Look how far we've come

Wednesday, September 10, 2008

An introduction of sorts

My name is Laura, my husbands name is Brandon, and we have two children, Collin and Lillian.

I created this blog as a public way of sharing our daughter's journey, from being born with a congenital heart defect, to open heart surgery, to recovery and follow up and facing the possibility of another surgery.

I've worked on a carepage for her since June, but I wanted to reach a bigger crowd in case someone else is going through this and needs to hear words of support and encouragement. I will start from the beginning, which means this will probably be a very long post, so bear with me.

Jun 3, 2008
Lillian Grace was born January 18, 2008, weighing 6 pounds 12 ounces. We learned 2 days later she had a VSD (a defect in the septum between her R and L ventricles). This has eventually doubled in size since her birth. She is not gaining a lot of weight, she was gaining about 0.7 ounces a day throughout April but that has dropped off again.

Jun 4, 2008
Lillian got a clean bill of health today from her pediatrician. She weighed 11lbs 8oz today, so she was up 12 ounces in 14 days! Yeah! That's right back on track with what she was gaining. She's eating on average 5 ounces of formula now as well, which is much better than the 1 or 2 she was eating... we got some "medium flow" nipples and I think that's helped, it's a bit less work for her. I just wanted to clarify, it wouldn't matter if she gained 10 pounds or nothing at all, the surgery is still a go. Some people have asked if no weight gain would postpone anything, and that's not the case. Her pediatrician wanted 12 pounds by surgery, but that was just a personal goal of his and in no way determines if we'll actually have the surgery. We will. And if she keeps gaining like this over the next week, she will be close to 12 pounds anyways! Everyone is just wanting her to be as big as possible to facilitate a speedy recovery. The bigger the better! Onward to next week and her pre-op testing. Will continue to keep everyone informed.

Jun 9, 2008
Our plan this week...

We'll come to KC on Tuesday night. We're staying at my grandparents but we have a couple stops to make first. We've gotta drop Collin off at my SIL's house, then we go to KC, and then we've gotta drop my doggy off at my best friend's house! 8:30 Wednesday morning is pre-op and then we go back to my grandpa's. Thursday morning (donno the time yet!) we go and get admitted and then we go back to surgery. Sometime on the weekend Collin will get to KC somehow and stay at my grandparent's house with us the next week. We didn't want to be away from him the whole time but we don't want him at the hospital. He'd be bored and it's probably kind of scary looking.

I think I'm going to have access to a computer in KC so I can post updates, assuming there's a place to connect to the internet in the hospital. If I can't, it'll have to wait until I get back to my grandparent's house, or I will have someone log-in to here and post for me.

Lillian was in a better mood this weekend and actually took a 3 hour nap yesterday morning! I have (finally) found a pacifier brand that she will take only when she is sleepy, and that has helped her to sleep longer. Every little thing helps for us right now! Even though we spent most of the weekend cleaning, doing laundry, and packing, it was a much less stressful weekend than I thought it would be because I got to see her pretty smile much more than normal. Please continue to keep us in your prayers, it's going to be a crazy week!

Jun 12, 2008
Change of plans. The lead cardiac surgery nurse died tuesday night. They've all worked together for 25 years and they've cancelled all cardiac surgeries for the rest of the week.

Not kidding.

I'm so pissed off I can't even see straight. I spent all morning on the phone with cardiology and spoke with our nurse and they all reassured me that the team made the right call and trust me, you WOULD NOT want them operating at this point under this kind of stress, blah blah... I've spent so much time and energy organizing this and rearranging my schedule and stressing out. I can't even believe it. I had a feeling something was going to fall through, I can't believe it actually did.

So we came back home yesterday, with the promise that I'll be rescheduled "as soon as possible, we all know Lily's case is more urgent than some of the other kids that got cancelled." But I can see this stretching into July and August and I can't wait that long. I'm not worried about Lily... she'll be ok. I'm worried about me. I can't live like this anymore.

Jun 13, 2008
It's rescheduled!

It's June 19, w/preop June 18th at 10:30am. That's next thursday!!

I told the scheduler she was my HERO. I feel 100x better. I was so afraid of a long wait, and the chips just fell into place and worked out for us.

Jun 18, 2008
We got done with preop today around 11:30, and then got some food lol. She was an angel until they drew blood. They did a physical and asked family health history questions. She checked out healthy and weighed 5.23 kilos, which is 11lbs 8oz, which means she hasn't gained any weight in 2 weeks. But oh well, I guess it's a moot point now. I forgot to ask how long she was. Then they drew blood and I left the room for that, because they needed to get a lot of it and they had to use a scalp vein. She did NOT like that at all. They tried to get a urine sample but the bag they attached to her to get it fell off haha. They did an EKG and a chest x-ray.

