra sound on Saturday morning and there really wasn't any change in the fluid around the smaller baby. However, there was a HUGE change in his movements. We saw him move around more in that one ultra sound then we have ever seen him move in ALL my ultra sounds combined, so we were very excited about that. The bigger baby's bladder and kidneys were smaller, not the right size yet but smaller, so that was another good sign. We were very pleased with the ultra sound and think that the babies are definitely on the right track.
We got into Seattle on Sunday and just drove around doing nothing. We called the doctor Monday morning and he told us he didn't need to see us until Friday at noon. ARE YOU KIDDING ME??? I was a little upset about that only because I am the type of person that wants answers and results now. The doctor said that it would take that long to see if there is any change in the fluid around the small baby. Sooooo, we are just sitting here and waiting which is really annoying.
I had my first "breakdown" since we got here. I am missing my boys, want to be in my own bed and am just tired of going from hotel to hotel, plane to plane, doctor to doctor, ultra sound to ultra sound, etc. I was crying at the drop of a hat and just feel really gloomy. It is nice to know that the kids are in such good hands with mom and dad, Kathy and Tramp so I don't have to worry about them...I just feel bad because I am not there to take care of them. Kyler had me almost in tears on the phone because he "just wants his mommy to come home."
Rikk has been the best hubby there could ever be. He hasn't complained one time about having to do anything and everything. Even though I am allowed to carry light things, he only lets me carry my purse and a water! He has had his fun about this though because whenever we go somewhere I have to be pushed in a wheel chair. We (I) will be talking and we will be strolling along and when he doesn't respond I turn around and he is at least 20ft. behind me laughing. Or when we roll up to the restroom, he parks me facing a wall and then says, "You sit there and don't move!" We both laugh, but boy does he get some dirty looks from people walking by!!!
We just want to thank you all for your prayers and for fasting, it really means a lot to us. We have seen the power of fasting, prayer and priesthood blessings work. Thanks for everything you all have done. We will try to post again on Friday.
Tuesday, January 27, 2009
Friday, January 23, 2009
Rikk and I met with all kinds of doctors yesterday here in San Francisco, we spent 6-7 hours at the hospital. I had another 2 hour ultrasound, talked with the OB specialist, had a just over one hour echo cardiogram for the babies and then back to talk with the OB doc. He assured us that we literally had the best team in the world working with us...the best fetal surgeon, the best OB doctor, the best radiologist who actually specialized in TTTS, and the best anistegiologist(sp?).
The smaller baby yesterday had such little fluid it was unmeasurable and his amniotic sac was wrapped around him like saran wrap. The big baby had too much fluid, (9cm, they really like only about 6, 8 at the absolute most) and his kidneys were dilated they think from all the fluid, although we were told that is also a marker for DS. The big baby's heart had a little bit of thickening around it because he has been working so hard, but they aren't worried about it and feel that after the surgery everything with his heart will go back to normal. We were also told that even after the surgery the babies wouldn't be sharing the placenta evenly, more like 1/3 and 2/3 with the smaller one only having 1/3. They say that it shouldn't be too much of a problem, just not to expect that smaller one to be as big as his brother. That's okay, we are used to small babies!!!
Rikk gave me a blessing last night before we left for the hospital. We checked into the hospital last night at 10pm and weren't able to get to sleep until about 3. I guess I was having some contractions, although I wasn't feeling them, it just felt like the boys were moving around. Then we were woken up at 5 to talk with doctors and to get the prep going for the surgery. I got an epidural and they gave me some meds to relax (the more I was relaxed the more the babies were relaxed and wouldn't move which is what they wanted), and I don't remember anything except the last 5 minutes before they took me upstairs to my room. I was having a really good sized contraction and it took them a few to get it under control with some meds. The expected a contraction, just not that big and long.
They said the surgery itself went well, a little more trouble than they expected, but they succeeded. I guess the sharing blood vessels were beyond intertwined and it was just a little tougher than they expected. They also took out 3 and 1/2lbs of fluid. My tummy is quite a bit smaller. which is nice.
