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

They are here

Yesterday at 30 week exactly I started having contractions at 4:00 am and had a C-section later in the afternoon. Lilah Grace was born at 2:08 pm and Olivia June was born at 2:15. Lilah weighing 3 lbs and Olivia weighing 3 lbs 5 oz. They are in the NICU and as of tonight Olivia was taken off her cpap and is breathing room unassisted. Lilah was able to do Kangaroo care with her daddy. He has been the one changing diapers, taking their temps and cleaning the feeding tubes. As of tonight I am still so nervous with the girls. You would think it would be the other way around. We have to wait for Olivia to get her Pic line done ( in a few days) before she can do kangaroo care. I decided to stay in the hospital my full four days so I can be close to the girls. I plan on going back to work on Monday, this way I will have my full maternity leave when the girls come home. Since Al works at the hospital he can check on them many times a day and I am planning on visiting before work and after work each day. The NICU doctor told us to expect them to be in NICU for 6 to 10 weeks. But, she also told us that the girls are doing amazing for their gestational age. It could be earlier. Here are a few pics.


Lilah

Olivia

Distance

I've been meaning to blog about this topic for a few months now, but have struggled on how to express my feelings about it. I know many of us that are now pregnant have struggled with the guilt etc. and worrying about our friends that are still ttc. I still struggle with this daily. Since I have been on both sides of infertility (as have many of you), I can understand the feelings from both sides. I guess where I differ is, when going through infertility I was still able to be happy for those who became pregnant. This didn't only go for my friends that had struggled for years, it went for friends that never knew what it was like to struggle. I didn't mind attending baby showers, or looking at their children on face book etc. I guess I always felt in my heart that going through infertility was SO unfair, but it was even more unfair for me to treat my pregnant friends or mom friends differently because they had something I wanted. 

I know I have shared this story before, but I feel like I need to share again. My friend years ago got pregnant and for a split second I did have the (normal) jealously that goes along with the announcement. Weeks later she miscarried and I felt like such a stupid asshole for having those feelings about her. If I was a " real" friend then isn't it my job to support her through whatever happens in our lives? I am not going to say for a minute that it doesn't hurt every now and then because I know it does. Since that point I have tried my hardest through the next  few years of infertility to see the positive in everything. It helped me through some dark times. Is this right for everyone? I don't know. It was for me. 

Now I find myself on the other side of the fence. I find myself losing friendships with some of my friends still struggling. Does this bother me? Yes, it bothers me very much. I still think of them and try to be supportive, but don't get any support on my pregnancy. I do feel it is very unfair. I often wonder if these woman that turn off the support once you get pregnant will expect support during their pregnancies? I will support a friend regardless, like I always have, but I feel it is very unfair to have support and then to get pregnant and be treated like you have a transmittable disease. I want people to know that once you get pregnant, we still have feelings also. 

I am not sure if this is a fixable gap between the two? Can either side (pregnant or still ttc sit back and be able to have relationships with each other, after we have transitioned to the other side? Am I suppose to let these friendships go? Am I suppose to stop supporting my friends that are still struggling because they have done so too me? This is a very hard situation and I hate it. 

I honestly feel like I put in my time and I deserve to be pregnant with my girls. I also feel that you should be supportive of friends if you are truly a good friend. Not to say that it is always easy, but it is what makes the difference between a friend and people just choosing to be friends until it doesn't fit in their lives anymore.

Either way, it has really effected me and upset me over the past months when I see and hear less and less from people I thought were my friends. I do hope that in life all of us find our happiness regardless. I always wish the best for my fellow infertiles and I always think of you ladies. Just because I am on the other side of the fence, please know that all the struggles, hurt, anger and sadness never fully goes away. I do remember what it was like and that will never change.

C-Section or Vaginal?

