Who's been reading?

In just the last few weeks, I've had a remarkable number of people tell me they read or are still keeping up with the blog, and with the girls... I've been amazed at just who logs in to follow along! When writing in the early days, I thought that there were maybe a couple of dozen people who logged in - since then I've heard from so many from around the world - friends, family, friends of friends, families that have been through or are going through similar situations... I can not thank all of you enough for your love and support!!

As things are now starting to settle down a bit, I'm trying to get caught up on putting some things together for Sadie's baby book/scrap books that I hope to one day have the time to work on. I know that some day, most likely in her teen years, she's going to have questions about her scars, and, while I hope she never does, she may even feel embarrassed or ashamed of them. I want to be able to have something tangible to show her how special and amazing she is. For part of it, I would like your help.

I think I've finally fixed the "comments" section now - I'm on a new version of Blogger, and the bugs seem to be worked out a bit better. If you wouldn't mind - just drop a line, and let Sadie know you've been rooting for her. Or, drop me an email at kthies@vt.edu. I'll compile all of the comments into the book I'm making for her, which will also include this blog. Feel free to send photos, too - it would be nice to have pictures with the comments!

Now, on to Sadie - she had her monthly Synagis (I have no clue how it's spelled, but it's an RSV immunization) shot today, and got weighed - she's now up to 12 lbs 14 ozs! That means she put on a pound and 13 ounces in one month. She is becoming more alert and active by the day, and wants to be entertained ALL the time. She got some new toys to chew on/play with from Santa and has been busy with them the last few days. She's rolling from back to tummy now, but gets really ticked once she's on her belly. The doctors tell me to do tummy time with her as much as possible, just like a normal baby, but to be honest, I don't. I've gotten to where I know her cries a little better, and she really has a hurt cry and is upset for several hours after being flat on her stomach - I think she's still sore, no matter what they say. Anyway, she's holding her head up well, and can sit up on her own with very little support. I can't believe how alert she is - it's like that first month that she was in a comatose state never happened.

Katie is another story. She's in the full throws of being misplaced from her previous position of "center of mommy's universe." Now that she has to share the spotlight, she's been reverting to baby behavior and driving me absolutely insane. I miss my independent "big" girl who would entertain herself from time to time, talk like a normal 4 year old, etc.. Now that she's got competition she wants my attention every waking moment. I know, I know, it's normal, every big brother/sister goes through it, but I was totally unprepared all the same. Some days I just want to scream if I hear "mommy, mommy, mommy, mommy" one more time (she loves this mantra, and will keep it up for hours at a time. She doesn't want anything, just likes the noise and the negative attention she gets from me.) I love her to death, and I'm trying to figure out how to best handle the regression issues, but my God, how much longer will this last? Seriously?!

A friend gave me this book called "The Three Martini Playdate" and I highly recommend reading it. After what I've been feeling about my life as "mommy who can't get out much because her baby cries in a way that everyone in the supermarket thinks she's beating her to death and who's toddler is asking "why can't I have __?" nonstop," it was a refreshing read, to say the least. At least I know I'm not alone...

Sadie's first Christmas

The morning began as it does for most moms of preschoolers on Christmas - with Katie running at breakneck speed into my room at an ungodly hour and shouting that Santa had arrived. This was by far the most fun Christmas morning we've ever had. Sadie enjoyed watching us opening gifts for her, Katie was on cloud 9 and I was close to tears all day, just thankful that our family was together, and missing those that we lost over the past year.

The one that is most closely on my mind today is our beloved Nana, who passed away last January. She is Sadie's namesake, and was one of the most loving people I have ever had the pleasure to know. Since I haven't had the time to add the story of how Sadie got her name, now is probably a good time, since we're all missing Nana so much today.

Sadie Esther Blanton was a strong-willed woman, and the matriach of my husband's family. She had many things she loved - her family, a good game of Rook, the church she went to most of her life, good food, and, most of all, babies. When Jason and I found out we were pregnant with Katie, she was the first person we told. When we found out we were pregnant with Sadie, however, it was a different circumstance.

Last year, Nana was 96 years old, and her health began to deteriorate in the fall. By Christmas, we knew her time was close at hand, and the entire family - even very extended ones - was there by her side for Christmas. Despite her failing health, it was one of the happiest I have ever known. Nana enjoyed watching the children playing, and loved having the family all together in one place. I did not know at that time that I was pregnant, but Jason and I had been hoping for another child.

Several short weeks later, I confirmed that I was pregnant. I went to the doctor to make sure everything was ok, but they could not confirm the pregnancy through ultrasound. A week later, things still looked grim. I had had a miscarriage that began similarily several years before, and the doctor told me to prepare myself - that this one looked like another miscarriage. I was heartbroken, and so was Jason. It was hard enough watching Nana struggle through the end stages of life without having to deal with a second loss at the same time. We chose not to tell the family of the pregnancy, as it would be just too much to deal with.


Several days before Nana passed away, she could barely talk anymore. She said very little to anyone. I had gone to the doctors office for my third ultrasound, which confirmed the pregnancy, but did not show the growth rate we had hoped for. After coming home from the appointment, I got the call from Jason's mother that Nana was failing fast, and that we should come soon if we wanted to see her again. I was devestated by it all, and just could not deal with going to Nana's side at that time. So Jason went without me.

When Jason arrived, he went to Nana's side. In the background, his mom was talking to his aunt and uncle, about this wierd thing Nana had been saying all day - "Tell the Grandson, name the baby." No one knew what it was about. We had not told a single soul that we were pregnant. But Nana knew somehow. Jason talked to her, and she responded with some of her last words - "I love you so." Jason left the room, overwhelmed with emotion. His mom followed him, trying to comfort him - telling him Nana had lead a full and happy life, and was ready to go. "No mom," he said, "you don't understand. Kim is pregnant, and we thought she was likely going to have a miscarriage, so we hadn't told anyone."

Two days later I went with him to visit Nana for the last time. She could not speak, and could barely respond, but her eyes still had that twinkle I so loved about her. As I talked to her about the baby, I said, "Nana, you knew about this baby, didn't you?" and her eyes smiled and she raised her eyebrows a few times. So I started trying to come up with names for the baby, and told her that we would try to use a family name. I even mentioned Sadie, which I could see her laughing at internally.

Just before Nana passed, we were able to confirm the pregnancy, and got the good results we knew we'd receive. The months passed, and we were all calm and happy - the family was thrilled at the prospect of a new baby. We had been plagued by so much loss - Jason's brother, cousin, grandmother and uncle all passed away within a short span of time. We could not wait to celebrate new life.

Jason and I could not agree on a name for the new baby, though. We racked our minds, scoured countless baby books, but just could not find the right fit. I think we both felt a little pressure - Nana had specifically talked about a name for the baby. We wanted something she would have liked. On the night of Sadie's birth, we still had not agreed on a name. Just that morning we had started to throw around Madeline Sadie, and were thinking of calling her Maddie. We knew that we wanted to have Sadie as part of her name, no matter what - in honor of Nana. But I knew that we'd constantly mix up Sadie and Katie... so we thought perhaps Madeline would be a better name. But when we found out that Sadie had some health issues, we knew that we would go with Sadie - after all, Nana lived a long, wonderful life.

When the devestating news of the severity of Sadie's heart defect sank in the evening after I gave birth, my heart cried out, and I just couldn't understand why Nana would have given us "the sign that everything was ok," as I had come to think of her prophetic words. As I cried that night, it slowly dawned on me. Nana gave us an invaluable gift - the gift of hope. Through all of the days that would come, her words sustained me. I just knew Sadie would be alright, and that Nana was watching over her.

On the night before Sadie's surgery, that hope and faith, I admit, were shaky at best. I can't tell you the fear that was in my heart, or explain the anxiety that a parent in that situation faces. Sadie had this wonderful nurse that evening, though. She told me that she felt bad that there was nothing she could offer me, but she said she could give a prayer for Sadie. Now, I am not a religious person, as most of you know, but I do know that there is power in prayer and meditation and my heart was crying out that evening. This nurse was so sweet, and wanted to help, and so I said yes, and we placed our hands on Sadie and she said the most beautiful prayer. I can't recall the words today, but it was a plea for peace for our family, for healing for Sadie and in it she said, "we know that you did not bring Sadie here for disaster, but that you brought her here to fulfill a purpose." Those words brought to me a peace that I can not describe, and soothed my aching soul. It reminded me of what, I think, Nana had been trying to convey with the limited breath she had left on her deathbed. That Sadie was brought to us for a purpose, and that she was going to make it.

So, this Christmas has been a bittersweet one. We are so thrilled with Sadie's progress, and that she is here, at home with us today. We are thankful for our family and friends who have surrounded us with love, and lifted us up when we felt like the world was crumbling beneath our feet. We are grateful and amazed by the love that has been poured out to our family over the past several months - from our family, friends, friends of friends, and the total strangers who became our friends or whome we have yet to meet, but who have been praying, meditating or thinking of Sadie. And, most of all, we are remembering Nana, who for the first time in 12 years I did not spend Christmas with (and likely the first time in Jason's life). We are so happy that she was able to be such a large part of our lives, and thankful for the wonderful gift of hope and the legacy she left behind.

