mirror

hi sweet baby!

look what you discovered this week! yourself in the mirror! you were completely mesmerized by your own reflection. i love it=) all day yesterday you were reaching out to your face and eventually you were able to pull the mirror down closer to you to get a better look;) you are precious and we love watching you explore your little hospital crib world=)

i love you sweet girl-
mommy

=)

catherine-

hi little one=) you are better. one of your favorite nurses is back today (she was there monday for your little "episode") and she said she was pretty confident you basically just had a big wad of yuck in the back of your throat and obviously that doesn't help you breathe! you poor little thing-i am so sorry you have to deal with things like that. but you've had a great few days since monday. you've been peaceful and happy, and you've even smiled at us a few times! we are loving that. not that we know exactly what is making you smile (a good dream, gas, etc...???) but it makes us feel like you are content and that makes us so happy=) you even came off fentanyl and nitric oxide today! guess what else? the BNP (brain natriuretic peptide) test this morning came back GREAT! this is the marker that indicates heart failure (from the pulmonary hypertension)... and yours was initially 2300!!! yikes! (that is when they put you back on nitric oxide) then it came down to 800, then 200, and this morning it was 75!!! they said a few days ago they'd be very happy with it below 100, and if it was below 50 they could be pretty confident that the pulmonary hypertension had resolved for the most part. they did an echo yesterday as well to check out the pulmonary hypertension-it showed that you do still have some but it's not "raging" anymore. you're still getting oral medication to help with it, so hopefully it won't give you too much trouble from here on out. they also said your lungs are looking a little more expanded, little by little, so that was great as well. keep up the good work sweet baby=)

yesterday you and i got to spend some great time together. i was pretty stingy with my "holding you" time-daddy gave me a look last night when i sat down to hold you for the third time and he hadn't yet had a turn...no worries-i did eventually share;) but you were awake for much of that time and looking pretty intently at me and i was telling you about all sorts of wonderful things. what we've been doing, what your nursery looks like, different family and friends who love you. it felt like you were listening to me and taking it all in=) thank you for that=)

so now our next big goal is to get you off of cpap and onto nasal cannula. i'm not sure how long this will take, but hopefully it can be soon. you get to try to breastfeed as soon as you are on nasal cannula-that is just an extra added bonus on top of the fact that nasal cannula means your lungs are doing better! i am so proud of you my sweet one. we love you so much and cannot get enough of you=)

mommy

catherine holding her crib

hi sweet girl=) i wanted to show you the picture of you holding on to your crib. you are so cute. i love you=)



this is just another picture we liked. we think your hands look so sweet=)

i can't wait to see you tonight. you are my heart, sweet love.

mommy

hazy

catherine-

hi lovey=) it's been a confusing couple of days my girl. you were just staying pretty much the same, no real changes, until today. today was not your best day and i'm so sad we weren't there for it (mommy hates mondays when we have to be back in richmond). i want to be there and put my hand on your sweet head and kiss the corner of your eyes-that's my favorite place to kiss you. so there are a few things that are going well-you are taking full feedings of breast milk through your little tube going from your mouth to your tummy. this has enabled them to change all of your medications (except fentanyl) to the oral route, intsead of through your iv. but you're still having a tough time withdrawing from fentanyl, your narcotic pain medicine. saturday was no fun for you. you are now on methadone to help you wean from fentanyl, so they came down pretty fast on the fentanyl thinking the methadone would prevent you from having withdrawal symptoms. not true, my love. you were crying and throwing up all day. it broke our hearts and i can't even imagine how miserable that was for you. they eventually increased your fentanyl again, and you were a pretty happy girl for a couple of days. they seemed confused by you, not sure what was causing what, which action to take next, etc. it seemed like we were at a standstill and things were just a little hazy. the staff at uva has definitely been outstanding-we have no complaints, and we know that these little periods of ups and downs are part of the whole course...but it's been no fun to watch this part of your little journey. so tonight they told me that this afternoon you went through a rough patch and they changed some things with you. they suctioned your throat and then your heart rate and oxygenation dropped very low. you started working really hard to breathe and your blood gases were not quite right. they said you just didn't look well at all and they thought for a minute that they would have to re-intubate you (and you would've been back on that ventilator that uses the tube going down your throat). instead of that, they changed your cpap to the biphasic kind that gives you a rate of breaths per minute (before you were just taking breaths on your own and the machine gave you some extra pressure to hold your alveoli open....now it's making sure you breathe a certain amount of times per minute). they thought you could be septic (infection in your blood) so they drew blood cultures from you and started you back on antibiotics (which had just gotten stopped yesterday). they have checked you a few times before for sepsis, and you've never had it, so hopefully this will be the same. my heart is so sad my sweet girl-i want to be beside you so bad for you to hold my little finger. you like holding things-yesterday i walked in to see you and you were holding on to the bar of your little crib while you slept=) it was very cute and it made me think you were gonna be a snuggler like your parents=) your nurse said you were better now-sleeping peacefully with the changes they made. they had doubled your methadone dose before they decreased your fentanyl today, and they wondered if you were just "snowed" by all the pain medication that would also sedate you, and maybe this contributed to your problems today. so they've decreased the fentanyl which scares me too. you have been getting sick every time they decrease the fentanyl, but hopefully the methadone will help this time. i pray that God would save you. i pray that He would help your daddy and me continue to trust Him and patiently pray for you. i pray that He would continue to hold you so close to Him. i love you my girl. i am so sad without you.

