Parachuting Blankets

Last night I was putting Eliza to bed.  We take turns Shawn and I, and as Eliza says it was "Mommy Night." I was exhausted and had a headache and was trying to rush through the process.  We brushed teeth, read stories in the big red chair, and it was finally time to tuck her in. She climbed up on her bed and I draped blanket after blanket on top of her.  That girl loves lots of blankets, but when I check on her later she's always on top of all of them and sweaty.  I got to the final blanket, a nice lightweight one she calls "flower blanket" and I lifted it up in the sky and let it parachute down on her over and over again.  Her face was filled with pure glee and I thought "I hope this is what she remembers of this day. I hope this is her first childhood memory when she is older." I want her to remember that her mommy took time to parachute a blanket over and over, that I let her climb on my lap to watch Adele music videos on my laptop.  Not that I was tired and achey and short tempered yesterday.

Waiting for the Kids

Waiting for the "kids" to come on Halloween.

NICU Nurses

A sneaky view of the nurses taking care of Katie.

I've long thought that it takes a special person to be a nurse, but now I know that NICU nurses are a unique breed even among nurses. Not only do they take care of the smallest, most vulnerable patients, they care for their parents. They hug us when we need it, and provide that moment of comfort after the doctor delivers the clinical diagnosis. At our hospital the families have what they call "primary" nurses. These nurses are first to be scheduled with our family. You see them often, they know you, and you know them. I love all of our primary nurses. And I've discovered that each of them gives me a different style of nursing, and it seems just when I need it, the right nurse is assigned to us. I say us, because they truly take care of our entire family, not just the two babies who are technically their patients.

Linda was our nurse the very first night. She is the nurse who told Shawn that he could give the girls blessings when we hadn't even thought of it. She has been the most consistent nurse for our girls. We got to the point with Linda that we knew she was going to be with them every Sunday, so we decided that Sunday nights were going to be our nights at home with Eliza. I knew that they were in safe hands with Linda.  One night Linda was scheduled but had been bumped from our girls so another nurse who was training could have our girls. Linda did double duty that night as she made sure the new nurse knew exactly how we did things and checked on our girls as often as the nurse scheduled.  Linda is the one who makes things happen, who ensures we're talking to the OT when we need to. Linda loves our girls. And we love Linda. She will be "Auntie Linda" to the girls.

Joy showed up one day unexpectedly and we lost track of time just talking. That happened every time Joy was assigned to us, we just talked the entire time I was at the hospital. When I needed a friend at the hospital, someone to talk to, Joy showed up. She always brought me water and took care of me. Joy personifies her name.

Meagan is kind and quiet. She is a newer, young nurse, but is so incredibly competent, she acts like a nurse with decades of experience. Meagan and I have bonded on a deeper level, and have shared some of the harder struggles together. She makes signs for the girls birthdays and takes joy in putting them in their cutest outfits. We didn't see Meagan for about 3 weeks and I missed her terribly.

Pam is a very mothering type of nurse. She knows when to step in and help me, but also when to leave me to try to do things on my own.  She gently nudges me in the right direction and explains why we do things a certain way. Pam is the nurse who was there the first day I got to hold Katie after three weeks of waiting. She is the one who told me, and when I started to cry pulled me into her arms. She will always hold a special place in my heart.

Wendy is the nurse other nurses want as their mom. Wendy is that nurse that seems in charge because she just knows how things are done and all of the other nurses come to her for help. She is an incredible woman and mother. Any mother who gets to work with Wendy is blessed indeed. Wendy brings a calm knowledge to the storm that can be the NICU.

I will miss these women. I will want to call on them in the dark of night when the twins are crying. I will miss sharing my day with them. I will miss their knowledge and expertise. I've already tried to recruit Wendy as a babysitter. What is better than a babysitter with NICU experience? We love them all. They are all family now.