With this, I'll close this overly sentimental Christmas blog and return to my favorite role - Mommy of two. If anyone has suggestions on how to remove ground in candy canes from berber, please let me know. In the meantime, I will vacuum up tiny parts of dolls that Katie will cry over when she discovers they're missing tomorrow and try to make a path through the main areas so that no one steps on a scooter or noisy animatronics animal on the way to the restroom in the middle of the night. When I finally fall into bed, Sadie should wake up within 15 minutes of my dozing off, requiring immediate attention. And I will happily oblige - she is, after all, my little miracle - my own personal little Christmas angel.

Merry Christmas!!!

Sidenote:
I do NOT recommend the Rescue Pet toy dog. If you got one for a kid, and he/she has not yet taken it from the package, destroy it before said child wakes up and has a chance to play with it. The dogs are actually torture devices. All they do is whine and bark. Incessently. In fact, they have two modes on their control box. Whine or bark (the modes are marked "happy" and "sad"). Worst of all, it's got a motion sensor. With the slightest motion in a 10 foot radius it will begin to whine. And of course, it does not come with volume control. Thus, your kid will love it. You, however, will want to permenantly disable it within 15 minutes or less. The only suitable time to give a Rescue Pet is if, for some unknown reason, you are required to give a gift to the child of a mortal enemy. Otherwise, skip it. You'll thank me later.

Ho, Ho, Ho...

I'm happy to report that we really don't have much news around here for a change! Sadie is doing wonderfully. Last night we took her out to dinner with us, and, as usual, everyone who saw her had to come up and comment on how cute she is. Jason said to me at one point that it's amazing that none of them would even know that anything had ever been wrong with her.

Sadie's scar is continuing to heal, and it looks really good. I think that by this time next year it will be barely noticeable. I hope so! It's the only thing that really remains as a daily reminder of what we have been through these past few months. I guess the positive thing about it is that, when I have a long day with her and feel like I'm going to loose it, it is always there to remind me of just how lucky I am to have her, and it puts everything back into perspective for me.

We're finally getting ready for Christmas around here, and Katie is about to turn herself inside out with excitement. From the moment she wakes until we can finally get her down at night she chatters on and on about all things Christmas. We finally got a tree last week (a total Charlie Brown deal that is covering my carpet with a blanket of needles, but a tree, none-the-less) and Katie rearranges the ornaments every morning. Most of the time they all end up on one branch near the bottom, which does nothing to help the overall appearance of the tree.

Sadie is completely off of the methadone, and has done well with the wean. It's been almost four weeks now, so I think it's safe to say that that chapter of our lives is finally overwith - yay! She no longer cries for hours at a time, and is responding to us very well. She still cries a LOT - don't get me wrong (I think it's safe to say much more so than the average baby), but at least now we can console her. I still have to stay away from dairy, or it will do a real number on her system... I hope she outgrows the milk intolerance. While I was on a business trip recently she had to have formula near the end, and the milk-based lactose-free stuff really messed up her system for three days. It has to be soy-based if we use it anymore. So, I'm learning how to adjust my diet. But man, do I miss cheese.

As far as development, I think Sadie is pretty much on target. She smiles socially now - her daddy can make her smile at the drop of a pin. She is reaching and grabbing for things and has discovered her toes in the past week or so. She loves them. Her favorite thing to do is to hang out on the changing table with no diaper - she sings and coos, kicks and smiles up a storm. And she loves to splash in her bath. I think she's probably up to 12.5 lbs now, is 22.5 inches, and is getting some cute little rolls of fat on her thighs and tummy. In fact, I noticed yesterday that she finally has dimples on her elbows and hands (my favorite thing about babies are fat dimples). She does well following objects and is discovering how to put things in her mouth. I think she may already be beginning to teeth, though, because she's drooling up a storm, cranky and biting everything she can get in her mouth (including me - ouch!). She constantly is shoving her hands into her mouth, so I'm even more vigilent with the Purex when we're out with her - especially since strangers seem drawn to touch baby hands without asking. She is cute, I can see why they do it, but I still have to be careful with her in regards to germs and such. A slight cold could be very serious for her still.

So, that is where things are here. We're all gearing up for Christmas and looking forward to a New Year more than ever. If I don't get a chance to post before then, I wish all of you a very Merry Christmas and a Happy New Year!

First time away...

I just got home from a business trip - my first time away from Sadie. It was so hard to leave her, but so nice to sleep for more than 4 hours at a time. I'm very happy to be home, though.

We're back to a lot of crying again, and trying to figure out the cause, or if it's just colic. She's acting like she's teething, but I don't see any tooth buds or feel anything in there. She's drooling a ton, still gassy as heck, and now having constipation issues. I guess it's time to call the GI to make sure there's nothing else going on.

We've now gone 2 weeks without methadone, and she's become so much more alert and interactive. It's great! Now if she'd just quit crying! :)

Our first really good week!

I haven't been posting as much lately, and it's great to say that I really don't have too much to report for a change!

This week was chock full of doctors appointments for the girls. Sadie had to have a few shots on Monday. They give her a special booster called Synagis (for the bargain price of $100/shot AFTER insurance) every month to help protect her from RSV (a respiratory virus). Plus she had to update her HepB shots, since we were behind due to her prolonged hospital stay. And a blood screening was done since the one that was done in the hospital was invalid because she'd recently received a transfusion. So she was pretty cranky the following day, but is now up-to-date and where she should be for an almost 3-month old. Yay!

Katie had to do a VCUG and sonagram this week to make sure that her recent urinary tract infections weren't due to reflux of the urine, problems with her kidneys, etc. The tests were awful and she was scared to death. They had to do a catheter in, fill her bladder through the catheter with barium and watch it go in and out a couple of times. She's got a serious phobia of hospitals (gee, I wonder why?!) and was shaking like a leaf, but was brave and did very well. I do NOT want to have to watch my girls cry though any more tests. I know they're necessary, but there's been way too many of them, and I'm getting weaker emotionally with each one. It was everything in me not to cry when Katie was looking at me screaming as they put the catheter in. Poor baby. Thankfully everything looks good, so we're in the clear on that one. It was nice to get positive test results for a change.

Thursday was Sadie's cardiologist appointment, and they did an echocardiogram to make sure the anatomy of the heart and blood flow are working ok. The cardiologist (Dr. Albrecht) was wonderful, and Sadie was a perfect angel during the exam. She now weighs 11 lbs 2 ozs, which puts her in the 10th percentile, so they're a little worried about her weight and growth (she's 22.5 inches), but not so much so that anything needs to be done. The cardiologist is following up with Sadie's GI, though, because he wants further follow up regarding the lower esophageal slow motility problem at a sooner date than she had thought was necessary. So we'll see what happens there. She's on Prilosec, and it seems to have helped a lot with the spitup and crankiness, and I've been avoiding all dairy products, which also helps. So I'm not sure why the weight isn't going on as fast as it was last month.

The best news of all is that Sadie has now successfully completed her methadone wean! We took her off last Saturday, and she's made it all week long with very few withdrawal signs. Day 3 was kind of tough, but nothing we hadn't seen before - just a lot of crying, cold sweats, stuff like that. We've got a whole new baby on our hands - she's becoming so much more alert, even tempered (well, as even as I think she'll get - some of this is just personality) and so darn cute I can't stand it. I'll try to post new pictures later this weekend!

Happy thanksgiving!

Well, we made it down to Florida after all, and will be celebrating Thanksgiving with Jason's family today. Tomorrow we are looking forward to a trip to Disneyworld with Katie.

Healthwise, both kids are doing well this week. Katie came down with a nasty cold and fever last Friday when she came home from school, so I rushed her over to the doctor to get her checked for strep, since it was going around preschool. The test was negative, so we decided to bring her down after all. She's finally acting like she feels a bit better today.

Sadie is doing great this week. She's had very few crying spells at all, and is down to 1 dose of the methadone a day. Next week she'll be done with it for good, I hope.

Next week brings about new rounds of doctors visits - Katie has a sonagram and UGI scheduled to check out her GI problems, and Sadie has another round of shots (including synagis) and a checkup with her cardiologist. It was nice to be away this week so that we COULDN'T go to a doctor's office. It was our first week since we've been home!

Happy thanksgiving!

Update of Photos

Our Halloween puppy. I actually sewed together her costume. I haven't sewed in more than a decade, so I was thrilled that I figured out how to do something with the machine.

See - she is happy once in a while!

After her hair gets wet it gets all curly, but it dries stick straight, sticking up all over. You can tell her scars are healing really well in this picture!

My girls. :)

Sorry, this one is sideways. This was taken almost a month ago. I can't believe how time flies.

A quick update

Sadie's Prilosec is helping a lot. She's still crying a ton, but isn't spitting up so much, and is eating like a champ again. I think she gained a pound this week - it sure feels like it.

I can't believe it - we're all the way to Wednesday this week without a dr's visit (knocking on wood as I write the next sentance...). I think we're going to make it all week without stepping foot in a dr's office. This will be the first time in... well, I don't know how long. Since we've been home. Yay. Even though she cries so much, this week has felt a lot better to me. I'm beginning to be able to tune out the crying a bit, and learning to cope better. I'm getting out more, and just try to stick to stores that it doesn't matter if she cries in (e.g. Walmart). Just getting out of the house helps both Katie and I, I think. Katie seems a lot happier this week too. I've been so worried about how grown up acting and sad she's been the last month. I know it's normal and expected in our circumstances, but I miss my bubbly little girl. It was good to see her smiling and laughing more this week. Even her teacher and parents at the preschool noticed that she seems happier.