We have to be back at 8am and they are planning on starting around 9am. They are doing a surgery at the crack of dawn tomorrow and she is second, so our actual start time depends on how the 1st one goes. The whole process, from putting her to sleep to bringing her to ICU to recover takes about 4-5 hours. The actual surgery itself takes about 2. They will put her to sleep before they start any IV's (thank god) but there will be about 4 or 5 IV's in her, including the main line.

I can feed her formula up till 2am and glucose water or pedialyte until 6am, so that makes me happy, i was worried about having a grouchy starving baby to deal with.

I have to give her a special bath tonight with this surgical scrubby soap stuff. She'll hate it. She still hates her baths.

That is all for now. More tomorrow!

Jun 19, 2008 11:58am
Lillian is in surgery.

They just updated me to tell me that everything is going well, the lines and tubes are in place and they are starting the process. She will be on the bypass machine within the next 20 minutes. I would have updated sooner but it took a while to get wireless internet set up on the computer and connected, and I have no cell phone service in the waiting room.

Children's Mercy is really nice, and I hear they are the best. I am a wreck right now, I was fine all morning until I had to hand her over to the nurses. My mom and MIL are here, and my grandparents. My best friend Bailey and her husband are here. I will continue to update as soon as I hear something and can.

Jun 19, 2008 1:43pm
Surgery UPDATE She is done and closed up, they are moving her to the ICU and it'll be another hour or so before we can see her.

While in there, they also found a small ASD (hole between the atriums) and a PDA - a connection between the pulmonary artery and the aorta that is essential for fetal circulation, but is supposed to close shortly after birth. Hers didn't so he closed it.

I'm so glad it is over and we can begin the recovery process! It will be hard to see her hooked up to crap but it's all to ensure her health. Thank you again for all your prayers!

June 19, 2008 at 06:17 PM
We have seen her, she is in ICU and will be for a couple days. They will keep her asleep all night and try to wake her in the morning. She is hooked up to lots of stuff, i have some pictures I will be uploading. They said she is doing beautifully. Her heart is beating on its own at a steady pace around 155. She is still on a ventilator because she is so drugged up she wouldn't be able to breathe on her own. She looks peaceful. She has her breathing tube, like 5 IVs, a chest tube for drainage, pacing wires in case her heart screws up, and a catheter. All they had was size 3 diapers and they are GIANT on her, its funny. she has her pink blanket and tomorrow we'll bring her her stuffed piglet and some other home-y stuff. Not sure when they will try to feed her. I'm glad it is over and she is stable, thank you all for your continued prayers. Praise the Lord Jesus that everything went smoothly, God is great and I am so thankful. Will continue to update as I know more.


June 19, 2008 at 10:44 PM
Night one update. We are going to bed now. We have a room in the hospital's Ronald McDonald family room, it's very close to the PICU and quiet and private. Lily has continued to do well. Her blood pressure rose a bit and they had to lower the amt of dopamine she was getting. She keeps trying to wake up - they've had to double her sedative. Nothing, not even heart surgery, can keep her asleep. They are getting a bit of a kick out of her, although it is way too early for her to be awake. I told them she wasn't a good sleeper, I wasn't kidding. ;D They will definitely let her wake up tomorrow. Her chest drainage is starting to lighten up, but its still pretty red and bloody. They finally got her some diapers that fit :)

I'm definitely in need of major prayers here, though. I met another mom yesterday in pre op who's daughter was having heart surgery today to correct 4 defects. Her surgery was the same time ours was with the other surgeon, and I told her in the waiting room that I remembered her from yesterday and that I was sending her prayers and good luck. Her baby is across the hall from us and we were chilling out in Lily's room and the alarms started going off in Chloe's room. Her heart rate had dropped dramatically and everyone raced into her room and the doctor was moving her around and they wheel in this big cart of heart equipment. I lost it. I had to leave. It's like all the stress from all day that I've bottled up, I hadn't even cried yet, came out and I was shaking and nauseous and bawling. I can't get the image of this baby bouncing around on the bed out of my mind. The chaplain came by to talk to the family and me because I was so upset... the baby's grandma was a trooper and was rubbing my back and stuff, the mom had left for food or something (thank god) and missed it all. They stabilized her and there are still several doctors in her room but its not as frantic as it was before.