From day one when we starting seeing the OB, he asked if I wanted a c-section or vbac. My immediate response was c-section. The reason behind this was basically I already had previous c-section and plus I was pregnant with twins and didn't want to have any complications arise trying to birth them vaginally. Throughout this pregnancy my mind has swayed away from c-section, until now. Actually a few weeks ago at the 4D u/s and the tech said both girls were head down. I had a few different occasions where the thought crossed my mind for a few seconds. Maybe I can have a vbac. Then last week during my u/s with MFM and the girls were still head down. After being admitted I had to sign paperwork about emergency delivery etc. and it was brought up again. Did I want to try vaginally? My answer at the time was " I want whatever is best for the babies in the situation". So we signed papers that we would do either depending on situation. Now this week has been non-stop thinking about this. Of course I want what is best for the girls. I have been told by my OB and MFM that at this point we are great candidates for either and both at this point are safe.  Here is my pro/con list:

PRO's for Vaginal birth:

Less time  recovering from major surgery
Less time in hospital
Depending on different studies, could be easier for the girls
Get to experience vaginal birth and bonding with the girls
Al would get to experience the birth of his girls



PRO's for C-Section:
 I don't have to worry about delivering one vaginally and being rushed in for surgery if something goes wrong with second baby.
I know what to expect from previous c-section
It is planned and therefore I feel like I have more control
I will be able to get my tubes tied at same time

It is weighing heavily on me and I do hope that I ultimately make the right decision or something happens to help me make the decision. 

Any twin moms have input on this?

29 Week Update

Still here. Still pregnant!!

I was released from the hospital on Monday and things are still about the same as far as dilation. Yesterday was pretty rough day. I was having a really hard time getting my breath and in a lot of pain, but I pushed through it last night and thank goodness I did because I feel 100% better today. Had my OB appointment and we just went over things to be on the look out for. He said 20% of woman will have their babies within days of preterm labor and I have passed that mark. He seems to think we might be able to keep these little ladies in until 32 weeks. As much pain as I have been in lately and feeling really bad, I want to keep them in as long as possible. I remind myself that it is only a short time of things being unpleasant and it will all be worth it very soon. And of course I want to do the best thing for the girls. We have switched me over from Lovenox to Heparin. Also trying to figure out the right dosage of Glyburide ( it seems to be bottoming out my sugar levels) I am sure we will find that magical number soon though.

Today we are meeting with the Director of NICU and having a tour. Also got some pretty exciting news yesterday. Not sure if any of you saw where I posted that my hospital was going to put cameras in the NICU so parents could log in and see the babies if they weren't at the hospital. Well it looks like Al and I are going to be the first parents to try this out. They prefer to use an employee to try everything out on before going forward. I am pretty stoked about it. I will be able to see the girls no matter where we are.

I am back to work. Thank goodness. I talked my doctor into letting me work because my job is only 10 minutes from the hospital and my house is over 30 minutes away. My bosses are being completely amazing and so giving. They told me to lay down on my couch whenever I need to.

Let me also brag on my husband.  I know I could not go through all of this without him. My god how I got so lucky, I will never know. I promise I don't take advantage of him. During my stay in the hospital he was taking Cierra back and forth to work, taking care of pets and the house, plus seeing me. He is now doing all the cooking, cleaning, driving, etc. I know he is going to be the most amazing father ever. I can't wait to see him meet his girls. I love this man so much. I never knew that marriage was seriously suppose to be like this. I always thought it was so much work to have an "ok" marriage. Now I know that in my marriage, I don't have to work at things, I found my soul mate and it all just comes the way it is suppose to. I will say again I am so LUCKY.

Okay here is my 29 week bump pic and lets hope there is a 30 week!

 Also. Thank you for all the emails, texts, etc. checking on me. I have made such amazing friends within the past 4 years and met such beautiful woman. Thank you.

Day 4

The word just came down that I am going home today. I explained to the doctor that I am scared I won't know when to come back in and he promised me that I would. He told me to call or come back if I am worried about anything. Since I have twins head down with a opening cervix, It is normal to be worried and I should be precautious. They don't want me on bed rest though because of my APS and risk of blood clots. He wants me to rest as much as possible, but make sure I move my legs and walk around some. I asked if I could go back to work and they agreed because my job is only 9 miles from the hospital and my house is over 30. Plus I have a couch in my office to rest and I don't really do much except sit at my desk during the day. He did say I might want to just work half day etc. I am also going in to see my Doctor twice a week from now on and also the MFM clinic to have NST scans done on the girls. SO I do feel better knowing I will have heavy monitoring. Still scared and unsure what the follow days, weeks will bring, but I am ready to tackle whatever I need to. My personal feeling is, they will be here before 30 weeks, or on 30 weeks, but hoping they can make it to 32-34 weeks and even better yet 36. Not sure how long babies can stay in when mother is 100% effaced with twins and dilated to 1 1/2- 2 cm.


Please keep my girls in your thoughts and prayers...