Wednesday, January 14, 2015


I made the change to wordpress yesterday and many of you have contacted me for links to my new blog. I also heard from a few of you that you weren't able to see my blog. Unfortunately you will need to set up a wordpress account or you won't be able to follow me. Although this is a pain in the butt and I will lose many followers, I am keeping my blog this way.

I do want to let you know that I set up a private NICU facebook group for the girls when they were born and I still update on there about how they are doing etc. If you are unable to follow my new blog and want to keep up with the girls, please send a request to me. There page is Lilah and Olivia Rapp NICU 2014.

I am excited about starting this year new with my girls, letting go of bad things in my life and just moving forward. Once we get past this surgery, I hope that all the health scares are over for a VERY.LONG.TIME.

Thanks to everyone who had helped support me through so many years of infertility and then a difficult pregnancy and now getting Lilah's heart fixed. It has meant so much to me. You all have meant so much to me. I will continue to keep this blog to follow everyone so I don't have to move that over to my new one. So I will definitely keep up with you beautiful ladies!

Saturday, January 10, 2015

Back to work and Four Months

. I am not sure where the past nine weeks have gone. I now know what if feels like to be a stay at home mom and even more, one of twins. I never thought that stay at home moms ever had a easy job, but I also didn't know how hard it was either. There were some days that I was ready to be back at work do to all the stress. Some days I wanted to be home with my girls forever. Luckily I was able to work out a good schedule during the day and was able to keep the house clean and chores done. Thankfully Al still does all the cooking and grocery shopping. He also takes Olivia grocery shopping with him every Sunday and that is a huge break only having one baby. Things are so much easier with only one baby after you're used to juggling two. 

So I have prepared everything for going back to work on Monday. We are still keeping Olivia home one more week before she starts daycare ( that will be another post). This week my sister is staying at our house three days and Al is staying home two days. Next week his mom is coming to stay with us for two weeks and watching Lilah. We heard from cardiology yesterday and Lilah was approved for surgery. We are now waiting for the surgeon to call and schedule. So she will have her heart surgery within the next four weeks. After much consideration and discussions, Al and I decided we only want one of us home taken care of her after surgery. We thought Al could take long term disability and get a partial paycheck, but it only works that way for him, not any other members of the family. Luckily we have been saving for something like this. He will be able to stay home with Lilah for 5 weeks after surgery. We also have my aunt flying in from California to help where needed. This will come in handy while Lilah is in the hospital for sure. So I think we have everything in place.

Today the girls are four months old. Yesterday we had Lilah weighed and the RN was able to get a hold of a preemie growth chart. Her weight put her at 5th percentile and height at 25th. We have a lot of work ahead of us, but she can do it. All the doctors constantly tell us how impressed they are with Lilah. According to the cardiologist, her hole is so big that she shouldn't even have the energy to drink her bottles. They have also found another issue with her heart, but the surgeons will confident it will be fixed when they are repairing her VSD.

I will leave you with a pic of my beautiful girls at four months: 

Wish me luck returning to workforce on Monday. 

Thursday, January 8, 2015


Judgement doesn't stop after infertility. I am not sure why I thought it would and especially in the new world of social media. I am guilty of it. But seriously why does it have to be this way?

What's wrong with other mothers raising their babies differently than the way you do? Is your way the only right way? I've ended up leaving my Facebook groups for this reason and I still see it on my private Facebook and in real life. 

Is it okay not to breastfeed your baby? Contrary to popular belief yes it is. Your baby will still love you and not grow up with mommy issues because you fed them formula.

Is it okay to implement cereals or other foods to your baby before the age of six months. Yes, also contrary to popular belief your child can be introduced to these things and still live. You won't get your baby taken away for child abuse.

Is it okay to let your baby co-sleep instead of introducing them to the crib? I am by no means a doctor or expert, but I think short of jumping on them, blowing smoke in their face or having sex while the baby is in the middle, you should all be okay.

Is it okay to let your baby sleep in their cribs from early on? I've seen this happen many times and the children seem to be healthy and happy. I haven't noticed any abandonment issues.

Should I go on??

The point is, raise your babies the way you feel is the best for your family..

I do have a few suggestions on some things we might all refrain from:

No prescription or alcohol until they are older
No tattoos this young because they could change their minds.
No letting them help you drive down the interstate doing 70
They don't need a Facebook because it will cause unnecessary stress for them
Probably no drinking out of the toilet ( even if it's clean)

Tuesday, January 6, 2015

Cardiology Appointment

Today was Lilah's cardiology appointment. She is having them every three weeks now until surgery. It couldn't have gone any better. First of all, my big girl weighed 6lbs 9oz three weeks ago and today...... 7lbs 14 1/2 oz! She is also 21 inches long. I couldn't believe it. In fact, I had the nurse check the weight again. I think her reflux medications are helping. She is still throwing up after every feeding, but not as much volume. I have also been giving her more tube feedings verses bottles. My little girl is very stubborn and most of the time it is a fight for her to drink a bottle. By the time its over we have puke everywhere and lots of tears. SO I decided to make it easier on everyone that I do mostly tube feedings throughout the day and at her 2 a.m feed. Okay back to Cardiology appointment. The doctor is putting Lilah's case before the board on Friday and hoping to get her on the surgery schedule within the next four weeks. As happy as I am for this to finally be happening, I am SO scared of losing my daughter. I also know if she doesn't have the surgery that we will eventually lose her to heart failure. So it is really a double edged sword. Right now the only thing I can do for her is keep her healthy and growing until surgery. Of course the bigger she is, the less risk. 

I go back to work next week. My sister will be watching the girls for a week and then my MIL is coming down to keep Lilah for two weeks. My aunt is flying in from California for a month and Al is taking off work (without pay) for about 5 five after surgery to keep Lilah. We don't feel comfortable with anyone else keeping her after surgery. Since we have been dealing with all the medical issues with her since day one, we want to keep it that way as much as we can. Unfortnanetely Al found out yesterday that his disability pay only works if it is for him and no other members of the family. He decided to sell his mustang last month just in case something like this happened. So we will be able to keep him home for a month or so with her while she is healing. 

Miss Olivia will start back to daycare in a week. I am So happy it is only down the road from my job. Now I can go get lunch cuddles with her! We are also trying to wean her down on feedings. Since Lilah came home from NICU we kept them both on the same feeding schedules and it is wearing us down. The girls will be four months in four days and they still eating every three hours around the clock. Today the Cardiologist said we can move Lilah to every four hour feeds instead of three. So we will also be changing Olivia's feeds as well. 

Please keep our Lilah in your thoughts through the next few months. It is going to be hard on her and hopefully it will all pass soon and we will have a healthy heart little girl.



Thursday, January 1, 2015

Happy New Year

Our new year is starting off with some good news. Lilah was finally approved for her rsv shots. The prescription was called in and now we are just waiting for a home healthcare nurse to come administer! Happy New Year to us!

I am not really sure who is following my blog anymore, but I really want all of you to have a Happy New Year. I know that many of you are starting new treatments, moving on past treatments or have finally got your babies. Regardless where you are, I hope nothing but the best this year. I hope that you make many great memories.