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!

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!

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.

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. :)

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!

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.

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!

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!!

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!