So the new drama in our family is that Jason's brother just got admitted to the hospital tonight with a new blockage in his GI system. He's been battling colon cancer for a couple of years now, and just finished up chemo. The only choice they have to fix this problem is to operate again. So please keep him in your thoughts/prayers. He's a horrible patient, so keep his nurses in there, too. Anyway, Jas is pretty upset. He as telling me tonight that he feels like everything in he's being hit by so many fronts he just doesn't know what to do. I can relate to that, but I think he's had all he can stand.

We had hoped to go to Florida next week to visit his parents and hit Disneyworld with Katie, but the plans have to be scrapped due to the latest developments with his brother. Not to mention that my sister's boyfriend's mom passed away yesterday, and she's pretty upset. So I need to be here for her, too. The memorial service is this weekend.

It's all good, though. I was dreading the 14 hour trip each way with Sadie. Maybe in January we can try to get down there. I just hate to disappoint Katie - again. She was really excited about it the last two days. Maybe she'll forget? (wishful thinking...)

Good report from GI and Ped Drs

I only have a brief second but wanted to update. Sadie had her GI appt yesterday and not much came of it. The GI dr seems to think that the methadone/long-term use of narcotics is what is affecting the slow motility in her lower esophagus. She's not going to do anything further until Sadie is off the methadone for good. If we don't see signs of improvement once she's weaned again, then she suggested seeing a neurologist combined with a something-scopy (sorry, I forget the name) that is basically a camera down her esophagus. But I"m not going to worry about it for now. For the time being, she's on Pepcid to help with the reflux, and she says we should see some improvement in a few days.

Meanwhile, we're down to two doses a day on the methadone, so I've got a very cranky girl again.

Today was her 2 month check-up, and she's 10 lbs 5 ozs, putting her in the 50th percentile for weight. She's in the 25th percentile for length and head circumference.

That's the update. She's crying a lot tonight - probably from the 4 shots, so no more time to write.

Under Pressure...

My friend Cristen has this thing where she'll ask you what song describes how/where you are in life at the moment. Bowie/Queen's "Under Pressure" about sums it up for me. I guess all the stress of the past two months is just coming down hard - combine it with all the new stress of the past couple of weeks and I'm about to blow a gasket. I've been pretty calm and collected through all of this, but in the past weekend I've hit a wall.

So here's the skinny on why I'm losing my mind at the present moment. On Friday I never got a call from the pediatrician regarding Sadie's need to see a GI. I left a message Saturday. I called again today, and was told that they contacted Dr. Kessler, who's supposed to be the best in the Richmond area for infant gastrointestinal stuff. Dr. Kessler didn't have a free spot until February, but said he'd review her test results, and if it was necessary, would clear a spot in his schedule sooner. So I got a call this afternoon that she has an appointment this Thursday. That must mean that it's important. Crap.

Katie stayed home from school sick today. Her stomach is hurting pretty bad. She's on major laxatives, and has no control. All day yesterday I was running between Sadie and Katie changing poopy pants. Today the fun continued, although Sadie's not as bad as Katie today. At least mom was here to help wipe poop for a few hours. Thanks, Mom.

So then I decided I hadn't had enough fun lately, and that it ws time to start tackling the medical bills. Well, we have Anthem Healthkeepers, an HMO. Apparantly they decided that effective July 1 they would not pay for any services for non-participants above set amounts. UVA is a nonparticipant. I got no notification of this, and have requested further info. I don't see how they can possibly do this. They're saying they'll only pay $ 85,000 for Sadie's medical bills, as that is the maximum they allow for out-of-network expenses for a "condition" such as this one. Please. That's a drop in the bucket. We have ONE bill alone that is over $ 285,000. That was for the hospital - it didn't cover the physicians, cardiology team, radiology, surgery... the list goes on. So, I have new battles to wage in my free time. I mentioned to one of the insurance reps that I talked to that I had no choice... it was the only facility available that could save Sadie's life. She told me, well, at least you have her and she's ok. I told her that we are lucky to have her, and I'm forever thankful, but I'd prefer to keep my home, vehicles and belongings as well. Especially since we've been paying Anthem in the event that something like this ever happened. That's why they call it "insurance." She had no response for me. Not that I expected one.

I just want to know when the fun is going to end. I would like more stress (I haven't even TOUCHED how work stuff is going right now). I mean, really, we just don't have enough of this in our lives right now. My mood has gotten really nasty these past two weeks... I don't know if it's just the post-partum blues hitting about 2 months too late or if I'm losing my marbles, but I really just don't feel like I can take much more of this. I rarely leave the house, and don't feel like I have any time to do anything except work, feed the kids, change poopy pants and occassionally catch an hour or two of sleep. I know all moms go through it after having a newborn (been there, done that), but this time around is just so much more intense with all of the other outlying circumstances/problems/etc.

I think I need to have a really good, like 24-hours alone with good wine, Belgian chocolate and sappy chick flicks and then I'd feel better. That, or I need to beat the crap out of some inanimate object that represents the American health system. Maybe I can rig up something on Katie's bopping bag...

Results from the UGI... not good.

Sadie had her Upper GI test done this morning (a test in which she had to swallow Barium and have an active x-ray taken of it's movement through the course of her GI tract). The pediatrician had ordered the test to see if she has reflux, since she's been spitting up a bit lately. The spit up has gotten to be worse and worse in the past week.

So, to the hospital we went... again. They strapped her onto a board and had to pull her arms over her head and tape her down for the test to be done. She was a trooper and cried only a little, and even took all of the barium through bottle feeding (which she normally hates). A doctor was present to read the video as it happened. He told me that there was little reflux, but that there was a problem with her esophagus. The food was collecting at the bottom of the esophagus and was not going into the stomach as quickly as it should. He said he would not speculate as to the cause of the problem, nor its treatment. That's when the first red flag went up.

The pediatrician finally called at 7:00 tonight with the results. She said that there was a problem with the mobility of the food through the esophagus, and that she didn't know the cause. I asked point-blank if she's seen this before (hoping she'd say it was common with kids), and she said she had not. The normal wait-time in this are to see a pediatric gastroentrologist is 3 months, which won't do - she's getting us in as soon as possible.

So, I've started searching the internet to try to figure out what the possibilities could be. None of the things I've come across are exactly wonderful. I'm scared. Many mention (ok, most) surgery. Jason told me not to get too worried yet, but I know what I saw in the test today, and I know how I was treated. The calm words, but no reassurance. I've been there and done that before.

I have to wait until Friday to find out when our GI appointment is. I hate waiting.

The worst is, in what I've read tongiht on the web, almost all espophageal abnormalities cause chest pain, and often back, shoulder and neck pain. So Sadie is likely to still be hurting. Could that be the underlying cause of all the crying? I think it's highly likely. She cried a ton again this evening - from about 4;30 - 9:30. I feel so helpless to relieve her discomfort/pain/whatever it is.

I just don't get it. Why does one little person have to go through so much? I really hope I'm overreacting and this is minor, but my mommy-senses are tingling again. Neither doctor I talked to today had answers, and we're being referred to a specialist with urgency. This is not good, and I just know it.

Normal?!

I'm almost scared to write anything about the last few days because I don't want to jinx it... things have been great. Sadie feels so much better, and is a pretty happy baby now. She still fusses, but nothing like before. I can handle a few hours of cranky every day, it seems like bliss. She now lets me hold her, carress her hair - she even tolerated my singing her to sleep tonight.

Last week (well, really the whole time before now) I was afraid to touch her too much because it upset her. She screamed through most interaction. She hated baths. She wanted nothign to do with me unless I was feeding her. So this is a very welcome change. I feel like I have a baby again! I just hope this time the wean will work and we can get past this methadone thing.

She's now on a 6 week gradual wean, so we've got a while to go. However, she's not as drugged as she was before. She's very lucid, smiles often and coos a bit. She watches everything and studies faces, and has even started trying to "talk" back to us by mimicking our mouth movements. So, developmentally, all is still well, even with the drugs.

Back on the methadone

Again. I kept talking to the doctors, and they kept telling me it was colic. So, I spent a few hours doing research on the Web, and came up with a thing called the NAS score, which measures withdrawal symptoms to determine whether they are withdrawals, and if they're severe enough to need treatment. Anything over an 8 (the range is 1-18 or 20 I think) is considered withdrawals requiring treatment. 12-15 = severe. Sadie was scoring 12-16 for 8 hours straight (I did the scoring every 2 hours) Monday night.

I called the pediatrician the next day and got an appt, and called the cardiologist. I explained to the pediatrician the scoring system (she didn't have a clue). One of the items listed is diarrhea. She had the nerve to question me on whether Sadie actually had diarrhea, saying htat all newborns have loose stools. Hello. I'm not a moron. So I explained to her that when almost flourescent poo is shooting from your daughter's bottom in a liquid form day and night, it is most likely considered "explosive, liquid diarrhea." I then dug a diaper out of the trash (she had kept me waiting for 45 minutes, which is enough time for Sadie to go through two) to illustrate it. She then agreed that it would be considered explosive and liquid. (sigh)

I had also armed myself with some literature I got from the Net. I found one doctor who wrote a recently published article in Analgesics and Anesthesia concerning methodone weaning, and emailed to him explaining my situation and asking him if he'd supply the article for my personal use. He replied within hours and not only sent the article, but also sent an offer to talk to any of the physicians we were dealing with and to help with any of my questions. What a nice guy!! His article had the scoring chart in it, as well as other useful info, which I used to walk the pediatrician through what happens when there's a severe narcotic withdrawal in an infant.

