Updates

I have a few updates on the girls and especially Lilah. We received a denial letter in the mail a few days ago for Lilah's RSV shots. If any of you are knowledgeable about these shots, they are EXPENSIVE. It is a series of five shots total and run about $3000-$3500 per shot. According to our insurance company she was denied because she was born after 29 weeks. Of course she has congestive heart failure and is on a medicine cabinet full of heart medications she takes daily. So to say the least I have been so scared and stressed out. The girls are suppose to start child care on January 12th. How can I put her in a center around sick kids without protection? Well I can't. After numerous phone calls to family members out of state and in state I might have found a solution. I have an aunt in California who can come down and stay with her for a few weeks. Al's mom can come for a few weeks and my sister is available also. If we can just get her through RSV/FLU season I would feel better about daycare. 

Today was also her Cardiologist appointment. Al took her today because I was home with Olivia and Cierra ( Cierra had her four wisdom teeth pulled yesterday). Well Al called and said the appointment went great. Lilah is weighing 6lbs oz. The Cardiologist is also writing a letter of medical necessity for Lilah and sending to the insurance company. She feels very confident they will accept the letter and cover the remaining shots for her. I hope so..... We are also increasing feeds from 42 mils every three hours to 52 mils. Al and I have been waiting for this appointment to increase her feeds, but this little girl has been cranky and wanting more food. We didn't want to increase the volume because it could be dangerous and put to much liquid in her lungs. But, luckily her lungs sounded good today and now she can eat more food and get bigger! The Cardiologist said we can also cut out the 2 am medications (which is  huge) and she is changing some of her other heart medications. Depending on blood work today, we might even be able to stop two of the medications! She goes back in three weeks and they will make the determination on when her surgery will be. The doctor seems to think it will be in January. Let me tell you what an amazing, strong fighter my daughter is! I am not sure how Al and I got so lucky and were blessed with these girls. 

It is so hard for me to see people complaining and bitching about things that are so small and insignificant anymore. Then I look at my life and know it is the only thing I do have control over and every single day I am so lucky... so very lucky... to have my beautiful family.

On a different note: 

I know I haven't mentioned this in a while and I apologize. For those of you still trying and going through the disappointment of failed cycles. I do think about you often. I still read your blogs and I still cheer you on. I know I haven't commented a lot lately, but you are not forgotten. As I have always said, please keep fighting for what you deserve and are entitled to. Please keep going forward and especially through the darker hours. I know some days it doesn't ever seem like you will have your beautiful babies, but I do believe that one way or another you will be mothers. For some it will take months and other years and maybe many of years, but don't give up because you have come to far. 

You are not forgotten.

No ROP

Today was the girls 4th and last ROP eye appointment. IF you have never experienced one you are very lucky. Poor babies. They take metal specculms and pry their little eyes open and the poke a metal rod in there. It is heart breaking to watch. Good news is...... this was their last appointment and they were cleared for ROP!

Today Lilah and Olivia are two days past their original due date... Lilah's cardiologist appointment is next Tuesday. I am hoping for some good news.

 

Schedules are life savers.

Well things are going great at home for the most part. I did learn earlier in the week that there is something called "the witching hour" and let me tell you, this is a real thing! Our girls are really great sleepers and happy babies for the most part. Until 9pm-11pm and they become possessed! Screaming, blood curdling screaming. We hold, we rock, we change diapers, we walk around, we talk, we kiss their cute little heads, we give gas drops. Nothing works.... After the nightly witching hour, our little angels return and everything is happy in the Rapp household. Oh and let me tell you how a schedule has saved our lives. I am not sure about other moms of singletons or twins, but we need a schedule. 

Since Lilah came home, we put both girls on the NICU schedule. This includes feedings and diaper changes every three hours. It is a must with Lilah and especially because of her medications. She is on about 8 different meds and it is given to her every three hours. Our schedule goes like this:

8am- Wake the girls up. Change diapers, listen to make sure NG tube is in place on Lilah. Give meds, bottle feed Olivia and tube feed Lilah

9am-10:30am- Cuddles and nap time

10:30-11am- Feeding preparations. Change diapers, make sure NG tube is in place,  give medications, start warming bottles and feed at 11am.

11:30-1:30pm- More cuddles, activity time ( either activity mats, swings, or bouncers), naps

1:30-2:00- Feeding preparations. Change diapers, make sure NG tube is in place, give medications, start warming formula.

2:30-4:30- naptime

4:30-5:00- Feeding preparations. Change diapers, make sure NG tube is in place,  give medications, start warming bottles and feed.

5:30-7:00- More cuddle time, read books, play in swings, activity mat, spend time with big sister and get more cuddles.

7:30-bathtime

8:00 pm- Feeding preparations. Make sure NG tube is in place,  give medications, start warming bottles and feed.

8:30-bedtime

9pm-11pm- Lots of screaming and more cuddles

11pm-1:45am- sleeping girls

1:45am- Feeding preparations. Change diapers, make sure NG tube is in place,  give medications, start warming bottles and feed.

2:30-4:30- Sleeping girls

4:30- 5:00am-Feeding preparations. Change diapers, make sure NG tube is in place,  give medications, start warming bottles and feed.

5:30-8:00am- Sleeping girls

 As long as we stick to this schedule things run pretty smoothly in our household. During the days Al and I both split up taking care of girls, house work etc. I usually go to bed around 8 or 9 and sleep until the 2 am feeding. Al goes the 11pm feeding and then the 5 am feeding. 

