Update on the Girls

Sorry it has been so long since I have posted an update! I really have no excuse besides the fact that I have not been in the mood. Really not much has changed since Saturday, which is a good thing!

Kylee was taken off of her CPAP on Tuesday and is now breathing with a Nasal Cannula. She seems to be tolerating it well for now, so we will see how she does.

Both of the girls were started back on Feedings on Monday. Kylee is doing well with her feeds, and has steadily increased the amount she is getting each day. Kaylyn was having some digestion issues, so they ran some tests to make sure everything looked OK. All the tests came back fine. Sometimes I have to remind myself that their little bodies were not designed to eat for another 3 months. Slowly but surely we will get there!

Today Kaylyn had another cardiac ultrasound, and it still showed that her PDA (the open valve in her heart) was still open. So they did a chest X-Ray and that showed that she is retaining some fluid around her lungs. The neonatologist was thinking it could be due to the PDA, so he had the cardiologist come over from children's hospital to check her out. The cardiologist said that he does not feel that she needs to have the surgery just yet. Since it is small, he still wants to try and treat it with medicine, since the surgery would be a huge step back. So for now, they are going to give her Lasix to try and remove the fluid around her lungs. So lets hope that works, and this damn PDA will close already!!

Other than that, everything is pretty much the same. They both continue to gain weight, and are doing well. They are very strong, and are doing better and better each day. I am ready to bring them home already!!!!

Two whole Weeks Old Already!

It is hard to believe but the girls are already 2 weeks old. Today I brought their NICU nurses cookies to celebrate!

The girls are both doing well. Kylee had to go back on CPAP yesterday for her breathing. She was working a little too hard, and they wanted to give her a break. They said that they are going to leave it on for 72 hours, and then they will try her on the cannula again. These up's and down's are really hard, but its all part of the territory. Other than that minor hiccup she is doing really well. We did the Kangaroo Care thing yesterday, and this time she didn't scream the whole time, so maybe she doesn't hate me...

Kaylyn is pretty much the same, but no news is good news. She just got her last dose of medicine to close the valve in her heart this morning, so tomorrow they will do another cardiac ultrasound to see if it finally closed. Hopefully, this time the medicine worked and we can be done with this whole issue. I did Kangaroo care with her today, and she loved it. She definitely was not a happy camper when she had to go back to bed.

My little girls are so amazing, and I am so lucky to be their Mommy. I just want to bring them home already so they can go on their first desert trip. Things are pretty much the same, which is good. Daddy says slow and steady wins the race!

I just took a percocet and now I fully intend on passing out!

I would have been 30 Weeks Preggo Today

The girls are now 13 days old, and have made tremendous progress in such a little time. Every day I just love them more and more, and I can't wait to bring them home.

Kylee is back on the Nasal Cannula and doing well. However, I decided that she hates me. I tried to do Kangaroo care with her yesterday for the first time and she just was not having it. She screamed the whole time (not her cute little kitten cry-but a scream). So I put her back to bed, and her nurse tried to start and IV in her foot, and she didn't even flinch. Its a great feeling knowing my daughter would rather be stuck by a needle, than have me hold her. We will try to Kangaroo today, and maybe she will like it better this time. Kylee is up to 9ml of breast milk every 3 hours. They will keep increasing it until she is at a full feeding (that could take a while because a full feeding is about 23ml's)

Kaylyn on the other hand is all about Kangaroo care. She is so cozy being cuddled up with me, she seems to love it. We got the results back from her cardiac ultrasound, and her valve is still open in her heart. It is small, and she is not having any symptoms, so they are going to try another round of medicine and hopefully this time it will do the trick. She is doing so well, that they Dr said he hates to send her to surgery because that would be a step backwards in her progress, and since it doesn't seem to be affecting her too much we are gonna sit on it a while longer and hope it closes. Unfortunately, when she is on this medicine, they have to stop her feedings because the medicine upsets her tummy. So she will not start feeding again until Sunday. I'm OK with that, I would much rather have her take this medicine and close the valve, and work on the feedings later.