OMG, I just kept praying over and over. My confidence is shattered. I'm terrified that something else will happen to her, or to Lily. I kept thinking "this baby is gonna die right back there in the ICU across the hall." They donno really what caused it. It's such a slap in the face, a reminder that everything is so fragile and anything where the heart is messed with is so intricate... anything can happen at any time. Thank you all for your continued love and support. I'm so glad there is wireless internet here. I will continue to check in. Please continue to pray for Lily, and for Chloe. Love you all.

June 20, 2008 at 11:26 AM
Lily would not sleep last night for anything. The night nurse was like, I gave her enough sedative to knock ME out and she was still kicking around! She's definitely hating her breathing tube. Unfortunately it gets like this on the day they try to take it out, they have to wake her up enough so that she can breathe on her own but that makes her aware that she has it and she doesn't like it. I was in her room briefly after breakfast but I had to leave, Lily is upset right now and had tears in her eyes and it was hard for me to handle. They said she was such a fighter all night and into the morning, she was flipping up onto her side and trying to roll over and stuff. Heheh. They're having fun with her, breaking all the rules. I've brought in her stuffed doggy and a crib toy and it's hanging on her crib. Makes it feel more like home you know?

She had some heart rhythm problems overnight so they started her on a different heart med and turned on the temporary pacemaker so they are prepared if something goes wrong. But they said that she hasn't had any problems since they started the new med. I don't know anything about Chloe, the mom has been around this morning and is upset, the chaplain is still with the family and the curtains are drawn. I don't think I want to know. All the nurses can tell anyone is that she's had some setbacks. It really sucks and I am concerned about them. But everything is very overhwelming - there are some beautiful tributes to babies that didn't make it on the wall, and it's a very lovely but depressing place to be. I will feel better once the ventilator is gone and we are moving forward. I have surprised myself at how much I don't want to be with her as much as I thought I would. I am of no help right now since she is frustrated and doesn't understand and doesn't know that I am here. And the more I am here the more it wears on me. It's all very difficult to stomach sometimes. But I'll come back to this and hopefully soon I'll be able to tell you that the breathing tube is gone and we are all feeling better! Much love and hugs to you all!

June 20, 2008 at 01:18 PM
Well the breathing tube is gone! Yay! She is pretty congested and hoarse right now, poor thing her throat is sore from all that. They also took out the g-tube from her nose and the catheter. Now she has an oxygen tube in her nose. She looks better, but she is frustrated and is still upset. I keep petting her hair to calm her down. They will keep her on morphine and then later today and tomorrow start ibuprofen and oxycodone. She still has the pacemaker hooked up and cannot leave ICU until that is gone, so it will probably be sometime tomorrow before she goes to the floor. They drained a ton of mucous from her nose and throat. She sounds like a kitten when she cries. We are making slow progress, though.

On a sadder note, Chloe is not doing well. I talked to her mother... I went to give her a hug and asked her if she's hanging in there and she said no. She volunteered the information, I wasn't going to bother her. But she said that Chloe had a stroke last night and has brain damage, and they're not sure if she's going to live. My heart just breaks for her. Please continue to keep her in your prayers.

04:19 PM
Lily continues to do well. They are trying to feed her tonight, prolly as we speak. We left the hospital for a bit and are back at grandma's, I needed a shower and my grandparents are taking us to dinner. We'll go back in the early evening and I will stay all night again, if I get a room, and Brandon is going to come back to grandma's and then go get Collin tomorrow morning. She is still awake and frustrated, but they have stopped all her heart medications and removed the arterial line from her wrist - so no more blood pressure meds and one less tube! Woohoo! Her heart is holding it's own pace and her blood pressure is being checked every hour. They will keep the temporary pacemaker on in case her rhythm problems return, and they've left 3 or 4 IVs in and the main line IV in case they need to restart the heart meds. They're thinking we'll get to move to the floor tomorrow, assuming all goes well with her heart rhythm all night. So we're still progressing!

June 20, 2008 at 10:42 PM
Well, we have moved to the regular floor! A night early at that. She is down to Lasix (to make her pee), Zantac (to settle her tummy), and Oxycodone and Ibuprofen for pain. She drank a 4 ounce bottle while we were out to dinner. She is still on monitors for her heart, respiration rate, and oxygen levels. We got to the floor and she drank another bottle, took some oxycodone, and promptly threw up. So they had to move her again, change her bedding, etc... she wasn't too happy about that. Then they weren't sure how much pain meds she'd kept down, so they gave her a small dose of ibuprofen just in case. She's sort of asleep right now, not really... but she's quiet.

