Friday, July 30, 2010

A Nightmare Of A Sleep Study

I will never, ever, ever let Amber have another sleep study in Boston! Maybe, but only if it's absolutely necessary, I let her have one at their satellite location in Lexington.
 If you haven't notice I'm not completely happy with how the sleep study went. 

The sleep study itself went alright I guess. Amber actually slept through the night. She only startled awake twice on her own and not to the scary extent that she usually does at home. She did do her usual snoring and gasping though. I'm hoping things weren't too different and that we still get good answers from it. 

What I didn't like was the technician we had doing the test. To say he had no social skills is an understatement. He was like talking to a rock. He never told me his name, asked if I needed any help or anything along the lines of even a cold welcome. That didn't bother me too much but how he treated Amber really got me going! She had to have 15 electrodes on her head, five on her face, five on her body and two on each legs. She also had to have a weird butterfly like band-aide under her nose to monitor breathing stuff, a special cannula to see how much oxygen was coming out and a carbon dioxide sensor. All the sensors on her head and face had to be glued down with some really nasty smelling stuff. He was so awful to her the whole time he was putting them on. Treating her like a rag doll, flopping her around to put them on. I understand she isn't easy because she doesn't hold any of her weight and she is like a doll to move around but she is a human and it isn't safe for her to be moved like that! She was choking, gagging and sputtering because of it. I was so mad and no matter how many times I told him to stop, give her a break and not to do that he just didn't care, he wouldn't even let me help him. She was also off her oxygen for most of this, it was really scary to see her color change and to watch her work so hard. Which he also didn't care about because the first part of the test she wasn't going to have oxygen (so they could see if her brain told her body to breath etc). The whole experience was just terrible and I can't believe they let people like that work with children! 

We won't have the results of the test for 2 weeks. I'm not even sure how long she was off the oxygen (I know it wasn't long) or what amount she ended up on. 

                                 This is poor Miss Amber after her sleep study back at the hotel.
The red marks on her head are from the marker they use to make where the sensors go. I snapped it quick before I readjusted her oxygen cannula, she looks so different without it!

This week hasn't been so great, hopefully next week is better I don't think we have any appointments!

Wednesday, July 28, 2010

The Vegetable Garden That Could (and of course stuff about Amber!)

I had pretty much given up on the vegetable garden that I decided to start this year.
So I'm completely shocked at whats happened with it!
This is the first squash we picked!

 More squash growing.
 Something green.
 The overall garden.
 More cucumbers.
 The pumpkin plants.
I can not really take any credit for this garden or these pictures (except the first one of the squash). My husband built the frame, put the loam and llama poop in, set up sprinklers and ended up planting the plants (while we were in the hospital). I did however spread the poop, mix wood ash in and pick out the plants, but that's it. My mom has done some weeding, manned some sprinklers and took the other pictures. I'm not sure how this garden got to be so monstrous, a few weeks ago it was pretty dead! The zucchini are starting to slowly come in and the pumpkins are huge and flowering but no actual pumpkins yet. It looks like we will have a huge crop of squash and cucumbers though! Today we picked three more squash and two cucumbers. The cucumbers tasted great and they made the whole house smells like cucumbers! I think we'll be having a dinner of squash tonight. 

In other news I've actually been motivated the last couple of days! I've finally done some long overdue cleaning and organizing. Sadly I'm no where near done. I should be catching up on my sleep today because Amber has a sleep study tomorrow night! I will have to fill her feeding bag, do medications and get her back to sleep by myself tasks that we usually divvy up at home but they only allow one person to stay overnight with her. Hopefully we can get some good answers from it!
Today we saw Amber's cardiologist and it was a bummer of an appointment. In Boston they stressed that she needs almost weekly echo's to monitor how her heart medication is working and that she would need an MRI soon to see how much her heart was actually leaking. They really stressed getting her heart fix (possibly surgically) because they felt that it's one of the major contributors to why she is so far behind and so small. At the appointment today the Dr felt that it was too soon to see any changes so Amber did not get an echo, they'll do one in a month but it didn't seem like it was a big deal. This Dr also thinks that we should wait till Amber is 5 or 6 before she has an MRI. Hmmm seems to me the last time someone said that (in regards to her diaphragmatic hernia) it got worse a lot sooner than they expected and Amber was the one left struggling physically. I really don't understand how one group can stress the importance of monitoring her and getting an answer and the other just wants to let things run it's course and not find out whats really going on. At this point my best option is to tell C.C.S. who's heard the first group's opinion on her heart and see what they can tell me. 
The goon news of today is Amber had a great Early Intervention session! Other than sitting, standing, walking,  crawling Amber is doing everything she is supposed to be doing at her age. Of course we couldn't help but show off that she does "raspberries" on command.  

And finally because it is "Wordless Wednesday" I give you; A Girl And Her Cat (what this post was going to be called!)

