NICU Mom

Today I am a NICU mom of two babies. They are 21 days old. I never realized how truly exhausting it really was. With that being said, there is no other place I would rather be. I watch my two beautiful daughters grow stronger daily. They look at me with these amazing smiles and such sweet faces. I look past all the IV's and the monitors daily. I remember the first week they were in the NICU, it was so overwhelming. I remember crying and crying. My heart hurt so badly seeing all those lines and seeing the monitors beeping red because of the Bradys (Bradycardia) spells. All the nurses phones start ringing and it can be very upsetting to see it until you get used to being around it. I also felt horrible they were in the incubators and haven't been with each other since pregnancy. They looked so lonely. I think the worse part for me and still is until this day, the leaving them everyday. No matter how many hours we spend with them, at the end of the day I do have to leave them and still suffer from such guilt.

As of today, Al and I have finally got a schedule together and it seems to be working well. He wakes up about 4:30 every morning and goes into work early. He works until 6 :00 and then walks over to see the girls in the morning. He spends about an hour holding and changing them and then heads back to work. At his lunch break he walks over and does kangaroo care for another hour or so and then goes back to work. I get up and get to work around 7:00 and work until about 3:00 or 3:30 and then head over to the hospital and see the girls until 7:00  or so and head home. Al makes dinner for us and we try to spend some adult time and conversation with each other. It has been so important to us that we keep our lines of communication up with each other. I am also on a 2 hour pumping schedule throughout the day. It is busy, busy, but it seems to be working. I also have to remember that this is only temporary. We will have our babies home soon. Hopefully Lilah can come home for a few months before her heart surgery.

Here is a pic of their Halloween outfits!!!

Tuesday Cuteness!

Okay ladies, here is my two little bakers! Their hats remind me of the Pillsbury dough boy :)

The girls are still doing fantastic! Top is Lilah Grace and she is weighing in at 3lbs 5.3 oz. Lost weight, but is gaining back again. I think the weight gain will continue to be a rollercoaster until the girls come up. She is such a good baby though. Bottom is Miss Olivia June and she is up to 3lbs 11.9 oz as of today. She is our calm laid back baby. Although she spits up every feeding. The doctors aren't worried because she is gaining weight daily. As of right now we go in a few times daily and hold our precious girls. I read books to them and tell them stories of what home is going to be like. I tell them about their older sister and all our animals. I am getting a cd player this week to put in their room so they can listen to some nice calm music during the times we aren't there.

As for me................. I am doing SO much better this week! So glad to be feeling stronger, it makes me better for the girls and their needs.

Update on girls

I had some extra time to write today. This morning I woke up with a red rash on my face and a slight fever. The NICU nurse wanted me to be checked out by a doctor before coming to see the girls (which I totally understand). They weren't sure about the rash, but thinks it is allergy reaction and gave me steroid shot, he does want me to wait 24 hours after my fever is gone before going back up to the NICU. Luckily I have amazing sister and husband. My sister sat up there all day with the girls and Al spends so much time up there daily with them. He gets extra snuggle time since he is only on other side of hospital. I am so happy my girls have their daddy so close, it makes me feel so much comfort throughout the day. 

I went back to work this week and it has been HARD. My bosses decided to put me on an hourly salary while the girls are in the NICU. This way I can make my own schedule. The bad thing is, I have to work at least 30 hours a week to maintain our bills until I get my paid maternity leave. It is so hard sitting up at work when I can be at the hospital with the girls. I know it is something I have to do right now. I am in the "suck it up and do it" mode right now.

Today the girls are 16 days old. Lilah might just be turning the corner. I try not to get my hopes up real high for fear that something else is going to happen, but I also want to celebrate her tremedous milestone. Her blood pressure has been steady for two days now. Her color is back and she is such a beautiful little girl. They have removed three of the IV's in her feet and started feedings back up very slowly. She is only on 2 ml at five times a day. They don't want to stress her heart out after just recovering from kidney failure. Everything with her is a very slow process, but my baby girl is recovering and had two great days. Right now that is ALL that matters!

Here is my beautiful little Lilah Grace: Today she is 3 lbs 3 oz. Finally starting to gain back all the weight she lost.