They took the main line out of her neck and her oxygen tube is gone, so her face and neck are tube and line free! It's a beautiful site. She has adhesive goo all over her and her hair, though, heheh. I am so glad she's doing well but was very surprised they moved her already... I'm nervous that something will go wrong because it seems to be too good to be true. I have uploaded some new pics, from our new "home" on 4th floor. Keep up the prayers and good thoughts! They are working! I do not know anything else about the other baby at this point, other than that she is still alive. I probably will never know her final outcome, since we have moved floors and I am no longer around her family. I can only hope and pray for a miracle. More later!

June 21, 2008 at 07:17 AM
Day 3 has started off pretty well I suppose. I slept in her room last night, as much as I could. The bed for me is really quite comfy but it's hard to sleep in a hospital. I slept solid from 11 to 3 and then they came to take her vitals, feed her, and give her more pain meds. At 4:15 she woke up upset, and threw up again. So after that it was downhill - they had to move her to clean her and the bed up, and they ordered some Zofran for her tummy and gave her some IV Morphine to help with pain since she's been vomiting her oral meds. So after they messed with her for an hour, she was hysterical. She finally got calmed down around 5:30, I dozed off, and they came to take her for an xray at 6. Awesome. When she got back from that she was grumpy and I found out it was because the nurse had only fed her 2 ounces! I guess she was afraid of making her puke again? So I got 2 more ounces and she sucked that down. It's been a struggle this morning, but you know what? I got to hold her. And she fell asleep in my arms and is sleeping now, and that makes it all worth it.

June 21, 2008 at 10:00 AM
Dr Simon has come in and listened to Lily... she says she sounds great! She wants an EKG done later, and really really wants to wean Lily off the morphine, that's not something I can give her when we go home, you know? She said nausea and vomiting are part of the recovery process for many babies, it's a side effect from all the anesthesia. I think she was frustrated at how medicated Lily still is, but I think the nurses were just trying to keep her comfortable. I'd rather have her medicated than in pain. I got a chance to eat some breakfast, it was cafeteria food and was all right I suppose. Looking forward to seeing Collin later, Brandon is picking him up and bringing him to my grandma's house today! Lily is still sleeping and has slept most of the morning. I'm not sure if it's a good thing or a bad thing.

June 21, 2008 at 04:49 PM
Well I don't have a ton more to say. Lily has been awake more this afternoon. I went to spend an hour or so with Collin since he's at my grandma's now. He was more interested in his trains than me! I come back and Brandon said that she pooped her pants good, which is progress since she's been constipated all morning. Going off the morphine has definitely helped her poop more, that stuff is constipating. He said she got frustrated when he moved her to change her diaper and after that she was in a bad mood. But then I got there and the nurse was there giving her more meds and Brandon said that she'd been smiling at him! But she didn't like the meds and so that went away. But I caught a little smile hehe. She has her hands wrapped around some linkadoos right now and she's dozing off. And of course, she pooped again as soon as I got into the room. She also ate 4 ounces for me just a few minutes ago. They just gave her an EKG and are giving her some oxycodone as we speak. I'm off to get some food. More later!

June 21, 2008 at 07:24 PM
Well right after I posted that last update she turned into a monster, she acted really uncomfortable and she was screaming and couldn't go to sleep. They called the doctor up to approve a dose of morphine and of course by the time the doctor got there she had calmed down. So they wouldn't write for anything. Which is fine, I guess.... I just don't want her to be in pain. But I understand their hesitation to give her any more morphine, she really needs to be off it and doing well on her other meds. She's dozy right now, she's been sleeping, I got some dinner. Brandon's best friend and his family and his girlfriend stopped by and got to see her monster fit-throwing episode, and then his SIL stopped by and just left, Lily slept the whole time she was here. So I'm just chillin, I'm pretty tired and hope that we both get some more sleep tonight. The floor nurse said that her chest tube is still draining out a pretty good amount, although it has slowed down, and that we might be in the Tuesday or Wednesday ballpark as far as going home. They need to keep her long enough for it to be safe to take her staples out.

