Quick note

Sorry for such a short post - not much to say about today. Haley had another pneumothorax today but luckily they were still monitoring her frequently with x-rays so it didn't get as far and she didn't 'crash' this time. For now they are taking x-rays every 6 hours. Also, they realized one chest tube wasn't draining at all because it had clotted off, and the other one they decided was too far up and that's why it kept blocking on and off. So they managed to get the clot out of the one and they pulled the other one out a little further and hopefully they will both do their jobs and actually drain now. She's been peeing a lot again today and they actually had to give her a little fluid because she was losing too much and her blood pressure and oxygen levels were tanking. But she responded well to the fluids and has been relatively stable this evening. Keep it up Haley-bug, we know you can do it!

We love her to itty-bitty bits! With the fluid loss it's great to actually be able to see our Haley's sweet little face again. I can't wait till she can open her eyes and see our faces again, too.

Never a boring day...

Well, as I was starting to fear last night, we'd had 2 good nights in a row so last night and today were our 'step back'. Last night they finally gave Haley some more packed red blood cells to get her hemoglobin up, it was low from all the repeated blood draws, etc. With the increased hemoglobin, her low saturations began to climb up to a more normal level and steadied out for the early morning. After two attempts, one last night and one this morning, they finally got her endotracheal tube placed properly again.

Once again this afternoon her saturations started to drift down. The nurse decided to suction her endotracheal tube, which they have to do regularly anyway and which they thought might be causing the lower sats. (Lately they've been running high 60's, low 70's, and they had drifted down into the high 50's.) After taking her off the oscillator to suction her, her sats started to plummet, reaching as low as 9% at one point. They tell me this wasn't technically a code because her heart never stopped, her blood pressure remained good, and amazingly her cerebral oxygenation remained good. But the room rapidly filled with people, lots of drugs were given, and they realized that she had a pneumothorax (air in her chest outside of her lungs) due to the failure of her chest tube to drain - yet again! After pulling off ~200 ml of air, they ordered an emergency echo and an emergency chest x-ray. Basically, the air in her chest outside of her lung was squashing her lung and preventing it from inflating properly. So though her heart was pumping blood to her lungs, there was no air there for the blood to pick up. It took awhile for her saturations to respond even after they removed the air from her chest, but finally it got back up to the 70's. Now, at my insistence, they are manually checking her chest tube to try to insure that it is draining properly every 4 hours. Yet another terrifying day, I'm not sure I can take much more of this...

She has been doing okay since that event earlier today, though her saturations are still a little drifty when they move her around or mess with her. On a good note, she has been urinating a lot! She is actually -300 ml for the day which is great, and the day's not over! Lets hope she can keep it up and doesn't end up needing fluids or anything to take away our little bit of progress. The other good news for today is that she hadn't had anymore seizures for 48 hours so she got to get the EEG off her head! It's so nice to be able to keep a hand on her head again, and it was good because the leads were hard on her skin. And that leads me to another con for the day, she is having a lot of skin sensitivity to all the tape and bandages all over her and even though they'd try to place skin protective barriers for her she still has developed some ulcerated areas. Now they're trying silver impregnated foam, which is antimicrobial as well, between the tape and her skin. Hopefully that will do the trick.

Now we are praying for a boring night, following our much too exciting day. I was feeling very doom and gloom after this second episode, but the doctors all say they are still very optimistic. I pray they are right. I know we will likely be here for a month or months, but I can't wait for the day when we finally 'turn the corner' and get to have a steady climb towards getting better instead of this back and forth business. We just want our Haley-bug back.

Tuesday

I know this is sort of a random picture, but I will tell you why I had to post it. It's from the night before we left Logan for pre-admission testing (Wednesday night), and it was the first time ever that after feeding Haley-bug and while we were rocking together that she kept reaching up with her hand and touching my face. She just kept touching my chin and my cheek and would hold her hand there. (Unless Grandma tried to take our picture, so Grandma had to hide behind Haley-bug and I had to not look at Grandma so Haley wouldn't get suspicious...) It was so wonderful and adorable, I just want that little hand to reach up and touch my face again.

I unintentionally lied in last night's blog when I said that Bug hadn't had anymore seizures since starting the Keppra. It turned out that she had had two more small seizures during the day, one around 10 am and one around 5 pm. So they increased her dose of Keppra slightly, and they weren't surprised because they start all babies at ~20 mg/kg but most end up needing to be on ~40 mg/kg. They just want to find the lowest effective dose so they work their way up gradually. But after increasing her dose last night, she has now not had any more seizures today, so lets hope she can keep that up!

