Now I Lay Me Down To Sleep

There is a wonderful foundation called Now I Lay Me Down To Sleep. It's a group of photographers across the world who come to hospitals to take beautiful photos of terminally ill (or passed, depending on the situation) children and their families. I had heard of this foundation during my pregnancy, it was recommended to me on a parenting forum, but I never did more than look at the website.

One of our amazing UVA NICU nurses, Deana, arranged them to take photos of our Angelina and Chucky-Sue. The photographer was so nice and willing to take photos of pretty much anything we wanted. I was adamant to get a full family photo that did not have me on an operating table half naked. (That's not something you want framed in your living room.) She got some amazing shots of our girls. I'm only disappointed that there is no just Jake and Angelina photo, though we did get a lot of the three of us ( Chucky-Sue had to warm up in her box half-way through the shoot.)

I love how Angelina's little personality shines through all the photos we have of her. She liked her opinion to be known, just like her diva of a sister Chucky-Sue. But Angelina also looked so peaceful in our family photos (Except one, but she had just be yanked out of her warm bed, you'd be fussy too!)

These photos are incredibly important to me, not just to remember Angelina though that is a big part of them. But to show Chucky-Sue that her sister existed, that she IS a twin. That we were all together at one time, no matter how short a time that was. My favorite photos from the shoot were ones of just the girls together, it reminds me of how much I needed them to be together those last few days. Yes, Chucky-Sue will have no memory of it, but them being together helped to heal me. Knowing that Chucky-Sue has such a strong relationship with Angelina makes me feel as if I still have a part of Angelina with me through her.

My Littlest Baby Girl

Tuesday night was the best and worst night of my entire life. On February 23rd, Jake and I had Angelina's heart medicine stopped as there was no cure/surgery/magical fix for her many problems. Any attempt at surgery would have killed her, and there is no pill to take to grow a new kidney (outside of Star Trek).

That night Jake and I were able to cuddle our little one without any wires or tubes. She truly is gorgeous, she has such soft features and pudgy little baby hands. We sang to her, told her how much we loved her, we cried with her. She was so incredibly strong, she lasted much longer without her medicine than we ever imagined she would. Late into the night (or really, early into the morning) all three of us snuggled together on the bed (Chucky-Sue looked on from her bassinet, we did cuddle her too!) Jake and I have the same favorite/worst memory of that night, we both took turns just laying down next to her and just watching her sleep, wiggle and play with her hands. It was amazing to see her alive, and terrible to know she was dying and not being able to do a thing about it.

At 5:30am I was cuddling her as Jake dozed, I knew she had passed, but wasn't able to say anything until the nurse had come in a few minutes later to check on us. We hugged her and cried. We kept her with us till 6, then called the rest of our family to tell them. I then scooped up little Chucky-Sue and let her baby-smell comfort me.

Angelina's memorial was beautiful. It was amazing to see the support from the ward and Jake's work friends. R3D2 had reminded us days ago that Michael's first blessing for Angelina had come true: She had inspired so many people to come together, she taught our family about love and strengthened our testimony about eternal families.



Jake and I truly and 100% believe that Angelina's main purpose in being alive was to somehow get Chucky-Sue to us. Either Chuck had such a stubborn spirit that didn't want to go alone, or her physical body wouldn't have survived alone- Somehow, some way Angelina was crucial in us having Chucky-Sue. We owe her so much for that alone. She did much more than that in her 10 short days. She brought me and Jake even closer together. She inspired an entire hospital to learn about her defects and hopefully give them more answers for future cases. There are doctors across the world studying her case. She confirmed to me, our family, and so many others the importance of the gospel. She opened doors for Jake and I to share our beliefs with the nurses and other NICU-moms. She completed a whole life in 10 days, she's done far more than I could ever hope to do. Her spirit is far stronger than I deserved to be a mother to, she is what I hope to become someday.

