Tuesday, December 30, 2014

Fighting the insurance company

Yes two months later and we are STILL fighting the insurance company for Lilah's rsv shot. Progress is slowly being made, but it is progress. I won't lie, I am furious! But, I also know that being furious with these people won't move us any closer to getting these shots for her. Therefore, Al is taking care of this situation and filling me in when he gets anything new. Well today we did receive some more news. Here is a breakdown of what has been going on:

We were first denied when Lilah was released from the NICU back in November. She did get her first shot while in the hospital. We contacted the insurance company to find out why she was denied. Come to find out, our pedi didn't give them the required information, only that she was born at 30 weeks. So our Cardiologist wrote a letter of medical necessity stating that Lilah had congestive heart failure and could die if exposed to RSV. We then get the run around for weeks and weeks. Between Al and the Cardiologist calling almost daily, we were finally put through to a case worker that has been working with us. Another two weeks go by. Now Lilah is two weeks past her second shot (which she never got). Today Al gets a call from the insurance case worker asking if we got the shot approved. He told her that we STILL haven't heard back. So of course she puts us through to a woman that handles all of the HCA insurance ( company that AL works for) who then tell AL that Lilah should have been approved for all the shots because employees of HCA don't ever required pre-approval. Are you effing kidding me??  So Lilah is now going 2 1/2 months of no RSV shot and is now at home sick with a cold and she should have been able to get the shot all along??? I think it is safe to assume that I am beyond furious at this point. Al is still waiting on another call back and we will see where to go from there. I firmly believe we have been getting the run around this long because they are prolonging spending the money on these shots, until they absolutely have to. 

So we wait some more.........................

Like I said, me and the two girls are all sick and at home with coughs, runny noses and feeling like crap. I am a complete paranoid mess about Lilah getting sick. I have been bleaching the house, bottles, pacifiers, my hands, everything. I am also wearing a mask and running the humidifer. We are doing steam treatments in the bathroom twice a day. Poor Olivia's nose is starting to bleed from either all the sucking or the cold. I was hoping the saline drops would help that, but they don't seem to be helping that much.

Keep us in your thoughts for a speedy recovery.

I will update when we find out what is going on with the RSV coverage.

Sunday, December 28, 2014

Our First Christmas

Everyone knows that I am not a big fan of Christmas. After talking to Al, I decided to start over and give this Christmas thing a real shot. So it was my first one with the new attitude and our girls. We originally were going to stay home and keep the girls away from people. They are a little over three months old and so far they have been healthy. I say so far because after we changed our minds and took them to Arkansas, we came back and I have a nasty cold. Al's grandfather is 96 years old and hasn't been able to travel and we are afraid this might be his last year, so we wanted him to meet his great grand-daughters. Al's father was nice enough to get us a hotel for a few nights. It was to crowded at their house with both Al's sisters and their families. Plus we were afraid the girls would get over stimulated ( which they did). It was nice too go back to the hotel  and get some quiet time. For the most part they did great. It was a three + hour trip each way and they slept for the most part and maybe cried about 5 or 10 minutes near the end. Also why we were there I decided to start Olivia on soy formula along with rice in her bottles. ( If anyone wants to tell me how bad this is and she is too young, please keep your comments to yourself because this is my parenting choice). Well after a day of this change we have a new baby. She is not spitting up or screaming during and after feedings. In fact she is smiling and cooing etc. I was so happy with the change in her! She was also sleeping through her 11pm feeding. 
Here are a few pictures of our Christmas: 

Al's parents
 Al's gramdfather
 Al's sister and husband

 Al's sister

Tuesday, December 23, 2014

Merry Early Christmas

I wanted to wish all of my friends and fellow bloggers a Merry Christmas. We are packing up and heading out to Arkansas to celebrate with Al's family. We are pretty excited that the girls get to meet their great grandfather ( Harpo) and both their aunts/families. Packing for a trip with small infants is a chore in itself. I have literally made a list and I am checking it twice LOL. Mainly remembering all of Lilah's medical accessories. 