June 22, 2008 at 08:15 AM
Last night was much better than two nights ago! She woke up around 11:30 but all I had to do was give her her pacifier back. The nurse came in around 1 and gave her the IV meds that she is still on - Lasix, Zantac, an antibiotic, and Heparin. She got some ibuprofen then and ate a little bit. She slept until about 3:45 and she got really grouchy, so the nurse gave her some oxycodone - the dose had been available since 3 am but Lily was sleeping soundly then so nobody bothered her. She was grouchy for a little bit but it was nothing like the night before last, she calmed down easier. They came to take her for her chest x-ray at 6am and she didn't fuss at all, I stayed in the room and slept. She was back in 15 minutes and went right back to sleep in her bed. They're going to try to switch to oral Lasix (which is her pee-inducer) today, and wean off the Zantac if possible - hopefully her tummy is all settled down. She has to have the antibiotic until the chest drain is removed. The heparin is to help prevent blood clots and stuff and I'm not sure what the plan is for that, I think she only gets a very small dose once a day anyways. The cardiac surgery nurse came in right after I posted this, and told me that Lily was really close to getting her chest drain out today but that there is still just a little bit too much drainage, so they are shooting for tomorrow. She said that they do send local people home on the same day that drain is removed, if they want, but since we are out of town they'll most likely keep us. She also felt around on Lily's chest and said she didn't have any staples haha. She said she'll leave with steri strips but we don't have to worry about staple removal. Funny - nobody's looked under that dressing so no one really knew. So it looks like anywhere from tomorrow to wednesday. I'm highly suspecting they'll try to send us home before wednesday. She's made very speedy progress. I am very nervous taking her home, I was expecting a much longer hospital stay and I'm still scared something will go wrong. But she's doing well, and this is a good thing I suppose!

June 22, 2008 at 03:37 PM
Lily just keeps trucking along. I hope we get the drain out tomorrow - they said she'll be more comfy after that. She gets ibuprofen every 6 hours and oxycodone as needed. It's hard sometimes to tell if she's in pain or just grumpy, when she gets upset. She's gotta be bored off her mind, I would be if I were lying in a bed hooked up to crap. She just got some more ibuprofen and if she gets grumpy I can ask for the stronger stuff, but right now she has dozed back off. I keep forgetting to ask them the name of her antibiotic.

June 23, 2008 at 09:13 AM
Lily threw up again last night out of nowhere, it was nasty, they finally gave her a sponge bath. I guess 3 times puking is the limit before they decide to clean the baby up. ::) Our night nurse was the same girl we've had since we got here to the floor, and I really like her. Unfortunately she's off tonight. Bummer.

They are pulling her chest tube as I type this. So we are tube and wire free! We will be going home tomorrow. They're going to teach us aftercare later on today. I'm thrilled this is all going to be over. Hopefully her tummy settles down. I can finally put a shirt on her. I'm starving right now and once this is over will be going for food for sure!

She did not like that tube being pulled! I saw it come out and was like OMG - it was HUGE. Gross! But she's got a little bandage over it and a little tee shirt on now and it looks so good to have her in a shirt haha. She's on her way down to x-ray, she LOVES the little wagon rides she gets down to radiology. They said she'll be so much more comfortable now that she's got that tube out. They took the dressing off her incision and she's got steri strips over it - it's scabbed but it really doesn't look that bad, it's not quite as long as I thought it was. So all is well, so far, today!

June 24, 2008 at 10:25 AM
People are coming in and out and checking her out and making sure she's ready. We have to wait on her prescriptions to be filled and discharge papers to be finished. She had a rough night, she was very restless and grouchy. I'm pretty tired. She has ate well today and pooped good this morning. She's wearing a little pink side-snap onesie. The snap things are very handy for getting her dressed and checking on her incision and stuff. Aftercare seems very simple. We're going home with a prescription for Lasix and one for Oxycodone, and I also have instructions to continue the ibuprofen every 6 hours - it also acts as an anti-inflammatory. I can give her a regular bath after her follow up on Thursday - that's 7 days after surgery so it should be safe. She has steri strips over her incision and they'll fall off in about 10 days. No lotion or cream on the incision area for a month, and I can't lift her from under her arms for at least 2 weeks. She is very sore. I have to scoop her up, like supporting her neck and bottom area. It's a little awkward.

She has three follow up appointments with people on Thursday, so Brandon is getting my dog from Bailey and going home this afternoon and I am staying with Collin and Lily in KC at my grandma's for two more days. There is no point in making the drive home and then turning around and coming back in 36 hours. Gas is ridiculous! She is in an awesome mood right now. She's kicking and scooting down the crib, and she's been chattering this morning. It's amazing how resilient babies are. She has bounced right back and is almost normal.

This whole experience has been very overwhelming - it has brought us closer and brought me closer to God. It has taken us through the darkest times, through the heartache of watching other babies suffer, to the joy of watching my baby heal and be given a chance at a normal life. Miracles really do happen, and prayers are answered every day.

June 24, 2008 at 05:30 PM
Well we are back at my grandma's. Brandon left for home b/c he has to work tomorrow. Me and the kids are staying until Lily's follow up appts on Thursday. It's going to be a long 48 hours.