Here are some picture of our growing girls. Lilah is now weighing 6lbs 1 oz. 

 

World Prematurity Day

This day will forever hold a special place in my heart.

Grade 6

Grade six. That is the size of Lilah's vsd. The largest possible hole. Today was their 2 month check up and shots. Every time I hear how "huge" her whole is, I feel sick to my stomach. I just want to live in denial that my daughter has congenital heart failure. At home Al and I are both doing every thing possible to help our daughter grow strong so she can get her open heart surgery. She takes 7 different medications daily ( 3 of which are diuretics). We have to blow air in her stomach every 3 hours to make sure her tube is in place. It is scary. I cringe every time she coughs ( scared her tube is not in her stomach). We have boxes and boxes of medical supplies, tubes, syringes, tegaderm, stethoscope, etc. With all the fear, all we can do is what she needs from us. We are her parents and protectors. I look in her eyes when she is awake (which isn't much throughout the day) and know how much I love this little girl. I hope that one day we will have our sweet Lilah healthy. Not lethargic. Not pale, but healthy and pink and full of energy like her sister. I know we will get there and it is going to be a long road.

Today she weighed 5lbs 6 oz, that is 2lbs 6 oz bigger than birth and she has gained 4 oz in a few days since being released from the hospital. Of course we need to keep a close eye on her to ensure she doesn't have to much fluid on her lungs. So we want her to gain weight, but not to fast and not to slow..

Olivia is up to 6lbs 8oz and that is 3lbs 3oz bigger than birth.

Al and I are tag teaming this parenting twin thing and doing amazingly well. Our schedule is working so far ( knock on wood). The girls are sleeping in their crib at night and doing great so far ( knock on wood). We are actually each getting 6-7 hours of sleep a night! ( knock on wood)....

Coming home celebration

Yesterday was pretty special. My sister, brother in law and nieces came over and we celebrated having Olivia and Lilah home with us.

She's HOme

Our life is complete.

She's coming home

Our sweet Lilah Grace is coming home this Friday. My maternity is finally starting :)

Also if you know of anyone that is interested, I am selling a Medela double pump with many accessories for $75 and that includes shipping.

The end of the pumping era

I say this with 0% guilt. I am DONE pumping. All the breastfeeding nazi moms can say all they want, but I am done and I am happy! I was never a big fan of breastfeeding, but wanted to do what was best for the girls and decided to give it a fair shot. What I didn't know is the girls would be born early and I would have to exclusively pump for a extended period of time. Holy crap pumping sucks! I did exactly what the LC told me. I pumped every 2-3 hours throughout the day and took a 4 hour break throughout the night. I pumped and pumped and pumped and only got out about 1 1/2 -2 ounces per pump ( on good pumps), but I stuck with it the whole time they were both in NICU. Olivia came home and the doctors wanted her on a high calorie formula to help her gain weight. I breastfed her twice daily and did the rest bottles. Meanwhile still pumping like I was told for Lilah. Fast forward two months later. Now Lilah is on a high calorie formula and I still can't breastfeed her because she doesn't have the whole bottle feeding down yet, so I pump and pump some more. Well the doctor told me the other day that I should get a gold star for my effort throughout this time. She said she didn't know how I stuck with it and even with a very low supply. After talking to her I have made the decision to hang up the milk suckers and reclaim my boobs. I am actually proud of the job I did with the girls and I know they both benefited from what I could provide them. 

Don't get me wrong, I am happy for the woman who can produce mass amounts of milk for their babies. I wish that would have been the case for me, but it is almost impossible for mothers with babies in the NICU for long periods of time and having multiples. One thing I do ask for moms who can produce like a dairy cow and have massive amounts, please consider donating to your local NICU or milk bank. My girls both depending on donor milk throughout their stay and it meant so much to Al and I that this was available.

Coming Home?

My sweet Lilah Grace has been in the NICU for 71 days. Today I got the phone call that I never thought I would get. Al called me from the hospital and after a big pow wow between the doctors and her Cardiologist team, they want to send her home. She won't be coming home fully recovered though. As of right now she is only taking about 20% of her feeds through a bottle. They will send her home with her NG tube and we will continue 1/2 feedings through tube and 1/2 through the bottle. She is also on 4 different medications for her heart which she takes several times daily. We would be able to give those through her tube also. They will also send her home with monitor for her vitals such as pulse etc. In order for this to happen we will need to stay at the hospital a few days with her so Al and I can learn how to replace her tube every 3 days and work the monitors etc. The doctors feels it is everyone's best interest for Lilah to come home and continue to grow. Since she is more alert now, she is so unhappy being in the NICU and is needing to be with us. As long as she continues to gain weight at home then we will still be looking at open heart surgery months from now. So we could have our two angels home for the holidays.

I never thought this day would come. 71 days in the NICU seems like an eternity. I do know that other babies are there so much longer, but this has been so long in the making. I had my daughters on September 10th and now into November we are still waiting to be a family like most normal people. It was taken from us because the girls came so early and now I want to make up every single missed second.

I will finally be able to take my long awaited maternity leave. Al also has a few weeks leave from work.

Please keep us in your thoughts and prayers. There is still a LONG road ahead with her surgery, but we are on the right track. Al will call insurance company in the morning to see if the at home services are covered and we will go from there.

Thanks again for all of you that have supported us through this crazy pregnancy....

Olivia on left and Lilah on the right.