Twin Momma fear

When I was in third or fourth grade there was this book that was the "popular" book that every third grade girl wanted to read. It was about a girl whose mom and step dad had twin girls. I'm sure the book was about how the girl felt left out and abandoned by her parents now that there were two babies. I just remember one scene very vividly. The girl was watching her sisters for her mom and was so mad that she decided to switch the clothes the babies were wearing, because baby A always wore yellow and baby B always wore green. Then she immediately regretted it and tried to put them back in the right outfits and but couldn't tell them apart anymore and didn't know who belonged in what color. She went to her mom and confessed what happened and her mom said it was ok. She could tell the twins apart because twin A had a cowlick and twin B had a beauty mark and it was all ok.

This is my biggest twin mommy fear! That the twins will be home and next to each other and I won't be able to tell them apart! They won't have any labels on their legs telling me which one is twin a and which is twin b! (Fun NICU fact, the girls are too small for wrist bands most babies get so they taped labels to their backs and legs.) I'll look at Abby and think, oh her forehead is bigger, and then I look at Katie and think no, they're the same. I'll look at Katie and be sure her face is longer until I look at Abby. All the nurses ask if they are identical, (they aren't) and remark how much they look alike. I already plan to paint their toe nails to help us tell them apart. But as their Momma I feel like I shouldn't depend on that to tell them apart. I am just hoping when we get them home and together that a magic spell will be cast and I'll know who is who. 

The Last 12 Weeks

This is another one of those posts that is mostly for me, to remember what the last 12 weeks have been like. So, here's a bit of what our schedule has been like for 12 weeks.

Abby left, Katie right. I just love Katie's expression.

The first thing to understand is that, especially when they were smaller, there were only certain times of the day when we could get in with the girls and touch them in the beginning, or hold them and take care of them as they got older. The girls do their growing when they sleep, so they want them to sleep as much as possible and holding them or even touching them pulls them out of that excellent sleep. So, we would always try to go up during "cares" that happens every 3 hours with Katie's cares being an hour behind Abby's cares. Cares involves taking their temperature, changing their diapers, measuring their bellies, and then feeding them.

So, my day lately really starts around 3:30am. My alarm goes off telling me it's time to get up and pump.  And let me tell you from experience it's so much easier to get up for a crying hungry baby than to get up for a pump. But pumping no more than 4-5 hours apart is essential for keeping up my milk supply. So, the alarm goes off at 3:30 and I usually manage to hit my phone three or four times and actually get up around 4:00am. I've also been known to completely sleep through the alarm, so I regularly change the sound my alarm makes to keep me from sleeping through it! Sometimes Shawn will turn over and tell me to get up and I usually say something grumpy like "SLEEP!" and hit my phone again to snooze the alarm.  So, at 4:00 I stumble to the living room and sit on the couch for 20 minutes while trying to stay awake enough to pump but not enough to keep me awake. I'll usually watch something online or play solitaire. I have to stay sitting up for the pump to work, so falling back asleep isn't really an option. Then I stumble back to bed until about 8:00 when Eliza wakes up.

My Mom has been staying with us and she usually gets Eliza out of bed and changes her diaper so I can sleep in for just a little bit longer. In the morning I get up, pump again, eat breakfast, play a little with Eliza and then it's time to go to the hospital for 10:00am cares. Shawn always calls the hospital on his way in to work, so he'll text me who the nurse is that morning and how the girls did over night.

I stay at the hospital for around 3 hours doing cares with both girls and holding them or feeding them, and then pumping again at the hospital before I grab a chocolate milk from the parent lounge and head home. Abby is just ready to start her next cares when it's time for me to head home.

In the afternoon I'll eat lunch and pump, and if I'm lucky take a quick nap or shower before Eliza gets up from her nap. Then I'll play with Eliza or watch Sesame Street with her and then it's time to pump AGAIN! Then a little dinner, and Shawn and I head back to the hospital for 7:00pm cares. At night Shawn and I will each take care of one of the girls so it's a bit of a quicker process and we head home by about 9:00pm.  The hospital is 30 minutes away, so that's two hours of every day spent in the car to and from the hospital. I've definitely caught up on my podcasts and have even found some new ones. I might even miss that time once I no longer have that commute, but really I'm looking forward to having two more hours of every day to spend with Eliza and the twins. At 10:30pm I do one last pump for an hour, called a "power pump." It's when I catch up on TV. Thursday night is my favorite right now because Grey's Anatomy, Parenthood, and Biggest Loser are all on the Tivo when I get home.