I will keep those of you still waiting on your little miracles close to my heart. I know that Christmas is a difficult time of the year. You put on your brave faces, smile and try to make it through. It is so hard. I know I sound like a broken record, but don't give up. I have faith it is going to happen. I can tell you story after story of woman I know that got pregnant after SO MANY failures. SO many years. I did. So please know you're not alone and never forgotten. 

MERRY CHRISTMAS TO ALL ..........................................  FROM THE RAPPS.


Saturday, December 20, 2014


It is these moments that make me beyond grateful for all my girls:


 This video is absolutely adorable! I hope you are able to view it.




Thursday, December 18, 2014

Three Months

On December 10th the girls turned three months.

I also had to share this picture of Al and Lilah yesterday at her cardiology appointment. Priceless

Wednesday, December 17, 2014

The past week

This past week has been the hardest since having the girls home. I finally broke down yesterday and did something I hardly ever do. I cried. A lot. for about an hour I just cried. Lilah has been refusing her bottles and we are back to tube feeding her. She was still puking up all her feedings. This was even after the doctors started her on reflux medications. She was screaming all throughout the day and night, at the top of her lungs painful screaming. Nothing helped. So yesterday after refusing her bottle, she gagged and up came her tube through her mouth. This is only the second time her tube has come up and out her mouth. Luckily we can hook the tube through her nose and pull it out quickly. I lost it and felt so defeated as a mother. I have said this a few times, but I was feeling more like her nurse instead of her mother. Most of my day consists of sorting medications, replacing feeding tubes, blah blah blah. You all know because I have mentioned it over and over. It is hard to understand unless you have been there. Having a preemie is hard, having a preemie with a HUGE hole in her heart is harder. I just want to feel like I am bonding with my daughter. OF course with all the added stress of her medical issues, I get frustrated and upset. None of this is her fault. I just want to do the best for her.

Today was her cardiology appointment. Everything is the same. I asked if there was any chance her hole would get smaller and they told me no. Because of the size of the VSD her right artery is also offset which is causing issues also. After fixing her VSD the artery should move back into place. They want to wait until after rsv season for the surgery ( which will be mid February or early March). That is another issue. We are still fighting our insurance company for them to cover the series of shots for her. The Cardiologist is off next Wednesday and she is going to call them on her day off and let them know AGAIN that Lilah could die if she gets RSV. She fits into every criteria for these shots. We have been fighting them since Thanksgiving. It is freaking insane! 

Once Olivia starts daycare, they will need to sleep in seperate cribs. We will have to be very careful on pacifer sharing etc. If any of the kids at daycare gets sick I have to remove Olivia so she doesn't bring anything home to Lilah. Right now our job is to keep her healthy and gaining weight until the surgery. That may seem like an easy task, but I assure you that it is not. 

I can't wait to see my little girl healthy. See her growing like her sister. She her with energy. See her not sick and hurting. I can't wait for that day. It will be the one of the best days of my life. 

Wednesday, December 10, 2014


This is my first week at home with the girls alone. I give ANY woman of multiples serious credit! I know that most of the time I don't say much because my friends with a singleton get so offended. The truth is, raising multiples is harder. I don't want to take anything away from others, because I know that raising a baby in general is hard work. This week has tested my patience to say the least. Lilah screams ALL THE TIME. Bloody murder screams. She pukes ALL THE TIME. We can't keep a bottle down. She gags and pukes and pukes and pukes. I seriously wash about 20 burp clothes a day and about 8 or 9 outfits. She is hardly ever happy or smiling. She doesn't want to nap. When I do lay her down she will start screaming in about 10 minutes and wake her sister up. I know how much I love my girls and I know how hard I have worked for them. I won't apologize for venting either. I know some people will think I sound ungrateful and that is okay. I just want Lilah to get past whatever is going on with her. The other day she pulled her tube five times. Luckily we are at 100% bottle feeds now, but still have to keep the tube in for all her medications. I also talked to her peditrician who suggested I start her on 1 teaspoon of cereal in her bottle to help gain weight and help keep her food down. I wasn't set on the idea at all because she is a preemie. I am now starting to consider it. Al has another call into the Cardiologist today. She has mentioned starting Lilah on reflux medications. I am also having him ask her about implementing cereal. I was scared it could effect her heart condition. I just want to try whatever I can to help her. I am tired and so frustrated. And I am definitely not cut out to be a stay at home mom. I thought I wanted to be, but it is clear now that I am not. Any of you moms that stay at home with your babies, I seriously give you credit, you rock! 

