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:

Tuesday, November 25, 2014


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.

Friday, November 21, 2014


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.


Thursday, November 20, 2014

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.


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


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. 


Monday, November 17, 2014

Tuesday, November 11, 2014

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)....

Sunday, November 9, 2014

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.

Tuesday, November 4, 2014

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.

Monday, November 3, 2014

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.

Sunday, November 2, 2014

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.

Friday, October 31, 2014

Happy Halloween!

This is my favorite holiday hands down. It starts on the 1st day of October. All month I watch scary movies. Of course I have seen them all 100 + times, but I still can't get enough. All the movies range from old classics like The Exorcist to the down right tacky Zombie Strippers. I love October and Halloween. My original hopes were to have the girls on Halloween and now they will be almost 2 months old. I dressed Olivia up today in her first Halloween outfit and have Lilah's in my diaper bag. She won't get to wear it tonight while I am there because, but Al is coming up with me again tomorrow and we are dressing the girls up and taking pictures of them together. I can't wait. Did I mention how much I love Halloween?

Lilah Update:

She is now taking 2 bottles a day! I think this little girl could be home before Thanksgiving!

Thursday, October 30, 2014

Leaps and Bounds

This week started off so badly. Lilah was losing weight, in fact she lost 60 grams in one day. Al and I were so discouraged. But, our little girl turned the corner as always and she gained 90 grams the day after and last night she gained 160 grams!!! She is now weighing 4lbs 11 oz. Yesterday at the hospital she actually took 27 mls from her bottle and her respiratory rates stayed nice and low. I know this is wishful thinking, but I think our Lilah could be home for Thanksgiving!

I also decided to decorate her NICU apartment and give her some nice scenery.

Update on her roommate:

I found out yesterday that she will require a ventilator as long as she is living. My sister and I seem to think she may have cystic-fibrosis or something similar. It doesn't look like she will live a long life. It brings tears to my eyes, but I have decided to do what I can while we are there to make her life better. They put her in a crib yesterday and I asked if I could donate a mobile to her. She needs something to look at during the days. The nurse told me yes! I am bringing it today for her and so excited. I hope she likes it. My sister has also bought her some little Minnie Mouse socks to wear, along with some little pants. She can't wear shirts because of all the lines in her little chest etc. I am sure fond of this little girl and she will always have a place in my heart.

Tuesday, October 28, 2014


Today Al took off from work to spend a daddy and daughter day home with Miss Olivia. This gave me time to get some things done. I got my flu shot finally. I was able to finish up some banking stuff and come to work without my little gem and finish some work up. Therefore a few extra minutes to blog and catch everyone up on the girls.

It is hard to believe that Lilah and Olivia are 7 weeks old. It is harder to believe that Lilah is still in the NICU. As hard as life is right now, we have a solid schedule and that makes things easier. We were told yesterday that Lilah is growing out of the "preemie" phase and is really wanting interaction and to be held. I won't lie, hearing that broke my heart into a million pieces. I spend hours with her each day, as done Al. We hold her and talk to her. I kiss her head and tell her stories, but she is needing so much more right now and it is impossible to give it to her while she is in the NICU and we still have Olivia at home. I am thankful that my little girl won't remember these early days. I am thankful that we can make so many memories with her when she comes home. As of today she is weighing 4lbs 5oz. She is only taking about 3% of her feedings through a bottle. This is what will keep her in the NICU longer. I spoke with the one of her doctors last night and they think if she continues to gain weight and keep the fluid off her lungs that she is definitely on the track for coming home.  Then her heart surgery will still be  planned for 2-3 months. Of course the biggest question is when? No one knows. I just want her to know that she is so loved.

Now Lilah has a room mate and it is absolutely heart breaking! The little girl is 4 months old and has been in the NICU since birth. She has went through 3 surgeries and is on a vent. still. She opens her eyes and turns red daily. Her monitors are constantly going off and the nurses are always over there trying to help make her more comfortable. As heart breaking as this is, she doesn't have any family that cares about her. The nurses buy her clothes and toys to keep at her bedside. They talk to her and stroke her hair. It kills me! I want to go over and touch her, but she never formed an attachment and doesn't like anyone to touch her or show her affection of any kind. Plus HIPPA doesn't allow to me to have interaction with her. I just wonder if her parents feel bad? Do they feel guilt? Do they wish things were different? At these moments I realize that even though I have a sick daughter, she is so lucky and I am so lucky. She will always have our love and protection.

Here is a picture from yesterday. I decorated her "apartment" so she could get some stimulation.

I love her so much. I have to keep reminding myself that this is only temporary and we will have our entire life ahead.

Friday, October 24, 2014

Busy Life........

A quick update while I have a few extra minutes.

The girls are doing great. Olivia came home last Friday and life has been a blur since then. I started back to work . This week Olivia had four doctors appointments. I definitely feel like I am missing my superwoman cape while juggling a baby home, a baby in NICU, doctors appointments and working full time. Some times you don't have a choice and can only make the best of what is put in your path. That is what we are doing.

Lilah is gaining weight. She is up to 4lbs 3 oz, but still no release date from doctors. I suspect it will be at least another 4 weeks, I am sure more like 6-8 weeks. They are just putting weight on her right now and introducing bottles. The problem still remains giving her to much feedings cause more fluid in her lungs that and she is already on four heart medications. So things are slow, but progressing. She is such a fighter!

Olivia is now 5lbs 3oz and I am such a nervous mom with her. Right now she is sleeping in a bassinet next to our bed and I keep my hand on her at night to make sure she is breathing still. My sister bought us the Angelcare mats and Al will install them this weekend. Those along with my video monitoring system, I should feel somewhat at ease. She is eating well and a happy baby.

Here are some pictures of both girls. Sorry for such short update. There seriously aren't enough hours in the day.