Tuesday, October 14, 2014

NICU Blues

Early on in our NICU stay they warned us that when our babies became healthy and were just needing to gain weight it would be harder to wait than it was with our little tiny babies who seemed so sick. Of course we didn't believe them. What could be harder than looking at your little 2lb baby with tubes and wires and not get to pick her up and hold her? But when your baby is 2lb and has wires and tubes all over, there is no doubt in your mind that she needs to be in the NICU. You know that you can't take care of her at home, you don't have the equipment or knowledge.

Now the girls are bigger, 3lb 11oz and 3lb 12oz. They look huge compared to the little 2lb babies they were just 7 weeks ago. And now it is all about gaining weight and eating. And every day it gets harder and harder to just leave my babies in the NICU. I want to take them home with me. I want to pick them up and change their diapers without a nurse watching over my shoulder. Last night Kaitlin had some acid reflux. I could tell that she just wasn't feeling well, but when I asked the nurse about it, she acted like it was no big deal. And really, acid reflux isn't a big deal, it's very common in preemies especially. But Kaitlin was so uncomfortable and I felt helpless that I couldn't comfort her the way I wanted to, to put her on my shoulder and help her get those air bubbles out. Eventually she spit up just about everything she had eaten and you could tell she felt much better as I put her back in her isolette. But I didn't feel better. I wanted to be the one to stay by her side all night and make sure that she didn't continue to reflux. I wanted to be the one to comfort her when she got upset. I ache to take them home with me, to dress them without wires and feeding tubes in the way, to decide when I want to bathe them, to let their big sister see them. In short, I want to be their Momma!

Sometimes, I'll be talking with the nurse about what's going on, about how the day is going, about how I want the girls to be taken care of, and the nurse will respond "You're the Mom!" and I think "not really, not right now." I feel so helpless and powerless over this situation. I love the nurses, I think they are all saints for taking care of my girls. I know that there will come a time when I will wish I could had the dirty diapers and burp cloths to the nurse to throw away and to wash. I will want the nurse to help me give the girls a bath and to pick them up out of their cribs and hand them to me while I lounge in a rocking chair. I'll want their expertise when the girls are extra fussy and I don't know what's going on.  I'm sure I'll even want the monitors that tell me their heart rate, how fast they are breathing, and what their oxygen saturation is. But right now, today, I just want to take them home and be a normal family with newborns.

Wednesday, October 1, 2014

A Morning in the NICU

Last night was a slightly downhill night in the NICU. Kaitlin had had a stuffy nose and was struggling to breathe. Instead of holding her we spent the evening waiting for the doctor to come look at her and then waiting for the respiratory therapist to suction out her nose. It was decided she might have a cold. So we left for the night with Kaitlin in isolation, a sample at the lab with a 24 hour wait for results, and a possible chest X-ray because of all the lung problems she's had so far. Isolation in the NICU means that the curtain is pulled between Kaitlin and Abigail's beds, and you have to wear a gown and mask when with Kaitlin to prevent spreading any germs. We went to bed worried about our little girl and hoping it was just a cold and not a sign of something worse. 

Now here I sit in the NICU holding both my girls together! The chest X-ray came back clear and the test that was supposed to take a day took less than 12 hours and showed no virus! Kaitlin is fine, just stuffy. They have changed her cannula and ventilator settings and she's doing so much better. The peace I feel when I'm here, holding my girls, is amazing. When I'm with them I know it will all be ok. When I leave the worry starts to set in. The girls are cuddled up together sleeping soundly on my chest. They are happy and peaceful and so am I. 

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.