Well enough whining for today. Sorry I am stressed to the absolute max. 

On a good note, because I always like to wrap things up with positive. Lilah is gaining weight and now is at 6 lbs 15 oz. We have her Cardiologist appointment next week and will find out when her surgery is. I love being a mom and I love all of my girls and know how blessed beyond measure I am.

We also got our professional pics back of the girls. Here are a few of my favorite pictures. 


Friday, December 5, 2014

2 A.M Blogger

It seems that 2 am blogging might actually work for me. I am finding it hard during the day to actually sit down and read blogs plus blog myself. Since I do the 2 am feeds, I have to wait an hour for Lilah's pump to feed her, I have some spare time. It consists of shopping online, watching some t.v, washing bottles and now and again, dropping a few lines on my blog. 

It really seems like I don't have much to contribute any longer. I have turned into a mom that posts cute pictures of babies and updates. It seems so weird to me that I am no longer going through treatments, peeing on sticks, and taking tons of medications to get pregnant. It seems weird that will never be part of my life again. It is a part of my life that I am thankful for though. It is a part of my life I will never forget and don't want to forget. It is a part of my life that I will share with the girls when they get older. I want them to know just how hard Al and I fought to make them and then get them here with us. 

For the most part they are pretty happy babies. Lilah has a few meltdowns during the day now and she is a screamer! Well it is high pitch and almost sounds like a cat. When she wants something, she wants it now and there is no other option. But, then she can just sit and give you the biggest smiles ever. It seriously melts my heart. She is still on her feeding tube and there have been several issues with that. Over the Thanksgiving holiday we ran out of the tubes from the NICU and started using the ones that the home health care place sent. Well they were cheap and within one day she had spit up her tube three times. One time it came out of her mouth. They were so lightweight that whenever she would cough or gag, up it came. Al and I were totally beside ourselves and didn't know what to do. We called the healthcare company (which was no help), we called the Cardiologist ( which told us to take her to the ER), we called the dietician ( which never returned our phone call) and last we texted our  favorite RN in the NICU. On Sunday morning Al was at the NICU at 5:30 in the morning picking up a few tubes for Lilah. She said we could sanitize and reuse. Thank goodness for caring people. So after fighting with the home healthcare people, they are suppose to be sending up a heavy duty tube. We shall see. I am not getting my hopes up. And let me tell you how hard it is to see your daughter choking tubes up. 

Olivia is our little drama queen. Oh boy, oh boy. She cries ALOT. Not a hungry or hurting cry, a forced cry to hold her. Of course we love holding babies in the Rapp household. I don't believe that holding them is spoiling them. I worked way too hard to get them here and I am not going to miss a minute with my little Drama Queen. She is also almost 8 lbs and growing so quickly. The other night Al put a little elf hat on her and she started screaming. I laughed so hard. She also doesn't like eskimo kisses. So much like her mom already. 

I still have 5 weeks maternity leave and Al goes back Monday. I will be all alone with both girls and hoping I have what it takes to do this. I won't lie, I am nervous Nellie on this one. 

We have also decided to keep Lilah home as long as possible before putting her into childcare. Olivia will start on January 12th and I am hoping to keep LIlah home until the end of March. Lets keep our fingers crossed I can get enough friends and family to stay at my house and watch her. Oh by the way we are still waiting to hear back on the RSV shot. The Cardiologist sent in the letter of medical necessity for LIlah. 

Tuesday, December 2, 2014


Before the girls were even born I went on Etsy and starting buying cute things for professional pictures. As you know there was a slight hiccup and a two month delay, but I am happy to announce we finally were able to get someone over to our and have pictures done. Al and I did decide to leave Lilah's tube in for the pictures because this is part of our life right now and her journey. The photographer did photo shop a few out before I told her our wishes. Here is a preview of our blessings: