change of plans...

hi sweet catherine-

so your insides were not doing as well as your outsides were leading us to believe...monday they did another echo and found that your pulmonary hypertension was still pretty severe and the right side of your heart was a litle hypertrophied. however, you still appeared to be tolerating the nasal cannula really well, so tuesday they decided to put you only on nasal cannula, without going back and forth to cpap. but tuesday night, after about 14 hours on nasal cannula, you started to drop your sats (you couldn't keep your body oxygenated well) and they put you back on cpap. then throughout the night you were still struggling to breathe and they increased the pressure you were receiving from it. so wednesday they did some more tests-found that your CO2 in your was still high (meaning you couldn't ventilate very well) and that the BNP (brain natriuretic peptide-indicates heart failure) was almost 1800 (normal is around 50=(). so this meant that basically you did a great job of pushing through some of the stuff that was harder for you, but your body was getting to the point that it couldn't do it anymore. so you were working harder to breathe, your CO2 was increasing, your pulmonary hypertension was high again, and the right side of your heart was starting to fail as a result of it. and all of these things work together as a vicious cycle and make each other worse. so they started talking about putting you back on the ventilator to see if that helped get the CO2 off, decrease your work of breathing, and therefore hopefully help the pulmonary hypertension and help your heart. then if the ventilator did help those things, we would probably move to getting you a trach in the next week or two for long-term ventilation. remember how mommy was so scared of a trach? the nurses and respiratory therapists sat down with me throughout that day and talked all about other sweet children who have had trachs and have done so well and thrived and run around playing like it's nothing=) point being: i feel much better about you having a trach and i'm kind of to the point where i just want to do it and get on with you getting used to it and us learning how to take care of you with it. you would get to go home with it (the doctor said it would be "from weeks to months" that you would need it) and breastfeed with it and do all kinds of normal baby things. so i'm ready=) i hope you are too sweet . they did end up intubating you again yesterday and so far the ventilator and nitric oxide is helping you a lot. the gases are much better, you are obviously not working so hard to breathe, the echo of your heart showed decreased pressures meaning the pulmonary hypertension is getting a little better, etc...so it is helping. and that means we are likely to get you a trach pretty soon sweet . we can do it. yesterday you were a little grumpy about the tube being down your throat and the nurses and doctors were trying very hard to find a good balance of sedation medicine for you. i think they've found it because today you've been a very happy -taking naps here and there and while you're awake you've just been looking at me and even smiling a little around that little tube=) you've gotten a little puffy again-you got a transfusion yesterday and a lot of iv fluids so that makes sense. you are still the cutest baby i've ever seen=) your oxygen saturation monitor is on your hand and you keep holding that hand in front of your face because it has a little red light on it that you like to look at. it's very cute=) it's great for mommy to see you still exploring your little world even when you have a machine breathing for you. it's crazy too. yesterday you and i were both sitting there crying while we looked at each other-you because you were grumpy about the tube i'm sure, and me because it's so sad to have seen you breastfeeding and doing all sorts of normal baby things last week and then now you're back on a ventilator. and i seeing you upset. but we were being buddies, you and me. keeping each other company and telling each other it would be ok. that's what i imagined you were telling me, at least=)

so this obviously pushes everything back a little. you will clearly not be home in a few weeks. you will also not be transferred to chippenham next week like we originally thought. it will take maybe another month to get you there-they just want to get a good handle on what's going on with you and what the best plan is to help you. and mommy has to go back to work. i will miss you so much sweet . i'm starting to cry a little just thinking about it as i type. but we'll make it, won't we=) i love you so much sweet baby-you are my favorite little person to play with and i'll go back in the nicu now to rub your sweet head=)

mommy

ps-daddy has been missing you so much this week-he's been sick and has made himself stay away from the nicu. he'll be back soon to sing to you some more and call you buddy=)

baby shower

hi sweet catherine=)

