Wednesday, January 2, 2013

It's a BIG one.

2013. How did that happen? It sort of feels like I'm still stuck in a spot where Lou was just born and Jack hadn't ventured out into school at all.

That, by the way, turned into a TOTAL shit show, which is generally why I haven't been writing at all. I've been consumed in my own personal thought vortex.

I pulled Jack from public school permanently on the 30th of October. All of those things they offered to help him transition? They didn't follow through with a single one. Not even a little bit. They just kept saying "You need to have him assessed" "Is Jack's doctor a pediatrican or a family doctor, there's a difference you know" "He doesn't understand anything we say" "He's licking everything" "He's started pushing kids" and finally "He punched another student in the face today". 

That was the last straw. Jack is probably the least violent kid I've ever met. He's wild and loud and crazy, but he's not mean. Not like many of the other children I've seen go after him. He's not a hitter or a biter or a pusher. I couldn't believe it. That was NOT my child.

As it turns out, he didn't actually punch anyone. He was playing too closely and accidentally bopped a child his teacher had said Jack was "fixated" on. His class' ECE worker used the words "punched with force and intent". His teacher said it was an accident after I had already withdrawn him. They were completely out of sync with each other. And with Jack, as well.

It was a constant parade of "Today was bad because" when I would go to pick him up. They never said a nice word about Jack. It finally occured to me that they were never going to see anything other than whatever they had cemented in their minds about him. They thought he was autistic and that was it.  I was an idiot who was unwilling to see the truth, and no one was going to help us without a diagnosis.

The public school system does nothing for children who are struggling in this type of environment. No diagnosis, no dice. They string them along and label them trouble makers or throw them in special ed (which may or may not be appropriate). I was beyond frustrated with the lack of assistance and the poor and pathetic "protocol" given for keeping him in school. The final word on it all was this:

There's nothing we are willing to do. He's completely unsuccessful at all aspects of classroom participation. But he's always welcome.

Fuck. You. That was my only thought.

Great. He's welcome at school, only you're not going to give him any extra help, or guidance... so he's basically welcome to flail around until his parents get so frustrated they simply remove him, thereby eliminating "the problem". Brilliant dance, isn't it? They had flashy, practiced and prepared speeches every time I went in, too. I recognized this at the second meeting with the VP. Who's parroting now?
Free and appropriate education for all? All except Jack?

I went to our pediatrician again to talk about this and she offered to have us come in and go through a type of psychological assessment that would uncover what, if anything, is going on. On December 12th we did. The main reason we were sent in was because the autism questionnaire that the teacher completed was chock full of check marks and with Jack's identified language and sensory issues, it would be unwise to leave ASD (autism spectrum disorder) unassessed.

By the time we had the appointment, I had convinced myself that he probably did have ASD. He has a lot of quirks, and a lot of them fit in on the spectrum. Ultimately, at this point in time Jack has been cleared by the professionals as having "no signs of autism spectrum disorder" though we'll be looking into this again if the need arises. He has been diagnosed with anxiety and what looks like ADHD.

After this horrific first experience at school, and needing so badly to be around other kids his age, I went searching. We toured private schools. Almost all the private schools in the city. There were two we didn't check out. There are lots of great options for kids out there! But holy balls. So expensive. We are making a pretty huge sacrifice in doing this, but we have enrolled Jack in a Montessori school. He is excelling. He's making friends, he's learning all sorts of new things, and he's SO HAPPY. You know those terrible tantrums? He doesn't have them anymore. Licking things in class? Nope. He's not. He answers the teachers. Using real phrases. At his new school, Jack's biggest problem is not using his inside voice. How very rare in a 4 year old boy.

There will be much more about this issue. I have a lot of steam to blow off about the entire series of events. It will be ongoing I'm sure, and I don't know where we'll end up. Treatment, and therapy.... oy. But we've seen worse than this. This isn't life or death. It's really hard, though.

Lou did great after her surgery. It was literally like 10 minutes. No biggie. She has a perfect little foot now, and you can't even tell she ever had anything extra happening. She's getting big so fast! She's moving and laughing and chatting away. She's a very strong girl. She's a puker. Reflux, all the way. So gross. Jack was the same way. Quinn, thank goodness, never spit up like the other two. She wouldn't have done so well if she had.

Poppa and Jack

Besties for life.

A true gummy. 

Quinn is doing really well, too. She's speaking fantastically, and is exactly what you might think a two and a half year old girl would be. Spunky and loud and sneaky and highly emotional. She had her first hair cut the other day. She got a bob. It looks awesome.

The holidays have been very busy and very exciting, but I know the kids and I will be glad to get back to routine. Here are some photos of the big morning. Jack and Quinn were pretty spun.

That's it for now. Happy New Year!

Sunday, October 21, 2012

The surge continues.

Where to start? That is the question after such a long absence. I think it's impossible to pick a place to begin that would feel "right" so I will simply deal with the "biggest” issues we are having at the moment, and hopefully, from there, things will fall into place.