In the meantime, the cardiologist got on the phone to UVA, and came up with a new wean method - it will take about 4 weeks to go through it all again. Hopefully this time won't be as bad. Most kids don't respond this way - Sadie is the minority, so there's not a lot of research to support any method for getting her from here to there. It's all guesswork, and it makes me antsy as hell.

So, we're drugging her again. There were great results within 30 minutes of her first dose. The las two nights I've gotten 6-8 hours of sleep total! I was really upset about putting her back on it, fearing she'd become less lucid, but so far, so good. She's still very alert, and I got more smiles and coos this morning than I've ever gotten in one sitting. I just hope it keeps up. I'm scared to death that the drugs will screw up her development. She's already been through so much, but she's on par with where she should be - even a little ahead of schedule. It amazes me how well she does in spite of all these medical setbacks.

It's been so nice the last two days. It's like having a normal baby. She's cried maybe 4 hours a day (mostly in evenings - she IS a bit colicky), which I can totally handle. I'd forgotten how abnormal our life was until it got a little closer to what normal should be. I've showered two days in a row! Eaten! Slept! Worked! I feel totally pampered at this point. :)

New Photos

From last Saturday (10/22)

Earlier this month (10/9)

After her first "real" bath in her bathtub (10/13)

Why won't the crying stop?!!!!

She's still crying. Now she's barely sleeping. Tonight has been awful. I don't understand!!!

I did a bunch of research on the Web today and found that withdrawals can often come and go for a month or two. No doctor told me that. Thanks. There's such a thing, especially with methadone, of delayed withdrawal as well. Which could explain the couple of good days last week, then the sudden plunge back into the crying.

I am trying everything under the sun to soothe colic. I went to a million and one places (ok, 5, but whatever) to find some Gripe Water today, which has chamomile, ginger and fennel. No real effect. I have some "tummy soother" on order from CVS. We douse her with Mylicon. That helps, for like 2 minutes.

This evening she's been awake, except for one 20 minute nap, since 4:30. It's now 10:45. This is not normal infant behavior.

On the plus side, she is calm and awake for more minutes in the day than she was last week. She loves being on her changing table. The car seat on the dryer routine seems to work for 15 minutes or so, as well.

The feeding is getting wierd too. It's like sometimes she forgets how to suck and swallow. Yet all last week she did well with it.

So, more fun in the Thies household. If anyone wants to come spend the night, feel free. It's AWESOME.

Fun week! (read sarcasm)

So, we're finally off of methadone completely. Sadie hasn't had a dose since Sunday. She screamed all Sunday night. So, I woke in the morning and promptly fell down the stairs since I was so tired. On Wednesday I finally broke down and went to the doctor and found out I fractured my elbow and sprained my shoulder. Sweet. Yesterday I noticed that my knee also hurts and is swollen. More fun!

Katie ended up getting a bladder infection from her UTI, so we were back in the doctors office for that this week. It also turns out her long-term GI problems are worse than ever - she has multiple golf-ball sized impactions throughout her intestines. So, she's on a load of laxatives to blast them out, and we had to do 3 enemas on her to help her out. Four-year olds and enemas are not a good mix. Not that any age and an enema is fun.

Sadie's crying hasn't gotten better since getting her off of the methadone. If she's awake, she's crying or eating. Today I had maybe 2 hours of happy baby awake time (i.e. not crying or eating) which is a big improvement from any other day this week, but it's wearing me out. Especially since I feel like a truck hit me. I got some good smiles though, and she's becoming more alert and aware of her surroundings, so that keeps me going. Next week we go in to try to determine if it's some super nasty colic we're dealing with or if maybe there's some acid reflux mixed in. So much for not seeing the doctors weekly!

Heart Walk on Saturday!

As promised, here is the link for the donation page for the HeartWalk on Saturday. We would love to see any or all of you out there walking with us to help raise funds for the American Heart Association! Our team, Mended Little Hearts of Richmond, will be leading the walk that morning - I'm looking forward to meeting other parents who have kids that have survived and thrived, as Sadie is doing!

The withdrawals are back... not as bad this time, but back all the same. We've quit the methadone entirely now, and I refuse to give any, even though it kills me to see her cry.

On a fun note, I took a trip down the stairs this morning the fast way. I'm glad I kept all that percocet from when I had Sadie - I am hurting from head to toe! I guess that's what happens when you're a walking zombie...

I'll try to post some new photos later today or tomorrow. Sadie is getting fatter by the minute - she actually has fat rolls on her legs again! I'm so excited about her progress.

The Stars Were Aligned...

Yesterday Sadie got a clean bill of health from the cardiologist, with the exception of a slight heart murmur, which is to be expected. We finally saw Dr. Albrecht, the original cardiologist who diagnosed Sadie the night she was born. We were talking, and he paused and said, "Do you have any idea how lucky you are?" I, of course, replied that we knew, but he persisted. He said he wanted to tell me a few things that may bring it home at how close we were to losing Sadie those first 24 hours or so, and the few minor things that made all the difference, such as:

• If we had not made it to the hospital in time (i.e. we had only 17 minutes to spare),
  
• If the neonatologist on staff had not been persistent in trying to uncover the cause of her blue tint after her intubation,
• If Dr. Albrecht had not been the cardiologist on call from his group that night (he is a specialist in TGA - no one else in Richmond has his experience with infants and this particular defect),
• If the transport driver had not offered to extend his shift and take her to UVA instead of St Mary's (he operated out of St. Mary's) and too much time had been lost,
• If any of this had happened those first few hours, she could not have survived.

It's amazing to think how closely we teetered on the edge of losing her, and how the strangers we met that night made all the difference in her life. I try to do thank-you notes to all who have helped, but have no idea how to track down the transport guy. I don't know if he knows what an impact he made... but I want to be sure to let him know if I can.

Anyway, Sadie is doing great! We're almost completely weaned from the methadone now, and the withdrawals have subsided. By Sunday night we should be done with that stuff! Sadie is eating great, and gained 10 ozs in 7 days - she's just shy of 8 lbs now. She's becoming more alert (I suspect from being off the drugs), and has dazzled me with some beautiful, toothless smiles that melt my heart.

On a side note, we have joined the Mended Little Hearts group in Richmond. The group consists of kids who have survived CHD's of all types. Next weekend is the annual Richmond Heart Walk, and our group will be participating. Since Sadie is doing so well, our family will be joining in to celebrate Sadie's recovering and help raise funds for future research and care of other kids with heart defects. I'll post a link to Sadie's fundraising page tomorrow, if you or your family is interested in participating/donating!

Bad night last night but good dr visit

Well, last night was another night of withdrawals. Sadie slept all day yesterday, which worried me. I couldn't hardly wake her to eat even. Then the withdrawal symptoms hit hard last night - first the sneezing and yawning, then the crying. She cried for hours on end again. Once we finally got her down she only slept a few hours before crying again for another hour and a half. Then, this morning the diarrhea hit again. But, by the afternoon she was a happy baby again.

I called the cardiologist again in the middle of the night last night to get help. Now we're trying yet another way of trying to wean the methadone. She'll be taking smaller doses more often (4 x per day instead of two), then we'll gradually increase the time between doses. Makes sense, so I hope it works.

So, I had to go and get more methadone today, which is always fun. It's a controlled substance, and no one in the area had any, so I had to go to the West End to get it. Then insurance denied coverage for it (not that it mattered - it's such a small dose it wasn't much at all) because I should have some left from the last refill. Sure, I would have if she hadn't withdrawn and we'd had to increase it again... I'm so sick of explaining to everyone and their cousin how the weaning process works. Not even the doctors know what to do - it's all a big experiment.

Anyway, both girls had their peditrician appointments today, which was fun. Katie had to have four shots and freaked out, which I wasn't expecting. Normally she's calm, but she kicked and screamed and raised heck. She's 40 lbs now - I knew she was big, but wow! Anyway, she got a clean bill of health. Sadie is doing well, too. The infection on her heal is clearing up. She's on antibiotics orally to help with that, though, so that might be part of the problem with the diarrhea she's been having. The best news, however, is that she gained 4 ozs in 4 days - according to their scales she was 7 lbs 12 ozs today - the first time she's been above her birthweight (other than pre-surgery when they pumped her full of fluids... but that's not "real" weight). Yay!

I had to keep the lactation consultation today anyway, but managed to talk them out of giving me the nursing supplemental devise. I can keep breastfeeding as we have been, but just need to pump after every feeding to make sure we get the "hind" milk that contains the most calories and fat. That I have to give her via bottle several times a day. So, longer times for feeding, but I'd rather that than an NG tube or supplemental device. As long as she gains 3 ozs by Friday we can stick to this routine.

Sadie's doing better tonight. I'm counting the minutes until she can have her next methadone dose, since she's easily agitated and pretty fussy, but it's nothing like last night.

Another good day!

Wow - I actually had time to vacuum and dust today. And shower. Woohoo! Sadie is doing great - she's acting like a normal baby and I don't know what to do with her. I even got some smiles and coos today while I was changing her (which she used to scream about. Of course, she screamed about everything.). I'm afraid to see what tomorrow brings, because we start decreasing the methadone again. I hope this time it will work without all the side-effects.