Eliza playing at the hospital.

On weekends Shawn and I split up who goes to the hospital and who stays home with Eliza.  Eliza LOVES going to the hospital, but because of the winter/RSV/cold and flu season kids are not allowed in the NICU so while she has gotten to meet them twice, she can no longer see her sisters. But she still loves going to the hospital and will just hang out in the lobby. There's a cute statue of a family, and Eliza loves to climb on the statue and give the little girl a hug. On Sundays a neighbor or Shawn's brother and sister-in-law will take care of Eliza so we can go up for 1:00pm cares. Then we spend the evening with Eliza.  We think it's important to have one night a week we are together as a family and are both there to put Eliza to bed. It's also nice to have one night that Shawn and I get to spend time together after Eliza's in bed.

So, that's been my life for the last 12 weeks. I know once we bring the twins home life will be hard, but the last 12 weeks have been hard! I'm looking forward to not saying goodbye to Eliza twice a day, and to not feeling like I'm choosing between spending time with Eliza and spending time with the twins. I know to a degree that it will still be like that, but I can't wait to have all three of my girls together. I'm looking forward to getting up with the twins instead of to an alarm clock and a pump. I'm looking forward to making the decisions about the girls and not asking a nurse if it's OK if I pick up my daughter.

A Long Post About Food

It turns out that eating is way more complicated when you are a preemie! I mentioned in my last post that we've been working on breastfeeding for over a month now. I want to remember what a journey this was to get them to start eating, so this might not be the most interesting post to anyone else.

Shawn feeding Abby

When the girls were first born they both got their nutrition through an IV. When Abby was about a week old they let her have just a little breastmilk several times a day, like 1 or 2 mls. (To get perspective on that, there are 30 mls in 1 oz.) Both of the girls were off and on the breastmilk at the first, sometimes their bellies couldn't tolerate it, so they would take them off of the breastmilk, wait a few days, and try again. It was a day of celebration that Katie finally got breastmilk, it took her longer to have any because of her chest tubes. When they were tolerating the breastmilk they started adding calories to it. Of course all of these feedings were through tubes down their throats at first, and then through their noses once they were off of ventilators. The amount of breastmilk they received was based upon their weight, just the littlest bit at a time. 

I've been pumping since they were born. 12 weeks (on Friday) of pumping! I think I could do another blog post just about pumping, but I think I really would be the only one interested in that. I pump 6-7 times a day (though they recommend 10 for twins, but I haven't figured out how to get 10 pumpings in) for about 20 minutes each time. My last pump is a power pump for an hour.  I worked up to 20 ounces per day. (However there was a period when I took some allergy medication and my daily totals dropped to around 12 ounces before I figured it out.) I take most of the milk up to the hospital and occasionally put some in our freezer for the future. 

Abby

About six weeks ago when Abby reached 32 weeks they told me I could start "non-nutritive breastfeeding." That's the point at which a preemie starts to figure out the "suck, swallow, breathe" that is needed for breastfeeding. We started just doing once a day, and I would pump before I starting to breastfeed, so if the girls did get any milk it wouldn't overwhelm them. We started Katie about a week after Abby, she just didn't "cue" as soon. (A "cue would be sucking on her pacifier, putting her hands to her mouth, waking up at her feedings every 3 hours.) After about 2-3 weeks of the non-nutritive breastfeeding, we got to do nutritive breastfeeding! Which just meant no pumping first and we weighed the girls before and after to see how much they would gain and therefore how much they drank during that time. After what felt like weeks and weeks they just weren't getting anything, so we tried breastfeeding with a nipple shield, which makes it easier for them to latch and easier to suck, and they started to get milk! Katie got 19mls the first time we tried it and Abby got 7mls! I did a happy dance that night! It felt like a giant leap forward towards coming home. 