Lou was born three and a half months ago now. She is absolutely healthy, and is a pretty awesome baby. However, she is having surgery on Wednesday. Why you may ask? 

Yeah. Of course. It had to be something, didn’t it? Stuck to this wrinkly and gloriously perfect foot is this thing. I guess we’ll call it a toe. This is not really a big deal, but she still has to go under general anesthesia and it’s still a night in the hospital. Also, since Quinn had her CDH repair, it has come to light that there may be risk of malignant hyperthermia in our family. This complicates things considerably. Normally, they would do much of the surgery prep (like IVs and other unpleasantries) under the influence of gas, giving the baby no recollection of the process nor pain to endure, either. When MH is in the picture... it’s not so simple. There are different drugs that have to be used, and gas is not an option, so getting the IV in is going to be a fight, and it’s going to be heartbreaking. Thankfully (or something like that), I am well versed in watching medical personel do horrible, albeit necessary, things to my kids so if it has to be someone... why not Lou and I? We’ve dealt with bigger things than this, but it still hurts just as bad watching them roll your baby back for surgery. I’m hoping for NO complications. I would literally crumble. We’ve been having a really hard time in our household these days, and anything out of the ordinary would be absolutely more than I can handle.

Jack started junior kindergarten on September 5th. I was so nervous and excited for him. He has suffered so much at the hands of the CDH monster and this was finally going to be his time to shine and grow. I knew he’d be so excited to meet new friends and would come home talking about all the things he had learned and done. What an amazing new journey it would be. How great it would be to finally get to know Quinn on her own and to see how she would grow into a big sister, and a big talker.

She has by the way. She is doing so amazingly well with talking. 5 word sentences, most of them quite clear. After being so worried for her it has been great to see.

On Jack’s sixth day of school, he had a pediatrician appointment. His 4 year well check and vaccinations. I went in the morning to pick him up and met his teacher for the first time. I casually asked “So how is Jack doing?” expecting to hear “He’s doing great! He’s smart and funny, and he’s getting to know a few kids, too”. What I heard next has shaped my days since. Shaped them with confusion, worry and helplessness.

I was going to call you. I think we need to talk about Jack. He’s not doing so well. 
It literally felt like someone punched me in the stomach. I tried to blow it off with an “Oh I thought you might, he’s a little wild”. He is. I know this. That isn’t what she meant.

She started telling me about how unusual he was behaving in class. That his language use was not normal. She said it was very concerning. She said he was parroting everything she said in class, that he has unusal voice tone and quality and that he wasn’t able to answer questions or maintain conversations. She pointed to Autism, though stated she wasn’t a professional. She said I need to talk to the pediatrician immediately about this.

I. was. floored. Jack? My chatty, friendly, social little dude? I was confused and lost in the spiraling thoughts that were flying through my head. I said “Okay. I’ll see what she says” and just kind of left.

As a side point to any teachers reading... blindsiding parents with “Hey! I think your kid could be Autistic... good talk!” in the hallway on day 6 of junior kindergarten isn’t a great idea. You know, unless you want to alienate the parents entirely, and make them question returning their child to your classroom.

The long and the short of it is that the pediatrician vetoed Autism, and diagnosed ADHD. She asked if I wanted a prescription to manage it, and referred me to some websites for information.

Is this real? Is this what people do? Just accept the diagnosis immediately, medicate the 4 year old and learn everything else from a website? Huh. Who knew?

I was fairly dissatisfied with the entire series of events. Not to mention that though many of the characteristics fit Jack, it didn’t “feel” right. Jack is able to focus well for long periods of time. It has to be the right activity, and it has to be a quiet and peaceful room, but he can do it. I couldn’t quite see ADHD fitting him exactly and it’s a pretty big label to firmly attach, especially at 4 years old.

What I did agree with whole heartedly is that he needs speech and language therapy. The school had talked about it for a while, but hadn’t made any moves at all. It was mid October and it had been a month since we were told the permission form for the pathologist would be coming home. We sought out private therapy.

We continued to get unfortunate news about Jack, never hearing anything good, and generally feeling worse and worse about sending him to school. I finally sent an email to his teacher asking if he was having any success at all, in any area. I got no response.

Then Jack got his ass kicked in the JK compound. I watched it. Little pricks. Two boys walked up to him the second he got there and started spitting in his face and stomped him until he hit the ground. The two teachers on guard duty missed the entire thing because they were chatting up other parents. I had Quinn and Lou with me, and I was at the end of the area totally unable to get to him. I weaved my way up to where he was and called him over. I made sure he was ok, and told him to tell the teacher if that happened again and to yell GET OFF if they came near him again. I called the VP, reported the bullying and they looked into it right away. I went to his class to get him, and observed for a while. The child I saw was not my child. He was another kid. I had no idea it was so bad. I see why the teacher was concerned, and I told her that. I also told her this was atypical of Jack. She said she found that very hard to believe. I asked her again if he was succeeding at anything, and she stared at me blankly, and didn’t answer. I took him home, and felt defeated.