I didn't cry very much at her memorial or graveside service. I was prepared to, with my pockets stuffed with kleenex, but I didn't feel sad. Well. No; I DID feel sad, I still do. It tears at my heart every second of every day. But at that moment, I felt nothing but peace and comfort. I felt that my baby girl, my littlest, was fine. She was more than fine, she was ecstatic to be back with our Heavenly Father. I know she's going to be watching out for our family, guiding us. (I've told her she better be, because I know I'll need the help.)



I want to write down just a few short memories of Angelina, mostly for me to remember, but also to share her adorableness.

1. Her feet. I won't post full-body photos ever of Angelina, I don't want them to spread around the internet and get made fun of. But oh. my. goodness. Her feet were fuh-reak-ing cute. They were attached at the heel, but both were super ticklish. (Just like mommy's!) each of her nurses loved to see her squirm her little toes. She was very much a charmer to her NICU nurses, they all loved her.

2. Her Naming Blessing. R3D2, Superman and Grandpa helped Jake give Angelina the most beautiful naming blessing I've ever heard. Normally in a naming blessing, the father can go on about how to live their adult lives, and how they'll grow up. Jake was truly inspired (or just a mouthpiece and not even thinking, you'd have to ask him.) by the lord. A lot of the blessing had to do with Angelina's special relationship with Chucky-Sue, and how it wouldn't end with Angelina's passing. That was a great comfort to me, as one of my deepest regrets about Angelina passing is that Chucky-Sue may not remember her little sister. Knowing that Angelina will be with Chucky-Sue and be caring for her was a huge relief for new mother instincts.

3. Her love. okay. She was an infant, couldn't do much more than sleep and cry. But her love, her peace just radiated off of her. She only ever cried when she was in pain (after two surgeries, that's acceptable.) Every one of Jake's blessing for her, including when she was in utero, always mentioned her loving nature. The day we found out about her defects,  Jake had his hand on my stomach and felt of her love. He said that even though her physical heart is broken, and half it's normal size, her capacity to love was ten fold.


4. Her Binky. She would have been a binky-a-holic. The last night, the only thing that would calm her down before a nurse could get there to give her more pain medication was her binky. Even when it fell out of her mouth (note: preemie-size binkies need to be invented.) she would continue phantom-sucking on it. It was just one of those things that make me go awwwwww. (In contrast, Chucky-Sue is really only interested in a binky a short while after eating.)

I have a million other little things I could list, her swelling, her pudgy little fingers, her gorgeous eyes, her mohawk, her burial dress, her songs, her anything. I'm sure I'll have more posts about her in the future, whenever Chucky-Sue does something cute, I'm sure I'll think of Angelina and if she'd be doing it too.

Thanks for reading my word-vomit. I just wanted to get it down (what I'm willing to share in public that is) before Chucky-Sue came home and I had even less time.

Bad Day

I'm not ready to type out all the details, but let's say today was a bad day.

Little Angelina was given her name and a beautiful blessing by Jake, Chucky-Sue was able to come visit with her sister, they were very calm  and peaceful together.

Don't expect many facebook updates the next few days, as I'll be in the NICU pretty much 24/7 for a while.

your  prayers are needed, welcome and treasured, I want you to all know that they have been a great comfort to all of us in our fragile family.

Graduation

This update is about Miss Chucky-Sue

I walked into the NICU this morning and had a heart attack, Chucky-Sue's isolette spot was empty. The monitors were off, there was no nurse. Cue freaking out like MAD. I ran to Angelina's nurse and asked where she was. Thankfully, she had just been graduated to a more stable "pod" of babies!

She's off all her IV fluids! The only wires on her now are the heart/lung/temp monitors and a feeding tube through her nose. Her job right now is to learn to take either my breast or bottle without getting tired, gain weight and control her temperature a little better.