Annie feeding Katie

After what felt again like weeks and weeks, but was only about 10 days the girls STILL weren't getting full feedings from breastfeeding. I would try and try and try twice a day, but the girls didn't seem to be doing any better.  The Occupational Therapists, Lactation Consultants, Nurses and Doctors all talked about this "switch" in their brains, and once it went on the girls would figure out the nursing and do so well.  The switch never seemed to go on. 

Then last Monday I showed up at the hospital and they told me we were going to try bottle feeding the girls. I was so upset! I didn't want to try bottle feeding, I wanted to give them more time to figure out breastfeeding! I wanted the switch to go on first! The OT came and we talked about it. She said the bottle was the best way to get the girls home. And I agreed. And it was amazing, both the girls did amazing at their first bottles, eating at least half of the bottle! Soon the girls were on "cue based" feedings. Meaning, if they woke up for their feedings every three hours and cued, the girls would be fed with a bottle. If they didn't wake up and cue, they would be fed through the NG tube in their nose. And if they didn't eat all of their bottle or get enough breastfeeding, they got the remainder in the NG tube. I still tried breastfeeding every day. It worked! At least they were doing a bottle, but again, not enough to move on to the next step. So, last night they took them a half a step, they took their feedings down from 47mls (a full feeding based on their weight) to 36mls, about 75% of a full feeding. This way they would get hungry between feedings. If they didn't wake up they would get the NG tube, if they took a bottle they could take as much as they wanted, up to the full feeding. 

Katie

And this morning Abigail got moved up to the next step! On request feeding! She has to take all of her feedings orally and won't be given an NG tube unless she misses two feedings in a row. If she does well for 12 hours, they'll try for 24.  If she does well for 24 then they take the tube out, and she is at the final step, on demand feedings! That's the last step before home! 

As much as I wish breastfeeding was going better, I have to say the bottle feeding is pretty nice. The nurses feed the girls if Shawn and I aren't there, and it's great that Shawn can also feed the girls. It will be wonderful to come home and not feel like I'm the only way they're going to eat, like it was with Eliza. We were pretty determined that these girls would take bottles at some point. We're still working on breastfeeding, and I'm definitely planning on doing it at home too.  

So, there's a LONG post about feeding a preemie. It's been such a long road, and it feels so good to be at the end of this long road. Katie is right behind Abby. She had an eye exam today which can make it harder to take a bottle, so she'll start on request tomorrow, or if she does anyway, she'll skip on request and go straight to on demand! Yay! We're close! Just a few more steps and then HOME!

A Small Update

It's about time for an update, don't you think?

Abigail weighs 5lbs 5 oz and continues to gain about 1/2 oz to 1 oz every day! Kaitlin weighs 5lbs 3 oz and is a little behind Abigail on weight gain, but they're both going in the right direction. Right now with both girls we are working on eating. We have been working on breastfeeding for over a month now and we started bottles last week. Eating is complicated when you are a preemie! They want them to get about 50% of their milk orally, either from breastfeeding or from bottles. Once they do that consistently they have a 12 hour eating "on demand" test, where they ONLY feed them when they wake up and are hungry and eat all of their meals orally. If they do well on that (getting at least 75% of what they're supposed to get) they'll try for 24 hours. Once they pass the 24 hour test they get to come home! Right now we are doing "cue based" feedings. So, if they wake up and cue that they are hungry the nurse or I will feed them with a bottle (or I'll work on breastfeeding). If they don't wake up they get their feeding through a tube in the nose. If they don't eat all of their bottle they get the remainder through the tube. It's a very up and down process.  One day the girls will be doing GREAT, but then it seems to wear them out and the next day they sleep most of the day. So, they need stamina to get through all of their feedings. Katie seems to be doing a little worse than Abby, so the doctors are preparing us that the girls may not come home at the same time.