I am doing okay. My BP bottom number was lower than they would have liked for about 5 hours after surgery. Then I asked for the catheter to be removed because I had to use the restroom (which is unusual because when you have a catheter you shouldn't feel like you have to go). The nurse got the okay to remove the catheter, took some blow up things off my legs (I still have the pretty white tights on!) and got to use the bathroom. The nurse was surprised I actually went and then she took my BP and it was just fine. She told me I must do things backwards! They are surprised I am having hardly any pain and no dizziness.
Tomorrow they will do an ultrasound to see how things are going. We were told we would get one of the three following outcomes...
1. Nothing has changed and it may take a couple more days to see a change. This is what happens on average.
2. There will already be a significant change in the fluid around the smaller baby which is great. This is always a nice surprise.
3. That we have lost the smaller baby.
There is a 80% chance of one surviving, a 50% chance of both and had we done nothing they both would have passed. We are confident in the decision that we have made to have the surgery and know that everyone that has been working with us was being guided by Heavenly Father. We are praying and Rikk is fasting that they both make it, but we know that our Heavenly Father has his own plans for us. As dad said to me last night on the phone..."If we were to end up losing the little baby, he's going to have the best knee to sit on while he waits for us." You can't argue with that!
We appreciate all the prayers and fasting you all have done, that really means a lot to us. We will try to update again within the next few days.
P.S. Rikk got a room at the Hilton but has yet to sleep in it. I don't think he really appreciates the recliner/pull out chair they gave him to sleep on!!!
The smaller baby yesterday had such little fluid it was unmeasurable and his amniotic sac was wrapped around him like saran wrap. The big baby had too much fluid, (9cm, they really like only about 6, 8 at the absolute most) and his kidneys were dilated they think from all the fluid, although we were told that is also a marker for DS. The big baby's heart had a little bit of thickening around it because he has been working so hard, but they aren't worried about it and feel that after the surgery everything with his heart will go back to normal. We were also told that even after the surgery the babies wouldn't be sharing the placenta evenly, more like 1/3 and 2/3 with the smaller one only having 1/3. They say that it shouldn't be too much of a problem, just not to expect that smaller one to be as big as his brother. That's okay, we are used to small babies!!!
Rikk gave me a blessing last night before we left for the hospital. We checked into the hospital last night at 10pm and weren't able to get to sleep until about 3. I guess I was having some contractions, although I wasn't feeling them, it just felt like the boys were moving around. Then we were woken up at 5 to talk with doctors and to get the prep going for the surgery. I got an epidural and they gave me some meds to relax (the more I was relaxed the more the babies were relaxed and wouldn't move which is what they wanted), and I don't remember anything except the last 5 minutes before they took me upstairs to my room. I was having a really good sized contraction and it took them a few to get it under control with some meds. The expected a contraction, just not that big and long.
They said the surgery itself went well, a little more trouble than they expected, but they succeeded. I guess the sharing blood vessels were beyond intertwined and it was just a little tougher than they expected. They also took out 3 and 1/2lbs of fluid. My tummy is quite a bit smaller. which is nice.
I am doing okay. My BP bottom number was lower than they would have liked for about 5 hours after surgery. Then I asked for the catheter to be removed because I had to use the restroom (which is unusual because when you have a catheter you shouldn't feel like you have to go). The nurse got the okay to remove the catheter, took some blow up things off my legs (I still have the pretty white tights on!) and got to use the bathroom. The nurse was surprised I actually went and then she took my BP and it was just fine. She told me I must do things backwards! They are surprised I am having hardly any pain and no dizziness.
Tomorrow they will do an ultrasound to see how things are going. We were told we would get one of the three following outcomes...
1. Nothing has changed and it may take a couple more days to see a change. This is what happens on average.
2. There will already be a significant change in the fluid around the smaller baby which is great. This is always a nice surprise.
3. That we have lost the smaller baby.
There is a 80% chance of one surviving, a 50% chance of both and had we done nothing they both would have passed. We are confident in the decision that we have made to have the surgery and know that everyone that has been working with us was being guided by Heavenly Father. We are praying and Rikk is fasting that they both make it, but we know that our Heavenly Father has his own plans for us. As dad said to me last night on the phone..."If we were to end up losing the little baby, he's going to have the best knee to sit on while he waits for us." You can't argue with that!
We appreciate all the prayers and fasting you all have done, that really means a lot to us. We will try to update again within the next few days.