My little girls are so amazing. They are incredibly strong, and I am really hoping that their progress continues without many regressions. The less bumps in the road, means the sooner they will be able to come home. Today they are both going to have a follow up ultrasound of their heads, just to make sure everything is good. So far all of their head ultrasounds have been normal, so I am hoping this one is to.

Its hard to believe that they will be 2 weeks old tomorrow. It has been the fastest longest 2 weeks of my life.

They're Starting to Grow into their Skin

When the girls were born, they looked like little old ladies-so much skin, and not enough fat to fill it! They were quite wrinkly. But in the last couple of days they have both been consistently putting on weight, and they are starting to fill it out...a little bit!

Both of the girls are continuing to do really well. Kaylyn is still on the Nasal Cannula for breathing, and Kylee had to be put back on CPAP last night. She was working a little to hard to breath, so they did it as a precautionary measure. The one thing I really don't like about the CPAP is that it makes her little eyes swell up and she can't open them. It makes me sad.

They both have all of their Belly Button lines out now. This means that we can hold both of them now!! Yesterday, Keith held Kylee and I held Kaylyn for over 2 hours. We would have switched, but its really hard and inconvenient with all of their wires and everything that is attached to them. So we will switch today.

Kylee is now being fed 5ml of breast milk every 3 hours, and Kaylyn is at 2ml every 3 hours. We are still having little problems with digestion, but yesterday they both got suppositories and they pooped so hopefully that cleaned out the plumbing to help things along.

The only things that remains to linger is Kaylyn's PDA in her heart. The valve still has not shut entirely. The Dr.'s are going to continue to monitor it. But since it is so small, and she is asymptomatic, they are choosing not to send her to childrens for the surgical ligation to close it for now. She is going to have another Cardiac Ultrasound today, so hopefully it will show it closed on its own.

I'm not gonna lie, my girls are the cutest kids in the NICU! I love them so much!! We are hoping the good progress continues.

Kangaroo Care :)

Both of the girls are doing remarkably well. I am just hoping that we continue on this forward path, and our steps backwards are kept to a minimum.

Both of the girls are now off of CPAP, and on a Nasal Cannula. They both seem to be doing really well with it. They just put Kylee on it last night so we will see how she does.

On Sunday they removed Kaylyn's arterial line in her belly button, so we are now allowed to hold her. Isn't it crazy that the first time I got to hold my daughter was when she was 8 days old! I think its been the longest 8 days of my life. Yesterday was the first time Keith and I both got to do Kangaroo Care with Kaylyn. Kangaroo care is when you put the baby under your shirt on your chest. The skin to skin contact is really good for the baby. It was awesome!!

They were talking about taking out Kylee's arterial line last night, but her latest blood gas was a little borderline, so they are going to wait until the morning and do another gas, and if its good then they will take it out. I cannot wait to be able to do Kangaroo care with her. Its really hard when you get to do some things with one baby and not the other. I know, I know I just have to be patient...

Everything else is good. They are both gaining weight and now being fed 2ml of breast milk every 3 hours. They are not digesting as well as we would like, but we are making progress. Premature babies tummies are often not mature enough to process and digest food right away. Some times it takes a few tries, and that is where we are at.

I started driving again today. Usually you are supposed to wait 2 to 4 weeks, but I talked to my Dr and she said as long as I am not on pain medicine I can drive. It was really nice to get my freedom back, even if my freedom consists of driving back and forth from the hospital. It is just nice to not have to depend on someone else to get me there, I hate being a burden.

Everyday I am one day closer to bringing my babies home!! I cannot wait...

One Week Down

Well, as of yesterday the girls are officially one week old. They are doing well, and we are seeing progress in the right direction, but we still have a very long road ahead of us.

Yesterday was a big day for both Kylee and Kaylyn. They both had Cardiac Ultrasounds done to check on their PDA's (the valve that had not closed in their heart at birth). Kylee's is completely closed, and the ultrasound tech said if Kaylyn's was any smaller it would be closed. So for now, they are just going to watch Kaylyn but she does not have to go to children's for surgery as of yet so that is good news. I am guessing they will do a repeat ultrasound in a couple of days.

The results from the Brain Scan that they did on Friday came back, and they are both Normal. I am so thankful for that!!