That's really all of the news with the girls right now. We've also moved from NICU B to NICU C and have a lovely view of the mountains. There are a lot more babies in NICU C and more nurses. We were starting to feel like we were the only ones left in NICU B, so it's fun to move to a different area. I've made friends with a few of the moms who have babies nearby. The girls are now out of preemie clothes and diapers and are wearing newborn outfits! We can't wait for them to come home.

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.

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. 

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.

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!

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.

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. 

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. 

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!" 

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.

One Week In

Eliza and my birthday ballons

Today is Day 7 being on hospital bed rest and as of 10:30pm it will have been a week since my water broke. So, here's an update:

Things are. . . the same.

Yep, nothing new to report. I'm still on bedrest. I'm still not having contractions.  The babies still look good. I'm off the constant monitoring of the babies, now it happens twice a day, right after I wake up and right before I go to sleep at night. And they look great.  We have learned from this that Baby A is pretty dependable, she's in the same place every day and it's easy to find her heartbeat. Baby B is our mover. She likes to run away from the monitor.  Just when the nurse is sure she has both babies heartbeats and walks out of the room Baby B will move and the nurse has to come in and reposition. The bad news about this is that sometimes it means I'm on the monitor for a LONG time. The good news is that I get more ultrasounds because she's such a stinker they need help finding her. I love any chance I get to see my babies and any chance I get to hear their hearts beating. I'm really curious to see what their personalities are like after they get here and if Baby B will be our feisty girl and Baby A will be our calm girl, or if Baby A is just calm because she can't move because her sister is sitting on top of her. (Just for the future Baby B, it is NOT acceptable to sit on your sister once you are out of the womb.) And we're testing out names for the babies so we don't have to keep calling them Baby A and Baby B. 

The exciting parts of my day include when I get to get up and shower and when Shawn and Eliza come to visit. I have things to do, knitting, a book to read, a photography class to complete. But I have to say I'm getting a little bit tired of these four walls. I haven't been out of this room since Sunday. I think a little field trip is in order! I'm setting up baby registries online and putting together photo books. I tried browsing clothes for "after" but that got a little depressing. 

There's your update.  Medically things are status quo. Otherwise I'm getting a little antsy. Feel free to text, call, email, send random jokes or inspirational articles!

Blessings

Just a cute picture of Eliza that has nothing to do with this post

I feel like I don't write much religious stuff on my blog. I think I've posted that I belong to the Church of Jesus Christ of Latter-Day Saints, or I'm a Mormon. I just want to take a post to mention all the blessings that have come from the last few days.

Once we were told to go to the hospital Thursday night we had Lance (Shawn's brother) come over to stay with Eliza (first blessing, family nearby!) As soon as he got there he and Shawn gave me a Priesthood Blessing and immediately my worry went away and I was overwhelmed with peace. I was told in the blessing that we would receive the best possible outcome, that everything would be OK. Of course in my head I was hoping that meant my water hadn't ruptured and something else happened.

I felt that peace throughout Thursday night and Friday. And really we have been incredibly blessed by this situation. It is true that we are having the best possible scenario given the circumstances. I am not contracting, the babies look good, and my cervix is closed. I don't have an infection, and we are all healthy.

One huge concern I had was that my parents were at the family cabin and didn't plan on getting home until Saturday. And there's no cell coverage at the cabin. I texted them as soon as we found out what was going on, and then called them again the next morning, knowing that it would be hours to days before they got the messages. I just kept praying that they would need to get to a place with cell phone service for some reason. I called and texted my siblings (usually my Mom's job) and let them know what was going on and also that Mom and Dad were at the cabin.  My brother immediately responded and said he'd go get Mom and Dad.  My sister responded and just said she was on her way to the hospital
. My other sister said she'd stay at our house with Eliza that night and also take Scooter for several days. Amazing. My family jumped in just how I needed them.