Last night, post-blog, they also did Haley's brain ultrasound. It did show multiple, punctate (small), areas of either ischemia or bleeding in the outermost edges of mostly the back half of Haley's brain. These are basically 'mini-strokes' and are not too uncommon after being on the heart and lung machine for so long, and after arresting. They can't tell for sure with ultrasound whether they are bleeds or ischemic events, so they won't start her on a blood thinner until they can get a CT or MRI that will give them a better idea. Obviously they have no idea what these mini-strokes will mean in terms of Haley's long term prognosis. Ultrasound is the lowest of the low for image quality of the brain and they can't get as good of an idea exactly where in the periphery they are. Also, even if they knew exactly, they wouldn't be able to say exactly what deficits there might be. They like to remind us frequently that babies' brains have a lot of 'plasticity' and aren't set in their ways yet, meaning that her brain may be able to compensate for damage to one area more easily than an adult brain ever could. Once again, we will just have to wait and see. But they are encouraged by the fact that they are all out in the periphery so far, which is a less critical and densely packed area than in the center of the brain. Wait and see, wait and see...

Today her blood pressure has been rather touchy again, which they said may persist as long as she's so fluid overloaded. It seemed to level out a little bit today, but it is being a bit troublesome again as I type this. Once again, we'll see.

Earlier today she was doing so well on the Oscillator and they'd been able to put its' settings low enough that they thought it was worth a try on the regular Vent. Her oxygenation levels were GREAT after they switched her over, and I was so optimistic, but the blood gases they ran each hour after switching her showed that she was getting more and more acidotic and that her CO2 was climbing (not good). So after 2 hours they had to put her back on the oscillator. They said really they were fine with that and usually they try switching to the Vent a few times before they're finally successful. She just needs to get more of that fluid off because right now she is swollen that her body wall is just too stiff for the regular Vent. She'd been doing really well back on the same low setting on the Oscillator all day until just the past hour or so. Then her stats started dropping along with her blood gases, and they weren't improving even when they bumped up the oscillator. They just took a chest x-ray and it showed the problem: her endotracheal tube had moved down into one of main bronchi instead of being in the corina (the junction of the right and left main bronchi) like it was supposed to be. Basically, only one of her lungs is getting air/oscillated! So now we are waiting on Respiratory therapy to come and readjust her ET tube, and hopefully that will do the trick. Every little bump is just so nerve wracking, and I feel like I'm perpetually holding my breath...

On a good note, they placed a Nasal-Jejunal tube today (a feeding tube that goes from your nose, bypasses your stomach, and places food right into the small intestine) and have been feeding her formula since around noon today! She seems to be tolerating it so far, and hopefully that means we'll have some dirty diapers again soonish! Her urine output has been good today too, and that's just what we need to help get some of this fluid off.

We did have a fun distraction this evening: Katy K, Susie K, and Sydney all came to visit Miss Haley-bug, and then they took us out to dinner at North Star Cafe - YUM! Unfortunately Haley is really only into formula and she declined their offer to join us... ;)

Alright, that's all for now. Things have gotten busy around her suddenly and I hope they quiet down soon. What I wouldn't give for a boring night.

Monday #1

Well, this morning was the first time during this hospital stay that I've heard our night nurse say to our morning nurse that Haley had a good night! She is still very, very, very sick (as they do like to make sure we realize even when they are giving us little bits of good news), but at least we took some baby steps in the right direction. We will take what we can get and be very grateful for it! She managed to stay off her epinephrine and vasopressin all night long and really all day today so far and her blood pressure was pretty stable all night and this morning! After rounds this morning they decided to try to wean her of her dopamine too, and that wasn't quite as successful as now her blood pressure has been all over the place again this afternoon and early evening. They had her off it for a little while but I know they have started her back on it. She keeps having large fluctuations with minor changes so they are having a little trouble figuring out where she needs to be, but hopefully they will get there soon.

A little bit of her swelling has definitely gone down and her color is looking much better in my opinion! She still has a Buddha head, don't get me wrong, but now her nose is the most prominent feature on her face again and they can actually get her eyelids open to check her pupils. Her pupils are very constricted which means she's well sedated and makes me happy. This also means that they can't tell if they respond to light or not because they're already too small to see if they constrict farther. But at least they are not fixed and dilated which would definitely indicate blindness or brain damage to a certain area of the brain. Also, though she is so swollen her blood volume is actually low. When they did an echo to check on her heart today it actually showed that the heart is underfilling, because while she has a liter too much fluid in her body, most of it is in her tissues and not in her blood stream. This presents a bit of a conundrum because they want to optimize her blood volume but if they give her more fluids it will probably just go into her tissues too and make her swelling worse. So it is a thin line they walk, and they try to help by giving her something called albumin which is a fluid with lots of large 'particles' in it to help draw the fluid out of the tissues and into the blood stream to equilibrate the osmotic pressure. This is a protein you have in your body naturally and hers has been low, so it's hopefully killing two birds with one stone. We'll see!