So, the only battle we've had today is feeding. The docs have instructed me to feed her every two hours, but she just won't eat much when we do it that way. Three hours seems to work better for her. But, she didn't gain enough weight last week, so they're putting me through the wringer on the feedings. She actually took a bit of a bottle today from Jason, though, so he's going to get stuck with some feedings tonight whether he likes it or not. I can't wait to sleep for, like, three hours in a row or something. It'll be bliss.

Finally - a "normal" day!

Sadie was great today - she maybe cried three hours total (yes, I know the night is young yet and I should watch what I say, but still...!).

This is a huge improvement. She's sleeping a ton today, but has had some awake, active time without crying. It's short-lived, but still, it's there. She's been more alert, looking around at things. I'm still waiting for the smiles to really start (we've seen a few, but they're far between).

Hopefully we can keep her calm and get some weight on her in the next few days so that we don't have to put the NG tube back in. She's been eating a lot all day, but it's tapered off tonight, so I guess I've got to start waking and feeding her again.

Katie's pretty worn out from all the baby-stuff, but still does well with Sadie. She loves to hold her when she can, but hasn't had a chance the previous few days because of the crying fits. Today she finally could hold her again, and spent every minute she could taking care of Sadie. I wish I could make it easier for Katie.

That's all the news tonight. No drama today. I don't know what to do with myself!

Less crying, new infection... the fun continues

So we saw the pediatrician today. The blister that she got on her ankle in the hospital (which was due to an IV that was put in incorrectly and left too long) had made a nasty wound, which is now infected. So, she needs to start amoxicillin, which isn't bad considering the other stuff she's on, but all the same...

The crying died down a lot today. I think we've had about six hours total so far. Not too bad - much better than the last few days. The doctor doesn't think it's colic, but agrees that something is definitely wrong. We just don't know what. Perhaps the withdrawals - perhaps the new infection - probably that she's burning too much of her daily caloric intake - maybe that she's exhausted and her body can't cope. Or, most likely, the combination of all of those and then some. Who knows.

She's also only gained one ounce since last week, so the doctors are worried about that. I need to start supplementing her feedings, and need to get some special equipment for that tomorrow.

The most fun thing today is that I tried to get her methadone prescription filled, and they didn't have it. The pharmacist mentioned to Jason that the dosages were off, so I double-checked the prescription against my previous dosages, and found out that they were wrong - the new script's concentration is 10 times more powerful than what she was on! I'm so glad that I caught it. I have to call the cardiologist tomorrow to get it all straightened out, but thank God that I didn't get it filled tonight or I would have overdosed her! How scary is that?!

The other fun is that the dr said I need to go back to the every 2 hour feedings, so no sleep for me for a while. Not that I was getting much of anything anyway, but still - I got one three hour stint last night between feedings and it felt like heaven. So, back to the one hour at a time thing (hoping that she will feed and get back to sleep in an hour's time).

Here's hoping for 4 hours or less of crying tomorrow... cross your fingers for us!

AAAARRRRGHHH!

The crying hasn't stopped, except for a few moments at a time for over 48 hours. I have never been so frazzled, worn out or tired in my life. Jason and Katie are pretty stressed over it all, too.

I broke down and called UVA cardiology dept. last night after Sadie cried from 5-9pm (it continued until after 11) and they diagnosed withdrawals... again. She's just not kicking the methadone like she should. They recommended I get in to see our local cardiologist ASAP, so I took Sadie in this morning, screaming. The cardiologist was alarmed at first - sure that she was in pain and that something must be wrong. But they did the full work-up - EKG, PulseOx, etc., etc. and everything came back perfect. Except that she was screaming, and appeared to be in pain. I asked if it could simply be colic, and they said that they doubted it - that it appears to be an extreme reaction due to withdrawals. They told me that she's one of the sickest TGA babies they've ever had, and as such, it took longer to stabalize her before surgery and she required higher dosages of medications than most. She did so well after surgery that she came off the meds very quickly, but her body just can't seem to cope without the narcotics. So... back home we came with a new script for yet more methadone and another week to deal with going back up on the dosages and then coming back down.

It's reassuring to hear that she's a miracle baby, but it's always hard to be reminded by the doctors just how close we came to losing her. It kind of brings back those early days in a flood of feelings that are almost unbearable. I know we are over the hump now, and that it's ok to look back, but I'm still a little jumpy about it all. It's odd that it's hitting me now more than it did then that we were so close to the edge at the time. I guess I've just had time to process it - then it was just a flurry of stat numbers, diagnoses and medicine doses that I could focus on so that I wouldn't have to let in the emotion of it all. That's not to say I didn't realize what was going on, or what was at stake. It's just that now that the worst of it all is over and we're resurfacing a little that I'm finally able to let go and realize just how much we've gone through, and how much little Sadie has overcome.

Anyway, since getting her increase on the methadone again last night, we haven't seen much improvement, except that we're getting longer periods of sleep (an hour at a time sometimes! Wow.). I'm so exhausted and worn out that I just want to cry. I can't stand seeing her crying. They keep reasurring me that she's not "really" in pain, that she only "thinks" she is - but that's not enough reassurance for me. She cries for HOURS at a time - with only 15 minute or less catnaps in between.

The good news in all of this is that all of the tests came back beautifully - Sadie is healing well. Now if we could just figure out why she's crying so much. Tomorrow we go to the pediatrician. I'm thinking that there might be some colic involved, maybe in addition to the methadone withdrawals. Who knows. Hopefully we can get some answers so that at least I know that she's ok, and there's nothing more seriously wrong with her (as if it's not enough for her - poor baby).

On a side note, I feel like there's something I need to say to some people who have been reading this post (most of you will have no clue what I'm talking about, so please ignore this). It came to my attention yesterday that some people that have been reading this blog that have been offended by some of my comments. I'd like to just take a moment to say that this is my PERSONAL venting post, and it doesn't reflect my family's opinions, or anyone else's, for that matter. If you don't like what I say, don't take it out on one of my loved ones - just stop reading. We're all going through enough right now without strangers reading my comments and making life even more stressful for us.

That being said, everyone else has been so wonderful through all of this. My mom has been awesome - she's been here every day helping with Sadie and Katie. Jas's parents came and watched the girls for a couple of hours today so that I could be on a teleconference (unfortunately, as a small business owner there's no such thing as maternity leave for me!). A group of our friends who have kids that went to school with Katie last year have brought meals every night this week, which has been a HUGE help since Sadie rarely allows us to put her down even for a moment. The whole day goes by in a flash (although the crying never seems to end), and I don't get a thing done - our home looks like a series of tornados have blown through it. Friends and family have been calling, stopping by and offering support and encouragement daily, and it means a lot -especially when I'm so worn down. Thank you to all of you who have helped make life easier for us as we've gone through this nightmare - we love you!

Getting used to being home

It's been a flurry of activity these past few days as we've all been adjusting to being home. It's not quite been a week yet, but Sadie is already doing better with her sleep patterns and has calmed down a bit. Sunday was awful - she had withdrawal symptoms once again from the methadone, so we had to go back to dosing her on it again, and hope to have it weaned off for good by Sunday of this week.

Sadie gets pretty cranky every evening, and I'm starting to think she might be colicky. It starts like clockwork at 6:00 and lasts until about 2 a.m. I guess it's time to start trying to remove various foods to see what makes her gassy and cranky.

Other than a few hours a day of crying, we're all doing well. Katie is adjusting to being a big sister, and loves to hold Sadie every chance she can get. She (Katie) started school yesterday and loves it. My mom is helping with Sadie while Katie's in school, which allows a couple of hours for me to try to catch up on work a bit. I need to put in a good 60-80 hours to catch up to where I need to be with my business, but I'll just have to do what I can when I can. Jason's returned to work and is back in the grind.

So, it's settling down here, but I find that I have less time than ever to do much of anything. I think we're programmed to forget what having an infant is like so that we continue to reproduce - otherwise we'd all have one child or less. The whole sleepless nights and consistently crying baby thing sucks - but who am I to complain?! I have a healthy, relatively happy baby girl at home, in my arms which is more than I could have imagined a few weeks ago.

More photos

Seriously, have you ever seen a baby with such long hair??!


Cross-eyed. I love it when babies do that.


Sadie sleeping peacefully on "The Floor" at the hospital - actually dressed for the first time!

Going Home!!


Sadie and her Big Sister - Katie takes such good care of her!

Photo Catch-Up

I thought I'd throw a few photos up now that we're back home!

The PICU room Sadie was in for over two weeks.

Sadie, post surgery (9/17/06. Surgery was 9/15.)

First time I held Sadie, on the day her vent was removed (9/21). Katie's showing her the picture she made for her that day.

Tears all around

Sadie's been extremely cranky since we got home, but it let up for a few hours today. I'm feeding her every hour and a half, and that seems to keep her from losing her cool. This child can throw a tantrum like I've never seen before. I'm not sure if it's gas, methodone withdrawals, overstimulation, understimulation, hunger or what that is driving the fits she has, but she's pretty much inconsolable when it happens. Katie was a super easy baby, so maybe it's just this one's personality and that I got a bit spoiled the first time around. Of course, I can't be mad - just a week ago I was waiting to hear her first cries. This baby has been through so much. But, still, is it too much to ask for a break from all the constant drama?

Katie's been pretty tearful, too, which is also understandable. Ooops. Sadie's cring again... more later.