our church threw a baby shower for you today. daddy and i went in your place since you're still in the hospital=) these people are so incredible-i can't wait for you to meet them. they love you so much and are so invested in your amazing little life-they pray for you fervently and passionately-they are so excited about the way God is working in and through you. you are very special to them. i loved them already, but that makes me love them even more. daddy and i got to share what's been on our hearts lately-what God has been teaching us during this little journey with you-how to pray for all three of us better. they allow us to be authentic with them and we appreciate that. mommy gains so much from people letting me be vulnerable with them-that might be kind of weird, i'm not sure, but that's how i've always been. the strange thing is that, i haven't been able to be at church many sundays over the last year because of work and school, so i feel like i don't know them nearly as well as i want to. but they know us=) and i'm so thankful for that. they have dedicated themselves to intercede on our behalf faithfully and all the way through to meeting you face to face one sunday=) i can't wait for the three of us to get to know all of them better. they gave you lots of pretty and fun things. you will have fun playing with your new toys, and mommy will have fun playing dress up with you in all the new pink and frilly outfits=) there is a wonderful something about the body of Christ that strengthens us and refreshes us-the three of us (you, me, and daddy) are lucky to have them. they are waiting to welcome you with open arms=)

so guess what??? =)=)=) i came in a little early to the hospital this morning to see you before the shower and the doctors were crowded around your bed. this is called "rounds". that means they're just discussing you and what's going on with you, what the plan is, etc...and when i walked up your nurse was holding you (at which point you saw me and kept watching me stand there-i loved it even though i'm not really sure if you can actually see that far yet;)) and she had a big smile on her face. so i looked at the doctor and she basically told me that you were surprising them with how well you're doing-specifically with nasal cannula trials (they get longer every day) and with breastfeeding. and she said that they were still talking to the insurance company and with chippenham to see if it would work out to transfer you, BUT that if you continued on this trajectory that in 10 days they'd be talking about sending you home instead of just to a hospital closer to home. WHAT!!!!! we couldn't believe it. i just was trying not to cry as she told me all this and i kept looking at you with your bright eyes wide awake and touching your cheek and listening to her and trying to believe it all-it felt a little like a dream. of course there could be setbacks that change this plan, but we just pray against those and that you will continue to improve every day. so anyway you would go home on a nasal cannula with a little oxygen tank and an oxygen saturation monitor. we can handle that, can't we??? i can't even imagine really having you in your little crib. so they left and i started feeding you and looking out the window, and i started remembering a conversation i had with one of your nurses a week or two ago. we were talking about praying specifically and she was saying how she prays specifically for your lung function-your alveoli-and for your pulmonary hypertension to heal. i was talking about how i still pray a "bold" prayer-you know-one of those that would seriously take an absolute miracle to happen-that you would be able to come home by the time i had to go back to work even though at the time it looked absolutely nothing like that could possibly happen. i just wanted to keep praying it. and sitting there feeding you looking out the window i suddenly realized that God might be answering that prayer. so then i started crying a little=) He is so sweet to us. even if that doesn't happen sweet -even if there is another setback or two and you're here longer than we hope-He is still good. i've been a little bothered lately by how i feel "close" to God when things are going well with you-i feel happy with Him and warm and fuzzy and cozy. but when you get septic or have a bad day, i feel cold with Him and further away and mad. i that. what is that anyway? He doesn't change at all when you have good or bad days. i feel like those things indicate a very immature relationship with Him, and i don't want that. i suppose it's fairly human to feel like that sometimes. i am so thankful that i've been able to at least acknowledge that He's still ultimately the best good we could ever have or dream of and that He is taking such good care of us-and that He loves you even more than daddy or i ever will. but i'm a little embarassed sometimes at how my "feelings" for Him wax and wane according to what kind of day you're having. i hope that changes. or maybe it's ok for it not to change. i don't know=) mommy is quite a "feely" person-very driven by emotions-(again-not a great trait to have!) but i'm thinking that has a lot to do with this tug-of-war with God lately. i feel Him smiling on us and i'm so thankful for that. He smiles at me even when i am boggly in my head. i can't wait for Him to show these things to you sweet love=)