Jack sold the kids out, but I am fairly certain nothing happened to them. The VP made it sound like the one kid had been doing this nearly daily to other children too and that it was the end of the rope for him. He was in class the next day. Jack grabbed his hood and pulled him to the ground. He also scratched another boy. That was Jack’s last day of JK.

Since then, we have had Jack’s language evaluated, and the pathologist identified a language processing disorder. He has trouble ascribing meaning to some concepts of language. This is treatable with therapy. It also presents like ADHD with nearly all the same symptoms, so it’s entirely possible that he doesn’t actually have ADHD. Unfortunately, busy, noisy environments make it almost impossible for him to process language properly. A JK classroom is a busy noisy environment that he is very overwhelmed in. Things are going to look pretty tough for our little guy until he gets some time and therapy under his belt and it seems he has a few other things going on as well.

Shawn and I suspect he has a sensory processing disorder as well. He is a sniffer, a licker, a chewer. He does wild things. He will hang off of the side of a chair, and drop himself purposefully onto the floor. He jumps on the spot. He loves leather, and soft trims, and silk. He has tantrums we can’t seem to source and ends them abruptly with a sigh and “I feel better now, mommy” never filling us in on what he is feeling. It’s SO MUCH. Some days are really hard.

We had a meeting with his school after I withdrew Jack, and they really brought out the big guns. They are offering to give him weekly speech and language therapy, and they are getting him an EA to help him transition to school life better than he has been given his issues. We’ve agreed to bring him down to 2 hours a day for the time being, as a trial. I’m skeptical but I have to try. It’s not fair to him to not try it. Though I am concerned with sending him back to school with a teacher who doesn’t understand him and already has him pegged as a specific type of student. I want him to be considered fairly and appropriately. I want them to keep an open mind. I want him to feel encouraged. I hope these things happen. Life is not great right now. I am both defensive of and frustrated with our wee man. I battle with myself between feeling the mama-bear wrath when it comes to others judging him and feeling irritated and confused over my own experiences with him. At the end of the day I love his little soul, and that’s all that matters.

Who ever thought Quinn would be the kid giving me down time? And she had pneumonia in the middle of all this! She recovered perfectly, by the way, no need for alarm.

Anyway, this is why I’ve been MIA. There has been so much happening that I’ve felt too overwhelmed to write. I have decided that if CDH is worth documenting, then this is too. This is a big deal. This effects his entire life. We have to make the right moves and get him the right help.

Tuesday, October 2, 2012

Snuza Giveaway Winner!

Drumroll, please...... :D I am about to make the announcement for the Snuza Hero draw!

The winner is Britt!!! Here is what she had to say about the Snuza Hero:

"My sister recently lost her first born to SIDS this January. She is now expecting a rainbow baby in May of next year & has talked about the Snuza. I went online to do some searching of this product & found this would be perfect for her.

She would have peace of mind, and get a little more sleep at night knowing her baby is constantly being monitored. Thanks for the chance to win!!"

Congratulations, Britt! You have 24 hours to contact me before I move on and draw another name. You can contact me through my blog profile, or right here on Facebook with your info!

Thank you to everyone for reading about the Snuza. I really hope it helps to save more babies every day.

Tuesday, September 25, 2012

Snuza Hero Review and Super Giveaway!!!

I was sent a Snuza Hero baby monitor to test and review here on the blog. I wanted to give it some time before I relayed my opinion, but Lou is now 11 weeks old. I think it's time!

As you can well imagine, having a baby who's lungs were so fragile can make monitoring their breathing a priority. We were given an Angelcare movement monitor when we had Jack, though it took us several weeks to set it up, and actually USE it. It worked well, and we did set it up when we brought Quinn home as well. There were, of course, a few drawbacks...

First, it alarmed all the time. The babies were always fine, but if they rolled off of the mat and into the corner of the crib, it would sound off. Second... and most annoying... I would ALWAYS forget to turn it off when I picked up the baby in the middle of the night. Piercing alarm at 2am... not so good for dozy child and mother. Thirdly, it can only be used in the crib. No other sleep area was covered.

The Snuza definitely brings a new level of mobility and portability to monitoring movement. You can carry, swaddle and rock the baby with it on. You don't have to worry about turning it off if you take the baby out of it's crib, and you can use it on any sleep surface (excluding the car, swings and bouncers, of course). It's even been approved for use with multiples that bedshare. That's pretty awesome.

Lou, hangin' out in her undies.
 The Hero model that we tested vibrates when it hasn't sensed movement in 15 seconds. If movement hasn't been detected after that, the alarm will sound. Simple enough.

It clips onto the front of the diaper your baby is wearing or a pair of sleep pants. There are teeth to ensure it doesn't shift around. The sensor is very soft and flexible, so I didn't worry that it would be uncomfortable. The only problem I had with this is that the cloth diapers we use are a tad finicky to use with it. It's doable, but it's a little tricky to detach it from a thicker terry prefold. Other cloth diapers worked fine. Since an overwhelming percentage of the population use disposable diapers, this is hardly an issue, but for us it made the device a little bit harder to use. Anyway, a picture attached to a disposable (which we do use on occasion).