On the note of having a liter too much fluid in Haley's body, the doctor said that they can't really ask babies to urinate out more than a couple hundred milliliters of fluid a day because it's just too stressful for them otherwise, so we can expect it to take at LEAST 5 more days for her to get rid of all this excess fluid. Getting rid of the fluid is really the crucial step. The fluid is what is making her lungs soaked and making her need the oscillator and then hopefully we will step down to the ventilator. It's also what is putting pressure on her brain. So we just pray that we will continue to make forward progress over the next 5 days, though the doctors and nurses did warn us that this is often a 2 steps forward, 1 step back process.

The doctors have told us to expect to be here for a long haul, which really I guess was pretty obvious but now they have confirmed my suspicions. I'm sure we will be here at least a month, and who knows if it will be that soon. But so long as we make it home with a happy, healthy, smiley Haley-bug eventually.

The neurologists never did come and talk to us today, surprise, surprise. After Haley's seizures last night they have decided to continue to monitor her with the EEG for longer, which makes me happy. She hasn't had any more seizures since being on the Keppra (*knock on wood*) but I'm glad they're watching for them. There is a new intensivist (ICU specialist) on for the week and he was really helpful to talk to this morning. He said there is certainly reason to hope that Haley-bug may make a full recovery and return to herself. Of course the other alternative is also equally possible, but he was encouraging and said that he is optimistic that she will recover. He did say that any time you have an arrest, there is usually at least a small amount of permanent brain damage, but it could be something so minor as to have her one hand be slightly weaker than the other. We can live with something like that! He also said that the EEG, and even an MRI or CT are really not good prognosticators in babies and that the really only thing we can do is wait and see once she wakes up. So at least that makes me quit being antsy for a CT or MRI because it doesn't seem like it will help us much anyway! I am gradually trying to make myself relax and get into this 'wait and see' mind set. They were supposed to do a brain ultrasound today, though that wouldn't rule out anything it could rule in something, but when we'd left the hospital at around 6 pm it hadn't happened so I suspect it won't today. They do want to look for the possibility of any ongoing bleeding because if there is then they won't start her on a blood thinner like they would like to otherwise.

We found out where in the hospital there is a large supply of Children's books, so we went and raided it and now have lots of reading material for Bug since I forgot her bag of books at home. Tomorrow I think we are going to make a CD recording of ourselves (a service they have at the hospital) to be played for her while we're not there. She does seem to do better with us there, so hopefully this will help when other wonderful, wonderful people are taking shifts (THANK YOU - Grandma, Grandpoppy, and Aunt Kelly!)

She is still our smoochable little Haley-Bug and those nurses are lucky the crib rails are just a bit too high or I might never stop kissing her...

Sunday

More of the same for Haley-bug today. I will start with the cons and finish with the pros.

Cons: (1) This evening Haley had 3 seizure like events on her EEG, the longest one lasted 4 minutes. Thankfully they were not clustered (worse) but were spread out (better). They have now started her on an anti-epileptic called Kepra and she hasn't had any of these events since. They said that while these seizures are a big deal and we would prefer to not have any seizures, they are also somewhat to be expected and that's why they ordered the EEG. Basically, they're not surprised. They also said that most likely she will stay on anti-seizure medication relatively long term now. (She will go home on it, and who knows when they might stop it?) (2) Her blood pressure is still all over the place. One minute it's high, the next minute it's low. They keep having to turn her various meds on and off, adjusting them, etc. They said this is also to be expected after surgery and after arresting. It's definitely keeping the nurses hopping. (3) No news at all from the neurologists today, besides the seizure activity. While this isn't actually something bad that's happened, its frustrating and stressful. A lot of 'hurry up and wait'-ing. They've pretty much gone on strike about making any comments about anything other than seizure activity. Tomorrow around 1 pm she will have completed her 48 hours of EEG, so we are hoping someone will finally come talk to us then, even if it's just to say they think they need to continue to monitor her. It's frustrating to get so little feed back on something that is so important. (4) Her platelets were better this morning but then randomly became low again. She had yet another platelet transfusion and hopefully they'll be able to keep themselves up soon.

Pros: (1) They took 2 sets of lung x-rays today, and this afternoon's showed improvement from this morning's! Clearly they still aren't good, but they're better. She still has some areas with small amounts of fluid on both sides of her chest, but they're not too bad and the chest drains appear to be working fine. There have been areas of air in her chest (not in her lungs which are obviously supposed to have air in them, but outside of her lungs) and those appear smaller! (2) She has had some times today where she has been off her epinephrine, and in fact she has been off it for a couple of hours as I write this. We might go back on it, but it's great that she is getting a break from it for a little bit. It's more of a 'rescue drug' and I pray it means we're making progress in the right direction if she doesn't need it constantly now. (3) Her swelling has gone down a little bit this evening - she's urinating more - and you can actually see a little bit of her chin peeking out! Her eyelids look a little less swollen and they can actually open them now to check her pupils. Coming along with this, her color looks a little better too. She's not quite so violet anymore. (4) Finally, and what is thrilling to me, I feel like her stats get better and her numbers respond when we hold her hand and talk to her. It may just be my imagination, but I think our little Bug is glad to have us here, helping her the only way we can by loving her. And of course, she loves it when we tell her she's pretty. ;)

P.S. Happy Birthday Katy K, we love you! Thank you so much for spending your birthday hanging out in our CICU room with us, you're the best.