No Place Like Home

After three and a half weeks, we're finally home! They finally let us go yesterday afternoon, and I've never been happier to set foot in our house. I love so many little things right now - a kitchen sink to wash things in, and a private bathroom. A shower that I'm not afraid to get into without flipflops on. Ahhh...

Of course, the best part is having our family of four together at last. Katie is adjusting pretty well, all things considered. Jason's not throwing too many tantrums either. We're off to a good start.

Sadie is doing great - she's eating like crazy (yesterday we were on a 10-15 minutes every half hours schedule - today we're down to every 1-2 hours) and is a typical baby. She's been extremely fussy tonight, though. I haven't had a minute to myself since we walked in, but I'm loving every second of her. Last night she even let me get 3 straight hours of sleep in a row at one point.

We had our first pediatrician's appointment today, and it was wierd to realize how "old" she is already. The nurse asked if this was our first appointment - I said yes, but when she saw her birth date she said it was more of her 1 month appointment. It's odd to think of her as being almost a month old, as I've only really "had" her for a week or so. The rest of the time she was comatose and I couldn't do anything. It all still doesn't seem real, except that when I look at the scar on her chest, it comes back in a rush.

The appointment went well, and we will have a follow up next week, as well as weekly follow-ups with our local cardiologist, Dr. Albrecht. Our main concern is to put weight on Sadie - she's down to 7 lbs 3 ozs, which is 7 ozs below birthweight. Since she won't take a bottle, the docs are concerned that she's not eating enough. I think she's doing ok, but time will tell. It's hard to tell with her as to how much she's getting - we don't have many diapers to change yet, which concerns me. I know how much I "produce" and she seems to be using all of that, so I think she's getting enough, if not more than enough... so I don't know why we have such little output. I think I will worry the rest of my life over this one over every minor incident.

I'm making no sense whatsoever tonight (mainly because I think I've clocked about 8 hours of sleep in the past 5 days), but wanted to put up a note since I'm getting bombarded by calls asking why I'm not keeping up the blog. I'll be keeping it up for a while, no worries. It's just that right now we're overwhelmed with moving back into our house, getting used to a newborn all over again, dealing with a rightfully emotional 4-year old and trying to process the joy, shock and exhaustion of finally having Sadie at home.

Quick Update

I only have a couple of minutes as we've moved to "The Floor" and I have to be in the room with Sadie all the time now. She is doing extremely well - so well that we expect to be home by tomorrow evening!!!

It's been a challenge to get her to eat. They wanted her to start on a bottle so that we could monitor how much intake she had. She was also on a nasalgastric (NG) tube, and they expected her to go home on it. I've learned how to insert the tube, do gravity feeds, etc. Then, yesterday the attending came in and said to remove the NG tube and try letting her feed on her own only. She did not like having to do so much work for food, and by the evening she was exhausted, hungry and too irritable to eat. The cardiology nurse finally asked if I'd tried going to breast yet, and I told her no - that I'd been waiting for more than 3 weeks for the chance to do so. So, they let me. And Sadie latched on PERFECTLY and nursed for several minutes straight. Since then, she's been waking on her own to let me know she's hungry and nursing at breast like a champ. I even managed to convince her to use a bottle for a bit, which she had rejected before.

Sadie was slated to go home today, but they want to hold her one more day since she lost so much weight yesterday. Cross your fingers for us - if she stays the same weight or increases we are OUT OF HERE!!

A New Week - New Room!

The last few days have been pretty hectic around here. Sadie is doing very well - so well that she's moved out of the PICU and into the acute care pediatric wing of the hospital. We've moved into a room that has 4 walls (oooooohhhh) and a private bathroom (aaaahhhh) and a closing door. Very nice digs after being in the PICU for close to three weeks.

Sadie is officially 3 weeks old in a few hours, and is becoming a "normal" baby already! She tracks things well with her eyes, is eating pretty well and is smiling up a storm. Those smiles make my heart stop every time I see them. She's so pretty I can't stand it. She looks so different from those early days it is amazing.

The only drawback to our new room is that there is no internet access, and that I need to be there basically 24-7. They have volunteers who come in to sit with the baby so you can do things like shower or run out for some food, and nursing students who help, too (how I'm on the computer now). So, sorry to say, I probably won't be able to post the new pictures of the new, improved Sadie for a few days.

Katie had her big birthday party yesterday, and it was great! It was my first time away from Sadie for an extended period, but Kerinda (my sister) was with Sadie, so I didn't worry. Of course, they picked the time that both Jason and I were away to move Sadie to the new unit. Anyways, Katie had a blast at her party, and I think the other kids did too. It was my first time at the Richmond Children's Museum, and I was really impressed. It was fun to watch both sets of the kids grandparents playing in the "shadow room." I would highly recommend having kids parties there - they did an awesome job, and I didn't have to do a thing but sit back and enjoy. It was great to see friends and family, too - I enjoyed it as much as Katie did, I think.

Today's big news is that I gave Sadie a sponge bath on my own for the first time. I got to check her all out, which I'd never done before. She's so skinny right now that I constantly worry she's not getting enough nutrition. Most of her "stuff" is now removed - no more heart monitors, and the only things she's hooked up to now are some oxygen, a nasal-gastric tube for supplemental feedings and a probe on her foot to monitor heart rate and oxygen use. She still has the pacemaker wires sticking out of her tummy, but everything else has been sutured up. Her chest wound is healing well, but pretty gross to look at, since the glue is starting to peel. Ewww.

I can't believe that we're starting to move toward normalcy. Today Sadie has slept most the day, and not eaten much. I've been so paranoid that something is wrong that two different docs have had to come and reassure me it's ok. I just don't know what to do with a happy, sleeping baby. It's wierd after all we've been through.

Whirlwinds and Withdrawals

Since coming off of her ventilator two days ago, Sadie has rapidly gotten better and better. I haven't had a moment to get on here - it's been a whirlwind of firsts, happy moments and long bouts of crying (Sadie, mostly, but some of my tears have been mixed in there as well).

Now that she's off the breathing tube I'm able to change diapers and bathe her, which is an adventure to try to acomplish around the 20 million wires still attached to her. Her arterial lines have both come out (one was in her neck, one in her groin), so now I can pick her up, hold her, rock her, give her a bottle (they won't let me put her to breast yet) and put her in a swing, which she loves. That kid just wants to keep on moving.

Despite all the progress, it's been kind of rough these past few days as she's been completely weaned from the Fentanyl, which is an opiate narcotic. Last night was especially gruelling, with an hour or more of every three devoted to crying, one to eating and then in my free hour I have to pump, get her resettled for a short nap, and try to lay down for a few minutes. I'm going on no sleep for several days except a few cat naps of 15-20 minutes, but loving every minute of her - even the cries. Just a few days ago there were whispers around here of brain and kidney damage. Today she's tracking everything with her eyes, responding to silly faces I make and eating like a champ, considering the trauma she has been through.

They've been giving her morphine and methadone to help with the withdrawals, and it's a bit better, but we still have some vomiting, diarrhea, sneezing, shakes and some extreme irratability. I can't wait for this phase to be over with!

Katie and I were interviewed for a telethon they're doing for the children's hospital, and Katie did an awesome job. Everyone has been coming up to say how well she spoke and how cute she was describing what was wrong with her baby sister and how she wanted to take her home forever. Katie's been so good through all of this. The reality of having a new sister is starting to kick in now that her sister is being held by mommy, though, and I'm seeing the beginning stages of some jealousy, but all in all, she's dealing with it well. She likes to stand next to me as I hold Sadie and rub her hair and tell her everything is ok, and that she loves her. She's such a good big sister!

I GOT TO HOLD HER!!

After a bad day yesterday and rough start to the morning, I'm pleased to report that Sadie's breathing tube is finally OUT! I got to hold her this morning and it was sheer bliss. Unfortunately, it's not a quiet day here, as she's having a lot of withdrawal symptoms from coming off the pain meds. She just got a little shot of morphine to take the edge off, so I had a spare moment to write in here.

She is so beautiful - I can't wait to show her off! It's the first time I've really seen her face, and she looks exactly like Katie as a baby, except a different nose and she's much darker than Katie.

Yay! Wish us luck as we go through the withdrawal process. It is NOT fun to see your little one shaking and crying incessently.

Back on the seesaw

After the good news yesterday, we got bad news in the wee hours - she has an infection. A culture came back positive, and it will be another 24 hours before we know what it is. Right now all we know is that it's bacterial, and the location source is her right femoral artery, where she has a line going in. So, they've switched her off of her old antibiotic and started two new ones that cover a wide spectrum of bacterial infections, hoping that it will cover this one. We just won't know until tomorrow morning what's up.

All this means that she won't get her breathing tube out today, or tomorrow, for that matter. She is pinking up nicely now, but mostly due to her fits - she's throwing tantrums left and right. She's begun to grab at the wires and lines, and will cry for a good 10 minutes at a time. While it's great to see her reactive and responsive, it tears me up to see the crying. Nothing pacifies her except drugs. They try to let her go without them, but she gets herself worked up so much that her blood pressure skyrockets and they have to bring her back down.

So, I'm back to being overly emotional once again. I am beginning to feel like we'll never leave this room. I was so hopeful about getting home next week, but it's not going to happen now. We're all just ready to be home.