Thursday, July 22, 2010

Happy Birthday Blog!!!!

Can you believe it! I almost missed it myself! Today is my blogs birthday! I feel like we should do something special. But what? How 'bout my first post ever;

"This is going to be my first official post! I started this blog to document the last chapter of my pregnancy, the beginning of mommyhood and the joys and trials of being a domestic diva/new wife! I'll be covering topics like my growing bump, trying to set up a nursery, woes of cleaning and cooking, life with a new baby and some other fun/random things that happen to me!

I'm not that computer savvy and I'm hoping this blogging thing get easier (and better looking) over time!"

Don't you wish they were all that short and sweet. This blog is hardly anything I thought it would be when I started it. At the time we had no idea what type of an adventure Amber would bring us on. Looking at her now, all tangled up from playing her oxygen cord, blabbering away at me I wouldn't have it any other way! 

Not so much in honor of the blogs birthday but because it's what I do best we're going to play catch up!

That's not even half of her records! I stayed up late Tuesday night reorganizing all of Amber's early intervention and medical records. The new binders came out really nice! Her C.C.S. appointment went really well! They are scheduling her a sleep study, new orthopedic appointment, trying to get us to see our pulmonary specialist sooner and setting us set up with a car seat specialist. That's just the beginning we probably won't see a lot of other new specialist until the fall just because we want Amber to have some time on her new g-tube feedings to see how she's going to grow and develop. We're going to end up seeing a developmental neurologist to see if they can tell us if her muscle will get any stronger and we'll probably end up seeing a craniofacial (sp?) specialist about Amber's mouth. Oh and we'll get another swallow study at that point too. We'll be going back in three weeks, maybe every three weeks for check ups to see how Amber is doing and if anything new comes up. I really like them they looked her over head to toe, said who we should see and have happen right now, in a few months and then long term depending on how things go. I wish we could have been plug in with them sooner and I'm really looking forward to seeing what else they can do for her.

And because I missed Wordless Wednesday yesterday (our appointment was 3 hours long not including travel time!) here are some pictures :

Amber's 1st trip to the ocean! 
Getting her feet wet
She didn't like it. I can't blame her it's Maine water so it's freezing!!

Amber got a package from her PA Grammy Tuesday

She loves it! Thank you Grammy!
Reading the note.

I think that's all for catching up! 
Oh yes, this is the face Amber has on almost 24/7 lately. Dutifully practicing her raspberries!

Now in honor of this blogs birthday I'd like to hear from my readers! What would you guys like to hear more of or more about. I'd love to answer any questions you have. It doesn't matter how random it is I'd love to hear from you! 
If you're wondering how to leave a comment it's really really easy! 
1) Click on comments below (there may or may not be a number in front of it)
2) Write your comment or question in the empty box below "Post A Comment"
3) Under the box it says "comment as" and you have to pick something 
      The first is a Google account, so if you have g-mail or a blogger account you can pick that. If you want   
      you can set up a Google account but I won't go into that right now.
     The next 5 choices are other blogging/journal sites, if you have an account set up with them chose that.
     The next is Name/URL that would be if you wanted to leave your name and your web page as your id
     The last is anonymous and that is probably the easiest to chose! And leaves you no excuse for not leaving         
     a comment! 
4) Finally click post a comment. You probably have to fill out a word verification thing but then it'll post!

Thanks to everyone who reads this! Can't wait to hear from you!!!!

Tuesday, July 20, 2010

Getting to normal ~ part 2

I really did lose my mind at the end of that post last night! Ugh I guess a year and almost nine months of not sleeping well will do that to you. Anyways all day I've been remembering things that I forgot to put in that last post. So, here I go again and hopefully I'll remember it all this time!!

I'm trying to get back to normal (our normal). I'm also trying to get back to being a more function-able human being. I feel like for almost a year now we've been in suspended time and it's time to snap out of it and start actually living life and not just surviving day by day. This means I need to get on a schedule...ugh I don't know why that's so hard but it is. I also need to really tackle the things I put off everyday, like cleaning! I'm hoping that if we get into a good routine then things won't feel so overwhelming all the time. This means I'll either stop posting for a while or hopefully start posting every day. 

Recap: Went to Boston, Amber is bigger, less time on the g-tube!
What I missed:
Amber's g-tube has suddenly decided that it wants to be really gross, to spare you all a lot of puke invoking descriptions. I'm not surprised we had a lot of issues with her belly button taking forever to heal. Right now we're changing the dressing a lot and using an anti-bacterial and something like an anti-fungal (she was allergic to the last one). This is one of the major things I'm hoping C.C.S. can help with. They actually have g-tube and wound specialists. I'm thinking I should really do a whole post with pleasant pictures of her g-tube because it can be kind of confusing. I'm not sure how bad it is but I know it could be worse so that's good. 