And of course Shawn's family has been helpful too from Lance coming over Thursday night, to Dena getting us transferred to her OB practice in the middle of the night and also just being a reassuring presence who understands exactly what's going on.  Shawn's family is spread around more but each of them have been in touch and his parents are coming to take care of Eliza as much as we need.

Ward members mowed our lawn, we have more offers to take care of Eliza than we can utilize, and I can very much feel the prayers being said on our behalf. One small blessing that is very personal to me, one night I was in so much pain from the IV, just really suffering and feeling like every drip of antibiotic was a knife slicing through my hand. I was crying and I knew that nothing could take away the pain. I prayed and prayed for help. And then I thought of my babies and how I was going through this for them, and how if this really minimal pain would keep them safe longer I was completely willing to do it, and before long the pain disappeared and I was fine. I am grateful for that experience.

I have a testimony that there is a God, a kind, loving Heavenly Father who knows me as a daughter, an individual. He knows my fears, my wants, and my needs. He knows my baby girls better than I know them. I know that there is a purpose to this time and I may not get to understand it yet, but I have faith that there is a reason for all of this. I feel His love as I lay here in the hospital. I know He is also watching out for my Shawn and my Eliza. I am not alone in this.  The misery and pain and lonliness is not just felt by me, but is felt by my little family, and that makes me want to be brave for them. We will all get through this time. We will come out stronger on the other end.

Update

It's a good thing I had that lovely walk with Eliza Thursday morning because that night my water broke! I'm only 25 weeks! I had just turned out my light to go to sleep and felt a little trickle, and thought that's not right. I got up and the trickle turned into a gush. (sorry if that's too much information!) I woke up Shawn (who thought I had just lost bladder control, but I think that's what we were both secretly hoping for) and we called my OB.  She said I had two options, head to hospital A or head to hospital B, and then be transferred to hospital A. We were closer to A anyway so that's where we went.  And they confirmed that my water broke. And then told us what we didn't want to hear. That I wasn't going to be leaving the hospital any time soon. So, if you don't want in depth information, here's the Cliff Notes version: I'm in the hospital until I deliver the babies.  We're hoping I make it to 34 weeks which means a little over 8 weeks in the hospital. I'm not contracting and the babies look good, so we're very optimistic. We have family taking care of Eliza, and Shawn's been here with me all weekend but will go back to work on Monday.  We need him to be able to take as much time off as possible once the babies do come!

OK, here's the long version.

After being all night at hospital A getting checked out, monitoring the babies, getting my first dose of steroids to help the girl's lungs develop, and lots of antibiotics in case of infection, we found out that the NICU at that hospital was full, so they were transferring us to Hospital C! We tried to sleep while waiting for the ambulance to take me away, but really neither of us could sleep so we were up all night.  Finally around 5:30 am the ambulance came and I was taken 30 minutes away to Hospital C complete with lights and sirens.  Very surreal.  I kept asking myself if I was going to wake up in my own bed.  It's also strange to leave your sleeping child in the middle of the night and then find out you aren't going to be going home for 2 months! No more of my bed! I left dirty dishes in the sink! I was going to paint flowers on the wall in Eliza's new big girl room! I was going to move her to a big girl bed! I was going to get her hair cut! Now I won't be doing any of those things!

The first 48 hours after your water breaks most women go into labor and give birth. So, for us it was a "let's get past 48 hours" waiting game. My regular OB does not deliver here, so I've been transferred to a new practice, which is a blessing because my sister-in-law, Dena is a midwife with that practice and was able to pull some 4am strings as soon as she found out we were coming here and so we're in her practice.  Everyone speaks very highly of them, and so far we like all the doctors we've met.