Recap

A brief-as-I-can-make-it recap of the complications over the past 2 days:

The goal of the Comprehensive Stage II surgery: Remove the bands and stents placed in the Stage I procedure, disconnect the superior vena cavas (she has 2 instead of the usual 1) from the right atrium and connect them directly to the pulmonary arteries, disconnect the main pulmonary trunk from the pulmonary arteries and graft it to the aorta while also repairing Haley's narrowed aorta and making it wider, and removing the well between the left and right atria. All of this is done while Haley is on a heart & lung machine, and while being on a heart and lung machine they cool the body to 68 degrees Fahrenheit. To get someone off a heart and lung machine, they must warm the body up gradually. Alright, so the complication during surgery was that after they did the heart repair, they performed an angiogram to make sure that the blood was flowing correctly with it's new pathway. Unfortunately Haley's was not due to the fact that her right pulmonary artery had a narrowing where that band had been placed, so blood was not getting to her right lung properly. Also, when they tried to wean her off the heart and lung machine she didn't tolerate it. So they had to put her back on the heart and lung machine, cool her back down, and then go in and widen her right pulmonary artery with a graft. Then they had to warm her back up and wean her back off the machine, and thank Heavens they were successful that time.

Overnight Haley-bug seemed to be having her smoothest recovery so far, but it was all a disguise. Her blood pressure had been having a few issues overnight along with her oxygenation. But her chest tube wasn't draining much so they didn't think she was having any trouble with bleeding or losing fluid into her chest. But since they couldn't get it fixed, in the morning they decided to do a chest X-ray and with that they saw that her left chest cavity was filled with fluid and collapsing her left lung. They decided to place a chest drainage tube in that side thinking it had walled itself off from the middle chest tube - this is a routine procedure that should take 10-20 minutes. Kelly called to tell us they were going to do this and she would text me when it was over. 15 minutes later she called back to tell us that Haley was coding and had gone into cardiac arrest, we immediately ran to the hospital for what I hope was the scariest morning of our lives. When we got there they were doing CPR and after about 20 minutes of chest compressions and lots of blood transfusions her heart beat returned without having to be shocked, paced etc. They thought that perhaps part of her heart repair had come undone/failed so Dr. Galantowicz did an emergency surgery in her ICU room, reopening her chest and inspecting the repair. It turned out the repair was fine but that the drain had been clogged by some tissue and so all that fluid had accumulated. He decided to leave her chest open for the time being so that if they would need access again it would be faster/easier. Dr. G was very optimistic and encouraging that she had now been through the worst and would hopefully do better from here on out.

After the arrest, it is routine to place an EEG (kind of like an EKG but it goes on your head and monitors your brain) to monitor for seizures. While Haley is on the ventilator she is paralyzed with a drug and they want to make sure that she's not having seizures that they just can't see. After they placed the EEG and had monitored for about 2 hours, it didn't show any seizures but it also showed very depressed brain function. The neurologist who came to spoke with us must not have been used to dealing with people because she kept hemming and hawing around in a way that we all interpreted as trying to avoid delivering bad news. But once we finally got her to spit it out it was really the fact that they just can't know yet. That though her brain function is low now, she has tons of swelling, a low body temperature, and babies brains are amazing and can bounce back from incredible insult. But it will be anywhere from 24-72 hours before they can decide for sure what her brain is going to do. They would also like to get a CT tomorrow to see if there are any obvious brain injuries. We asked them to give us updates whenever possible, and they did call once today to say that while her brain function is still very depressed, it was ever so slightly improved from earlier in the day. We will take whatever we can get and be grateful for it, at least it's a baby step in the right direction. She then said she wouldn't call back till tomorrow, so no news after that.

This evening, with the massive amount of swelling in the upper half of Haley's body her lungs are also very swollen and 'edematous' as well. If you can imagine a sponge: it is very squishy and expandable when dry, but when soaked with water and doesn't move much at all. Since Haley's lungs are soaked, the regular ventilator wasn't doing an adequate job of oxygenating her anymore because it just couldn't force enough air into her lungs with a normal breathing pattern. (There is nothing they can do really to get all this excess fluid out of her body because it is a stress response of the body to hold onto water - we just have to wait for her to urinate it out on her own once her body feels less stressed.) So they have had to put her on an oscillator which is a ventilator that gives continuous tiny breaths and never lets the lungs collapse/empty out really. When they put her on that, her color immediately improved as did her blood gas. We hope and pray that she continues to do well on it.

There are of course other more minor complications as well; troubles managing her blood pressure, oxygenation levels, getting her to urinate, high blood sugar, etc that they are managing one blood gas analysis at a time. But I wanted to give you more explanation for the terror that we've been living through and the scary posts that I've had to share with you.

