Heart Ache

Hi everyone-Lisa here, Emily's oober amazing sister. For those who have not heard about Riley, I thought I would post an update:

Emily and the girls are in Texas so that my mom and I can help with all things TWIN. Monday night Riley was admitted to Texas Children's Hospital. Tests revealed that she has Dilated Cardiomyopathy. The most simple explanation is that the left ventrical of her heart is damaged and this causes her heart not to work properly. This damage is permanent. Right now the doctors are trying to determine if this damage is genetic or was caused by a virus. She is considered in heart failure. All that being said, she is doing extremely well. The doctors have said they are amazed at how well she is doing. Most babies with this condition are not eating or breathing on their own. Riley is doing both.
So far, Riley is responding well to the treatment. If she continues to do well, the prognosis is a normal life but she won't be able to participate in any sports. If she does not respond well to the treatment, the only option is a heart transplant. Because she has done well thus far, doctors are very optimistic.
Riley has been in the NICU and will stay there until Monday. Then she will be transferred to the cardiac floor. If she continues to do well there, she should be there about a week.
I will keep you posted of any changes. Please keep Riley in your prayers.

Today's the Day!

Today the girls are 7 weeks old. I didn't post a six week update last week because things were crazy. Having two babies in two different places was really rough! BUT the key word is WAS! Today is the day that I have been waiting for! RILEY IS COMING HOME and we will all be together!!! I am beyond thrilled! Here is a few recent pictures of my angels and coming home celebration photos will soon follow!

Miss Riley is filing out! But she is still oh so tiny! She is now a whopping 3 lbs 5.7 ounces. You can tell how tiny her little hand is by the size of my finger in the picture that she is holding on to. Isn't that the best?

This is Miss Keagan in her bouncy seat. Does it look like she likes pink? Friday night our quiet sleepy head evolved into a cute girl with some lungs that would like to be held. We will have to see how that goes with her sister sleeping next to her.

And two more precious pictures! Riley first (that feeding tube is finally out now) and Keagan just relaxing in her boppy!

I love these two SO much and we are about to all have some serious fun together now that we will all be in one place! Very tiring, turn me into a milking dairy farm fun, but fun!

5 Weeks

Yesterday our sweet little girls were 5 weeks old! We have had BIG changes in our family in the last week! On Friday which was exactly 1 month from the time they were born, Keagan came home!!! I was SO thrilled to have one of my sweet angels with me at home- but it was VERY hard to leave one behind-especially without her sister! It is also pretty difficult having two babies in two different places. Which ever one I am not with I am missing them like crazy. But hopefully it won't last too long. One down and one to go!

Friday night was so fun bringing Keagan home to her waiting nursery and very excited parents! The hospital has to approve your car seat or you have to buy a new one. Good thing our little Keagan fit in her car seat but doesn't she look so itty bitty tiny?

This is Keagan laying in their crib for the first time. She is stretched out as much as possible- which she LOVES to do- and still has plenty of room to spare for her sister and much more! I am extremely excited for the night that both of them will be sleeping here together and will finally be able to talk to and touch each other!

Look how precious she is-the shirt couldn't be more perfect! I guess if they had to come home separately it might be good that the mellow one came home first. She is breaking us in for two little girls! Since she has been home she is still on a steady 3 hour eating schedule and mostly sleeps in between. But, every night she has woken up at 4:15 and wants to be held and talked to. How can I not grant her every wish- even at 4am? Travis doesn't want her to get too spoiled so every time she makes a little peep in the middle of the night he has to remind me that I don't have to check on her every 5 minutes. He is actually normally right because she is just stretching or squeaking and goes right back to sleep. Hopefully I will soon learn the difference between the "I'm ok" and "I need you" noises in the middle of the night. She has found more of her lungs since she got home and it makes us wonder how the two of them aren't going to wake each other up sleeping so close. But that is what all of the twin books say to do and it is just so cute!