I was able to snuggle with her for a few hours before coming back to the RMH for lunch and rest. (I did spend some time with Angelina too- her situation is generally the same.) We attempted to feed again. She latches somewhat (She seems to understand the idea behind it at least), but she gets tired after a few tries and falls asleep.

She sleeps like her mommy though, with her hands above her head. It's weird to see what little mannerisms she already has at such a young age!

I cannot believe these little ones are four days old. The days and hours have seemed to blend together, I could swear up and down that it's only Tuesday. I've noticed a strange blessing through this trial, I'm less afraid to talk to strangers, whether it be nurses, or other mothers in the milk lounge. I've met two other mothers who've been very nice to me, Nikkita showed me how the milk lounge was set up, what I'd need to bring etc. and Now, Chucky-Sue is near her little girl Regina. There was another family from RMH that have been very nice- I ate lunch with them and we compared how hard it's been (They have a little girl who was born at the same gestational age as ours.). I think finding these small blessings have helped tremendously, otherwise I'd be drowning in the horribleness.

Mommy's Discharge

The day has come that I am not looking forward to, leaving the hospital for the Ronald  McDonald House.

I know I'll really be no further away than I am now, and that I'll still be able to see the girls anytime, but the idea of leaving the hospital without them is far more painful than any stomach pain I've been having. It's a block away, there's a hourly shuttle from 7am to 6pm, I should be able to see the girls as much as I do now.

Last night the patient in the room next door was trying to soothe her little boy, hearing him cry just about tore me up. I cannot wait until the day when I have at LEAST one of my babies in my room, to hold, cuddle and be with whenever I want. (Having both with me would be unimaginably amazing.)

Angelina handled her first major surgery very well yesterday, she's definitely still under the medication, she's very still whenever we visit. After the colostomy has healed up, we should be able to hold her again, so right now kisses and hand holding will have to suffice. They keep weaning her off the breathing tube, but then keep it in in-case she has another surgery. Even so, the nurses keep praising how well she could breathe, so that's not anyone's worry. Hopefully after the first "Team Meeting" today  we'll have a set time-table for her upcoming surgeries.

Chucky-Sue got major cuddling yesterday, I held her from 3 till a bit after 6. I changed her diaper (They have to fold preemie diapers in half to fit her tiny little waist!) and got to try actual breastfeeding. She's still too young to have a very strong sucking reflex/impulse/whatever you call it, but she understood the basic principles of it. The nurses have also taught me and Jake some soothing techniques for her, as she gets VERY fussy about all the tubes and wires on her face. It was torture watching them put a feeding tube through her nose, but at the same time, I felt wonderful when I was able to calm her down afterwards. Then before Jake and I went to bed at 10, Jake was able to hold her under her blue-light thing. (Which she should be off in the next few days, her jaundice wasn't very bad to begin with, and she's mastered pooping. She got THAT talent from her Daddy.)

We want to thank everyone for their prayers, calls, letters and emails. They've been so helpful for us. (Special thank you to Jaime and Kate who's been getting me in contact with local members who may be able to help, We're meeting the local RS president today.) I want to let you all know, that in term of baby "stuff" we don't need much until they are discharged. The hospital has been great providing a lot of things. We (well, more me than Jake.) need breastfeeding accessories like nursing pads and milk storage, and Jake may need a few meals while he's in Our Town during the week. I also LOVE visitors and showing off the babies, so if anyone is willing and able to visit, feel free to call or email me and set it up.

I'll leave you off here with a few photos.





Chucky-Sue, sans breathing stuff!


our little sunbather


Angelina the night before her surgery, this photo, and the one above of Chucky-Sue show how much they look alike. (still no news on their identicalness, but that's not high priority at all.)

Valentines Day

So.

I had planned to blog about my parent's trip down for Valentine's day weekend. I even took photos of our full freezer and new baby swag, but something has come up that I think you readers want to know about more!

I woke up 2 am on sunday in a pool of water on our bed, after waking up Jake I called UVA's labor and delivery and they sent me to Our Town's Community Hospital to be checked and then get transported to UVA. We packed up our bags real quick, called family and got ourselves to the hopsital.