Please pray for our Haley-bug. We are consoled only by the fact that the last thing she remembers is falling asleep in our arms, peacefully and with her binky. We are praying constantly that we get to have her, hold her, kiss her, and never put her down again. She is the light of our lives. As terrible as the hospital stays have been, these have still been the best 5 months of our lives.

Saturday

Last night we thought things were going well for our little Haley-bug, but she has had a very rough morning and early afternoon so far. We are still hopeful, but right now things are not the way anyone would wish them to be. Please send lots of prayers.

Sorry this is so brief, I just can't really do this now and things are still very much in limbo. It's a terrible, terrible waiting game.

We love you so, so, so, so much Haley-bug. - Mommy & Daddy

Surgery Day

I'm a pooped puppy and I better sleep while I have a baby sitter (the wonderful, wonderful Aunt Kelly!) so I will try to keep this short, but I couldn't stand to go to bed without updating everyone a little bit on here:

After 10.5 hours of surgery, Haley-bug is through with her Stage 2 procedure! She had some complications that prolonged the surgery, and I will try to find the time to go into detail about them tomorrow, but not tonight. She is still sedated, intubated, on the ventilator, and lots of pain control - and will be for at least the weekend. Her surgery was extra long and extra stressful so they are planning on her being on the ventilator longer than the average 24 hours, but aren't concerned about that. She is incredibly swollen and does have the dreaded Superior Vena Cava Syndrome - her head is giant, an eerie shade of violet, and her lips look like Octo-Mom's. All in all, I'm glad she's sedated and on lots of pain meds. Also, I am thrilled that they were able to close her chest at the end of the surgery! She has one chest tube in, and the two wires in case they need the pacemaker. So far she has been behaving herself though and I pray that she continues to do the same. She has had some minor bumps post-op, which is to be expected. So long as they stay minor it will be okay. Dr. Galantowicz said that by sun-up tomorrow we will be through the thickest part of the woods, but that for 24 hours post-op it's still pretty bramble-y in the woods. Also, as long as she is on the ventilator things are always a little less stable. I am hoping, praying, and wishing that by the beginning of the week we will be able to start to relax a little bit.

She is the light of our lives, the apple of our eyes, and we love her more than anything in the whole entire world. We are so glad that, even though she is swollen and miserable looking, she is through this huge "Super Bowl" of the surgery world (to quote Dr. McKee) and that she is here with us. I pray that our little Bug grows, thrives, and outlives us by many, many years. We love you, Haley-bug.

All for now, I will try to give lots more details tomorrow. Love ~ Kristy, Chadmo, & Haley-bug

A Bit of a Rough 2 Days

"I love to play with my animals, but I get camera shy when Mommy gets close to me..."

"So she has to hide behind the couch and I pretend I don't see her so she can get a cute picture of me!"
So, I started blogging yesterday but then it was just really late and I was very sleepy so I shirked my duty and went to bed! So pretend it's last night for the first half of this post:

Well, the morning started out with a bang, or should I stay a scratch, today. After Haley woke up, had a bottle and a diaper change, she was laying in her crib and playing with Sophie le giraffe while I performed some morning ablutions. Suddenly she started crying very loud and when I rushed into her she had both of her eyes closed and lots of tears coming from her right eye. For probably 10 or 15 minutes after that I carried her around and she did stop crying but wouldn't open her eyes. I finally tricked her into opening her eyes by playing with one of her toys that makes noise, and I thought it looked like their was a hair on her right eye. After a while, when she would open her eyes wider and I had some better lighting, I could see that she had a little divot/scratch on the cornea of her right eye just over her pupil. :( Luckily I had this realization at 11:55 am as her pediatrician's office closes at noon on Wednesdays, and we managed to catch them at the last minute and have them prescribe her some eye drops. Poor little Bug, what bad timing to go and hurt herself!

So, she was pretty much a crab pickle for the rest of the day because whenever she would get sleepy and rub her eye, etc it would hurt again and she would get all upset and hold both her eyes closed. It was a bummer. We were glad we had Grandma, Grandpoppy, and Mimi for crabby-baby-entertaining support all day. (Daddy had class.)

As for today, (real today - Thursday) she was a much happier baby! We had to be up at Children's Hospital for Pre-Admission Testing at 9:30 am so we were all pretty sleepy since she wouldn't go to bed until one. The upside to this was that she slept until they got to her which was around 10 am. Then she was the picture of perfection the whole time we were at the hospital, which really mostly involved a physical and a chest x-ray for her, and lots of talking to doctors, anesthesiologists, nurses, etc for us. One nurse told us that he'd been working there for a year and that Haley was by far the best, quietest, and happy baby he'd seen so far! :) I did confess that she's not ALWAYS quite so perfect...

