Have I mentioned that it is still raining here? I wish it would quit already! Doesnt look like it is going to let up either!! It is all dark and gloomy! I hate it!! My rain gutters are overflowing, which is making loud noises outside my bedroom! My backyard is going to look like a swimming pool before long. The big ditch in my neighbors yard already looks like it!! Maybe I can take a picture of it too!! If I ever get my camera charged!! *LOL*
Not to mention, I slept like crap last nite!! I had my first very unsettling night of dreaming about dead babies. I cant say that was very nice at all!! Well, I guess it wasnt all nite, because I was up the other part! I even went ahead and took my temp at 6am rather than my usual 6:35am. Keaton was up at the crack of dawn too. Casey said he woke up at 4am and Keaton was up watching cartoons. At least he can do that. But then he started coming downstairs and talking to me. That is when I decided I would go ahead and get up!
Carli Update #2 (February 26, 2007)
"We have had a rough week and a half or so. We went up to Kansas City to see the specialist up at KU Med on the 15th of February. We went in and he basically told us that there was a chromosome defect and that he recommended an amnio to verify it. I was fine with the amnio, decided that we needed to know exactly what was going on. At his U/S he said that he thought there was a hole in her heart, but that it was in an odd place, that her liver was rotated and that there was a cyst on it, that her kidneys were hooked together in a horseshoe shape, and that she has something called rocker bottom feet. He pretty much gave us absolutely NO hope!! I went in on Friday to see my regular dr after telling work that there was no way that I was going to be able to be there that day!
I went in and my dr said that basically this dr told him there was no hope either. The KU dr wanted me to be induced, which isn’t going to happen after 2 c-sections, and basically let her die. My home town dr, Dr. Sides and the specialist in Topeka, Dr. Evans, both felt that was a little crazy. They did a test called a fish test, which tested 5 of the chromosomes over night. Friday afternoon about 4pm they called and said that that test came back "surprisely normal". But we needed to wait for the full amnio results to come back before we knew anything certain. They told us that if we hadn’t heard from them by Thursday to give them a call. Well I called Thursday afternoon, got the machine, left a message. Called Friday, same thing. Called this morning, same thing!! I had a follow up appt with Dr. Evans in Topeka today.
Today was a relief!!! They told us that this dr in KC had grown at least 100 pairs of chromosomes to test. They ALL came back NORMAL!!! I guess in most cases they only test 12-40. Dr. Evans felt so bad for how this all went down, even though it isn’t his fault!! I expected this dr to be blunt, which he was, but he could have had a little tact too!! He called me last Monday to make sure that I had gotten the results to the FISH test, which I told him I had. He then asked if I had any questions. I told him I had one....did she have any lung growth at all. His response was...."Yes, but that’s not a concern anymore!!" All I wanted was a yes or no answer!!!
Dr. Evans did another u/s today and didn’t see anything that the KC dr had. He was surprised when he was told about all that the other dr had seen. We are still going to have to deal with the CDH diagnosis, but we don’t have the chromosome issues to deal with now. We are running pretty close here...down to the wire. We are 3 weeks from when my c-section was originally planned for. We have some quick decisions that have to be made about where we will deliver and such. I have more hope now than I did about a week and a half ago. I know we still have a battle ahead of us, but at least it is a little more positive. On the positive side....we got to see her practice her breathing, which is a very good sign considering the CDH diagnosis. There is not any extra amnio fluid, which is common with CDH babies. The tech told us that there is pretty good lung growth on the left side, which is where the stomach is coming up thru the diaphragm. She is weighing in right where she should be for this age...estimated to be 5lbs 11 oz at this point. And the amnio did reveal that she is for sure a Carli Mae!!
I will be having a non stress test done at least once a week, and next week we will have another u/s to make sure that everything still looks ok with growth and the amnio fluid. We are seeing about setting up an appt with the Children’s hospital in KC for the end of this week.