P.S. Rikk got a room at the Hilton but has yet to sleep in it. I don't think he really appreciates the recliner/pull out chair they gave him to sleep on!!!
Wednesday, January 21, 2009
We are in San Francisco
We are here in San Francisco to go to UCSF Medical Center. We have appointments all morning and afternoon tomorrow, starting at 10am and ending probably no earlier than 4pm. Hopefully they can get me into my surgery tomorrow night, if not Friday morning. We are tired of having ultrasounds...they take about 3 hours. We will fill you in on more when we know more and have time. Thank you all for your thoughts and prayers."The Shining" was filmed here....
Rikk and I made it to San Francisco and checked into a place called Hotel Majestic. It looks like something straight out of "The Shining" and possibly more creepy!!! These pictures are from the movie and I swear it's our hotel.
The bartender looks just as creepy as this guy, I am sure there are twins running around, and our door looks like this but white. Rikk says we are sleeping with the lights on...I am all for it. We are checking out tomorrow and finding a different place. We even googled it after we got here and there was a link to click on about a ghost haunting the hotel...Rikk says we have to wait until after we check out to read it...once again, I agree!!! Oh and the only thing we have to protect ourselves with is a wooden umbrella. I WANT MY MOMMY!!!
Our room looks like the one in the top picture but with the bed from picture #2. These are actual pictures from the hotel website.
Our room looks like the one in the top picture but with the bed from picture #2. These are actual pictures from the hotel website.Sunday, January 18, 2009
Seattle Space Needle here we come!
Now don't start freaking out, nothing in my condition has changed that we know of. I got ahold of the head OB/GYN at Bassett Army Hospital, Dr. McWilliams, because we had been home for three days and I hadn't heard from my doctor. He had no idea what was going on with me and just kept apologizing over and over when I told him what we found out. He said that he didn't want me in the state of Alaska, that he wanted me in Seattle ASAP. He said he had to call over to Madigan Army Hospital and that he would call me back. He did and told me that Madigan was where I was going and that they actually referred their last patient in my condition down to UCSF (San Francisco) and that that would more than likely happen to me. He said he had to make another phone call and would call me back. He did and told me that I would be more than likely out on a flight on Monday, no later than Tuesday. He said that I would be getting some phone calls on Saturday to finalize things.
We got our phone calls late yesterday morning and we were told that Rikk and I would be on a plane Monday for Seattle. TRICARE (our med insurance) won't pay for the kiddos to go. My parents are going to watch the kids with a backup person in place for any reason. I am so thankful that I have my parents here. Rikk will get me situated wherever the final place is and then come back home and try to figure out what we will do from that point with him and the kids. I tell you what, I can't go weeks, let alone months without seeing Rikk and my kids.
But I have an appointment first thing on Tuesday and we were told that we should know right after that if we are staying in Madigan or on our way to San Francisco. So even though I keep crying at the drop of a hat, I know that this is best for the babies and that is what I need to be focusing on and just need to remember that even though I am not here to take care of my kids, they are being taken care of and in really good hands.
We got our phone calls late yesterday morning and we were told that Rikk and I would be on a plane Monday for Seattle. TRICARE (our med insurance) won't pay for the kiddos to go. My parents are going to watch the kids with a backup person in place for any reason. I am so thankful that I have my parents here. Rikk will get me situated wherever the final place is and then come back home and try to figure out what we will do from that point with him and the kids. I tell you what, I can't go weeks, let alone months without seeing Rikk and my kids.
But I have an appointment first thing on Tuesday and we were told that we should know right after that if we are staying in Madigan or on our way to San Francisco. So even though I keep crying at the drop of a hat, I know that this is best for the babies and that is what I need to be focusing on and just need to remember that even though I am not here to take care of my kids, they are being taken care of and in really good hands.
Friday, January 16, 2009
I LOVE MY FAMILY, FRIENDS AND WARD!!!