We had another ultrasound which confirmed the babies look great. Baby A is 1lb 13 oz and is the one whose water broke. Baby B is 2lb even and is a couple of days ahead of Baby A. But all the anatomy is right on, their hearts look good, and other than being low on amniotic fluid around Baby A, they babies are perfect! (Oh, and I'll continue to produce amniotic fluid, so they'll still be some around Baby A at all times, just lower than Baby B.) We've learned about the risk signs for early labor or for other things that can go wrong (infection, prolapsed cord, placenta previa) and are watching out for those. But I'm not having contractions, my blood pressure is good, and no fever so really, we have the best possible outcome given the circumstances.

The first 48 hours I had to be monitored constantly with three monitors on my belly, one for each baby and one for my uterus to measure contractions. I also had two IV antibiotics. It was just annoying because any time I would move the monitors would also need to be moved.  And we have learned that Baby B is our dancer, she likes to dance and move around. Just when you think you have found her on the monitor she will duck away somewhere else. One of the babies had hiccups the other day which made it so we couldn't find the heartbeats for either baby. While annoying, it's also so comforting to hear the heartbeats or look over and see them up on the screen.

One of the two antibiotics I received was incredibly painful for some reason. It just felt like my arm was being sliced open every time it would drip into my vein.  I went through 5 out of 8 doses and then a nurse noticed that my arm around the IV was getting hard so they would need to start a new IV, and the doctor said that I could switch to oral antibiotics! First victory! No more arm pain, and one less cord to drag behind me when I get up to use the bathroom.

Sleep the last two nights here in the hospital has been elusive mostly due to the monitors. Even just adjusting an inch or two to get more comfortable knocks the monitors or moves the babies and they have to come readjust. Plus I still get to take pills in the middle of the night AND they check my vitals every couple of hours.  I've had to take some sleeping pills, but am hoping tonight I can get to sleep on my own.

But the biggest happiest news of all came this morning when they said they could take the monitors off! YAY! I will still get checked twice a day for about 30 minutes but I can move without worrying, I can go to the bathroom without having to get unplugged, and I can see and feel my belly again! AND I also got wheelchair privileges twice a day, and included in that I can shower! So this morning I showered and washed my hair and finally feel clean and a bit better.  Here's a "photo booth" picture of me. Hospital Day 3, wet hair (which is why it looks so dark) and no makeup.  But feeling in good spirits.

A Small Moment to Remember

Eliza and I took a walk to the neighborhood park today. That's a major accomplishment for me lately, I walk at a slow waddle when I'm feeling good, and sadly getting dressed has become more optional than not. But I woke up feeling good and it was still below 80 degrees at 11:00am, so off to the park we went. I pushed Eliza in her stroller and we slowly made our way the 1/3 mile to the neighborhood park with slides. I was regretting the decision not to wear my maternity support belt by the time I got across the street from my house. But we made it in good time and Eliza enjoyed herself. I did my best to follow her around but take advantage of shade and places to sit. When it was time to go home Eliza wanted to walk rather than be in her stroller. Off she ran as 2 year olds do. Her whole body gets into the run, with her elbows swinging back and forth and her torso twisting from side to side as she runs. We stopped at a nice bench in the shade and drank a little water while talking about the wind and the sounds we heard. Soon some kids came out of their yard to play on the parkway and Eliza went over to say hi.  The nice teenagers gave her a ball to throw, which she decided she wanted to take home instead, but what a pretty good sport when I told her to give it back. We continued on our way and she yelled "Goodbye kids! See you later!" over and over again.  Off she ran once more, but then she turned back, ran to my side and held my hand for the rest of the walk home.  And that's the small moment I want to remember, my two year old grabbing my hand as we walked home from the park. There's not much I can easily do these days. Getting down on the floor to play is too hard. Running in the back yard is impossible. Even getting up to dance with her requires major effort these days. I'm basically the size of my full term self when I was pregnant with Eliza but I still have three months to go. So doing little things like walking and holding hands is a pretty big deal for us right now, and it feels wonderful to spend this one on one time with her while I can.

(Right now it's after "nap time" and she's still playing in her crib.  I'm sitting in the chair in her room and she's roaring at me like a lion and asking me to roar back.  Anytime, Baby Girl, especially because it makes you smile and giggle.)