Katie's birthday was ok, but I didn't get to do any of the things I had hoped/planned for her. It just seems that we get swallowed into a time warp here in the hospital and we run out of time to do the "important" things. We did make it to a park for a few minutes, and managed to do cake and presents in the hotel room after a very late dinner. She was thrilled with her big gift - a dollhouse that she keeps begging to bring to Sadie's room. It's pretty cool - I have to admit I liked playing with it this morning, too. Don't feel too sorry for poor Katie, though - she has her big party this weekend which will be a lot of fun for her. I know she misses her friends.

That's the news from the PICU for today. More sitting and waiting, thrown in with moments of complete helplessness as I watch Sadie cry. I can not wait to get that little girl in my arms. I hope she doesn't hate being held. Right now if I even touch her it upsets her.

"A Normal Baby!"

I heard it - the three words I've been waiting to hear since Sadie's birth. Today one of the heads of the cardiology team came in, and he told me that Sadie is recovering remarkably, and that, other than the swelling, she's moving along quickly towards going home. I finally got up the courage to ask what I've been wanting to ask since day one - "What can we expect over the next year?" And his reply? "A NORMAL BABY!" I am so excited!!! There's an end in sight to this nightmare of a roller coaster we've been experiencing the last two weeks.

Keep your fingers crossed for us - we hope that tomorrow will be the day she gets the breathing tube removed. They're still waiting for more fluid to come off, and to reduce her CO2 levels. I'm so close to holding her now that the minutes seem like hours. Today the only real drawback are some slight withdrawals she's facing from reduction of her painkiller, Fentanyl. Her little arms are shaking and her eyes roll back from time to time, so the nurses have to keep assuring me again and again that she's ok. I hate seeing it, but know that the sooner she's off of them, the better she can recover. It's just the in between time that's hard.

On another happy note, four years ago today Katie entered our lives. She is my joy and pride, and I don't know where I'd be today without her. Such a wise person is enveloped in that little body... she amazes me with her beauty, strength and smarts. (No... I'm not a proud mommy at all!). Happy birthday, sweetie!

I'm going to strangle a nurse

OK, so now I can vent. Sadie's nurse yesterday was completely incompetent, so it was a really long day. She spent most of her morning watching the Today show, followed by the View. When something really good came on that she wanted to see, she left Sadie and the little boy next door and went somewhere more quiet to watch. I was horrified to see the little guy's stats falling, and couldn't find her anywhere. I got another nurse to cover the first time. The second time it was Sadie's alarms sounding, and again, she was off watching TV. She came in flustered, messed with the heating element alarm, couldn't figure it out and turned it off. Then, because Sadie was congested sounding, she started thumping her chest - DIRECTLY on her newly opened wound (they had to reopen it because it was beginning to look infected). I managed not to beat the crap out of her long enough to get the head nurse, who shoed her out to lunch. The head nurse (who I really like) promised to stay on her the rest of the day.

To make my day even better, the Incompetent Nurse came back, and because she was "forced" to take care of her patients, spent the day with us. The woman was insane. Talking to herself. Rocking. Twisting her hair like mad. More than twice I caught her in total lies about her care for the two kids she was watching. At the end of the shift I told the head nurse that if she ever came near Sadie again, we would have a throw down. I can handle crazy. I can handle incompetence, even. But not with Sadie, and not right now. I felt even worse for the little guy next door, who's much more critical at this point and didn't have parents there watching out for him.

So, that was my fun day. Luckily Jane, one of my favorites, was on last night, and Sadie's stats have been fine. I think it's funny how the competence of the nurse relates directly to how their stats are. Tells you something.

On a brighter note, Sadie's chest drainage tube came out yesterday. The cardiology assistant asked me if I wanted to keep some for her scrapbook. Ewww. But, since asked, I said "sure." I have no clue what to do with it.

Sadie's also off the heater now, and covered in blankies and a hat. Too cute. Her swelling is going down fast now, and it's wierd to see this new baby emerge from underneath all that edema. And the foley was taken out yesterday and she's pooping and peeing up a storm in her diapers. Hooray! You know it's a sad story when a mom is so thrilled at the prospect of changing diapers in a few days. With this baby, I don't think I'll ever begrudge the diapers, late night feedings or other things that tend to wear you down in the early days. It will be a treat just to hold her.

Grrrr...

I can not wait to write my real blog today. I soooo need to vent on some things, but just can't do it at the moment. It's been a long day and I'm pretty cranky. I had hoped to work some, since we have some quiet time, but no such luck.

Poor Katie is home with Jason today - she has a urinary tract infection and is feeling awful. I feel so badly that I can't be there to comfort her.

Sadie is doing ok. She got her chest tube out today. She's still having some issues, but many of these relate to said issue above that I can't really write about right now. Basically, it's not HER, it's her care. She opened her eyes for a long time today, and every time I opened my mouth (this game started with a yawn) she'd open hers, too. I was totally thrilled about that. It may come in handy when we start teaching her to nurse.

A minister from my parents church came by this afternoon who has a son that was here with a heart defect, which was nice of him. Gethsemene (my parents church) has been so kind to us, offering support, visits, offers to help and prayers. Thank you all.

More later.

By popular demand

I've had a few requests regarding previous posts and general questions, so I'll try to knock them all out here.

1. Posting comments: I finally figured out what was wrong. I've never used blogger.com before, and didn't realize there was a setting I could change that would allow anyone to publish posts without "logging in". Sorry to those of you who previously tried to post and had problems. It SHOULD be fixed now. Let me know if it's better.
2. Contacting us at the Hospital: We're in the PICU for at least 3-4 more days (most likely through Friday). When in here, we don't have access to our cell phones, so if you want to reach us, please call 434-295-1885. We're in room 87. If not in here, you can reach us on our cells. Please don't send mail here, as we don't expect to be here much longer!
3. Why the Ronald McDonald House sucks: I've had a few requests for an explanation on that one. The McDonald house is a great concept - giving parents and siblings an inexpensive place to stay when sick kids are in the hospital for extended periods. Considering most hotels here are ~$139/night to be close to the hospital, the cost adds up quickly when you're here for a month or two. Unfortunately it's the implementation that is terrible. Some families staying in the house have kids with colds that they allow to roam freely to spread their germs. You have to clean your room and shared bathroom yourself - but most of us are there to sleep, shower and leave. There's shared everything - kitchen, the 3 tvs in the house are shared by 16 rooms of people (most have at least 2 per room). The hours for various activites are not condusive to the families staying there. For example, there are laundry facilities available - from 1 p.m. to 8 p.m. Visiting hours at the hospital are 9 a.m. -9 p.m., so most families are at the hospital during those times. Duh! "Quiet hours" are 9:00 p.m. to 8:00 a.m. There is one computer in the house for internet access. It can be used between 10:00 a.m. and 9:00 p.m. Most of the time, however, the staff forgets to put back the keyboard/mouse that they take away during night time hours, so there's no access. The rooms consist of a bed, chair, picture on the wall, mirror and a nightstand. No dresser. No TV. No radio. Nada. So you can use your room for sleeping, but have no desire to use it for relaxation. The bathrooms are shared. I won't go into details as to why, but this is not fun for a post-partum mom - and many of the families there have premies/newborns in the hospital. There's a "gameroom" and "playroom" for kids, but the toys aren't very sanitary looking and I don't like Katie playing with stuff the sick kids have slathered with their germs. There are "rules" galore - no drinks in your room (this is great, again, for post-partum, nursing/pumping moms), no food/snacks in your room, wash your towels every two days, take out your own trash, clean the "shared" bathroom every time you use it, etc. My favorite rule is that you can not turn on the washing machines yourself - you need to ask a manager to push the button for you. I was reprimanded for that one on one of my bad days and, needless to say, that manager got an earful about what I think of their "house rules." Personally, I had a hard time with it because I don't like to "share" the experiences we're having with others. Everyone likes to talk to each other in the communal kitchen - how sick their kids are, bad days, good days, how to handle the "outside" world while here, etc. I just don't want to. I want to go in, get my peanut butter sandwich in peace, and leave. I've discovered I'm a very private person about this stuff - I do better writing about it than talking, and I don't want to share my day-to-day coping (or lack there of) with strangers. The McDonald house is a great idea - but like many great ideas, its implimentation kills its value. We've found a reasonable rate at a hotel that's 2 miles from here that we're "moving" into tomorrow, and I can't wait. So, that is why the McDonald House sucks, thanks for asking. :)
4. The type of surgery Sadie had: Sadie had an arterial switch operation. There are older methods out there (Mustard/Aortal Switch), but this is the newest one and, they believe, the best "fix" available. Basically, they cut the aorta and pulmonary right above the valves and switch them. Then they cut buttons around the coronary arteries (which are only 1 mm in diamater and supply the heart with the blood it needs to function) from the aorta and attach them to the pulmonary vein. The coronaries carry the biggest risk in this surgery, as if they are kinked or damaged in any way, they can lead to cardiac arrest. With Katie's she also had to have the ductus (the vein going from one side of the heart to the other that infants use to oxygenate the blood prior to birth) tied off as it had been kept open with the use of prosteglandins to ensure additional circulation prior to her surgery. She also had her ASD (the hole between her atria) covered with tissue from a donor. She, of course, had to have a lot of blood transfused during the surgery to prime the heart/lung bypass machine. Her VSD (the hole between her ventricals) did not end up having to be plugged as it looked small and muscular, and will most likely repair itself over the next several months. They did not have to do the preventative dialysis tube as they had discussed with us, because her kidneys began to function pretty well in the 24 hours before surgery. So far, the kidneys still look great! So, there is a lot that is in Sadie that was donated from others. Which reminds me to remind you - if you are can and willing, please give blood and register as an organ donor! The gifts from others of blood and organ donation have saved Sadie's life.
5. Meds she's currently on: I have no idea why some of ya'll keep asking about this, but will answer it in one swoop so I don't have to reply to as many emails (yes, I'm lazy at this point!). Sadie came back from surgery only on Epinephrine (for blood pressure) and Fentanyl (for pain). Since being back they've added Milrinone (improves the heart's ability to pump blood to the body by increasing Ca), Potassium (which is being deplenished by the Lasiks) and Lasiks (which makes her pee, to rid her body of the build up of toxins and fluids). She occassionally receives bolsters of Fentanyl (she's at 4 mcg/kg/hr on drip) and Versed (to calm and reduce bp when it skyrockets). They will be weaning her from the Fentanyl in the coming days and slowly replacing it with another class of pain killer. There are withdrawal symptoms that are highly likely with the Fentanyl wean, as she's been on it for almost 2 weeks.