Amber has decided to start holding her bottle and do the sign for hungry! Only when she wants to of course. We're quickly entering the stubborn, tantrum throwing stage of life. Yay milestones? 

She is also starting to get more vocal. Consonants are still very hard. She is using a wide variety of tones, pitches and volumes (happy screeches) for different things. Even though she doesn't look like an almost one year old her personality really fits her age. She knows what she likes and doesn't and really lets you know too! I think she gets more adorable every day. Right now she's trying to master raspberries for the third time so her little tongue is out all the time!

I know you can't believe it but I also forgot to put this picture in yesterday!! Can she get any cuter. I've decided we all need more reasons to wear tiaras and flower headbands. 
Time to re-organize all my medical paperwork for Amber's appointment tomorrow. 

Monday, July 19, 2010

Getting to normal

On Friday we went to Boston...again. This time we saw our nutritionist, who we love! She is the sweetest lady. She is also a mom. So she completely understands all of our concerns with Amber suddenly not getting the oral feedings she used to have and the stress of being on the g-tube for almost a whole day (and the fact that we know our baby best!).  She gave us some awesome news!! Amber is gaining 3 times as much as they expected her to! She is now a whopping 10 lbs 14 ounces! She is looking rather chubby! The worrisome part is she is still 23 inches long, she has not gained any inches in almost 5 months. Back to good news, because Amber is doing so well she now needs to be cut back on her feeding. Everything she gets is still 26 calories. She is still getting 24 ml per hour but now it is only for 16 hours! We now have 8 hours off!! She is now getting 3 ounces by mouth every 3-4 hours as well. We're hoping she does well on this so we can move her to being on the g-tube for 12 hours and take 4 ounces every 3-4 hours.

This Wednesday we'll be in Boston again to see Complex Care Services aka C.C.S. I'm really hoping for a lot from them and I hope it doesn't blow up in my face. I'm hoping they let Amber get back to eating solids. They can explain the mystery of her mouth (still no teeth), find someone to help her chest and just overall get us plug into more people who can really help her. I've heard great things about them but after all the struggles over feedings we've had with them I'm really skeptical. 

I'm not sure where I was going with the rest of this post so I'm going to go to bed :) 
The cat has not been shaved......yet 

Wednesday, July 14, 2010

Shave The Cat?

See this adorable kitten!!

Well it's all grown up......
She's really more in the annoying teen ager stage...making prank phone calls. 
(no lie I found her like this one day!)

You might recognize this extremely furry feline from past posts. Yes she is the one that ate my gingerbread house, and sleeps in any baby place she can find. She wasn't always a bum. She used to be my baby and when Amber was first born she acted like "Nana" towards her.  Now she's my troublemaker cat! 

To make it worse, this cat who's already in the dog house as it is, has the worst matted hair you could ever imagine! It all happened while we were staying in the hospital and she missed her weekly, daily, hourly brushing. Maybe she's going through a reggae faze?  I don't know but it's beyond horrible. She has mazes of mats. Yes her mats have matted to each other! In two weeks! TWO WEEKS!!! 
(This is before the mats...she might have a few it's new baby time frame)
I'm really at my whits ends with this cat! Everyone in the house has tried to de-tangle the beast! I'm about to find someone to shave her. I really don't want to. So, I'm just wondering if there are any feline aficionado out there reading this baby blog who know what the heck I can do with this poor mess of a cat. Or maybe even someone who knows something about long haired dog grooming?? I know tangles. I've fought hair that thinks it needs to be in dreads by noon and this feels hopeless! 

Can anyone save this cat, before what fragile feline friendship we have is gone? 
Or what little sanity I have left is gone!

 The good o' days
before the fat cat was added
before the baby was added
before the mats came along

Good NIGHT! Seriousness will resume in the morning!

Monday, July 12, 2010

Grow BABY!

My daily lessons on patience and contentment are slowly paying off. Things are finally growing around here. Thanks to a job change our savings our growing (not that we are even really thinking about that anymore!). Thanks to better weather, a wonderful husband and sprinklers my vegetable garden is growing! I had given up on it but now it looks like we will at least have cucumbers and maybe a yellow thing. The best thing that's finally growing is AMBER!!! She's finally a little over 10 pounds! That's a whole pound in a little over a week. Before that would have taken her a month at best usually a month and a half if not two. Its so great to see her getting bigger but now we just have to wait for her muscle to strengthen, and that will make us even happier!

Her surgical follow up last Friday went perfectly! She'll be monitored every once and a while to make sure nothing is going wrong. As of right now we are in the clear meaning if anything bad in terms of infection and such would have already happened. Her diaphragm is still healing and like any muscle it will take some time for it to strengthen and then we'll be able to better tell how much the surgery helped her. This is also the reason it will take a little bit longer before we go back to weaning her off the oxygen.