We would appreciate it if you all would keep us in your thoughts and prayers still!! We still have a rough road ahead, but at least I am being able to see the positive side now!"
Here is the first update that I sent everyone when we found out more about Carli. I am too lazy to type out a big long description.
Carli Update #1 (approx Jan. 26, 2007)
"There are many of you out there that I told we would update you when we found anything out regarding Carli's condition. I figured since there are so many that I am suppose to tell, so I decided to just make one message that I can share with everyone. We went to Topeka yesterday and spoke with the specialist. He said that Carli does have CDH, and that there is some of her stomach and some of her bowel in her chest cavity. I will not be delivering in Topeka either, since it is out of their scope. Sounds like it will be Kansas City, and I will deliver at either KU Med Center or St. Luke's, and then Carli will be transported to Children's Mercy Hospital. The specialist told us that Carli will more than likely have to be on ECMO, which is where they have her lay on her left side of her head, and insert 2 tubes into her neck that will help oxygenate her blood for her, so that her left lung can hopefully grow some while it rest. To be honest that was really the one thing that I was really hoping she wouldn't have to have. I guess there really isn’t too many places that do ECMO, and that children's mercy is one of the top 4! That makes me feel about this () much better. Carli will be intubated right after birth, which i am really sad about. I am having a really hard time with all of this info. There is so much that I need to get done, and I don’t know that I will get it all done before I have to go deliver her. Before this diagnosis, i was counting down the days...couldn’t wait for my c-section date. Now, I am finding that I don’t want each day to move, because that is when Carli is really going to have to start fighting. I will be honest with you all and tell you that I am terrified. I am going to try to be as optimistic as possible, but I know that I need to prepare myself for both scenarios. So far, Carli seems to be a stubborn little girl!! At our first ultrasound (u/s), she had her face facing inside my body, rather than out, so that they couldn’t get a good picture. Then yesterday, she was really comfortable with her arm right up above her face. And she wouldn’t move it!! They estimated her weighing in at 3 lbs 11 oz yesterday. She is doing really well with everything else!! Her heart rate was great...at 124bpm. They told us that they think she has hair!! I am suppose to go see my regular dr again next week, then go back to see the specialist in 4 weeks, which is when we are suppose to let him know where we would like to try to deliver her. We also have an appt on Feb.16th to meet the group of drs that will be working with Carli at Children’s Mercy. I have so much going thru my head right now. There is so much to worry about. I worry about my other kiddos. I know that I am going to want to be in KC as much as possible, but know that I can’t neglect them either. Then of course there is financially, and work. The list goes on and on!! This so was not the way it was all suppose to go!! We had everything planned down to when the c-section was going to happen. Well, I suppose I should end this for now. Please, if you believe in prayers, please say one or two for Carli and our family. If you don’t believe in prayers, will you at least keep us in your thoughts. I know we will need them all!!"
Mikaela's coach called...he still doesnt know when we are playing. The crappy little town that she was suppose to have her game in, got more rain than us. And their field sucks!! So he asked me if we were busy Saturday..couldnt think of anything going on. Then he asked about Monday and Tuesday. Other than work we should be good to go!! So now we just sit and wait to see when the game is gonna be!!
It is still raining and crappy here. I can handle a day or two with rain, but after that...bring me some sun!!! This weather kills me mentally! I told my mom that on our way to the sitter this morning, we were listening to a song. All of the the sudden one of the waves (I will explain in a moment) hit me hard!! Just out of the blue...I remembered Casey and I's ride home from KU Med and what that horrible dr, Dr. Weiner, said. How he gave us now hope what so ever!! And told us to plan a funeral!! What was he thinking? I think I will post a copy of the two emails that I sent some family about Carli's situation, so that if I actually get anyone new that reads this, they will know what is going on!