Miss Riley is still getting great care at the hospital! She is putting on weight and really filling out. Her chubby cheeks are showing that the girls do look more like twins then we actually thought. But she is still much more fair with her blond eyebrows and light hair. She is definitely fighting to get stronger and come home but we have had a little set back this week. She is still having a little bit of a hard time eating and just needs some time to really get it down. I do want her home but I don't want to rush her. Also she had some test results that came back showing that she has one dilated kidney and a little bit of bleeding on her brain. It isn't supper serious- sounds worse then it is- but definitely something they are watching closely that it won't progress. So it may be a little longer then this Friday that she will come home.

Thank heavens Nana is back so that she was at home with Keagan this afternoon. Otherwise Riley and I would have seriously missed out on a HUGE event in her life! She met the REAL Mickey and Minnie Mouse! They were on the island for a ground breaking for a Disney Resort and came to visit all the kids at the hospital afterwards. Riley didn't have a clue what was going on but my favorite nurse Mari and I were so thrilled to meet the best characters from the happiest place on earth!

On Thursday we celebrated the girls one month birthday! I can't believe how fast the time has gone by! All of the nurses in the unit miss Keagan and love seeing Riley and how great she is doing for such a little girl. I am even more amazed at how well they are doing and how much they have been blessed! These girls continue to prove everyday that they are little miracles. I am sure they are missing each other and are just as anxious to be back together as we are! Meanwhile we will wait patiently and try and spend as much precious time that we possibly can with each of them!

More Pictures from week 3-4

Aren't they gorgeous!? Is that so vain to ask? I just can't help myself- I'm obsessed with them and can't even see how everyone else couldn't be too! :) You can really see their size difference and how different they look when they are side by side.

This is where we now hang out everyday. The nurses call it the Kikuchi corner. Several of the nurses actually fight over who is going to get the girls for the day. Keagans bassinet is on the left and Riley's isolet on the right. Doesn't my chair look oh so comfy to sit in for 10 hours? Yeah I am very excited for them to come home even though I will definitely miss the nurses and them feeding the girls in the middle of the night for me! :)

4 Weeks Old

The girls are 4 weeks old today and they get more and more adorable each day! Literally every morning when I first see them I really do already think they are changing- getting a little chubbier each day! I love it! This week the girls were moved out of the Neonatal Intensive Care Unit. They are now in the Intermediate care which means they are in a pediatric patient room with 2 other babies. We still have the same nurses and doctors it is just in a less intense environment where the focus is eating, sleeping, and of course growing! It is a really nice change from the much more busy and intense NICU. The room even has a TV so the long days are broken up by watching CNN or Oprah with the nurses!



Miss Keagan is now getting all of her feedings out of a bottle! She is also breast feeding- a little. I know the breast feeding is alot of work so she will try for just a little bit and then sit there and look at me like "Ok I want my bottle now". When she can get the exact same thing by doing less work can you blame the girl? As you can see in this picture she is really starting to fill out. All of a sudden 2 days ago her chubby cheeks just popped out- which made her look even more like her daddy! Today she will hopefully get her feeding tube out so the only thing we have left is just her 2 monitors and security band so she doesn't get stolen!

Miss Riley changes everyday even more so then her sister. She already looks so different then she did on her birthday and I am sure that will continue as she packs on the pounds. She is starting to look a LITTLE bit more like Keagan from her nose down but they are still so different and unique. She gets three bottles a day now and trying SO hard to keep up with her sister but it is tough! The nurses always comment though that they can't believe a baby so little is already feeding! Shes workin hard! With Physical Therapy (isn't that adorable) her leg is getting better. It is still just tight and she doesn't move it as much because she is so used to it being in a heavy cast. Riley has her own reputation in the unit for being just a little bit feisty! The nurses say the little ones are always feistier because they know they have to be. The girl has a big cry for how little she is-it's so cute. And she doesn't have any kind of warm up at all she just goes straight into it. The good thing is she never cries for very long (it's usually because she wants her pacifier) and she stops crying as quickly as she starts!

Our HUGE news is that Keagan is COMING HOME on Friday!!! When we first got into the unit they told us the girls would come home close to their 40 week due date- which isn't until December 15th. Alot of kids beat that mark but our girls have done amazingly well! I am SO THRILLED to bring one of my sweet babies home but REALLY wish they were BOTH coming home. I am a little worried about juggling one at home and one in the hospital.

