Tuesday, September 23, 2014

Update, a MONTH old!

It's time for a twin update! Well, there's great news because no news is good news in this case. The girls are both doing GREAT! I last updated a week ago Monday when Kaitlin got her right chest tube out, was off the Jet Ventilator and they let me hold her! On Tuesday we asked the nurse when we might get to hold the girls together, so when I showed up on Wednesday morning the nurse asked "Are we holding the twins together today?" and I think I gasped, which made the doctor who was rounding on the girls laugh. I said "If everyone with a medical degree is good with it, I'm good with it!" I couldn't wait to hold them together. And then I suddenly realized I was going to need at least four arms to take care of these girls, holding them together is HARD! The first day Abigail just cuddled into my chest and Kaitlin was a little less comfortable, and wiggled a lot and kept her eyes open the entire time. By Friday the girls were intertwined with their arms around each other, and today both girls just fell asleep as soon as they were on my chest. I love holding my girls together! I still need four arms when I'm holding them, I'll have one hand on each baby but then if one of them starts to cry I don't know how to comfort her while still holding the other one. I've told our nurses I'm taking them home with us when the girls come home!

So, here are the stats on the girls. Abby weighs about 2lbs 9oz. She is off the ventilator a little bit every day which means she has no cannula (no oxygen going in her nose). Sometimes she does great, other times she gets a little stressed out by it and needs it back. She has what they call "Brady" episodes every day, which means her heart suddenly slows down, which is related to her breathing. The nurses assure me this is just because her body and brain are immature and soon she will be able to remember to do all of it on her own without needing reminders. The episodes are a little scary to her Momma, but get shorter every time and she pulls herself out of them every time. She gets 24mL of breast milk every 3 hours and it's fortified with an extra 24 calories to help her gain weight. Her feeding tube is now through her nose, which she likes a LOT better than through her mouth.

Katie also weighs 2lb 9oz! One of our doctors was pretty excited that the girls weigh the same and are "behaving like twins!" Katie is on a pretty low ventilator setting and when I left the hospital this morning was on 5 liters of oxygen. (I'm not entirely sure what that means, I just know it's a good thing and the lower that gets the better it means she's doing.) She's had no problems with her lungs since her last chest tube came out! All other problems have been resolved and tests have come back negative. She got her PICC line out on Sunday which means any meds she's getting come with her feedings now. She is also getting 24mL of breast milk every 3 hours (that's new as of today!) and 24 calories to help her gain weight. Her feeding tube is still through her mouth, and she frequently tries to pull it out.

On Sunday we got to put the girls together in the same bed to take pictures.  Kaitlin had had a hard day, getting her PICC line out and being put on a new cannula, so she was pretty exhausted and slept through the entire thing.  Abby stole the show by smiling at us and showing off for the camera. We were bragging about it to one of the NICU doctors and he was amazed, he said babies our girls age just do not get to be in the bed together! Everyone is amazed by the girls!

So, basically the girls are both doing GREAT! Right now it's about gaining weight and soon it will be about learning how to breastfeed. We'll start that process in a week or two. The girls have to learn how to do three things in order to successfully breastfeed, suck, swallow, and breathe all at the same time. The nurses have explained the process to us a few times, and it is definitely a process! We can't believe the girls are already a month old! Time is flying and going slowly all at the same time. We've still got a lot of time to go, until around Thanksgiving, but we're so very grateful to be where we are now and to have a month under our belts.

Monday, September 15, 2014

The Best Day

This morning I got a phone call from the girl's Neonatologist. Abigail was doing great, was going back up to 22 calories on her feedings, (she had been taken down because of some concern that her bowels weren't handling her feedings well) and was going to go down a level on her vent settings. Great news! Then the doctor told us that Kaitlin's chest tube (the one on the right that has been dealing with the water on her lung) had come partially out so they just decided to take it out all the way. They've been ready to do that for a few days, but just put her back on feedings so they wanted to make sure that she didn't start leaking liquid again once she started getting breastmilk. And they were decreasing her ventilator settings, putting her on what they call a NIPV. All huge wonderful, GREAT news for Kaitlin. I was so excited to head up and see both my girls this morning. (Shawn held Abby yesterday and I stayed with Eliza, so I was super anxious to get to hold her and do cares with both the girls.)

Holding Kaitlin. Lots of wires.
We had a "new" nurse today. Well, not new, she's been with our girls before, but it's been a couple of weeks since I saw her. The first thing Pam said to me was "It's a big day!" and I replied "Yes! Kaitlin got her chest tube out!" And Pam said "No, it's a bigger day!" I knew what I WANTED that to mean, I wanted it to mean that I got to hold Kaitlin. But I didn't expect to hold Kaitlin, they told us we'd have to wait 24 hours after she got her chest tube out before we could hold her. But I decided to say it anyway, knowing that it wasn't really a possibility. "Do I get to hold Kaitlin?" I asked. "You get to hold Kaitlin!" Pam responded! Immediately Pam came over and gave me a hug and I started to cry. It's been three weeks and today would be the first time I was able to hold my baby! I didn't expect to cry, I expected to be so excited, but instead I started bawling, THREE WEEKS! That's a long time to sit by a bedside and touch her hand but not hold my baby.