It's such a relief and emotional letdown to be out of the hospital, I'm very physically and mentally exhausted and cry at the drop of a hat. I just can't even believe what we've been through in the past week. I don't think it's hit me yet, I've just been go go go. It makes sense to stay and save on gas, but I miss Brandon already and just want to be in my own bed. I do not want to go back to work. Now her care is up to me and I don't have the security blanket of the nurses. I'm scared and I'm ready for it to be over. It all happened so fast but in some ways, I feel like this has just begun.

June 25, 2008 at 01:14 PM
Lillian has been a different baby today. I don't know if it's because she's happy to be out of that hospital or if it's because she feels a ton better. But she's been smiling and kicking and reaching for her toys. She slept last night from 7:15 to 8 and then 8:30 through the night. She only woke up a couple of times for her pacifier, and then I fed her around 7am. She hasn't seemed to need her oxycodone yet today. She's only gotten fussy when she was bored. She took a 1.5 hour nap this morning and she's back asleep now. She's taken her meds for me good today, just her ibuprofen and her Lasix. I'm really thrilled that she seems so happy - hopefully it keeps up once we go home to OUR house, where she's been before and is probably bored with!

She has a small stitch below her incision where the drain was in - we get that stitch out tomorrow and then she can have normal baths. I already washed her hair, though... it reeked! And a girl can't have stinky hair! I will continue to post with her progress! She's making giant leaps forward every day!

June 26, 2008 at 06:51 PM
We are home! For real! Our home! It feels great!

Lily has been grumpier today, but I've been able to manage it with naps and ibuprofen. She hasn't needed her oxycodone. She had three follow up appts today. She had an ECHO (which they will call me with the results of) and an x-ray (which looked great!) The x-ray is to check the placement of the wires in her chestbone and to make sure there is no fluid buildup in/around her lungs. I asked about her growing bones and the wires and such, and they said that her chestbone will fuse back together down the middle and then grow around the wires! Ack! How's that for weird! They said she'll always have them and they will show up at every x-ray she ever has.

We also met with the surgery team. They removed the stitch where her chest tube was and removed the steri strips. They fall off after 5-10 days and they've been on since immediately after surgery, so 7 days, and they said her incision looks so good they could come off. She only has a small bandaid now at the top of it where a scab peeled off with the steri strip. It looks sooo much better. Some of the scabbies are gone and it looks a lot less menacing. I will definitely have to take new pics! She is napping right now but when she wakes up she'll get a good bath, they gave me some adhesive remover and if that doesn't work I'll use some baby oil. She'll hate it, but she needs it because if I don't get that adhesive off her from where her steri strips and IVs were, she'll break out. Her neck already has a rash on it from where her main line IV was.

I've been unpacking some stuff and there's laundry to do, and I need to make a Wal Mart run because we have no food or anything to drink around here! I'm drinking a Bud Light with Lime lol. I guess when it's all you have, it's a good excuse!

Some are wondering how I'M doing, and right now I'm doing surprisingly well. I'm tired and I'm still waiting for it to all hit me - that this actually happened and it's all over. I was very emotional Tuesday when we were discharged - it's a huge emotional letdown, but it's a good one. A week ago we were in PICU! It's crazy how fast she has bounced back, but they tell me it's not unusual for babies to recover fast. I met two other "heart moms" today at follow up, one of them had surgery last Tuesday and he's doing well too! I still think about and pray for Chloe every day. I'll never forget her and I only hope and pray for the best for her family. I never thought I'd be so happy to see Maryville in my life as I was today when I pulled into town. My own bed is going to feel fantastic tonight! I'll continue to post often about how she is doing - everyone's love and support has been overwhelming!

Jun 27, 2008 9:51am
Well Lily got a good bath last night and she smells better, but she didn't like it lol. She's napping right now and when she gets up I'll take her to walmart. My MIL took Collin today so I have a chance to chill out, do some cleaning and stuff, and maybe even squeeze in a nap myself.

She had a rough night, I think her schedule is just so messed up right now. She was a grouch yesterday evening so I gave her some oxycodone, and then she was up twice before 4 and then when she got up at 4 it took a long time to get her back to sleep. She was really unsettled. I gave her some more ibuprofen then. She only needed her oxycodone once yesterday, she's definitely improving pain-wise. I can't wait for her nights to get straightened out again, I'm dead tired and I felt like it was my responsibility to get her last night since I didn't have to work today and Brandon had to work at 7 am. I got spoiled having a good night time sleeper and now it's a bit messed up. It is definitely Brandon's turn tonight!

She's been fairly happy this morning. I need to get off this computer and do some laundry or something. I haven't even ate breakfast or anything because we have nothing to eat. No milk for cereal, no bread for toast... I should see if we have some eggs!

