Tuesday, November 18, 2014

Monday, November 17, 2014

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.

Sunday, November 16, 2014

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. 

Thursday, November 13, 2014

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.

Wednesday, November 12, 2014

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!


Monday, November 10, 2014

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.

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.