Ever since we have shared with all of you what is going on with the babies, we have gotten endless acts of service in many ways. Rikk is the best hubby a girl could ask for! Rikk has become "Mr. Mom" on his days off and has just let me lay on the couch or in bed while he does everything (but this is good for him, right?!!!). He has explained to the kids that the babies are a little sick and that mommy has to lay around on her bum all day to help them get better. The boys thought that was pretty funny and didn't ask what was wrong with the twins which was a relief. I have the best parents in the whole world. They would drop and have dropped everything to help out their kids without a second thought. My parents have come out at different times to take care of the kids for hours when Rikk is at work. This includes entertaining them, doing dishes, laundry, bathing kids, putting them to bed and picking up Hunter from school. The relief society presidency and compassionate service leader at church have organized dinners and people to pick up Hunter from school on the days Rikk is at work (he works 24's). We even had friends who live in another state order chinese food and have it delivered to our house for dinner last night. And we have gotten numerous encouraging phone calls, emails and comments.
Rikk and I hate to ask for help, even in our own family...we were told my numerous people, "You aren't asking for help we are offering it and fine, we aren't helping you, we are helping the twins so you can't complain." That makes it a little easier, but we still feel bad because all of you have your own lives and families to attend to as well. We just want to say thank you to all of you, for the things you have done, for your encouraging words, for letting me call and cry...it really means a lot to us.
Rikk and I hate to ask for help, even in our own family...we were told my numerous people, "You aren't asking for help we are offering it and fine, we aren't helping you, we are helping the twins so you can't complain." That makes it a little easier, but we still feel bad because all of you have your own lives and families to attend to as well. We just want to say thank you to all of you, for the things you have done, for your encouraging words, for letting me call and cry...it really means a lot to us.
Wednesday, January 14, 2009
Appointment in Anchorage
Our trip to Anchorage started out really nice. We left Monday night, had a good flight, got the rental car and got to stay at the Sheridan Hotel for $50...thank you priceline.com! The room was so nice, Rikk's favorite was that there was a 42" flat screen at the end of the bed! He wanted to live there forever.
We got to the doctor's on time and filled out 5 sheets of paperwork. The took us to the ultrasound room and got me ready. The doctor was actually the same one that delivered Kyler and knew who we were, so it was comforting to know we were in good hands.
The doc had the ultrasound machine on for all of two seconds and said, "This isn't good." Not the first thing you want to hear from a doctor. She talked with us throughout the ultrasound and when it was over. The twins have Twin to Twin Transfusion Syndrome (TTTS) which isn't good.
What is TTTS? TTTS is a serious complication where the babies share the same placenta. Blood from one baby can mix with the blood of the other baby through small blood vessels in the placenta. If this blood is not shared equally between the babies one becomes swollen (recipient twin) with too much blood and the other becomes small (donor twin) and underfed because of not enough blood. In severe cases, the donor twin tries to make up for it's blood loss by stopping urine production. The amniotic fluid is basically fetal urine. The lack of urination causes a decrease of amniotic fluid around the fetus. Eventually there is a complete disappearance of amniotic fluid. This fetus gets "stuck" at the edge of the placenta where it is held by the collapsed amniotic sac. Without treatment, this donor twin is at high risk of death or brain handicap because of lack of oxygen, blood and other nutrients. One a scale of 1-10 with 10 being the worst, we were told we are at a 10. Not very comforting news.
There are 3 main options for treatments. The choices are pregnancy termination (so not an option), aggressive serial amnioreduction (stick a needle into the uterus every week or so and drain fluid from it to give to the smaller baby, more risks with this one) or laser photocoagulation (we are going with this one). LP is only done in Washington, California and Florida. LP is the use of a laser light to close the blood vessels on the surface of the placenta so that the babies' blood is no longer shared. In 80% of the cases, one twin survives; in 70% of the cases both survive; and less than 5% of surviving twins have brain damage. With the other treatments survival is lower and the brain damage risk is higher.
So, now that you have some info on this stuff we will tell you what we will be doing. I have to go back in three weeks for another ultrasound to see if things are the same or progressing. They said that if it is the same, I will more than likely go home to pack to (as they put it) move to Anchorage to be monitored until the twins' birth. If it has progressed, I will be on a plane, they hope to Seattle to have the LP done. Depending on how the LP takes I may be able to come home after a couple days (to Anchorage), stay for a few weeks and head home, or stay until I give birth and the twins are okay to come home.
The doctor said that I am too big in the belly right now because of all the extra fluid and that if I get bigger before my appointment to call them and I will be heading to Anchorage early. They said they have seen ladies who's bellies are as big as mine go to bed and wake up the next morning looking full term...WHAT?! Rikk is now measuring my belly everyday.