Convenient storage case.

We did not have any false alarms when using the Snuza. That was huge. I found that sometimes when Quinn's breathing was very fast and shallow (which it was when she was small) the Angelcare sensor would miss her movements completely, and we'd get the alarm. It was stressful. Also, you cannot use a ceiling fan combined with the Angelcare monitor successfully. Uh... I love my ceiling fan. The Snuza works with fans just fine.

These things combined with the portability make the Snuza Hero* something I would definitely consider ideal if you are concerned with monitoring your babies movement, but don't want to deal with false alarms or fumbling in the night with a switch on a monitor.

AND... Snuza has graciously offered to send a Snuza Hero monitor to one lucky reader! Aren't they the best? That's a 130 dollar value, just for being a devoted follower.

 Here's how you enter:

  1. leave a comment on this post about why you like the Snuza Hero concept (and follow my blog, if you like!)
  2. Like Us & Ours on Facebook AND...
  3. Share the review and giveaway link on your Facebook page!

    It's a quick, 3 step process. :)

Earn a second entry in the draw:

  1. Share in a Facebook group with a pregnancy or parenting theme. OR...
  2. If you are the first to share this giveaway in any pregnancy/parenting forum you frequent, you'll get yet another chance to win, just comment here with the link to your post.

The giveaway is open until 9pm EST on October 2nd, 2012. That's a week to get your entries in. I'll announce the winner on the blog, as well as on FB. Winner has 24 hours to claim the prize and then I will move on to the next person. I will use a random number generator to obtain the winner. Each entry will be assigned an independent number.

That's it. A few clicks and you're in! Thanks for reading. I will be blogging a lot more now that things have settled at our house, and there will be more giveaways too! Keep watching for them.

Ahh. It's good to be back.

*Snuza has renamed the Halo to Hero since I have received this monitor. It is the same device.

Look here if you think you'd like to know more about Snuza, and to find a stockist in your area.

I was in no way compensated for my opinion of the Snuza Halo* baby monitor, apart from being sent the device itself. These opinions are my own and I offer them only to help those who share similar concerns for their children make decisions about choosing and purchasing infant care goods. I assume no responsibility for accidents, or misuse.

Wednesday, August 1, 2012

The Home Birth of Lou

After a long abscence, I come bearing a birth story. Our third child, Lou Ella Talbot, was born on Sunday, July 8th, at 2:45pm, after 10 (noticable) hours of labor. She was 22" long and weighed 11 pounds 3 ounces. I was 40 weeks and 6 days pregnant.

I believe this all started about the time I decided to go to bed, just after midnight on July 8th. I became... irritated. Highly irritated. Scarily irritated. Threateningly irritated. I went on an angry, rant. I swore like a sailor, I said unsavory and ridiculous things. I was DONE being pregnant. Lou and I were having a showdown, and I was determined to win.

Shawn became wide-eyed and alerted to my obvious hormonal change and said "ok".
I went to bed feeling a little lighter, but not hopeful that Lou would actually be arriving in any timely fashion. She was already 6 days late, why not make it 20? I was convinced she was never coming out. At around 4:30am, I began to think differently.

I woke to a horrible burning sensation in my lower back. I grabbed the heating pad, in attempts to ease the pain but it did absolutely nothing. I got out of bed and leaned over the side of the mattress for about 15 minutes. The back pain went away and promptly turned into regular contractions. I tried to crawl back into bed to get a bit of sleep, but that was not going to happen. At about 5:45 I ran a bath and thought that it would knock the contractions out and then I could get back to sleep. It did not. They quickened in frequency and intensity, and I decided that it was definitely time to call in the troops. I was going to try for a home birth, after all.

I called my midwife and my parents, and eventually my sister, and they headed over as soon as they could. Shawn had fallen asleep downstairs and didn't realize I was in labor until he heard the bath draining, and came up to see what I was doing. By the time everyone arrived it was 8:30. My progress was a very stretchy 3cm, 90% effaced.  It was happening!
The contractions were manageable at first, for about 3 hours, then they became a lot tougher. I had to focus hard and breath long and strong through them. I used techniques from my Hypnobirthing classes through every contraction, without even realizing it at the time. I was very much a "lone wolf" through my labor so I didn't want or need much help. Shawn did all he could, which was to run for me when I needed something. He ran good.

I didn't really want cervical checks through my labor. I didn't want to risk my water breaking, and honestly... just didn't really care about my progress. I wasn't feeling time like I would on a normal day, and I just wanted to exist in my labor and wait to feel when my baby was ready to be born. I had one cervical check after my initial assessment at about noon, and I was 6cm, fully effaced. I started using the tub after this, and spent some time in,  then got out to labor upright and rolling on the birthing ball. I loved that ball. I sat on that ball for hours and it was such a good friend to me.  It helped with the pain amazingly well, which is funny because I hated it when in labor with Jack. Standing brought my contractions closer together and harder so I also spent some time walking and leaning through them. Not desireable. But effective.

Yup. That was my life for about 7 hours.