So, today was a Big Day, the BEST day if you ask me. Not only did her chest tube come out, her ventilator change to a less invasive one, and I got to hold her, but my girls also moved today to a different place in the NICU. A spot that means they don't have to have as much equipment and people hovering around them all the time. The girls are doing GREAT!

Thursday, September 11, 2014

The Chest Tube Is OUT!

Just a quick twin update, Kaitlin got her left chest tube out yesterday! YIPPEE! Best news in WEEKS! AND there's been no leaking or air coming out like last time, it's been over 24 hours and it's STILL OUT! She still has a chest tube in her right lung for the fluid that mysteriously accumulated there, but the leaking has slowed down and her lung capacity has improved dramatically. She does have an infection they're still fighting, but she's doing GREAT!

Abigail is our little stalwart girl. She's just always doing well.  Last night Shawn and I got to give her a bath! She loved it, loved being in the warm water, loved having her hair washed, loved the entire experience until we took her out and tried to dry her off.  But then she got to lay on Daddy's chest, so she was a pretty happy girl all night long.

Tonight they're concerned with a possible infection in Abigail, so they've run some tests. We'll know more tomorrow about that, but I wanted to share Kaitlin's AWESOME NEWS! I'll try to post some pictures of the girls soon, but that would require downloading them to my computer first from my camera.

Wednesday, September 10, 2014

NICU Time

I now know all of the alarms in the NICU. I know which one means the temperature probe has come off the baby so the bed thinks she's cold. I know which one means her medicine is done. I know the alarm that indicates a problem with breathing and which is the ventilator resetting itself. I also know the alarm that means a new baby is on it's way and to rush to the delivery room. I know where they keep the bottles so I can pump bedside. I know where the gauze pads are kept and where the pillowcases are stored. I know which chair I prefer to sit in and how I like my pillows for holding Abigail. I can read Kaitlin's chest X-ray and see if the pneumothorax has reaccumulated. I'm getting to be a pro at the NICU thing. 

Tuesday, September 9, 2014

Hoping for Boring

I read this quote on a blog today and loved it:

"A broken heart is the very instrument we use to understand how deep we love." -C Jane Kendrick

So I shared it on Facebook, which apparently caused quite the stir and concern. Nothing specifically happened to the girls to make me share that quote, but it is quite an accurate description of how I have felt lately. My heart has broken for my girls. I wish it was me getting poked and prodded and sitting alone in a hospital bed instead of my twins. I would gladly take on all of their procedures to keep their little bodies from suffering, but it was not to be.  

Every day new things happen with the girls, but not every new thing is really worthy of a blog post, or I'm afraid this would be rather boring. So, I'll just update you with where we are now. 

Abigail is doing GREAT! It's almost easy to just not mention her because she is doing so well and Kaitlin has so many problems. But I don't want her to look back on this when she's a teenager and wonder why she was never mentioned. Abigail now weighs over 2 lbs! She has quite the talent for wiggling out of her diaper and for pulling out her OG tube (the tube that goes to her belly, where all of her feedings go). Her heart rate does tend to drop and then go really high, which is what it did every time we monitored her while I was pregnant. It's just something they're still watching and have adjusted her caffeine dosage to try to help. (Did you know that preemies regularly get caffeine?) She's breathing pretty well, so they're just leaving her on her current ventilator. (It's not a ventilator, but I'm not sure exactly what it is, so I'll call it a ventilator for now.) She's on full feedings and getting an extra 24 calories per feeding. She got her PICC line out over the weekend as well.

Kaitlin.  Kaitlin is another story. I'd really like something to resolve for Kaitlin so her body wasn't having to fight on quite so many fronts. She still has her left chest tube that was put in because of air escaping the lung. But it hasn't leaked in a few days, so the doctors are hoping to pull it out soon. But because last time they took it out it leaked immediately they want to be cautious and give the lung enough time to really heal completely. But she's off of the muscle relaxants, which means she can move a little bit and it's so good to see her move! Because of all of the medications and not being able to move she has a lot of edema. (A medical term for bloated or swollen.) It's been hard to watch my little 2 lb baby gain so much weight to the point where her arms and legs were swollen and her features were hard to distinguish. But since she's been able to move a bit the swelling has already gone down around her arms and feet.  I can't wait until she looks like my little baby again, more like Abigail. BUT now there's a new problem, it appears she has water outside her lungs now. They used a needle to get some out last night, almost 3 ounces, but it wasn't getting better, so they had to put in ANOTHER chest tube on the right side to drain that fluid. Oh Kaitlin. 

And on the home front Eliza appears to have a cold. She was up much of the night last night, has a runny nose, and is just not my sweet Eliza. It's interesting how these are the symptoms of a cold in a toddler who can't tell you she's sick. I haven't wanted to take cold germs up to the hospital just in case, so I stayed home today. It was hard to be home and not visit with my girls. But Eliza needs me too. I feel pulled in so many directions. And now I'm starting to feel something too.  Not sure if it's a cold or just my seasonal allergies, but whatever it is worries me. Shawn is with the girls tonight and I'm trying to focus on resting and healing myself. I can't wait until he gets home so I can hear the latest news. We keep praying for "boring" as the NICU doctors say. I'd love a boring few days for Kaitlin so her body can just heal. They are 29 weeks gestational age today! Please keep praying for my girls, and send chocolate so I can keep going myself. 