Where do I start on my Olivia June? Wow she is such an amazing little girl. Always full of smiles. For those who say babies really don't smile at this age and it is only gas, well I respectfully disagree. She knows our voices and knows my heartbeat when doing kangaroo care. She looks up at me and smiles. I smile back and think on how blessed I am to have this baby in my life and she is mine. Well mine and Al's :) Her feedings were up to 27 ml at five times daily, but she started spitting up after feedings so they put her IV back in and went down to 22 ml's. She is growing everyday and hopefully when she reaches 1800 grams ( which is about 4 lbs 2 oz) she will be taken out of the closed incubator and be able to wear clothes. This will be a huge milestone for her as well. 

Here is my amazing Olivia June. Today she is 3 lbs 9.7 oz.

It sure wasn't my plan to have them here so early and I do wish I could have kept them in a few more weeks, so there weren't so many complications, but I sure love these little girls!

I also want to give a HUGE shout out to my loving husband Al. Without you none of this would be possible. Our girls wouldn't be here. You truly amaze me everyday with the what a true man you are. I love how you jump in and change poop diapers without a second thought. How you love our girls and love me. I know that since the birth I have been suffering with some extreme emotional issues and you are always here for me. Washing and setting up my pumping supplies, tucking me into bed, hugging me and letting me know things will be okay when I am crying from missing them so much. My aunt was right the other day when she said you were a "saint" I agree with her 100% and count my blessings daily. I remember not to take advantage of you, but instead be grateful and love you more. Your parents did an amazing job when raising you into a man. 

I love you so much and more than any word could ever describe. You are my heart, along with our two new daughters and my Cierra.  


ADDED:

This is completely off the topic, but someone sent me an email this week (maybe) she had a little girl that had heart surgery and saw my blog through Cristy's blog. To this person, I am SO sorry I haven't answered you back and now I lost your email. Please know I am not ignoring you and would love to answer back. Could you send me the email again??

Twininversity Article

Well my story was on Twiniversity today. I welcome all of you to check it out.

http://twiniversity.com/2014/09/recurrent-pregnancy-loss-it-could-be-an-immune-disorder/

Lilah Update

Yesterday was such a stressful and trying day. There were many tears. Many. One hour before surgery, Lilah's kidneys started working and her levels are started improving. They called off the surgery. Al and I were SO relieved. Seeing all the IV's in her just made me sick to my stomach. My poor girl has been through so much in her short two weeks of life. I look at her and see so much of me in her. She is SO strong! By this morning her levels were all improving dramatically and her blood pressure was back within normal ranges. They did schedule her for another echo of the heart and u/s of her kidneys to make sure no more damage was done from the medication. She was smiling and moving all around.

Olivia is still doing very well and as of today weighed 3 lbs 6.9 oz. The nurse mentioned she might be losing her IV within the next day and then she will only have her feeding tube. She is such a mellow happy baby and both of them are so beautiful. As of tomorrow my girls will be 2 weeks old. I can't believe they have been in the NICU for two weeks already. We have many weeks to go, but I want them to be healthy and strong before coming home. No rush.

Breast feeding isn't going to great. It is very hard to get supply for two babies. I am pumping about 1 1/2 - 2 ounces per pump and that is not near enough to support the girls. Right now they are on my milk and donor milk + fortifiers to help them gain weight.  At first I wasn't happy about them on donor milk, but now I don't care. Whatever is the best thing for them.

I also want to thank everyone who has reached out to me privately. I haven't been able to respond to all the emails, text messages, but truly am overwhelmed by the support we have received.

Hopefully I will have some pictures to upload tomorrow. I didn't want to share pictures of Lilah while she was going through everything for the past few days.

Prayers Needed

It has been a long past 24 hours. The Lasix that Lilah was on didn't work as the doctors had expected. They put her on another medication and she had a pretty significant side effect to it. The medication restricted the blood vessels in her kidneys. They were flushing her kidneys last night and trying to get her blood pressure back up within normal ranges. After this was done they move her and her sister to the cardiac wing of NICU.  The nephrologist has been called in to consult. The doctors told AL that all the cases they have seen of this reaction to the medication has resolved itself before permanent kidney problems. They said there are three different options as of now. They might wait and see how her levels look over the next 48-72 hours. Since she can't do dialysis because of her age they might try another treatment that is similar. Worst case scenario is they will have to send her to Little Rock or Dallas where they specialize in kidney problems. I will update you all as soon as we hear from the Nephrologist.