mommy

our little elephant girl=)

hi baby!

look at this! you are now our little elephant girl! this is called a CPAP machine (continuous pulmonary airway pressure). it looks a little more intense than the ventilators that you've been on that have gone in your mouth, but it's much better for you! this is what you graduated to once you came off the conventional ventilator, and we are so proud of you! you started this yesterday, and at first you were pretty mad about it and you were working pretty hard to get your breaths. but your blood gases have all been great and today you have calmed down! this morning ms lindsay dressed you in a pretty little pink outfit (your first outfit!) and you were wide awake for us. the cpap machine makes you blow bubbles (better known as drooling on yourself;)) and we think you are the cutest drooly baby we've ever seen.

guess what else? so you know we've already established that you look just like your daddy in female form, but we discovered something that you and i have in common! we both have very expressive faces=) it's been both a good and a bad thing for me, my girl, but mommy and daddy love that we can tell how you're feeling! it makes us so sad when you're upset-especially right now because you're hoarse from the tube touching your vocal chords and your cry doesn't make any noise-but we love when you look so content and interested in what you're doing-especially when you look at those crazy bright colored cows hanging in the mobile above your hospital bed!! ok my girl-keep up the good work. we are so proud of you=)

i love you!

mommy

a little update

hi sweet catherine!

i thought i'd give you my version of what you've been doing lately=) you went to a conventional ("regular") ventilator on your 3 week birthday! that was great news my dear! you've been doing pretty well on that-SO well, in fact, that this morning they made our day by saying the plan was to extubate tomorrow! (that means they take you off the ventilator and onto a less intense machine to help you maintain the pressures in your lungs) can you believe it! i got little tears in my eyes when they told me-it surprises us every time you take a step forward=) you had a few other changes this week as well. you went back on nitric oxide, which is a little step backwards, but that's ok. they realized your pulmonary hypertension is still pretty bad (where the blood vessels in your lungs are really tiny and it's hard to get enough blood to make them work, and in turn the right side of your heart works extra hard and it can put you into right sided heart failure...none of that is good my love). but you've been loving the nitric oxide, so it must've been a good decision=) they also started you on caffeine through your iv and a steroid inhaler through the ventilator. i guess they've been doing their job since you might get rid of that ventilator tomorrow! daddy likes to say that it's the breast milk that's been making you better;) if only that could cure your lungs...but that was another piece of good news this week! you started taking my milk through a little tube that goes through your nose into your tummy, and you've been doing great with that! it was a possible concern that your gut wouldn't wake back up like it should after surgery and after not being used for several weeks, but you're doing great! (aka: peeing and pooping like you should-it's funny how excited we now get over dirty diapers=)) we've been getting to hold you like i've wanted to for so long-with your head up by mine so i can nuzzle you with my cheeks, and i've been able to pat your little booty like i talked about while you were in me-daddy put a video of that on here so you could see it later=)

we're slowly learning to live what we've known for a long time: that this would be a long long roller-coaster of a road...that you're going to have good days and bad days, and to try not to get overly-excited about the good or too disappointed about the bad-because it's all part of it and we have to believe that we'll get to take you home as a healthy little girl before too terribly long. ("before too terribly long" could even be a few months, but in the grand scheme of things that's not so bad, is it?) i cry though when i think about the day we get to take you home, and then when we get to take you to atlanta to see all the family and friends there that love you and are rooting for you so hard...have i told you about how much you are loved? not just by us, my dear, but by people all over the country and even by people that mommy and daddy have never even met. it overwhelms me a little to even think about it. it started well before you were born, when people would read these letters to you to be kept up to date on how you were. well it's only gotten bigger my love. mommy and daddy (and you! we get mail addressed to you now! and i love it=)) get cards and letters and gifts and even anonymous checks in the mail...it's unbelievable. you got a card and a little dr. seuss book (those are mommy's favorite) in the mail last night from your friend eden who lives in texas. you also already have a proposition for a date from your friend jack who lives in georgia-he's quite the looker and he likes older women (he was born 3 days after you;)). people are loving and supporting the three of us so much and i don't know how to begin to thank them. maybe you can help me once you're bigger. needless to say, the people who love us have surrounded us in the most wonderful way since we found out you were sick, my dear, and i can't wait for you to meet them and realize how loved you are. they have paved the way for you to have such rich friendships and we want that for you so much. to know the depth of authentic love and relationships with people.

we are so thankful for you, babe, and we're so thankful for the people surrounding us in this journey with you=) i love you more than i know how to express...

mommy

Bodily fluids

Catherine,
You've had a busy few days. You recently started eating (i.e., you have tub up your nose that gravity flows pedialite or milk to your stomach) and stooling. You took a step back, needing to go on nitric oxide, which helps the vessels in your lungs relax. On the other hand, several steps forward. You are now on the regular ventilator and starting to initiate more breathing on your own. All good things. Keep at it little girl.
Dad

Katie Holds Catherine...