I started vocalising through my contractions sometime around 2pm and knew I was getting close to transition. My midwife filled the tub again and suggested I use the water to deal with the pain, which for me.... was getting to be overwhelming. It was a GOOD hurt... but a very intense and BIG sensation in my body. It was pain, though. I couldn't convince myself that it wasn't. Hypnobirthing or not... it hurt.

I got in the tub and began to instantly regret it. The second I got in, the pain went from bad to worse. In retrospect, I know now that this was the very last bit of my labor, and the intensity was indescribable. Every time I turned the tap on to add hot water and it touched my belly I would get an enormous contraction. They were on top of each other. I went from very calm and relaxed to bordering out of control. I think it was a combination of changing my venue from swaying on the birthing ball to lying in a tub and hitting transition all at the same time, it was a lot of change all at once, and it overwhelmed me. My midwife told me later that the funniest thing I said the whole labor was in between contractions during transition. I stopped and said very calmly, "This is horrible." in a very matter of fact way. I wasn't saying anything during contractions, I just vocalized through them as well as I could manage, and tried not to wake my kids, who were napping at the time. Eventually, I didn't care if I woke them anymore, and knew it was getting close. My water broke 3 contractions before she was born. I started intuitively feeling for her head. My midwife saw this and said "I think you should push, do you want me to see if I can feel her head?". I said yes. She said "It's RIGHT there, Katie. Go ahead and push if you want to."

Then I started freaking out. I insisted I could not do this. I could not push her out. I wanted someone to help me. I wanted an epidural. I had made a huge mistake. What in the &$@% was I thinking? Why on earth did I want a natural birth? I was obviously insane.

I vaguely remember my midwife trying to reign me in and she finally convinced me to push. I gave the smallest, most miniscule push with my next contraction and DEAR LORD.... she was crowning.  I got the "Katie, you need to stop pushing now. " from my midwife, but my body did not care for that. I did not voluntarily push again, and her head was out! Lou decided to bring her arm out beside her head. Apparently, 11 pounds 3 ounces was not enough of a challenge, she felt I could handle an arm along with her big ol' head. After that, I just wanted to rest. I wanted to sit and recover before her body was born. The midwives encouraged me to birth the rest of her, but I didn't feel the need to push. Eventually, I did it anyway, and 2 pushes later, there she was, laying on my chest, screaming her heart out!

Backup midwife, Sarah, on left and my midwife, Carly on the right

Lou greets the world

 The relief of a cry.... That moment was so satisfying there isn't even a word for what I was feeling. The best I can come up with is total peace. I just felt silent, and light, and peaceful. I didn't cry. I didn't laugh. I just felt good, and quiet, and happy. Full of love.

"let me touch your face... hmm... you'll do."
Yeah... he knew. Look at Shawn's face... 11 pounds 3 oz!
 My kids were able to come in and meet their sister before the cord had even been clamped. What an experience. Who knew birth could be so good? It was so normal. I loved it.

I had very little bleeding and very little tearing (warm water helps a lot), only 2 stitches that were completely healed 4 days after the birth. My pelvic muscles however took quite the hit with a baby that size. Walking was quite painful for about a week. And frankly, the bruising was awful. Overall, I think I have recovered well. I did get mastitis on day 6 (ever had it? You feel like you are going to die.) but otherwise everything is pretty good.

Big, beautiful baby.

I was on a major high for about 4 days. Totally spun on how amazing (and HUGE) my new baby was, and how awesome the journey to get her here had been.  I'm so thankful to everyone that helped and made this happen for us. The support of the midwives and family members was so essential, and I will forever be grateful for it.

Welcome to the world, Lou.

Thursday, June 7, 2012

CDH: Round 2, Part Two

When Quinn was finally able to see us after her surgery, one of the anesthesiologists came in and said "Only one... mom, you come." I thought this was unusual, because they had told us about an hour before that we could go back in twos to see her. I didn't care to ask questions, I just wanted to see her as quickly as I could. When we got back to the recovery area, I could hear a child crying. It didn't sound like Quinn, it was a low, hoarse cry I hadn't heard before. I walked in, and sure enough, it was indeed our Quinn. And she was FIGHTING. She was fighting the nurses hard. She was standing. They were trying to get her to lay down, and she was having none of it. I walked over to her and hugged her and she stopped immediately, slumped into my arms and I slid her down onto the bed. I think the ladies were relieved to have me there to calm her down. I noticed that I had blood on me, and couldn't quite source it right away. Then I realized she had an IJ line (Internal Jugular Central Venous Line) and it was bleeding pretty heavily.

I'll be honest... that was some pretty gory viewing material. So much so that the underfed pregnant mama started feeling pretty loopy after helping calm the girl enough to get that padded and taped up. The nurses brought me a chair and a ginger ale. Bless them for that. 