when we got back to you tonight i couldn't quit staring at you. you look so peaceful in your little crib there with your jungle buddies flying around in a circle above your head to the tune of bach or beethoven (whatever the mobile is playing at the time...) you're absolutely beautiful and i just sat there in the chair taking you in. you are our heart pretty baby=)

i love you-

mommy

fixed video

2 months=)

catherine-

happy 2 month birthday sweet girl! you now weigh 9 pounds and 5 ounces. growing and growing, just like you should=) today was one of the sweetest days i've had with you so far. we hung out with you all day and you were awake and alert and content for almost all of it! you took your little naps here and there, but for the most part you just looked at us and we talked to you and told you all about our day and what's been going on around you in the nicu. daddy even carried you over to the window next to your bed and showed you what it looks like outside. it was beautiful out there with the leaves changing colors. it's what i call a "katie day" which means the sky was bright blue with absolutely no clouds. we'll have fun playing together on those kinds of days. we'll also have fun stomping in big puddles when it rains=) lately you've been smiling a lot in your sleep, and we have fun speculating what's making you do that...angel kisses, sweet dreams...all of your nurses have different opinions=) but guess what you did today! it was the first time you smiled at me on purpose while you were awake and alert and looking back at me! i loved it. i started crying a little. it was the most precious moment. we took lots of pictures of you to celebrate your 2 month birthday. i got some developed and brought them back to the hospital to show your nurses and they all loved them so much. they smiled and laughed and said "aaaaaw" a lot when they were looking at the pictures. so many people comment on your facial expressions-you make a lot of them and they make us so happy!!! you put one eyebrow up and stare intently at whoever is talking to you. or sometimes you look so concerned about something or another (i wish you could tell us!). and sometimes you just wiggle your arms and legs around and look up at us while we're talking to you with bright happy eyes and your mouth open like you want to talk back so bad! i can't wait till you can and you can tell us all about everything.

you started nasal cannula trials again a few days ago. you've been doing great sweet girl=) you've been slowly getting back into breastfeeding and improving little by little each day. we've been talking to your doctors about you being transferred back to chippenham (the hospital where you were born and where mommy works) because mommy has to go back to work full time in a few weeks. i can't have you here in charlottesville and me there in richmond half the week! that would be no good for either of us. but mommy's a little nervous about sending you back. i am fully confident you will get great care-the nicu nurses and doctors there are fantastic and it will obviously be so great for you to be so close while i'm at work (and at home-we live 7 minutes away from the hospital!). but here's a secret-mommy's a little anxious by nature and i just get nervous about moving you and changing things and people not knowing all your little quirks. we will also miss all our new friends at uva, won't we? no worries sweet one-we'll come back and visit. and i think you will like it at chippenham. these people have loved you for a while now-some before you even came out of my tummy, and sometimes they ask me when you're coming back to them=) you can do it my sweet girl. it's just a little change, and you are tough and resilient and i know you'll be just fine.

here are some of the pictures we took. you get more and more beautiful each day. we sit there and stare at you while you're sleeping and we just can't get enough of you. you are our joy precious girl=)

i love you-

mommy

sweet catherine=)

inquisitive...this is what you do with your eyebrow...you look skeptical=)

sleepy girl

this one was taken a few days ago...you were smiling in your sleep=) i love it.