Ok, about the wave...my wonderful dr in Topeka came in the night that we lost Carli while I was giving her a bath. I remember him coming in...but dont remember a damn thing he said. Imagine that!! But my mom told me what he had said. He said that going thru life and dealing with this will be like walking on a beach. There will always be the small little laps of water hitting our feet and ankles...and then BOOM, all of a sudden there will be this big wave that just hits us. That is how I have felt too!! Exactly like that! It has been one of the things said that makes sense. Have I said that I love my dr, Dr. E from Topeka. He is wonderful!! We will be going back to see him in 2 or 3 months. He said he would like to see me and Casey just to see how we are doing. And I really dont think it is just for the $$ either. He is a great dr!! So is my dr here...Dr. S.!! I love him too!! I keep hoping that when we go to see Dr. E, we will be pregnant with our next little baby.
I got my ovulation predictor kit today. It says to start using it on cycle day 11. That will be Sunday. I also ordered some Lydia Pinkham. It is basically just an herbal pill. My mom said her best friend and her sister both got pregnant using it. We shall see! That seems to be all that I am talking about! Getting pregnant!
The house is looking great!! Well, mainly the basement is. We have basically redone the whole downstairs. Except for the laundry room. But it did get a new Cabrio washer and dryer. All except some of the trim is up. We also have the fence up in the backyard!! Yeah!! Now we can keep the kids locked up in the back yard!! Once again, I will have to try to take some pictures.
I have the day off tomorrow. Dont know what I am going to do thou. I think it is suppose to rain, so I cant really take the kids to the pool. Guess I could always clean my house!! But...yuck that doesnt sound like anything I should do on my day off!!
And I am going to admit here that Carter's Skittles are right here next to me at the computer. I keep eating the damn things, even though they are so damn sweet!! Where is the hand to smack mine when I keep getting into them???
Ok...we probably do need the rain...but did it have to rain today? Mikaela was suppose to have a ball game tonite. The first nite of her tournament! We were all kinda bummed thou, cuz she has to play a really good team that only lost one game!! Yikes!! Oh well...guess it has been delayed for now! I was bummed too because she was suppose to go on a cool field trip today with the Rec Center to a place called Marble Madness. But I told her she needed to stay home instead since they werent due to be back until 4:30 and she was probably going to have to head out right around that time. They never schedule stuff on Wednesdays...it is suppose to be family nite with church and the such! So, we not only didnt have a ball game, but she also didnt get to go on her field trip.
On a good note about Mikaela and softball....she was so hyped! Last Thursday at her last regular season game...she got to pitch!! She has only been wanting to do it all season!! And she did really good!! I dont think she had one crazy pitch! Way to go Mikaela.
We had Carter's 5th birthday party this weekend! It went really well....we had some of his friends from his preschool class there, along with one of the kids from the sitters, and our neighbor's little girl. There were tons of kids here it seemed! He had a TMNT party! The pinata went over really well as usual. It was great!!
The only bad part about Carter's party was when I lost it and ended up going into Carter's room and cried. The kids were all so anxious to get started with the pinata, and my neighbor started recording it on the video camera. After the pinata, we came inside and had Carter open his presents! That is when it hit me...I dont think I fast forwarded it to the end. I went up to Carter's room and checked the tape. I had the most sickening feeling in my stomach!! I HADNT fast forwarded it!! And that was the tape that we had taped Carli with! I have been beating myself up for days now. I am so pissed off at myself!! What was I thinking having that tape in there!! I know there is nothing that can be done now...other than trying to get over it!
On the TTC front...I ordered some ovulation predictor kits. They should be in my order tomorrow at work. I also ordered some Lydia Pinkham herbal stuff. Dont know if it works or not, but I am gonna at least look at it. Next week on the 5th is when Fertility Friend says my ovulation is predicted for according to my cycles. Please let this be my cycle. I have mixed feelings about us concieving this cycle. If we go according to my period, my due date would be March 27, 2008. That is kinda hard to imagine that I would even attempt to try to have another baby at the same time frame. But, if it is meant to happen, then it will. I figure that is just a chance I am willing to take. My ideal time for a baby would be in May. As silly as it sounds, that way I could finish out my consecutive month of births...I have Carli in March, Keaton in April, no one in May..Carter in June, and Mikaela in July.
