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.