cutie

catherine-

hi sweet girl=) look at this! you are so precious. this was a little over a week ago when you were on nasal cannula trials. we love how curious you are=) you look so intently at us when we talk to you-like you want so badly to understand us. one day=) you're doing better sweet baby. yesterday morning they were able to take you off the ventilator and put you back on cpap. this time they let me hold you while they extubated and that kept you calm. they also had given you steroids to help decrease the swelling in your throat. all those things worked well my girl=)

you've done great back on cpap. great blood gases and breathing easily. sometimes you get super angry-it makes your daddy laugh a little-he doesn't like that you're upset, but he does like that you're showing your little temper=) it makes me sad sweet girl, to see you like that. i like that you're feisty-that's probably helping you out a little right now-but it doesn't seem like you. what seems like you is when you've got those big beautiful eyes open and you're looking all around. the truth is probably that both of those are you, but i just feel better when you're happy...either way, you are the most amazing thing i've ever known=) anyway, they worry a little when you get so upset because sometimes you get a little frantic and it's hard for you to catch your breath. we wonder if that's part of what happened last friday when they tried to extubate but were unsuccessful. it could be part of withdrawal from all the narcotic drugs you were on, or it could be because you don't feel good, or it could be because you're almost 2 months old and want to be entertained=) or it just could be because you're tired of everybody messing with you. hopefully not too much longer my girl, and we can bring you home with us. i'm so sorry last week was a rough one for you-but this one is looking up and hopefully we can keep you moving in the right direction=) i love you sweet baby-i can't wait to hold you again and kiss those warm cheeks and the corners of your pretty eyes=)

mommy

......

catherine-

hi sweet baby. this has not been your best week. they found out you became septic, and that's what caused you to quit breathing. you were just so sick. sepsis means you have an infection in your blood. yours specifically liked to eat up your platelets and basically just made you feel so horrible that you decided you didn't feel like breathing anymore. the sepsis pretty quickly responded to antibiotics, especially now that they know what exact organism was growing in there and they've picked an even better antibiotic to fight it. they have been weaning you on your ventilator for the past few days and planned to extubate you today. you were actually looking like you really wanted it out-playing with it with your tongue and pulling at the tape (probably on accident) all the time. but when they took it out this morning you started working really really hard to breathe and no matter what they tried, they couldn't calm you down. therefore, they put you back on the ventilator. your x-ray this morning actually looked pretty good, so i'm not sure what exactly is making you need the ventilator so bad. but you do need it. they'll try again maybe next week...

we talked to the doctor a couple days ago about the possibilities for you. he said that once you got back on cpap, if you still needed that pressure for your lungs after another month or so they would seriously consider giving you a tracheotomy and sending you home with that for a while (a while=6 months or a year or 18 months-whatever you need). this means that they would put a little hole through your neck into your trachea and deliver the cpap through that. i hate imagining this for you. it's so scary. daddy says you'll want us to try as hard as we can to keep this from happening because you might hate the big scar it would leave on your neck when you're older=) but we know that if that's what's best for you, we'll all be thankful we did it one day, including you-scar and all=) the doctor said that's definitely not a decision they're making right now, but he just wanted us to know there was a fairly strong chance you might need it. he said the reason for it was because once babies get to a certain age, they need more developmental stimulation that they just can't get in the hospital. if they can send you home with a trach, you'll get the positive pressure you need but also be able to grow and learn like a normal sweet baby would. it's just terrifying to think of taking you home with one of those. we hate imagining you having a hole cut in your throat. we are so sad you might have to have this. we're still praying it doesn't happen=)