Tomorrow we have to be back at the hospital at 6 am and they will take her for surgery at 8 am. The first 1.5-2 hours will just be getting her anesthetized, prepped, draped, and IV's placed, and then the actual surgery will start. They said to expect the whole thing to take 8-9 hours, so we will hope she's out of surgery and recovering around 4-5 pm. It's a full day event, and it is actually the only surgery Dr. Galantowicz will do tomorrow - I can't imagine what that will cost our insurance company! This surgery is obviously much bigger than any of Haley's other surgeries, and she will be sedated for at least 24 hours afterward and have much more intense pain management. She will also have 1-3 chest drainage tubes placed along with two temporary pace maker wires in case she has arrhythmias post-op - then they could hook her up to an external pace maker temporarily. They said even if this happens it doesn't mean that she would necessarily have to have a permanent pacer placed, that sometimes it just happens initially post-op or can be managed with anti-arrhythmic medication. If all goes well, the tubes and wires could be pulled as early as 24 hours post-op. There is also a risk that with being on the Heart-Lung machine, getting blood transfusions, and fluids that she will be so swollen that they will have to bring her out of surgery intubated, on the ventilator and with her chest open (but covered with a bandage of course), and wait for her to urinate out all the excess fluids. That would probably take a couple of days and then they would take her back into surgery and close her chest. Dr. G says this happens in approximately 1/4 of patients, and it terrifies me. I suppose I should find some comfort in the fact that it is so 'common', because that makes it less of a big deal some how, but it scares me to death. But lets not dwell on that and continue with more post-op possibilities: There's something called Superior Vena Cava Syndrome, which is when they disconnect her SVC her from her heart (which she actually has 2 instead of the usual one - more work for the surgeons!) and they graft it to her lungs, that instead of the heart sucking the blood from the upper half of her body like normal, that it will flow by gravity into the lungs. Obviously this is a slightly slower process, so for the first few days it may take the body awhile to adjust. They said you may be able to see a clear demarcation across her chest where the upper half of her body will look swollen and larger than normal, until the congestion subsides and the blood flow adjusts. Then she'll go back to normal. But during this time there are some very painful headaches associated with this, and they will be making a point to manage that pain. As for the surgery as a whole, there is a 5% chance of death, heart attack, stroke, permanent kidney or liver damage. I know that means a 95% chance that all will be well - at least eventually - but somehow 5% seems like unacceptably high odds for my little Love-Bug.

On a happier note, after Children's we had to go down to Katy K's office to pick up keys so we could get into their house, and while we were there we had a tasty lunch of Potbelly's in her office. It's a very pretty office and she has quite a view. We also got to meet one of her fellow first year lawyer friends, Guy, so now he believes Katy's 'one friend' is real! I still think we should count for at least 3 friends since there are 3 of us!

Now we're spending the evening eating tasty dinner, getting fat on ice cream, drinking beer, and watching the Olympics. Perhaps we will just move in here and skip going to the hospital tomorrow...

I so much wish I could go through all of this for her. Last night I prayed to God to trade our hearts. I asked him to give me her heart and to give her mine, and that I would gladly go through all of this for her. And while I know in my heart that this is not possible, I so desperately wish that it could be.

Happy Girl Tuesday

"I was a happy girl all day today!"

"I even did some tummy time!"
"Though I like to cheat a little and be propped up on something, in this case Grandma!"
"Well, who would want to lay with their face in the carpet???"
"Not me!! I like to fly up in the air like an airplane, not be stuck on my tummy on the floor!"

Almost Snowpocalypse 2010 II

Adam and Katie came to meet Haley-bug yesterday (finally!) Haley is looking a little nervous because extreme novice baby-holder Adam has her! ;) She loved Katie and we are all rooting for Katie to only get a part time job (aren't we selfish?) so that she can babysit Haley the other part time!!

"I love sitting up like a big girl! And I love it when Mommy makes buzzy buzzy bug noises at me, they make me giggle and smile!"
"Hmm, haven't we done a similar photo shoot to this one before, Mommy?"
"Who's sitting next to me?"
"Oh, it's that silly Mr. Bun-Bun! I know him!"
"I think Mr. Bun-Bun has shrunk, but Mommy claims I've just gotten bigger. Mr. Bun-Bun was telling me about his harrowing adventure in the washing machine today and he thinks I should stick to taking baths the old fashioned way."

Happy Cricket!

"I love my doggy!"

"Ooh, we hear Daddy! He's bringing firewood in to keep us warm!"
"I was so smiley today! I'd had a lovely nap and thought I was so cool sitting up in this big people chair!"
"I'm a happy Cricket!"

Valentine's Day Date Night

"Can you spot (ha ha) my new favorite toy???"

"I just LOVE to chew on her!"
Sophie le Giraffe is hands down Haley-bug's new favorite toy! She is made by a French company, Vulli, and she is made out of soft rubber that is lovely to chew on and she squeaks when you squeeze her (or chew on her!) Aunt Melissa sent it to Bug via Grandmum Wisconsin because Kylee loves her Sophie so much, and she has been a big success here as well. While Grandmum was babysitting tonight, she called to tell us that Haley was chewing on Sophie's legs and that every time she chewed on her, Sophie would squeak and then Haley would laugh hilariously! I wish we would've been here to see it!