More later!

Jun 27, 2008 7:24pm
Julie from cardiology called about Lily's echo yesterday. It's good, not great but good. She said it's definitely better than before, which is good since she had surgery lol. Basically, both of Lily's ventricles were significantly enlarged because her heart was working overtime to compensate for the large VSD. She said the surgical repair looks great, there are no holes left, but that Lily's left ventricle is still somewhat enlarged. She said this is fairly common and compared it to a water balloon - if you take a tiny balloon and fill it up with water and then drain it, the ballon is not going to be the same size it was originally. She said that Lily's heart may take months to adjust to not having to work so hard and return to a normal size for her age. It shouldn't cause any problems, but she'd like us to see Dr. Simon before our originally scheduled appointment on August 19th, and that she'd check the schedules and call me next week.
She said that Lily should start to gain weight at a faster pace and that everything else looks great. So we're still making progress but of course I will always worry until everything looks perfect! It's my baby, that's my job!

Jun 30, 2008 9:12pm
Back to KC on Wednesday. Eeek! Julie called again and said Dr Simon wanted to see us this week. I knew they were going to move it up, but 2 days? Wow! This driving is killing us, it's 90 miles one way! I guess it's all for Lily's health, but holy moly. I don't know what they expect to have changed in less than a week from her last echo. I donno if they're even going to do another echo, I think Dr. Simon definitely wants to go over the results though. The more I've been around her, the more I realize she tends to freak out and be extremely proactive. Which is good, I guess, better than lazy.
Now I'm worried - I know they said that this should take care of itself but I can't help but wonder what all the rush is for?
I went back to work today Lily was pretty good for the babysitter, she got some ibuprofen at 2pm and then I gave her more at 8pm. Still gotta stick to that 6 hour schedule, until I'm told otherwise, which is possible Wednesday. I wonder if they'll put her on a different med to speed up the shrinking of her ventricle? Is there a med that does that? I wonder if they'll make me go back to the Lasix twice a day. Babysitter said that Lily was pretty happy until about 3:30 and she got really grumpy until she nodded off, right before Brandon got there.
So I suppose it was a successful first day back. Guess I'll have more to add after our appointment Wednesday.

Jul 2, 2008 6:52pm
Well our appt today went pretty well. She got the works - weighed, measured, blood pressure, EKG, and Echo. She was super throughout it all, I think it's routine for her now haha. She's gained about 8 ounces in 6 days, which Dr. Simon called "a ton." When she got weighed last week she was 11lbs 12oz with clothes and a wet diaper on, so take off a few ounces. Today she was 12lbs 2oz - we've finally broken the 12 pound mark lol. Her EKG looked good. The echo looked better.

Dr. Simon explained that they give the heart a "functioning" number to measure how it's working. Her left ventricle is still enlarged, and the number last week was lower than the normal range. Which Dr. Simon said is normal for right after surgery - she said the normal range is 60-70, and they're used to seeing heart babies get about 50-55 or 55-60 after surgeries. But, she said Lily's number last week was 40! She said Julie saw that and talked with Dr. Simon about it and that is why she called and had us come in earlier, since that is quite a bit lower than they were expecting. But she said today her number was 49, so that is better and it should continue to rise. She said "bottom line - Lily is improving." Yay!

She also said we can go off the scheduled ibuprofen and give it as needed. She's keeping her on the Lasix once a day to prevent fluid buildup and swelling during recovery. She felt around on her incision and Lily just stared at her, which Dr Simon said was good since that shows that it's not really bothering her. She said the incision looked great, if not a bit dirty ;D and I shouldn't worry about cleaning it good and getting soap and water on it. She also said she is breathing great and her bp looked good and oxygen levels were fine.

So all around good news - we go back on August 19th, about 6 weeks from now. Couldn't have asked for a better appt, really!

Jul 6, 2008 6:29pm
Hi all. Hope everyone had a fun and safe 4th of July.
Lillian was a disaster that night! She slept from 7-8 pm and then screamed and cried for over an hour. She was fed, changed, etc and had been given ibuprofen at 4, so I couldn't give her anymore. We were at my sister in law's house, cooking out and shooting off fireworks. I ended up running home with her - she screamed the whole way home. I gave her oxycodone, which she hasn't needed in a few days, and drove back to Tiffany's with her and she fell asleep. She slept while I moved her from the car to my niece's room, slept the whole time we lit off fireworks, slept when we moved her back to the car and into the house, and ended up sleeping until 9:15 am! I about had a heart attack when I woke up and realized what time it was!
Yesterday she didn't have any pain meds at all until night time and I gave her a dose of ibuprofen before bed, and she slept all night, from 8 pm to 6:45 am.