Monday, September 1, 2014

Hospital Withdrawals

You know you've spent too much time in the hospital when:


  • You are surprised by carpet under your feet and not cold linoleum every time you get out of bed.
  • You feel the need to report every bodily function to someone
  • You find yourself dialing "3663" on your phone to order food but no one ever answers
  • You regularly look for the button on the bed that will help you sit up.
  • You still wake up every 2 hours expecting the nurse to come take your vital signs
Even though I'm going through withdrawals from the amazing Cream Cheese Cookies I had at every meal, I'm so glad to be home.  And Eliza tells me every day "Glad you are home Momma!" We can't wait until we can bring Abigail and Kaitlin home with us too. 

Eliza playing in the lockers in the Family Room at the NICU
Kaitlin had her right chest tube removed today! The left chest tube had no "bubbles" for 18 hours and then had some between 6 and 7am, but the latest X-ray at 11:00am didn't show any air pockets. We're feeling much more optimistic than we were on Saturday. Thank you thank you thank you for all of your prayers and fasting and thoughts and meditations for our Kaitlin, we definitely feel them and feel that Kaitlin is making great improvement already. We just need the left lung to heal now!

Abigail is doing GREAT! I got to hold her for an hour last night skin to skin! She was pretty fussy until they put her on my chest, then she calmed right down and just wanted to look around. I think she didn't want to miss anything, she seemed to be struggling to stay awake. After about 30 minutes she fell asleep and was the most peaceful little thing. Holding her almost feels like holding a beanie baby or small stuffed animal on your chest, just so little and light. One of the nurses also put a purple bow in her hair!

Eliza has now seen the girls twice! She loves her baby sisters already and is very interested in touching them when we visit. She loves visiting the hospital even when we don't take her into the NICU. She played at a neighbor's house yesterday and was driving a little car they have saying "I'm driving to the hospital!" She's incredibly patient and compassionate. If I wince in pain she will come right over, pat my arm and say "It's OK Momma!" The other day I told her my belly hurt so she leaned over, kissed my belly and said "Feel better Momma!" 

Saturday, August 30, 2014

Update on the Twins, Prayers Needed

When it looks like you'll have a baby in he NICU the first thing they tell you is that it's going to be a roller coaster. They tell you a lot of other things, potential problems, health concerns, possible developmental delays, but they tell you that they just don't know exactly how your baby will respond to any of those things and that your baby could have none of those problems. Both of those scenarios describe our twins right now.  If you didn't hear it from Facebook, or directly from us, the twins were born a week ago on Friday, August 22 at 26 weeks.

Baby Girl A, Abigail, was the one who's water broke. She is the smaller of the two girls weighing 1lb 15 oz. They had a harder time getting her lines in after she was born, a harder time initially getting her on the ventilator and such. But since then she has been great! Her gut is a little immature, but being born at 26 weeks the gut hasn't really developed yet, so she's been on and off of feedings. She has been on and off the light for jaundice as her billyrubin levels have been up and down. But none of these things is major and all are completely normal for a preemie of her developmental age. She's doing great, is on the lowest ventilator setting, and I've been able to hold her twice now!

Baby Girl B, Kaitlin, is on the other end of the spectrum. She was so active in my womb, always dancing and kicking. She was bigger at 2lb 1oz and her water was still intact. She did have the cord wrapped around her neck, but she cried at birth, responded quicker to the ventilator, and just all around seemed healthier for the first 24ish hours. Then she developed a hole in her lung and needed a chest tube put in on her left.  The doctor said it was normal and would only be for 1-3 days likely. We're currently on day 8. She's not making red blood cells the way they want her to so they gave her a medicine to help (I need to take better notes to recall which medicine it was) and she didn't respond, so last night they gave her a blood transfusion. Her white blood cell count is up as well as a few other things, so she has an infection and is on antibiotics. She's on pain medication and on and off of morphine which means she's not as active as Abigail and looks quite bloated. Her gut is also immature but with Kaitlin they've had to completely stop feedings for a while. She's also been under the lights. She has a murmur in her heart, but it's in a different place than they would expect, so that has the doctors and her cardiologist concerned. And last night she developed another hole, this time in her right lung.  She's just not healing the way they want her to, and she seems to be fighting on all sides right now. We met with her doctor today and they want to give her a muscle relaxer that will allow them to completely control her breathing with the idea that it will allow the lungs to rest and heal. She will not be able to move during this time. It's hard to hear about these things as her parents.

We've decided to do a special fast for Kaitlin tomorrow, August 31st. It's not Fast Sunday, but we don't want to wait a week, Kaitlin needs extra help right now. If you would like to join us we would certainly appreciate it. If you feel you cannot fast, we would love it if you would keep Kaitlin in your prayers, thoughts, or meditations.