Hi Catherine. Your mom got to hold you yesterday. Here's the video. You were wide awake. Today, they let me hold you. You lost some water weight and your head is approaching a normal size for a baby. You were a little jittery. Every now and again, you'd tremble your arms and legs, like a shiver. Probably because you are coming of your pain medicine. We love you! We'll be away till tomorrow night, but you are in good hands.
Dad

ps-hey sweet girl! this is mommy-i wanted you to know that you're not really cross-eyed=) it just looks that way for a second because you're looking at my shirt!!! no worries my girl=) i love you so much and we are missing you while we're in richmond for today!! see you tomorrow my beautiful princess!!

happy due date!

catherine-

happy due date my sweet girl! it's funny to think that today is the day you were expected to come out and see us, but you've already been through so much in your little 2 weeks and 2 days life=) as daddy has already told you, you had surgery 2 days ago and you did great! it was a tough one-the surgeon said he didn't have much diaphragm muscle to work with so the patch took longer than expected to sew in its place. you really didn't have any major complications during surgery-there was a little period of time where your heart rate got really high, but they fixed that pretty quickly. and you lost just a little bit of blood but that got replaced after you came back to the nicu. they also said your little left lung was bigger than expected-that was great news=) (i think daddy said we would now call that your "big little lung"...) you got out of surgery around 5pm, and at 2am they got to turn off your blood pressure medicine (which is considered a "life saving" medicine so being on it boosts your critical status) so that is great news! they also started weaning your other blood pressure medicine at the same time, and since then your blood pressure has been behaving! so now what we're needing to happen is for the fluid around your lungs to go away and give the lungs more room to grow and expand and do their job-just get oxygen into your body and get co2 out of your body. they're doing better, but they've got a ways to go for sure. i'm so proud of you my sweet one=) you are so strong and brave. you know what's a little funny? well, not really funny but we smile about it because what else are we gonna do? you've gotten so puffy and swollen since surgery!!! daddy kisses your head and his lips and nose leave little indentations=) he came up to your bed the first day he saw you swollen and said "hey puffy baby!" and i thought it was cute=) so now that we're talking about your daddy, let me tell you how ridiculously excited he's been since you came successfully out of surgery! he really was walking around so giddy that afternoon and yesterday-and he keeps singing all these songs about you. here's one of my favorites:

you are my catherine-shine
my only catherine-shine
you make me happy
when skies are gray...
you'll never know catherine
how much i love you
so please don't take
my catherine-shine away

you'll learn how that song really goes one day, but i like the one with your name in it better=) he's also started doing his school work beside your little bed in the nicu. we're very lucky he gets to do that here. he just looks up every now and then, and if i'm standing next to you he'll ask me to rub your head for him=) oh guess what else??? i've never seen a man get more ridiculous over a baby opening her eyes!!! i completely understand and share his sentiment, of course, but i think it's so cute how quickly he comes if i tell him you're awake and we can see your pretty little eyes=) we love you my precious girl, and we can't get enough of you. every now and then i start feeling so impatient like i just want to have you home with us, but then i quickly remember how far we've come, and how we didn't even think we'd have you this long. so then i just thank God again for how good He's been to us, and how He's blessed us with you, my love, and how i still have no idea what He's doing but i know He's smiling sweetly up there as He looks at us and He's continuing to hold us all closely. i pray that He would breathe His breath of life in and through you, and that He would continue to heal your little body. i also pray that you would bond with Jesus during this time and He would whisper sweet stories and songs in your ear...these are simple prayers, but sometimes my head feels overwhelmed thinking about what else i should pray, and i think God is ok with that. He knows our hearts, and He knows we trust Him. i hope you can feel how much He loves you.

you are our hearts' delight my sweet one=)

mommy

A Big Surgery for a Little Girl

Catherine, today was your two week B'day. It was a big day for you. The doctors put your organs back in place and built you a new diaphragm. You didn't have much muscle there, so they put in a patch and stitched it to your ribs. The surgery took about 3.5-4 hours. The doctors said your little lung was bigger than they expected (from now on, we'll call it your big little lung). This will help in the days ahead.

Before you went in for surgery, you woke up more than ever before. You were moving around and were relaxed. You found your mom and I. You were probably thinking, "that's a little blurry." I hear your eyes aren't focusing yet. But you seemed to recognize our voices and rest when we touched you on the head and hand. I wondered when we left if that would be our last memory. It was a very very sweet one. As I left, I tried to hold onto every moment (I wanted a video camera to soak up every detail). It reminds me of the way I felt the day I married your mom. It was a beautiful day, and when I stood on the altar, I tried to memorize her gaze, her smell, and her every move. Like you were today, she was stunning.

As we waited, your mom and I got icees and sat on UVA campus. We just talked about how much fun it was to interact with you. There was an unexplainable peace as we waited. A calm in the storm, of sorts. We talked about how, if you pulled through, we would bring you to the same store one day. We would take you to the bench we sat on as we waited for you.

You still have a long road ahead. We will be here when you wake up, my love.

Daddy