Hopefully I will only have to do that for about a week because they think Riley may be able to come home next Friday!!! I realize that once they are both home it is going to be ALOT of work. They eat every three hours so by the time I am done with one it is about time to start the other. Then I have about an hour break before the first one is ready again. BUT, I can not wait for them to be able to be together to sleep in the same crib and be able to talk and touch each other again. I know it will be really good for them!

I can't believe the time has passed so fast! I am so thankful for where they are at and even more excited to see where they are headed! We will keep you posted on the Welcome Home celebrations!

3 Weeks Old!

Today our beautiful girls are 3 weeks old! Time has just flown by and they are doing SO well! Both of them are getting a little chubbier and are so stinkin adorable I can't stand it!

Keagan is now 3 pounds and 15.6 ounces! We are so close to that big and chubby 4 pound mark! She is getting a full 34 cc's of fortified breast milk now- which is almost 7 teaspoons every three hours. And Riley is now a whopping 2 pounds and 6 ounces and is eating 18 ccs of my fortified breast milk- which is VERY quickly filling up my freezer by the way!

Miss Riley got another blood transfusion this week for her anemia and got her cast off from her broken leg! She is never going to believe that her entire leg once fit in there! Her little heart is still working a little harder then we would like to see and she still has some bacteria hangin out in her tummy. But like her more major issues she will conquer these little ones. Miss Keagan has been doing great. Her lung and heart issues are completely resolved and now she just needs to pack on the pounds. Sleeping and eating are really her only orders from here on out (hopefully). Yeah its a tough life!

This week both girls got their first bottle! I introduced Keagan to the tastiness on Sunday and it was Riley's turn today. Both girls looked at me like "what the heck is this" and looked like I was trying to force feed them sour lemon drops. Preemies have a much harder time coordinating the whole sucking, swallowing, and breathing thing so they each only get one bottle a day for now and receive the rest of their food thru their feeding tubes. It is seriously hard work for these little girls to eat at this point but I am sure with the mom and dad that they have, they will get the hang of it real fast! Here is Miss Riley who was not too sure about this!
This week both girls also started rocking their adorable preemie clothes! We have a huge closet full of clothes but we weren't planning on our girls fitting in clothes made for a 4-6 pounder. So Nana brought cute outfits (see she is living up to her outfitting duties well) from Texas. They are all pink or white of course! You should see how tiny these shirts and onezies are and of course they drown Riley! Here is Keagan fully decked out in her "Thank Heaven for Little Girls" outfit. I couldn't have said it any better myself!

Keagans other big news is that she is out of her isolate and in a bassinet! This is because she is maintaining her own temperature just fine. Her sister is actually doing the same but since she is so little she will stay in her isolate a little longer. I love this picture of Keagan sleeping in her bassinet. Both girls are so peaceful and perfect when they are sleeping the day away.

Unfortunately this week Nana went back to Texas. She will be back when one or both girls comes home from the hospital which may be sooner then we originally thought! YEAH! Before she left we got this great picture of both Grandma's with their little granddaughters- priceless. These two are hilarious at the hospital. One is taking a million photos which I love, and the other is watching the nurses to see who she is going to allow to take care of her granddaughters. Both of them are trying to listen to the doctors and nurses talk about all the babies around the girls to figure out what is going on with them and their families stories. But, I have to admit I do the same thing. Don't you just hate the right to other peoples privacy? There is nothing like the love of a Grandma!

So our little miracles are doing amazingly well! I have never been so overwhelmed with gratitude for having these beautiful angels and being able to be with them everyday! I cherrish the chance I am getting to know their cute personalities and fall even more in love with them each day! I am so thankful that over the last 3 weeks I have been able to start what I know will be a life time full of alot of work and worry but much more joy and love! It couldn't be more true...thank heaven for little girls!

Happy Halloween!

I know it looks like our only costume is our cute orange and black hats from Nana.... but actually we are princesses! We just don't need costumes for that! Happy Halloween for the first time!

Love, Riley (on the left) and Keagan (on the right)