Once there, they checked me and I had dilated to 3cm. It wasn't until after I got to the hospital that I started to have contractions. They gave me medicine to slow them down, they also gave me antibiotics and a steroid shot to help the babies lungs are much as possible.

Around 4 I got on the ambulance with two OB nurses and we took off for UVA. We made very good time, got there in less than two hours, but my contractions had gotten stronger and weren't getting farther apart. The nurses said I was humming and singing through them, I don't remember much apart from OW OW OW.

At UVA, they checked me again and I had gotten to 5cm, at that point it is nearly impossible to slow/stop labor enough to have any positive effect on the babies. Jake, his parents and my parents all arrived shortly after 8am. At 9:06, I was rolled into the OR to be prepped.

I had a spinal block, which just felt like my whole lower body just got pins and needles and then fell asleep. It worked so well that when they called Jake in (with his handsome blue unitard) I didn't know when they actually started the surgery. Every once in a while it felt like a sandbag was on my chest, but I didn't feel any pain. I did get sick from the medicines, and it happened just as they got Chucky-Sue out, so I only remember the poor girl I got sick on. Chucky-Sue did give me a scare, as she didn't start to cry right away, but she caught up quickly. Jake got to take photos as they examined both babies, and then was allowed to hold them before they went into the NICU. I was able to give them kisses and watch Jake hold them before they were whisked away for more tests.

Then Jake has his own story about following the babies to the NICU and being with them. I was taken to a recovery room, where I got to try to move my toes for four hours. I wasn't allowed out into my room until I could move my knees to get into my own bed. I now know why the nurses were so gruff about me moving, it's definitely helped me feel better faster and be able to go down  and visit in the NICU.

And that's all it took for me to turn into a Mom.

a mom.


wow.

10 Things I learned Today.

1. 2:00 am is early.
2. Prayer can make it snow so I don't have to fly in a helicopter.
3. Jake is good at faking being calm.
4. I am good at actually being calm.
5. I could never be a nurse, they are far too patient and kind.
6. Two babies are cuter than one.
7. Just remembering Jake holding the girls can make me cry.
8. Saltines can be a FEAST after not eating for 24+ hours.
9. They don't make small enough preemie diapers for babies.
10. Even through all the wires, tubes, sensors and tape, these girls are the most gorgeous things I've ever seen in my life.



Little Angelina just a minute or so old.



Robo-Baby is CUTE. :)

I'll be writing up a full in detail what happened, just wanted to do something quick and fun tonight :)

Babies Update

Yesterday Jake and I spent the day at doctor appointments at UVA for the little ones.

First up, a regular ob/gyn appointment for me. I'm healthy, happy, blood pressure is great, my stomach is HUGE. I was measuring at 40-41 weeks along (So if this was a singleton, I'd be DONE.) All we're waiting on is the results from my 3 hour GD test, but I can get those on my thursday appointment in Big City.

Then on to the fetal echocardiogram. It was amazing to see how much bigger their hearts have gotten in a month. There's been no changes, Chucky-Sue's heart is fine, Angelina's heart has an unlabeled single ventricle heart defect. Because of her uncooperative position they couldn't get a good view of the arteries and where they lead off to. The doctors are just trying to find out as much as possible before the birth, preparation is key to plan the surgeries- no one wants a surprise during surgery. The cardiologist is very happy that Angelina's heart is reactive, it rose when they got her mad with the ultrasound wand, and lowered when she fell asleep. It looks like it's a bad situation, but the best conditions this bad situation could have. (if that makes any sense?)