As I just mentioned, Grandmum and Bob were so kind as to babysit Haley-bug for us tonight so that Chadmo and I could go out for Valentine's Day! We went down to a restaurant called Stephen's in Athens and on the way we picked up our friends Adam and Katie. After having a delicious dinner of tasty italian food, we went to a bar called Broney's for some drinks. I had something called a champagne daiquiri which was quite tasty! It was really a fun evening and I am now quite stuffed! Katie and Adam - we need to hang out more often!

Bug was very happy to see us when we got home, and we were very happy to see her! She told us she had lots of fun with Grandmum and Bob but that she was a little sad we went out and had fun without her. I told her I didn't see many babies at the restaurant and I wasn't sure it was her kind of crowd... ;) I also didn't see any formula on the menu, but maybe next year! She is such a sweetie pie and I love to see her big smiles when we come home!

The Olympics are here!

Haley-bug, pretending she tolerates sitting, with Grandmum & Bob! Watching the opening of the Olympics! :)

Well, we had a very nice and productive day today! Diane and Bob are the most wonderful people ever as they spent lots of time harassing our insurance company and multiple doctors offices to get a bunch of Haley's medical bills straightened out for us. That was the best gift anyone could give us! Then they also watched Haley so I could go to the doctor's office and have a mole biopsied (OUCH!) and then I also saw a couple of appointments out at the clinic because Dad was swamped.

When Daddy got home from work we had a tasty dinner of roast beef, scalloped potatoes, broccoli, and fresh baked chocolate chip cookies - YUM! And of course, lots of tasty red wine to go with the roast. One of the wines was a Malbec which I've never had before but was quite delicious. I will have to scout out more of them to try. Now we're all just hanging around, watching the Olympics opening, and keeping toasty by the fire. Bianca and Forrest have decided they love Bob and should follow him everywhere! Luckily he's very tolerant of pesky pets!

YAY! Grandmum Wisconsin and Bob are here!! :)

Zonked out in Daddy's arms, between a screaming fit, while Daddy's taking his first turn at our new bedtime technique.

We're so happy because Grandmum Wisconsin and Bob arrived today! We're so excited to have them visit and get to meet Haley for the first time out of the hospital! Haley-bug smiled at Grandmum right away, even though she was pretty sleepy and needed a nap when they first arrived. Grandmum also quickly discovered that Haley likes cheek smoochers and to walk laps around the house. Haley seemed quite fond of Bob too, as she stared at him through most of dinner! :)

When Haley feels overwhelmed sometimes she handles it by looking away from whatever is overwhelming her. It was pretty cute when they first arrived and Grandmum held Haley for the first time, because Haley kept alternately checking her out and then looking away like "Hmmm... someone new...." Then she'd smile and then look away again. And I just love it when she's happy, smiles, and then has to snuggle her face in to your neck because she's excited, and she did some of that too! Such a cutie pie!

We're looking forward to a fun weekend!

I love my bumbo chair!

"Ha ha, look at all the toys I have strewn all over Grandma's living room! I love playing at her house on snow days!"

"You wouldn't make me clean them up, would you Mommy?? I'm far too cute!"

More snow!

"He he, Grandma's funny when she puts snowmen under my arms!"

More snow here in Logan (and most of Ohio it sounds like) today! Mom had a snow day from school and Dad actually closed up the clinic around noon because the roads were getting so bad! Even Chadmo got out of work about an hour and a half early because Athens county was already a snow emergency level 2. We're supposed to be getting a couple more inches at least tonight, and school is already cancelled for tomorrow - yay!

Grandma and Grandpa came and picked Haley-bug up later this afternoon so that Daddy and I could clean our house. Then we came out here too, though we almost didn't make it up the hill to their driveway, and we had dinner and now we're staying the night so Haley-bug and I can enjoy Grandma's snow day with her. :)

Last night was the start of a new bed time routine for Haley-bug. The last few nights before that she'd been staying up till 3-3:30 am and making me walk laps around the house for hours and hours and hours. So last night around midnight I started giving her two options: she could either fall asleep in her crib or be rocked to sleep, but walking laps was no longer an option. It took about 45 minutes and lots of trips back and forth, but she finally decided being rocked was better than nothing, settled down, and fell asleep at about 1:15 am. She cried some, but mostly was fussy till she resigned herself to being rocked. Tonight was round 2 of this new technique and we started a little earlier. Around 11:30 pm I started the same thing, and tonight she screamed a lot louder and there were a lot more tears, but there were also faster results. She resigned herself to being rocked in probably about 15 minutes, and by midnight she was asleep enough I could put her in bed. Now lets just hope she'll still sleep 11 hours for me! That's what I realized last night: when she goes to bed at 3:30 am she wakes up at noon, and when she goes to bed at 1 am she wakes up at noon. So all in all, everyone's getting more sleep and is much happier when she goes to bed earlier! It's hard on both of us though - I hate to hear her cry and she hates to not get what she wants! Hopefully eventually she'll realize this is the routine and she won't have to cry about it anymore... We'll see!