Since then she's been happy. She's ate some baby food - she LOVES bananas but I discovered they constipate her which is unfortunate, since she just eats them up and they make her grin and squeal. She also loves squash, applesauce, and peaches.

Her scar is looking better - the scabs are gone and she isn't bothered when I touch it so I've been able to clean it up good. It's been 2.5 weeks since surgery and she seems to be more comfortable, I've been able to pick her up under the arms and she doesn't seem to mind - I'm still very careful and gentle when I do it though and I use her back and hips for support still. But it's nice to feel like we are getting back to normal.

Today is my birthday so we drove to St Joseph and did some shopping, got her big brother some new shoes. She handled the trip well and is happily swinging right now.

Jul 11, 2008 8:02am
Lillian continues to do well. She is still on her Lasix once a day and ibuprofen as needed. Every day I get home from work she looks a little fatter. Her thighs are filling out and she has the beginnings of a baby fat roll haha. She vocalizes a lot now, she's always chattering, cooing, or crying :). She has found her feet and tries to chew on them. She acts like she's really teething, I keep looking for a tooth but there's nothing there.

Her incision site looks great, I need to take some new pictures and post them. I'm surprised at how good it looks for only being 3 weeks post op.

Please continue to keep Chloe's family in your prayers. I was searching for her online, because I was going crazy not knowing how that sweet baby turned out. I found her obituary. Chloe Robinson earned her angel wings at 2:09 pm, Saturday June 21st - she died at Children's Mercy. She passed away less than 24 hours after we left the ICU, she was gone before we even left the hospital and I didn't know it. My heart literally aches for them... I cannot imagine what they are going through. No one should have to lose a child.

I am once again reminded how fragile life is, and how you can be here one moment and gone the next. I am so thankful my baby girl is healthy and happy and will lead a normal life. Our prayers for Lillian truly were answered.

Jul 22, 2008 9:44pm
Her 6 month checkup with her pediatrician was today! It went really well. She's 13 lbs 8 oz! Everybody dance! She was up 1lb 6oz in 3 weeks... and 2 whole pounds exactly since surgery! That's definitely a good gaining pace. She was 25.5 inches long and 16.25 inch head circumference. That's 5-10% for weight, 25-50% for length, and 10% for her head. So we're at the bottom of the charts! Better than off them!

He listened to her heart and was like "that sounds great!" He's so funny, he doesn't see much of this kind of stuff up here. He was like a kid in med school again... "that's so cool!!" He's super impressed with what they can do and said her incision looks and feels great. I mentioned her developmental delays and he said that was normal and he wasn't going to get concerned until closer to 9 months - if she's really made no progress or very little progress by then he'd consider physical therapy or an EI specialist or something like that. The people the hospital were supposed to refer me to never called me so whatever, I'm not going to push it just yet.
I mentioned trying to wean her back to Gentlease formula and he said we could go for it if we wanted to, but if we were going to try that we really need to commit to it for about a week or so. He said that's how long it can take for a baby to really adjust to it and if we only go in halfway or keep going back and forth she's just going to keep getting an upset stomach. If she gets constipated during that week (and she very well could) he said we could try a teaspoon of caro syrup in one or two bottles a day or if that doesn't work he can give us some stuff they make... i think it's Miralax, only in a baby dose. He said we might be surprised what a week can do and she might re-adjust to it fine by then. If she doesn't, we can try again once she goes back to drinking regular strength formula. It might be something we just can't do while her formula is still being concentrated.

He wants to see us back in a month, right after her next cardiology appointment, to check her weight again and review what they think. At that point her meds and her need for extra strength formula will be re-evaluated and we'll go from there.

No shots today, we do them at the health department cause it's free that way and I need to schedule them - she has the all clear now to get back on track with those. She's a round behind, we had to postpone her 4 month shots because of surgery. So now she's playing catch up with those.

I'm sooooo glad to keep getting good news. It's such a relief and a reminder that we are truly blessed!

Aug 12, 2008 11:05am
Lily is still growing. She's no closer to rolling or sitting but yesterday I put her feet on the ground and she put some of her weight on them and moved her feet like she was walking. Her next cardiology appointment is Tuesday the 19th and then she sees her pediatrician on the 22nd. Hopefully she's gained enough weight that we can stop the 24-calorie formula recipe. I'd like the Lasix to be discontinued as well but I know they keep heart babies on that for a while sometimes. Guess we'll see!

Every day I go see her smiling face, I am reminded all over again of how lucky and blessed we are! Life is beautiful!