Last was our very long ultrasound. (Basically everyone in UVA saw me on a table with my shirt up and belly covered in sonic gel.) Chucky-Sue is a little chub-a-lub, she's measuring 5lb 1oz, with major chipmunk cheeks. Angelina is about the same length, but much skinner, she's at 3lb 9oz. She likes to keep her feet and hands by her face, so we didn't get a great look there. the tech and the doctor both commented on how much hair both babies have- I'm glad they got my hair genes ;) again, Angelina's scrunched up position made it difficult to see all the organs, they saw adrenal glands, but no clear cut picture of kidneys or bladder, but still there has to be SOMETHING, as Evelyn still has fluid around her. My Big City doctors are will be starting the non-stress tests after my appointments now, to make sure the low fluid around Angelina isn't affecting her too much.

So all in all, no new news is very good news. I have another appointment with them in a month, to hammer out details of the leg/bladder/kidney surgery(ies?) and the actual birth. (as it's looking to little Miss Diva Chucky-Sue is perfectly happy hanging out in a breech or transverse positions, she's pushed Angelina into a tiny scrunched ball under my right ribs)

It was great to see how big they are, and marvel at how much they move, jiggle and jump in there. They are a wonderful, miraculous blessing and we cannot wait to see them :)

Baby B update

We had our first of many echocardiograms and ultrasounds on friday. (Thank you again Grandma!) here's the info:

Baby B's heart has a very complicated heart defect, but thankfully is still pumping away at a healthy rate. Basically, her two lower pumping chambers are actually just one giant leaky chamber, plus a very small underdeveloped chamber. There are few other problems, but without hand gestures and diagrams, I haven't found a way to explain them. It's a scary and serious problem- but fixable through a series of surgeries.

Her legs however pose a much harder problem. She does indeed have the Mermaid Syndrome, Sirenomelia. The legs themselves aren't the problem, but this syndrome causes the lower organs (intestines, kidneys, bladder etc. etc.) to be underdeveloped or absent. At friday's ultrasound it was hard to see what Baby B's kidney situation is because of her position. They thought they saw a somewhat working kidney, but couldn't be positive. Doctor is holding out a bit of hope because there was some fluid around the baby (kidneys are what makes the amniotic fluid after 20some-odd weeks).

Now I get to meet the neonatal team at the University of Virginia to plan Baby B's possible surgeries and go over every possible situation that could arise. Right now Jake and I are planning to give this little baby every fighting chance that technology offers to help her fight through these complications. Her job right now is to just keep that heart beating long enough to make her debut with her sister.

I have definitely felt the prayers, thoughts and support from my family and friends and I want to thank you all for everything you do. Your kind words mean the world to us right now. I tried to bear my testimony at church today, mostly I cried, sniffled, scolded Jake rom the pulpit and blubbered. I'm hoping the spirit has a good Tracy to English dictionary for the congregration!

Lately...

There's been some recent events that have had my mind swimming with questions. After getting some troubling news, my mind went somewhere I would have never guessed- to a young women's sunday lesson. I remember vaguely learning about talents. Our presidency had gotten our parents to write down what they believed their child's talents were. I remember wishing I had a more "outward" talent like my friends. Some were amazing at sports, or very musically gifted. Others were very intellegent or creative. I remember one of the talents my parents wrote down for me was Peace Maker, that in social situations (specially school) I didn't continue fights and I'd tried to be inclusive with everyone. This is a talent I'm proud to have and I treasure it, but at 15 it's not as cool as being able to shoot 100% at the three point line or sight-read terribly hard music.

My mind also went to 3rd grade, my favorite elementary school year. I had an amazing teacher Mrs. Gray and some great close friends. I also remembered one boy. His name was Cory and he had some sort of physical and mental disability. (At 8 years old it didn't matter much what it exactly was) He was a perfect sweetheart and I remember trying hard to include him in everything. Not out of social guilt which I think some adults are prone to, not because I was asked to befriend him, but because I liked him. He was funny, kind and I wanted to be his friend.

I was kind of surprised at these thoughts, at the surface they have very little to do with the news I recieved. They were distant memories, long buried by time and hadn't changed my life in any significant way I could see. But after mulling them over, and lots lots lots lots and looots of praying, I am beginning to see a string through all three events.