The Butterfly bush that we planted for Carli is doing great!! When the boys and I went out and watered it last nite, we saw the first bloom on it!! A pretty little purple flower!! I will have to take pictures to show!! We still dont have the bench out at Carli's site. Carter keeps asking me when will Carli's stone be there. I am really expecting it sometime this week...but it is suppose to rain all damn week. So, if it is raining he wont be able to come and place it! =( The Butterfly plants are looking pretty good!! There are 3 of them...one is really big and bushy, the second one is a little smaller, and the last one is still looking pretty wimpy. We have been teasing Keaton that that is his plant. It has been getting just a little more extra miracle grow than the others..well, maybe just a little more water!
Well, how is that for the mother of somewhat update? I will try to post more often. Should be a little easier since ball season is pretty much over!!
Today the sky kinda fits my mood! It is overcast...and so is my mood. Today my sweet Carli would have been 3 months old! I cant believe it has already been 3 months! I miss you Carli, and wish more than anything you were here. Life seems to be moving on...even if I dont want it to sometimes!
I got a bill in the mail for Carli's care at the hospital. Almost $21,000 for 12 hours and 20 mins. Of course it says check in date of March 20 and dismissal March 22. Maybe they think they can bill for the space that she took up. I dont know! I need to call the insurance company because they havent processed that bill! I was in shock! So I called the insurance (again) to make sure she was covered, and she is. So I need to call the hospital now! When I called insurance I also asked them about a $2750 bill I got from the Childrens Hospital. It was for the ambulance that was sent down to transport Carli back. So, I asked the lady from insurance, Josie, if that was covered. She said it should have been if she was admitted to the hospital. I told her the situation, that it came down to transport Carli, but she didnt make it, so therefore, she didnt need the ambulance. They lady said she was going to rebill for it! I sure hope they cover their part of it! I can see why they dont want to, but come on!! That is alot of money for an ambulance trip!!
Well, I just wanted to wish my sweet Angel a happy 3 month wish. And tell her that I miss her terribly!!!
Happy Hump Day!! Is it Friday yet?? Oh wait, even if it was Friday, I would still have to work Saturday!! Bluh!! And to top it off, it is gloomy!! Double Bluh!! I dont look forward to going to work today. Another day of wishing it away!! I hate feeling like this! I feel like I am in some kind of crazy limbo. Not really happy, but not really sad....just here. Maybe it is cuz we dont have anything planned for tonite...or it could be that I didnt really get to try to go to sleep until midnite, then Mikaela got home from the Royals game around 1am and woke me up. Yeah, maybe its just cuz I am a bit sleep deprived!
On the other hand, I am a little more happy today. I believe that I actually ovulated this month. I dont think it happened last month! Even though Fertility Friend hasnt shown when I O'd yet, I think it might have been Monday. So, I might possibly be in the 2 week wait!! They seem like torture sometimes....here's to hoping this is my cycle!!
I had one of my customers come into the pharmacy and ask me how I was. Then he asked me how my baby was. I then had to explain what had happened with Carli. I know he didnt mean it the way it came out, but he said, "Well, at least she didnt live that long." I of course kept my cool. But in my head I was screaming, "WHAT??? At least she didnt live that long????" I know what he meant, but come on! I really dont hold it against him. I sit there and look at her picture and the same question comes up. Why Carli? What did any of us do to deserve to not keep her with us? I feel like a broken record. And it kills me!! Sometimes I feel like I am just barely making it thru the day. It seems like when I get to work, I wish the day away cuz I dont want to be there. I feel like sometimes I have a front going on. I cant really let what I am feeling inside show on the outside. Then it all comes back to thinking about another baby. Which sometimes I feel guilty for wanting. I know in my heart that Carli understands my desire to have another baby so soon after her, but I still feel horrible.