 After she calmed down a little, I mentioned that she was likely going to need oxygen to keep her SATs up. She came out of surgery without it, but knowing how sedation seems to affect Quinn, I didn't think it was useful to try and get her to SAT normally right away. She certainly did need it, and stayed on it for the next 4 days. Quinn also had a large NG tube to drain her stomach, as it would be some time before her bowels started working again. Shawn eventually came in with us, and we got Quinn up to her room and settled around midnight. We stayed with her until 2am, and realized that we hadn't slept in about 40 hours. She was out. It was time to get some rest, so we went home for a quick sleep. 

When we returned at around 8 the next morning, Quinn was still asleep. Shortly after we arrived, she started moaning and crying "Owwwwwwwwww!!!! OH NO!!!!!!" without rest. It became clear that her pain meds were not working well enough. That may have been the worst part of this entire experience. She was gripping my arm almost BEGGING me to do something. She was panic ridden and scared. It was awful. Helpless. Once the morphine kicked in, she was peaceful and slept for the bulk of the next 2 days. 

After that it was all about small things to help her get back to normal. She received TPN nutrition through her IJ for 9 days. No foods at all. One thing after another started to come off. The catheter, then an IV, then the oxygen, and so on. It took time for her to bounce back. We could not eat or drink in the room with her, she would go crazy and clammer for a drink. It was so hard for her. Keeping her entertained was a challenge, though I truly believe that she dealt with being in bed all day extremely well for an almost 2 year old. She was hooked up to the suction on the wall so we couldn't really take her for walks or stroller rides. We waited for her to poop, which took 7 days! It was crazy and uncomfortable. Jack wasn't with us, once again. Ack. It was insane. 

On day May 10th we were finally discharged. We went home and had a happy night.

The next day, Quinn got sick again. She started the cramping and crying and eventually the vomiting as well. We basically rushed her back to the hospital, and she was readmitted for the weekend. She had an impacted bowel, so they cleared that, and again, on Mother's day, said she was ok to go home. So far, since then, everything seems to have been ok. We had follow up with the surgeon today and he says she looks good. Unless she starts vomiting bile and writhing in pain again (which means GO TO THE ER IMMEDIATELY), we'll see him next year for follow-up.

For now our girl is happy and healthy. If I'm honest, I noticed a change in Quinn prior to this surgery. She was very clingy, and didn't want to do anything other than lay with me for hours in the mornings. Getting her to bed was suddenly a huge chore, with much crying and upset. I think she is feeling so much better now. I'm really glad she had the surgery. It was scary, but we all survived it, and she bounced back amazingly well.

Sunday, May 27, 2012

CDH Round 2: Part One

I have never gone so long without blogging before. It's a very good indicator that things around here have been uncharacteristically hectic. I would say the last month has been one of the craziest in my life. Because of the varied and extensive information involved, I will be breaking this down into several blog posts over the next few days. You'll get all the info, but ideally in a more structured and orderly fashion than chucking it all into one enormous post. This is Quinn's first post discharge mini-series!

On April 30th, Quinn got very sick. It started in the evening when she wouldn't settle for bed. She was screaming in her crib, and not settling at all, regardless of any attempt at comfort from Shawn or I. She was writhing around, and quite obviously uncomfortable, but then she'd relax, and seemed to want back into her bed. 10 minutes later, the screaming and writhing would start again, and we'd go through the same routine, completely unsure of whether what we were experiencing was serious or just a really bad night for Quinn. At around 2:30 am on May 1st, she started vomiting. We spent the next few hours assuming she had picked up a stomach bug from somewhere or something, and thought waiting it out a little longer would be the best thing to do. The screaming and writhing didn't stop though, and she hadn't slept at all. That is not a stomach flu. My mom gut was screaming at me. Get her to the ER.

Since Jack was here sleeping, and I am heavily pregnant, it seemed like a good idea to send dad to the ER with Quinn. I wrote down all the things I was worried about, and asked Shawn to share my thoughts with the doctors at the ER. I wrote down the testing that I wanted him to get for her before he came home, just to be safe. My concerns were reherniation of the diaphragm, and bowel obstruction, possibly caused by malrotation. One of the two seemed incredibly likely.

They wasted no time getting our girl into a gown, IV'd and down for an x ray. After the x ray, the doctors ordered an ultrasound to take a closer look at an area of concern. They didn't know what was going on, but something didn't look right. They called her surgeon at this time, as well. When he looked at the ultrasound, he ordered an abdominal CT to get a better look at the issues he thought he may be dealing with. There was what looked like "free air" in her belly, and narrowing of the small bowel. There were thoughts that her appendix may be causing her trouble, as well. The thing is... they had no idea where her appendix was. People who've had CDH often have different internal anatomy than people without CDH, as the organs have all grown in a unique space.

She had also received a good dose of a very potent and generally effective anti-nausea medication. It didn't stop her vomiting, however, which was a pretty bright red flag that something was going very wrong in our little one's belly. Add to that, the vomit went from being food related, to green, and had been going on for 17 hours. This was enough for the surgeon to tell us he wanted to go in immediately. Within the hour. He asked us to sign consent for an exploratory laparotomy. He wasn't 100% sure what he would find, or what he was looking for, but it was obvious that something was wrong, and needed to be fixed.     