Not only that but the placenta is on my cervix which isn't good. Poor Rikk...he was gone for 8 months last year and was told by the doctor that we couldn't have certain physical contact with each other...he was sad!!! If we did we would rupture membranes, cause all kinds of bleeding and harm the babies. Oh, and I am on semi bed rest, which will end up full time.
But we did get some good news today. Rikk went to work and explained everything that is going on and just wanted to go over what possibilities he would have for some leave to go with me to Anchorage and other places if needed. They told him not to worry about it, that he could get put on orders to be with me and that it didn't matter if it was weeks or months. So that was such a relief to know that he and the boys can be with me wherever we go and that it is paid leave!
So, when we got home last night we had my dad give Rikk and I both blessings and we are both feeling comforted in knowing that we can make three weeks to the next appointment. There are some other things that we just aren't ready to disclose yet about the twins except with family, but when we are ready we will let you know. We both know that this is a part of our Heavenly Father's plan and even though we don't understand why, there is a reason for all this to happen. We would just like to ask for you to keep us in your prayers.
We got to the doctor's on time and filled out 5 sheets of paperwork. The took us to the ultrasound room and got me ready. The doctor was actually the same one that delivered Kyler and knew who we were, so it was comforting to know we were in good hands.
The doc had the ultrasound machine on for all of two seconds and said, "This isn't good." Not the first thing you want to hear from a doctor. She talked with us throughout the ultrasound and when it was over. The twins have Twin to Twin Transfusion Syndrome (TTTS) which isn't good.
What is TTTS? TTTS is a serious complication where the babies share the same placenta. Blood from one baby can mix with the blood of the other baby through small blood vessels in the placenta. If this blood is not shared equally between the babies one becomes swollen (recipient twin) with too much blood and the other becomes small (donor twin) and underfed because of not enough blood. In severe cases, the donor twin tries to make up for it's blood loss by stopping urine production. The amniotic fluid is basically fetal urine. The lack of urination causes a decrease of amniotic fluid around the fetus. Eventually there is a complete disappearance of amniotic fluid. This fetus gets "stuck" at the edge of the placenta where it is held by the collapsed amniotic sac. Without treatment, this donor twin is at high risk of death or brain handicap because of lack of oxygen, blood and other nutrients. One a scale of 1-10 with 10 being the worst, we were told we are at a 10. Not very comforting news.
There are 3 main options for treatments. The choices are pregnancy termination (so not an option), aggressive serial amnioreduction (stick a needle into the uterus every week or so and drain fluid from it to give to the smaller baby, more risks with this one) or laser photocoagulation (we are going with this one). LP is only done in Washington, California and Florida. LP is the use of a laser light to close the blood vessels on the surface of the placenta so that the babies' blood is no longer shared. In 80% of the cases, one twin survives; in 70% of the cases both survive; and less than 5% of surviving twins have brain damage. With the other treatments survival is lower and the brain damage risk is higher.
So, now that you have some info on this stuff we will tell you what we will be doing. I have to go back in three weeks for another ultrasound to see if things are the same or progressing. They said that if it is the same, I will more than likely go home to pack to (as they put it) move to Anchorage to be monitored until the twins' birth. If it has progressed, I will be on a plane, they hope to Seattle to have the LP done. Depending on how the LP takes I may be able to come home after a couple days (to Anchorage), stay for a few weeks and head home, or stay until I give birth and the twins are okay to come home.
The doctor said that I am too big in the belly right now because of all the extra fluid and that if I get bigger before my appointment to call them and I will be heading to Anchorage early. They said they have seen ladies who's bellies are as big as mine go to bed and wake up the next morning looking full term...WHAT?! Rikk is now measuring my belly everyday.
Not only that but the placenta is on my cervix which isn't good. Poor Rikk...he was gone for 8 months last year and was told by the doctor that we couldn't have certain physical contact with each other...he was sad!!! If we did we would rupture membranes, cause all kinds of bleeding and harm the babies. Oh, and I am on semi bed rest, which will end up full time.
But we did get some good news today. Rikk went to work and explained everything that is going on and just wanted to go over what possibilities he would have for some leave to go with me to Anchorage and other places if needed. They told him not to worry about it, that he could get put on orders to be with me and that it didn't matter if it was weeks or months. So that was such a relief to know that he and the boys can be with me wherever we go and that it is paid leave!