I am glad that we have softball/t-ball to keep us busy this month! I dont know what I will do next month. I know something will pop up...I was reading Jana's blog and felt so sorry for her. I can only begin to imagine what it is like to have Carson with her, and be thinking of Drew. I have thought about what it will be like when we have another one. I know that I will be thinking of Carli thru all of the steps.
In our new house here, the playroom would have been Carli's bedroom. Right now it is a mess with some toys and other stuff that doesnt have a home yet in it. Mikaela had told me that Carter told her the other nite that they need to clean it up for the next baby. That made me smile..I think having another baby will help us ALL heal some. Carter even asked me if we have another sister what her name will be...cuz he doesnt want to name another baby Carli. I told him to not to worry about that!! I have thought of another middle name that I like to go with Mackenzie...that is, if Casey would even go for it!! Mackenzie Lanae....I dont know if he will go for it thou...he wasnt too fond of the name Kaia..so I can only imagine what he will say about Lanae!! *LOL*
That is right!! We have a victory!! Mikaela's softball team won on Thursday nite!! Can I hear a Woohoo?? *LOL* They played really well....it kinda made you wonder when the first at bat ended with 3 strike outs!! But these girls came ready to play ball!! Mikaela had one strikeout and a single! She did really well, but kinda got an attitude when her coach put her in centerfield!! Oh, and you could tell that she was NOT happy!! She had been playing 2nd base, and doing a really good job at it. Then, when her coach put her out in center, her whole demenor changed. Mikaela wouldnt get in the ready position until I hollered at her...such a site. Nothing like throwing a hissy fit during your game!! I still love her nonetheless!! Silly girl! She has practice today. It should be more uplifting than what we all originally thought. Coach told the girls that if they didnt start getting serious, he was going to have long practices that werent going to be any fun!! Maybe it wont be so bad now!! I have another thought I want to blog about, but I will have to do that later, after some much needed how cleaning!!!
This is will be short, since I have to get to work. Mikaela's softball team has lost the last 3 games they played. Mind you, they have all been within the last 24 hours. Their very first game ended in a tie, since we all had work/school the next day. Monday nite, Mikaela had a double header, game at 6:30 and again at 8. They lost the first one 5-3, and the second one 10-0! The 2nd team they played Monday was good...so was the team last nite!! They lost last nite 13-0!! I am so upset!! Mikaela had really good plays and got hits...so I cant be upset with her! We have a really young team, so I know that doesnt help...but some of the mistakes they made last nite were stupid ones!! Oh well!! Hopefully we will fair better Thursday nite!!!
The past few days have been really really hard. I feel like I had been doing ok for awhile. Then these past few days, just thinking of Carli brings almost uncontrolable tears that threaten to break the dam. I just think back to the very beginning of my pregnancy with her, back to before I even knew I was pregnant. Casey and I had gone on a motorcycle ride to a lake that is about 20 minutes or so away from here. As we were riding along, I saw this beautiful double rainbow. It hadnt rained recently, so I was extremely shocked to see such a sight. I just seemed to stare at it in amazement!! It was at that moment that I knew after 3 months of trying to conceive, that this was THE cycle. Sure enough....right before I was expecting to start, I tested. And I got my positive!! It just seemed that everything was going along so well!! I was going to have my last baby by the time I was 30, which happened February 7th. I was having the baby girl that I wanted. It just all seemed to be perfect!! There are so many things that made me feel like that...too many to list.
I was at Mikaela's softball game the other nite, waiting to find out if it was going to be cancelled or not..and it hit me! I should have a 2 month old to be loving and playing with, one to keep us entertained! It bothered me yesterday too at Worlds of Fun...I saw all these cute little babies...and it made me upset that I wasnt having to lug around that big stroller while chasing Carter and Keaton. I really think that weighed me down yesterday. I really enjoyed watching the boys have fun...but I had to hold back my tears a few times yesterday. It sucks so much!! I am hoping that this cycle will be the one for this next baby! Come on Angel Carli!! Help Mommy with that magic!!