A few hours later, after an agonizing wait, and an even more painful goodbye at the OR, he came in to talk to us. He had found that Quinn's small bowel had a high grade obstruction, cause by adhesions from her first surgery, almost 2 years ago. These bands of tissue had tightened around her small bowel which resulted in pain and inability to pass anything through to her large intestine to complete digestion. He spent a lot of time removing scar tissue from all over her little insides, and also removed her appendix when he found it. In Quinn's case, a surgery for something like appendix removal isn't worth the risk of leaving it in there, so they removed it prophylactically. It did seem to be in decent shape, however. Additionally, her small bowel had looped up above her liver, which is why it looked like there was potential for reherniation on the test imaging Quinn had had earlier in the day.

Luckily for us, we caught the blockage before any infection or tissue death had started, so no bowel was removed or sectioned at all. Basically, Dr. Merrit said he was very, very happy to have gone in when he did, and that we hadn't waited on her symptoms any longer, as well. Overall, there was no way we could have gotten away without surgery, but luckily, none of the really scary side effects of bowel obstruction had started in Quinn at all. Regardless of how lucky the circumstances were, her recovery was still a long road ahead, and Dr. Merrit guessed Quinn would have an ileus for 2 weeks. This basically means that the bowel was extensively handled and traumatized, and would take time to start working again. When a patient has an ileus, they are not allowed to eat or drink, and also must have a large NG tube emptying their stomach contents constantly via intermittent vacuum. He said her hospital stay could extend to 3 or 4 weeks.

And so we began our second long hospital admittance with our feisty little cherub.

Monday, April 16, 2012

Surrender to the Journey.

I saw my midwife at the end of last week for that recheck of my belly size. I was feeling like maybe everything had worked itself out, and thought that it would be better this time. Turns out, it's not. It's actually worse. I am measuring 36 weeks pregnant. I am/was 28.5. Not good.

SO. What does this mean? It means that I have an in depth ultrasound next week to recheck the baby for defects, and to assess the polyhydramnios situation. Measuring over dates isn't a sure poly diagnosis. You have to have ultrasounds to confirm the excess water. They measure the pools of amniotic fluids, and if they end up being over a certain size, poly is diagnosed. The size of my belly could be a result of a large baby, or the baby's position too, though 8 weeks over is a little too much to assume nothing is going on, and my midwife nor I are comfortable leaving things unchecked. I lost 3 pounds.

Possible causes of polyhydramnios:

Could be nothing. It's nothing about 60% of the time. I remember hoping so badly that it was nothing last time.

Pregnancy induced diabetes. This causes the baby to urinate more and also to grow larger, as well. Thus, rendering mama measuring over.

Chromosome abnormalities. Some trisomies cause excess fluid production.

And of course... birth defects. There are lots of things that can go awry in a pregnancy, some are very serious like a CDH or a CHD (congenital heart defect) and some are easier to deal with.

Possible Risks of Polyhydramnios:

PROM (premature rupture of the membranes) ie- my water could break long before it's supposed to.

Preterm labour and delivery are a huge concern. If you body thinks you are 36 weeks pregnant, but you are only 28... that's a problem.

Cord prolapse is when the umbilical cord slips past the baby's head as the water breaks, and becomes compressed when the baby's head settles on the cervix. This is life threatening for the baby, as it prevents proper oxygen delivery.

Mothers with polyhydramnios are also more likely to have excessive bleeding after labor is over.

I have somehow coaxed myself into a fairly relaxed state this evening, and that's why I am finally updating the blog. To be honest, it's very difficult to be going through the same motions as I did with Quinn during this pregnancy. I wouldn't trade Quinn for the easiest birth and newborn experience in the world. She is worth every second of worry and fear. The experience itself has seriously scarred me, however, no matter how happy and normal our days are now. I am on high alert. I am emotional and I overreact. Sure, that's pregnancy in a nutshell, but adding this constant sense of concern and uncertainty to the usual ups and downs is paralyzing at times. It makes doing a load of laundry overwhelming. It makes deciding what to have for dinner a puzzling thought. My mind is spending so much energy on worry and concern that I don't always have a lot left for the everyday things that need to be done. The roots of it are definitely in anxiety.

This is the shit you don't think about before you get pregnant. I always assumed if we had another child, it would be challenging to go through a pregnancy again. Even a usual pregnancy, with no cause for concern. Never did I think we'd be following the exact same path (almost to the day) that we did with our little chicken. All we have to cling to at this point is hope and faith that things are going to turn out well, and that there is little we can do but ride the waves at this point. Positive thoughts are hard to come by sometimes, though I think them and wish for them to come to fruition every day.

Thursday, March 22, 2012

The Confidence Assailant

So much has happened since the last time I posted.

Quinn had her cast removed only 5 days after she had it applied. She was hesitant to walk on it for a few days, but got over the fear, and is doing great again.