Chatty Haley-bug

Having a very serious conversation with Daddy :)

Rice cereal, round 2 & 14 POUND BABY - YAY!!

"Oooh, that spoon is very interesting! It makes all kinds of fun noises as it gets closer and closer to me..."

"Hmm, but what does it have on it? And why do they keep putting it in my mouth? Is it more medicine? Or something tastier?"
"Well, maybe that's not so bad! It does kind of taste like my bottles..."
"I'm just not sure about this stuff!"
Yay! Haley successfully ate some rice cereal! Last time she wasn't really interested at all, but today she loved the spoon and after a few attempts she started to actually 'chew' and then swallow it! I'm so proud of her! :) I think she will be more enthusiastic once we start foods that actually have flavor!

Super Bowl Sunday

"Oooh, there she is! Here kitty, kitty, kitty..."

"I just love Farrah! She makes me smile! She loves me too, she even lets me pull her tail."
"Who, me? Pull a kitty's tail?? Never!" *cough, cough*
Haley watched the Super Bowl with Daddy while Mommy went shopping at TJ Maxx and then the grocery store. Daddy says "Yay, Saints!" :) All in all it was a pretty good Sunday! We wish the weekends could last longer!

Homework, homework, all day long (for Chadmo)

Forrest, looking pretty while we were all hanging out upstairs, enjoying feeling snuggled in by the snow.

Our cozy house in our snowy winter wonderland!
"I willfully refuse to roll over, but I can make a 180 degree spin around this play mat, pulling my legs up over and around the bars and shimmying around! No tummy time for me thank you, I think someday I will scoot on my butt instead of crawling! We'll see..."
Nothing like a beautiful, snowy day to make me feel content to hibernate in my cozy house by my wood burner!

I'm pretty sure Haley-bug has decided she should never, ever, ever be out of our arms again! And that usually, while in our arms, we should be up and walking laps around the house for her so she can check things out. Maybe she's frustrated she can't walk around herself? Don't get me wrong, she sleeps well for 10 to 11 hours a night, we wake her up once about half way through to eat, and she heads right back to sleep. Though she usually doesn't go to bed till anywhere from 1-3 am! At least once we get to sleep, we tend to get a goodly amount of it. But during her waking hours, she likes to be up and walking. We're trying to not jump up at every little fuss anymore, hoping she'll start to realize that she doesn't ALWAYS get what she wants (we can pretend, right?)... But I'm not very good at letting her fuss, so it's hard on both of us. Ah well, part of me is loathe to even lay her down when she naps during the day (and not only because she rarely stays asleep once I lay her down for naps), I just love to watch all the adorable faces she makes while she sleeps and to snuggle her close. I can't believe we only have 12 more days at home before we have to head back to he hospital... Scary, scary, scary.

YAY FRIDAY!

Haley Stevelt-Mitchell, DVM 2035, practicing with syringes early (don't worry, no needles)!

"Ha ha, Daddy's trying to read to me but I'm wiggling off to the side!"
"Aren't I cute?"
"Mmm, my book's delicious! Sorry Tucker, I don't want to share!"

It's almost the weekend, it's almost the weekend...

Haley-bug snuggling with Daddy next to our cozy, crackling fire.

Here she is with her trusty Spider, he is starting to rival Elephant for favorite toy!

Wednesday Walk Day

All bundled up for our weekly Wednesday walk with Grandpa! Grandma couldn't come this week because she was getting her hair cut. :/ But we had a good walk and the dogs loved it as always. Haley actually stayed awake for the whole mile out which is a first, and then she slept most of the way back. She's such an alert, curious Bug these days!

Zonked out after eating for Grandma! I don't think she'll be successful in getting a burp out this time!

Silly Bug

While I was reading a book with Haley today she insisted on holding both sides of the book for awhile. So I decided to run out into the kitchen for a minute to get something and let her read by herself. She never made a peep and when I came back in to look at her she was happily playing with her play gym and wearing her book like a hat on her head! What a silly Bug!

"Ha ha ha, you thought I was reading but instead I made that book into a hat!"

"Who?? Me?? Ornery??"
"This is my favorite rattle. His name is Spider and he is also a spider. I like to be pragmatic."
"Look! I caught his leg and now I will chew on him! He has lots of legs to chew on and that's why he's my favorite!" (I take after my Grandma as a baby, liking to chew on spiders. But that's a story for another time...)
"Hmm, Mommy says he has 8 legs but it just looks like there are a bunch to me."
"I'm so happy after I nap! Even if I only nap for 3.5 seconds!"