So, there you go, your favorite questions answered. Fun stuff.

Sunday

Katie's drawing of Sadie

(notice the hairdo - she captured it well!)

Sadie is still doing pretty well post-op. One of the cardiologists came in today and remarked about how beautifully she is doing considering all the issues early on. She is awake quite often and very alert. The nurse today put a mobile above her, and Sadie's been staring at it whenever her eyes are open. They are still keeping her very sedated, so we stay quiet and try to keep it dim in here so that we don't arouse her. Every time we touch her or talk her bp goes wild, so it's hard to restrain ourselves from touching and talking.

I've seen her "sad" face several times now and it's enough to make your heart break. Her little brow furrows and she tries to cry through the ventilator and I'm just dying to pick her up and comfort her when it happens. Poor baby.

The good news today is that her vent will come out either tomorrow or Tuesday, depending on how much swelling goes down. They don't want to excubate (sorry, my medical spelling is terrible) until the swelling is down - today shes's at 4.41 kg, and she needs to get back down to around 3.5 (her birth weight) to ensure that her lungs do not have too much pressure to work against. She's breathing well with the vent, and is back on TPN, which is a nutritional supplement to her IV. Once they remove the ventilator she'll have a new tube put in through her nose into her lower intestine and will once again start receiving breastmilk (which is good, since the nurses informed me that I've run out of freezer space here to store it.) They've been upping her pain meds today (Fentanyl) and are giving her potassium and calcium, as she's voiding quite a bit today, and needs a bit of a boost.

Once Sadie's vent is out, things will start moving rapidly - the chest tube will come out shortly after, and then we will be able to hold her for the first time. I can't wait for that moment. It will most likely happen by the end of this week. By the weekend she will most likely be moved out of the PICU onto the "floor" - meaning she's non-critical. She'll probably be on the floor for 7-10 days then (FINALLY) coming home with us. There's finally an end in sight, and I can barely contain myself. I wish I had a fast-forward button to get us there sooner.

The morning after

Sadie is doing GREAT! Last night they took her off the epinephrine, and her blood pressure (which it regulates) has stayed fairly stable. She's started to try to breathe over the ventilator, which is good. Today the'll review the x-rays she had this morning to start talking about removal of the ventilator, which could happen as early as Monday. I can't wait to see what she really looks like!

I stayed in the hospital with her again last night, just because I'm nervous despite everythign going so well. It just all seems too good to be true after all we've been through the last (almost) two weeks. I actually slept - a LOT - maybe 7 total hours. I feel so energized this morning that I don't know what to do with myself. The PICU nurses are all trying to shoo us out for the day - it's going to be a pretty one here. We may just take them up on it. Once Sadie moves to the "floor" (post-PICU) we'll be with her 24-7, then home, so this is our last chance for a long time most likely.

I have lots of new fears cropping up now - but all good ones. Like I'm nervous about the first time I hold her - will she want to be held? Or will she be used to the lack of stimulation? Right now her bp goes crazy if you touch her. She hates it. Will she learn to nurse? How will I handle her at home, on my own? I'm sure it will all come together... it's just that after having her so sick since birth, I'm nervous for the first time about being a "real" mommy to her.

Our families were with us all day yesterday, and I can't thank them enough for their support. It really helped us through it all. You should have seen us all in the waiting room after we found out she was ok. I'm not sure how much Katie understands of it all, but we've told her Sadie is ok now, so I hope she doesn't worry as much. She has been VERY worried and telling lots of people that she wants her sister to get better.

Thanks, again, to everyone for their thoughts and prayers. Keep them up - Sadie is doing very well, but still has a long way to go.

SURGERY IS OVER!!!!!!!!! 1:30 P.M.

Sadie's surgery is over! It went better than we could ever imagine or even hope for. She looks great, came back on only painkillers, O2 and some anti-coagulates - we had expected more. Not to mention they closed her chest (we had been prepared for it to be open), her stats are doing pretty well (bp is a bit low... but not bad). We just can not believe how good she looks. The chest wound is minimal, and should heal to just a pencil line. She's still a bit blue, but it's to be expected. They're talking about taking out the ventilator in a few days if all continues as it is now.

I can't even begin to say how happy we are. We don't know what to do with ourselves. It's this huge rush of adrenaline and relief. Thank all of you for your thoughts, prayers and positive energy - our little girl is doing great!!!!!!!!!!!!!!!!!! :)

Some photos

The Mohawk Look. It will be all the rage next year. :)








Caught with her eyes open. It just happened this morning - it was great to catch them - even if they were on their way shut again.








Another of her new 'do.








Last week - with slicked down hair. She was soo puffy then. You can see from the photos above she's looking much better now - more color and less edema.

Thurs Night - The eve of surgery

Sadie has had a busy day. The morning started out with the replacement of her arterial line in her neck. They had put it in yesterday evening, and had not sutured it, so it came out a bit. They had to come in and redo it - this time with 3 sutures to ensure it didn't come out during surgery. I was in here for the procedure, which probably wasn't smart on my part, but I haven't wanted to leave her all day. Right as the dr was finishing up, a nurse came in and said Katie was coughing in preschool and had to leave because it sounded bad (she's in the preschool here at the hospital for now - it's for patients and siblings 3-5). So I freaked out and got over there, just to find out they'd sent for the wrong parents - Katie was fine (thankfully - I was in tears thinking she was getting sick too).

I left Katie to play longer, and got back to Sadie's room to find out that an echocardiogram was next on the schedule. They were searching for her coronaries to make sure that they looked good for surgery tomorrow. The echo guy said he thought they looked good, but when quized further said he couldn't get a good picture of the left one. He left with a promise that I'd know more before end of day. It's officially midnight, and no word on that.

Meanwhile, we've been looking deeper into the situation regarding Sadie's kidneys and whether or not she should get the preventative dialysis tube. The surgeon says no, but several drs here disagree, as well as some nurses. I addressed it to their (the cardiology surgical team's) nurse practitioner who told me they'd made the decision not to do it. I don't feel good about it, and they promised I'd speak to the surgeon today, but haven't seen him. In fact, I've never met him. It makes me even more nervous. I know he's crazy busy, but I'm worried and no one seems to be addressing the fact that we, as parents, have the right to know the reasoning behind it all. The NP said that they talked to some renal specialists, and they concur... but I still want further reassurance.

By this point I had a killer headache/migraine type thing going and took Katie to McD's House for lunch/laundry/nap time. Don't even get me started on McD house - that place is terrible. Once this is over with, they'll be getting a piece of my mind. We want to go to a hotel, but haven't had time to really look into the best place to camp out for the coming weeks. Maybe tomorrow while we await news and have nothing better to occupy our time.

Katie's been a saint during all of this, and loves her little sister so much. She draws these adorable pictures of Sadie - gives her black hair that sticks up all over. :) Tonight I had to call Mom and Dad to get her, though, because I just don't want to leave the hospital.

Tomorrow AM first thing is surgery, and I'm nervous. I eat whenever food is put in front of me, but can't really get into it and would forget if not reminded. My stomache is a mess and I can't seem to focus on anything. I'm teary, but can't get a really good cry in. I'm - in general - a wreck. I can't wait for it to be overwith. At the same time, I dread the thought of what she'll go through tomorrow and in coming days. I wish I could take it away from her.

Sadie was much more alert than I've ever seen her since I've been here tonight. At one point she had to be suctioned again, and I was beside her, watching her cry, which tears me up. Then she reached out and grabbed my hand - hard! I couldn't believe it, and I'm taking it as a sign that things will be ok tomorrow. A short while later she opened her eyes and really looked at me (a who-the-heck-are-you, drugged daze, but whatever, I'll take it). It's those little things that keep me going, and give me faith that she'll be ok through all of this.

Please stop and take a minute (today, now) to think of Sadie and send some prayers/positive energy her way. We expect her to be in surgery from about 7am - 3pm. The first hour will be sedation, second hour will be hook up to the bypass (lung/heart machine) and third will begin the surgery. She will have the transposition reversed, coronaries reattached, ASD (atrium hole) plugged, VSD (ventrical hole) plugged and her ductus tied off, as it has not closed. So much stuff for one little girl, but she's tough and a fighter, and we know she'll be ok.