Then we got hit with a horrible cold. Spending so much time in emerge the day we took Quinn in for her leg ultimately led to us picking up the virus from hell. It was horrific. I caught it first, and it lasted for 2 weeks. I also developed a sinus infection in the midst of the virus which prolonged the healing process considerably. Quinn was next. Unfortunately, this was a chest cold. The whole thing was very upsetting. I was nervous for Quinn, sick, pregnant and looking after 2 little ones. These are the times when I am nearly certain I have bitten off more than I can chew. Amazingly, Quinn, though very sucky and in obvious discomfort, plowed through the cold really well. No need for any doctor's visits, and when she had her RSV shot the following Monday, the respirologist checked out her lungs and said they sounded clear. What a relief! The girl can handle a horrible cold! Excellent. She truly recovered much better than I thought she would, and much better than I did! Poor Jack was next, and I think he may have been even sicker than miss Quinn. Shawn followed eventually, though he didn't get the cough that the rest of us did. We're all on the mend, and have moved on to enjoy the ridiculously amazing weather we've been having. It's been 30 degrees celsius here for the last few days, which is basically like July. What a nice way to break free from a gross sick streak. Open windows, playing in the grass, and lots of sunshine.

I had a check up with the midwife today and found out a few things. Baby girl's heartbeat was plodding away at 148 beats per minute, nice and strong. Also, it appears that my measurements are suddenly quite large, once again. It's looking like I may be dealing with polyhydramnios again. You'll notice in the wiki explanation for polyhydramnios the CDH is listed specifically in the causes. This isn't the greatest news for a gal like me. I'm not feeling overly confident right now, because this is exactly what happened with Quinn. Exactly. To add to the uneasy feeling, the timeline is the same as well.

*punch me here*

I am going back in 3 weeks for a recheck, and in the interim, I will be doing the gestational diabetes screening test. GD can cause increased urination in the fetus, which will increase amniotic fluid levels. It can show up randomly in any pregnancy, regardless of whether or not one has had it in the past. If the over dates measurements resolve, then we'll rest a little easier, and carry on with care as planned. I'll still be seeing the OB once for consultation and additional ultrasounds. If they don't, we'll have to be a little more aggressive with testing, and be extra careful to make sure this isn't happening again.

I am trying to remind myself that they WERE careful when taking measurements and assessing for CDH during our 20 week ultrasound. The scan was clear. They were looking for a CDH, and couldn't find one. This is good news, but the nagging that always hangs out in the back of my mind has turned into a full blown, armed with megaphone confidence assailant, and I'm feeling pretty worried right now. I was feeling content and happy about things for a while there, and now I'm on high alert, which is not exactly where I want to be. I guess I would be regardless, in all honesty. I'll always be afraid of things like this.

I need to meditate more.

Thursday, March 1, 2012

Toddler Fracture

So, the latest and greatest.... Quinn broke her leg.

She has a toddler fracture which I only recognized by the fact that she stopped walking and bearing weight on her leg. There was no injury, no marks, or swelling, and it was sudden. I had heard of viruses causing hip pain in children so I gave her a day to improve, and when she didn't I decided it was time to call her pediatrician. I honestly went in thinking I was probably overreacting, but as it turns out... not so much. She sent us right over to the children's ER because she had seen this before, and it was presenting just like a toddler fracture.

Now the ER.... they thought we were crazy. She was moving her ankle, her knee, and didn't seem too bothered when they applied pressure on the area. "She looks fine to me" the nurse said. Then Quinn proceeded to vomit ALL OVER me. Like, seriously. All over me. I had to wear a hospital gown home. She had been crying for the majority of our visit at the hospital, so I thought that this was relative to her upset rather than anything else. Anyway, the doctor looked at the x rays and came in and explained that she did in fact have a fracture and that she would need a cast for 1-2 weeks.

Then the casting came. Sigh. We had to pin her down. She was so upset. It was horrible. I hope I never have to do that again. Though I'm guessing when she has it removed, we'll probably have to do the same thing.

After that we brought her home, and wouldn't you know it, she vomited again. All over Shawn, and a little into her cast.

She also had the stomach flu. She spent the next 5 or 6 hours vomiting, and lying listlessly and defeated against me. I Syringe fed her gatorade 5 mls at a time until we got her down for a rest. She seemed better by morning so I slowly syringe fed her more gatorade and she perked up enough to have some saltines and chicken noodle by lunch.

Has anyone noticed how totally disgusting pedialyte is? My kids will never touch it...

I have to say, that was the strangest combination of ailments she could have encountered at the exact same time. It was hard for her to deal with. She was seriously uncomfortable, and couldn't keep any meds down. There was just no consoling her. Eventually she just feel asleep while we were trying to put the 45th shirt on her. She slept through until the morning.

It's been a rough week. We have an appointment tomorrow with the orthopedic specialist to check in and make a better plan for treatment. Hopefully, I'll get a better idea of when we'll be removing the cast.

The receptionist said there is always a long wait. That I should bring lunch. LUNCH.

I'm really glad this is such a well managed facility. I'm sure the experience is going to be A-1. It always is when they warn you how off schedule they will be days before you even get there.

I am badly cynical about this experience. I really hope it's better than I think it will be.
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