We found out at the most recent ultrasound on friday that Baby B most likely has a serious heart defect and possibly an extremely rare birth defect called Sirenomelia or "Mermaid Syndrome". His/Her legs do not move independantly of each other and are most likely fused together. It affects 1 in about 100,000 births, and even more so in twins. The extent of either medical problem is currently unknown because of the low quality ultrasound at my previous doctor's appointment. On Friday I switched up to a OB practice in Big City that is directly across the street from the hospital. I'll soon be seeing a pediatric cardiologist for a fetal echocardiogram as well as high-risk ultrasound specialists. Hopefully within the next week or two we'll have more information on the exact diagonsis for both the heart and legs. Thankfully both babies are growing at the right rate, have good weights and everything else looks like it should. (I'll be sure to keep this blog updated for faraway friends and family.)

After the inital freaking out, crying, distraught, and overwhelmed feelings, my mind when to those two memories. At that time it actually annoyed me that my mind could think of anything else but the poor child, but now I think I understand. Heavenly Father was reminding me that he had prepared me for this long ago, in very small and simple ways. He gave me a loving and accepting heart, He sent me to a strong family, most of whom in their own ways have dealt with children with a wide variety of problems, He has given me their experience and advice. He's given Baby B a strong, loving, and protective sister (Baby A). He has everything planned out for us and thanks to these seemingly random memories, I believe I've seen a glimpse of it.

Happy Thanksgiving!

Jake and I celebrated with his family this year. We ate a DELICIOUS dinner, had funny conversation and played games. (Jake and I creamed Grandma and Nana in TriBond, hehe) I've been reminded through chain emails, facebook, tv shows, news programs and fabulous parades to share what I am thankful for this year.

I am thankful for a wonderful husband who, while he maintains he's an evil mastermind, is truly sweet, kind and funny.

I am thankful for in-laws who have welcomed me into their family entirely and treat me as one of their own.

I am thankful for the gospel and the never-ending comfort and support it has provided in my life.

I am thankful for forgiving parents who raised me to be kind, polite and a well-rounded individual.

I am thankful for friends both near and far that can make me laugh with a single word or knowing look.

I am thankful for all the children in my life who brighten my day. (including the tiny twins who can wake me with swift kicks!)

I am thankful for maternity jeans- seriously they're mega comfortable.

I am thankful for cellphones, keeping me in touch with loved ones who are far away from me.

I am thankful for so many things, there is NO way I could list them here without boring you (I can't think of clever quips for all of them!!) Now I will remind you to share what you're thankful for this season, and the whole year through!




...wow that sounded cheesy eh?

Double your pleasure, Double your fun

At my high risk ultrasound yesterday the tech gave us the BIGGEST shock ever. I was VERY lucky I was lying down when she told me because I was close to fainting. Jake and I are having TWINS.

In case you misread that, that's TWO BABIES.

I'll let you have a moment to drink that in.


Ready? okay.

I am constantly see-sawing between deliriously happy and scared beyond all belief. We had just hammered out how we were going to afford the one baby, and it was going to be tight but right now caring and raising two babies just seems impossible! Not to mention the fact that we have a hard enough time keeping a single baby in my uterus long enough, let alone two. Our heads are just swimming with all this new information. The ultrasound said everyone was growing just fine, they each had their own healthy placenta. Baby A is a girl, and a VERY active one. She wiggled, danced and squirmed during the entire ordeal. Baby B was very modest and refused to give us a good shot, so we don't know the gender yet. S/he was much more laid back and didn't want to move around much (possibly because her/his sister was going nuts!)

Thankfully I do have an aunt who had twin girls just before Jake and I got married, and we have friends in our ward who've had twins and just warning you guys- We'll be bugging you for advice, information and tips A LOT.

Two. Deux. Dos. TWINS