so.....all of this said.....i'm finally getting angry with God. remember how mommy talked to you about that earlier? how i was afraid to be mad at Him? i hate every second of it, but i am mad at Him. i also know it makes no sense to be mad at Him, but that's how i feel. i just don't understand at all why this is happening the way it is. but i also know i should be (and am) so thankful for having you at all. i know i've always said i'm typically ok with not understanding why He does things, but looking at you and imagining how miserable you are makes this a whole different ball game. why do you have to go through this? i hate it. i am so sad for you. i also think i'm just really anxious and impatient for you to come home because mommy has to go back to work full time in november. i can't imagine not getting to see you every day. it seems like that shouldn't even be an option-going back to work full time and not seeing you, but mommy and daddy don't know what else to do. so that probably is making it worse-me getting mad at God for not speeding up your recovery. i know He's still good, and i tell Him so. i tell Him i know He loves us so much and i know He isn't neglecting us or choosing to harm us. i tell Him i love Him and i thank Him so much for you and the miracle of your little life so far. but i also tell Him that i'm mad at Him. it's a little bit therapeutic to be able to talk to Him about that. He's very sweet the way He stays constant through all of my ranting at Him. i'm so thankful He's still there and always will be. i'm so thankful He's holding you the way He is. i know in my head that He's doing that-holding you close, but i just don't feel it and i can't see it tangibly, so my heart feels cold a little bit when it comes to Him. but even writing this is helping mommy a little bit. i thank Him for listening to me. and i thank you too=) i love you sweet baby-we are right by your side.

mommy

ps-mommy and daddy's car got broken into last night-i kind of tell you this because it makes us laugh a little bit. there's a huge cinder block with glass shattered everywhere across our front seat. i should take a picture and show you one day=)

going backwards

catherine-

hey sweet baby. so apparently you weren't quite ready for the nasal cannula...you've been mostly back on cpap for the past 2 days and then they put you back on a ventilator tonight. daddy and i had just gotten in bed when they called to tell us that after we left, you suddenly quit breathing and wouldn't respond to stimulation, so they re-intubated you. they're running all kinds of tests now to see if they can figure out why this happened. i can't begin to say how sorry i am that you have to go through all of this. it's 12:40am and i couldn't sleep after they called me so i came back to the hospital to see you, but the truth is that i'm scared to to come in and see you with a tube down your throat again. but as soon as they're done running some of their tests i'll come in and give you kisses and hold your hand and tell you that i'm here with you and that you're not alone. i tell myself that'll make you feel better but i'm sure it's more for me than you, isn't it ? i am so sad, and so scared. i want you to be comfortable and happy, but i can't imagine that's possible with everything you're having to do. i don't really know what else to say, my . i love you so much and want to cradle you up in my arms and hold your cheek scrunched up next to mine and kiss it a million times.

mommy

Sweet Catherine, yeah, yeah, yeah...

Hey Catherine, they've been letting you "trial" on the nasal cannula. This is the graduate school of ventilators. You, your mom, and I have that it common. You seem to like the cannula better than the CPAP, so if you keep doing well, they'll let you keep it. Good work, we are so proud of you. We like getting to see your face so clearly. Your mom and I are trying to decide who you look like:), now that we can see your whole face.
Dad



hi sweet babe-this is mommy=) just wanted you to know i think you still look a lot like your daddy. it's not quite as obvious as it used to be-your eyes are big like mine and your face is still expressive like me, but so far dad is winning out (but that means you look like your aunt nikki so no complaints here) =) i also wanted to tell you that you're breastfeeding like a champ. you're such a rock star. we were able to start trying when you had your first trial on nasal cannula a few nights ago, and the third time we tried you latched on and went to town, acting like you didn't spend your first month and a half of life without doing it! i'm so proud of you my sweet girl. they let you spend more time on nasal cannula each day, and once you get up to a certain duration, they just let you stay on it and never wear that yucky cpap mask again! (you hate it so much-you get very grumpy when you have to put it back on) it's been fun watching you each day and learning more of your little quirks, and coming up with our explanation for why you get fussy at a certain time of the day, or at a certain time in your feeds, or routine, etc...it's quite complex with all the little issues you have going on-fentanyl withdrawal (you're still having some trouble with that, but they say it takes at least as long to get off it as you were on it), a potentially small tummy, intestines possibly not in the exact place they were meant to be...but you can do it...you amaze me even more every day-i love you=)

ps-the name of this post is another song that daddy sings to you-he sings the song "sweet caroline-yeah yeah yeah-good times never seem so good" but he sings cather-ine to rhyme with caroline. he's goofy. i think you will like him like that-i do=)