So, when we got home last night we had my dad give Rikk and I both blessings and we are both feeling comforted in knowing that we can make three weeks to the next appointment. There are some other things that we just aren't ready to disclose yet about the twins except with family, but when we are ready we will let you know. We both know that this is a part of our Heavenly Father's plan and even though we don't understand why, there is a reason for all this to happen. We would just like to ask for you to keep us in your prayers.
We are having...
...one boy and one boy...identical twin boys actually!!! That is right, I am the only girl in a house full of boys! It's okay if you want to cry for me, I did most the way home Monday from my doctor's appointment!! We took the boys with us to my appointment because they had never seen the babies except from a picture. It was beyond obvious they were boys. One boy had his legs spread apart as far as possible, he apparently wanted us to know and was proud of what he had! The other baby just did a little peek-a-boo action, hurried and showed us and then closed his legs for the rest of the ultrasound. Hunter said very excitedly, "I see a wiener!" Walker said, "I knew they were boys because one baby punched the other in the head and only boys fight!" What little clowns I have, they are just like their father!!!
Rikk admitted that he was a little sad that we aren't having a little girl (I will probably get in trouble for posting this but oh well!). He said he knows how bad I really wanted one and feels bad that I didn't get one. And the only reasons he was going around saying he didn't want a little girl is because he was afraid of changing girl diapers (understandable, quite a bit different than changing a boy's diaper) and he didn't want to have to go through the whole "dating" thing with a girl. AAAHHH!!! He would have been a good daddy to a little girl, totally wrapped around her little fingers!
So yes, I am a little saddened about not having a girl or two, but I am happy that I got more boys for my boys to play with and for Rikk to go hunting with. We had a doctor's appointment in Anchorage yesterday and I will post a little later with how that went.
Rikk admitted that he was a little sad that we aren't having a little girl (I will probably get in trouble for posting this but oh well!). He said he knows how bad I really wanted one and feels bad that I didn't get one. And the only reasons he was going around saying he didn't want a little girl is because he was afraid of changing girl diapers (understandable, quite a bit different than changing a boy's diaper) and he didn't want to have to go through the whole "dating" thing with a girl. AAAHHH!!! He would have been a good daddy to a little girl, totally wrapped around her little fingers!
So yes, I am a little saddened about not having a girl or two, but I am happy that I got more boys for my boys to play with and for Rikk to go hunting with. We had a doctor's appointment in Anchorage yesterday and I will post a little later with how that went.
Saturday, January 10, 2009
A BIG Brown Box
How many kids can you trap in a box this size???
FOUR!
Who wouldn't want to play in there with them! "The Apprentice"
Rikk took this picture of the boys the other day and we thought it was really cute. Could Walker be the next "Apprentice" or will he be "Fired"?!!!
Judging by the look on Hunter's face, it looks like Walker just may be "Hired"!!!
Look who turned 4!!!
Our little Walker Bear turned 4 on the 7th! He was not in the mood to hear "Happy Birthday" or to be sang to all day, but when it became present and cupcake time...that all changed! He got just a couple things because we are having his party on another day when Rikk and Papa can both be off.
Ben 10 pajamas...a HUGE hit!
A Spiderman Bank...this kid can find change anywhere!
Sporting the new pajamas
Getting sang "Happy Birthday"
Blowing out the candles!
Ben 10 pajamas...a HUGE hit! 
A Spiderman Bank...this kid can find change anywhere!
Sporting the new pajamas
Getting sang "Happy Birthday"
Blowing out the candles!He also had a yearly check up that day. We LOVE the pediatrician the boys have. She said that Walker is as smart as a 5 year old and was very impressed with his more grown up answers to questions. Here are some of the question he was asked and his answers...
What is a glass for? For drinking water (the doc said most kids just name a kind of beverage, don't mention drinking and that would be a wrong answer)
What is a ceiling? For buildings (the doc said most kids just say "the top")
What is a lake? Where frogs live...ribbit, ribbit! (I LOVE this answer and the doc got a good laugh)
We love you Walker! You are such a loving little boy, a BIG helper, a GREAT brother and we couldn't imagine our family without you. HAPPY BIRTHDAY!!!
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