My Little Pests

No, not my children.

No, my house isn't infested with buggies.

My gallstones are my little pests.

These things are PAINFUL. I'd MUCH rather go through labor again and  again and again than to deal with the pain these tiny buggers cause me. They make me feel as if I'm getting strangle, stabbed and kicked in the stomach all at the same time.

Tonight I went to the ER with a REALLY bad attack (it came with fever and nausea) and was told "Your bloodwork is fine, we don't really know what's wrong."

Tomorrow I'm having an ultrasound to see how bad my gallstones are (amount, size, location etc.) and hopefully seeing that they haven't hurt my liver or pancreas.

I cannot wait to have real insurance to be able to get this silly non-essential organ yanked out of me!! (I'll be all pro-healthcare bill if I can get that!!)

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.)

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!

Mother Nature's late Christmas Gift

So, after a fun morning to the ER, an ultrasound and a few yummy vials of pain medication, I now know that I have gallstones. The ER doc recommended surgery instead of medication because of the amount of gallstones, and we'll be setting up the surgery soon. (The holiday meant I couldn't have set it up then, as gallstones aren't life-threatening.) It's happening very fast! I'm still a bit loopy from the medicine they gave me, which is better than the searing pain I had this morning I suppose.

So 2009 will be the Year Without a Gallbladder, how joyous!

ETA: My surgery will be January 8th at 9:15!

Thanks

I wanted to give a quick thanks to everyone, I can't even begin to say how much your kind words and thoughts meant to me and Jake. It is amazing to see how many people were willing to do so much for us. We're really truly blessed. I will try to get out and personally thank everyone, but I didn't want to forget anyone either. Thank you!

And yet another update, I'm doing fine, the nurses continued to be amazing throughout the night and this morning and I'm healing up a quickly as the doctor hoped I would. I have been put on a bit of a bed rest, so I don't think I'll be at church tomorrow, but I should be fine for my vacation, as long as I sit/lay down for most of it.

The hospital also has bi-yearly (one around Christmas, and another in spring.) memorial services for the babies there, and once I get information about it I'll post it on here.

Thank you again, I feel very lucky even in this not-so-fun time.

So my fun vacation has been over for two weeks now. I started taking my art class, I absolutely LOVE it. I got to scribble (yes scribble, like a 2 year old on a wall.) on paper and then had to find shapes and figures. Very zen and artsy farsty. I really hate my biology class, it's a huge lecture and the professor is the mayor of dullsville. Luckily I know a few people in there so my lab group is fun to work with. I have a really old russian prof in my geography class, he has a VERY thick accent and refuses to use slides or hand-outs. half my notes are like "Culture: the grouping of (? look up in book) defined by (????????)" It's very difficult to pay attention when you can understand about every other phrase. My sociology class is fairly average, lecture, slides, essays and tests. All very ho-hum.

The apartment is a BIT* of a mess right now, due to my art supplies taking up one side of the living room. Hopefully I'll muster up the courage to clean out the office/storage room and be able to have a makeshift "art studio". *= huge dang mess that is sprawling EVERYWHERE

I'm hoping to be able to update here with the phrase "I HAVE A STEADY JOB!" sometime in the next two weeks, I did have a nannying job sorta lined up, but it fell through. =(

I did go to the hospital last sunday, I was have major sharp pains in my sides that I could barely breathe, and Jake took me to the ER and the doctor first scared us with the "oh, you totally could be pregnant" and then came back a half hour later saying "oh, no just a bad UTI/kidney infection. take some pills." So I am healthy, no longer in pain and finished my antibiotics. =D