They both got PICC lines (permanent IV's) placed in their arms today, and this time the PA was successful. This allowed them to take out their UVC (Venus Line) line in both of their belly buttons. All that is left is their UAC (Arterial Line) in their belly button to be removed, and then we should be able to hold them. If everything goes well, they should remove the UAC in a couple of days, or possibly sooner.

On Friday Kaylyn decided she was going to try and give me a heart attack. Not 5 minutes after I got to the hospital, she decided she didn't want to be intubated anymore, and she pulled out her own breathing tube! Luckily the nurse was standing right there and noticed she did it and a whole team of people were at her bedside in seconds. She did turn a little blue, but only for a second until they started bagging her. They decided to go ahead and try CPAP and see how she would do. She has now been on CPAP for over a day and is doing excellent. She's definitely my child, she is already making her own medical decisions at 6 days old! Today her billiruben (sp?) were a little elevated again, so they decided to put her back under the blue lights to keep everything under control. Hopefully, she will not have to be under them for too long because she does not like them.

I just called and spoke with Kylee's nurse, and apparently tonight they had to put her back on the CPAP machine because she was having to work a little harder to breath. She was also a little anemic, so they gave her another blood transfusion. I know that the NICU road has lots of up's and down's, but it is so hard when your kid is doing so well to watch them take a step back. Other than those issues tonight, she has been doing really well and maintaining. Hopefully they will put her back on her Nasal Cannula soon, but I am not in a hurry. I want her to be able to breath comfortably.

So we already have one week down! My life has changed so much in the last week... I love my little girls so much and I can't wait to bring them home with me!! My body is already preparing itself for their homecoming, its 4:30 in the morning and Im awake. Insomnia is rad!

Would have been 29 Weeks Today

Even though I am not pregnant anymore, they still age the girls based on gestational weeks, so today I would have been 29 weeks pregnant.

So pretty much the hardest thing I have ever had to do in my life was drive away from the hospital on Wednesday when I was discharged. I was a mess. I am sorry if you have called and I have not called you back. Pretty much my life consists of sleeping, pumping, or being at the girls bedside. Please do not take it personally.

The girls continue to improve, but there are a couple lingering issues. They both still have the PDA, which is the opening of the valve in their heart. Kaylyn finished her first round of medication, and the follow up cardiac ultrasound yesterday revealed that the duct was still open. So they started her on her second round of medicine yesterday. Kylee finished her first round of medicine last night, and they plan on doing her follow up cardiac ultrasound today. Keep you fingers crossed that it closed! Once she is off the this medicine, she should be able to start eating, and that would be awesome! Initially, they would be feeding her through a tube that goes directly into her stomach, but hopefully it wouldn't be long until she could start on a bottle.

Both of the girls have a follow up Brain Scan today to ensure that they do not have a head bleed. We should have the results from that test either today or tomorrow.

Kylee continues to do very well with just her nasal cannula for her breathing. When she cries it sounds like a little kitten. It is heart wrenching when she gets upset, and all I want to do it pick her up and I can't. I have to leave her in her incubator and watch her suffer. They tried to place a picc line (long-term IV) last night, and the dumb PA missed it 3 times. I'm not a big fan of her practicing her skills on my 2lb baby. So they are going to try again soon to get that line. Once they have the picc line established, they will be taking out her arterial belly button line, and then we should be able to hold her. She has taken to a pacifier really well, and it seems to sooth her quite nicely.

Kaylyn is still intubated, and they probably won't extubate until her PDA is closer to being closed. She is doing well though. Her PDA is also causing some metabolic problems, and they have to correct some of it with medicine. Hopefully, once the duct closes things will improve greatly. Despite not being able to eat, somehow she managed to gain 2oz. yesterday, which is really good. She is going to be our little porker. We still have not have the opportunity to hold her, and I cannot wait for that moment.

All things considered, we are holding up OK. I'm not gonna lie, its the hardest thing I have ever had to do in my life. I am just so thankful they are both doing OK, and hopefully we continue to move in a forward direction. The girls are already 6 days old, so we are almost a week into this. Soon it will all be a memory. Well, I'm off to the hospital now. Keith's grandma is giving me a ride since I still cannot drive. I will update as soon as I get a chance.