UPDATE:

Just heard back and they are going to take her in for surgery to place a tube in her stomach and start dialysis tomorrow. Please keep my Lilah in your prayers. 

Stories and Support

As you all know, my baby girl Lilah is going to required open heart surgery to repair her VSD ( Ventricular Septal Defect). I have been told over and over that it is a very common surgery and no big deal. Of course as a mother it is a huge deal to me. The thought of my baby having her chest cut open kills me. I am reaching out to all my blog followers and friends. If you or someone you know of has had this procedure on your child, please comment or email below. I could really use support and hearing other success stories of newborns going through this procedure might help calm my nerves.

If you would prefer to email me verses commenting on here, my email address is tonisharapp@yahoo.com.

Thank you.

NICU Life

Today the girls are 9 days old. Both are above their birth weight! 

Lilah Grace- She is our little peanut for sure and the spitfire. Daily is takes out her feeding tube and her line for temp. She does not like the therometer at all nor tummy time. In fact she will stick her butt up in the air and try to climb out. As of today our little sweet peanut is 3 lbs 0.3 oz. They have started her out on a few new medications to help filter all the blood from her lungs and help her respiratory rate go down so she is trying so hard. I sure love this girl. I try not to think about her surgery and hope we can put it off until she is nice and strong. She is getting stronger daily. So far they have increased feedings daily and her weight has increased daily.

Olivia June- She is our mellow baby most of the time, but she also enjoys taking off her temp line and taking out her feeding tube multiple times throughout the day. She loves when I tell her stories about our family and also loves kangaroo time with mommy and daddy. Today she is our big girl weighing in at 3lbs 5.8 oz. The doctors did also hear a heart murmur on her yesterday and ordered a echo (which was done today). I hope that if there is a hole, it is small and will close. Only time will tell.  Oh! Did I mention she also loves to suntan :)

  As for me........ Well I have two amazing daughters. Nothing else even comes close to talking about right now.

Update on the girls

Tomorrow the girls will be 1 week old or 31 weeks gestation. Not really sure on how this all works yet. 

I won't lie. I am overwhelmed. You hear stories from NICU moms and can't truly understand until you have been in this place. I am trying so hard to balance being a mom to my girls and also being my own caretaker. It is easy to forget simple things like eating, drinking, sleeping and showering. Until this point I was never an emotional person and now I find myself crying all the time. I worry about my girls.... 

For the most part they are both doing very well. We get compliments from nurses to doctors etc. on how "amazing" they are doing for twins born at 30 weeks. 

Everyday they are getting stronger. Both are off the nose cannulas and both are just breathing room air. Their feedings have been increased daily. I am providing their breast milk. As of today Lilah is weighing 2 lbs 12.9 oz and Olivia is back up to 3 lbs .7 oz. 

We did get some bad news today. Lilah has a hole in her heart. It is moderate to large and the position of it will most likely require open heart surgery. The cardiologist wants her to be at least five pounds before surgery. It looks like we have a few weeks to a month before that huge hurdle. I am scared. There is no other way to put it. I worked so hard to get these babies and the fear of losing one absolutely kills me. I have been trying so hard to keep my shit together for my little baby, but it is so hard.  This really puts life into perspective. To think this morning I woke up feeling sorry for myself because I was hurting still after surgery and finding it hard to get around. Who would have know that later in the day I get news like this?

All we can do is take things one day at a time. I know my little peanut is a fighter just like her mom. I know that if anyone can make it through a surgery like this, it will be her for sure. Heck today she ripped her feeding tube out 3 times and also her respiratory line. I think the nurses are refer to her as Spitfire Rapp.

My beautiful Olivia is moving right along and she is such an amazing little girl. She has the most heart warming smile and she knows exactly when to smile at me. 

I will leave you with pictures from today. PLEASE keep both my girls in your thoughts and prayers.

 

Facebook Group

I have set up a closed facebook for the girls and their stay in the NICU. It is too much for me to update everywhere. Please send a request if you want to know how they are doing. I will also update my blog, but it will be after the group.

https://www.facebook.com/groups/1553357041562367/
The group is called ' Lilah & Olivia Rapp NICU 2014

Here's a pic from the girls today. ( 5 days old) and doing so well so far.

Lilah

 Olivia