This Friday we'll be back at Children's for her nutrition visit. Our hope is that since she's been doing so well with the amount of calories she's been having that they can keep the calorie amount but shorten how long she's hooked up to the pump. We would love to have more time with her off the pump, it's very stressful to go anywhere when she's on it.

I'm praying things will continue to look up!

Thursday, July 8, 2010

Keeping Cool

It's been crazy hot here all week long! So here are some things Amber's been doing;
Wearing cute, tiny summer outfits
 Playing inside in the air conditioning!
 And chewing on ice cold teething toys!
She needs one for each hand!

We have some very exciting news! Yesterday Amber weighed 10lbs 9oz on the visiting nurses scale! That's 9 ounces in 5 days!! I'm not sure how accurate her scale is in comparison the the ones at Children's. According to hers Amber gained 14 ounces in the two days she was home from the hospital last week. I'll see how off it is tomorrow when she's weighed at her appointment. 
Our other news is that as of yesterday Amber has a very red, swollen looking part on her gums. If you're looking at her it's on the bottom, left corner where the canine would be. It's hard to tell what's going on because Amber has a very odd shaped mouth and her gums are actually teeth shaped. The Dr's really haven't been able to tell us much about her mouth because she can't open it very wide to get a good look and she gags really really easily when they try to "help" open it more. We'll see what happens, it makes sense that she might be teething based on how grumpy she's been lately.  The odd thing is she has another spot that looks like impetigo again (same place as always) but it lines up perfectly with the spot on her gum so it might just be that she hurt herself with a toy or the plastic part of her binky. 

Tuesday, July 6, 2010


Amber and I are adjusting pretty well to being back at home. 
She seemed not so keen on being home the first couple of days and still does not like being left alone. She was spoiled having someone by her side 24/7 in the hospital. She's been extra adorable lately! I think she's feeling so much better not having her intestines pushing up on her lungs all the time! She's also healed up nicely. We were worried about her g-tube site because of some bleeding but now everything seems great and she no longer needs any pain medication!
For the rest of us adjusting is harder trying to get on a good schedule with her feedings and medication. I'm trying to not let it all rule and stress out my life but at the same time I don't want Amber regressing at all. We have four hours of bliss when Amber is not hooked up to her g-tube and I would like the time to increase not decrease! I've found a pretty good way to organize all the feeding bags and g-tube paraphernalia. Now I just need to figure out how to organize her new feeding things and all the information I'm supposed to record all day. On top of the new things I'm doing daily I need to get back to (well more like get into) a routine to take care of all the normal house things too. 
There really isn't too much else going on. All of her follow ups are scheduled, not as soon as everyone was hoping for but that's what happens when you see really good Dr's. Amber starts back up with early intervention again tomorrow and then has her surgical follow up on Friday. We're beating the heat, having our air conditioners going all the time! Amber has a very hard time breathing in the heat so she is not going out side much. I hope the rest of you are beating this heat! 

Thursday, July 1, 2010

We're Home!

We finally got home around 9 last night! It was a rough night trying to figure out all of the tubing, feedings and battling an oxygen probe that still doesn't work right (waiting for new ones on back order ugh). I think Amber is glad to be home. She definitely missed sitting in her bouncy seat, that seems to be her favorite thing since we got back. When we came home from her first hospital stay she reacted to every toy like it was her long lost friend. This time she looks skeptically at them like they might bite her and prefers the toys she had in the hospital.
It is definitely going to take  time to adjust to the new schedule of feedings and medication, I'm sure in a few weeks it will feel like normal. What will be hard is organizing the boxes and boxes of medical supplies and assessing what we have and what we still might need.

Here is kind of an update on what's all going on/what went on by body parts:

Diaphragm: She actually had two central holes/hernias in her diaphragm they were both easily repaired no patch was needed. She has a small (maybe as long as my thumb) incision with dissolvable stitches, they're covered with steri strips (looks like gauze but similar to glue will fall off on they're own) but no special care is need and it looks really good. Her two week follow up is scheduled for next Friday the 9th

Heart: A post op echo cardiogram showed that her Mitral valve leak is no longer mild but severe and the left side of her heart is dilated. She also has high blood pressure. They have her on a blood pressure medication that seems to be working ok and she will have a follow  up echo done soon. As long as the echo shows that the medication is working she won't need surgery.

Throat: Her swallow study showed that she aspirates on baby food, regular liquids and nectar thick liquids. This means she is only safe to have liquids/foods that are as thick as honey. It also showed that she has silent aspiration meaning she's getting whatever she's eating in her air way even if she's showing no outwardly physical sings of it. During the study they thought her vocal cords were not coming together properly. They did a scope of her vocal cords and everything was fine. They would like to do a more conclusive test but they are in no rush to do it because her scope was fine and the test has to be done under anesthesia. So far Amber is doing amazing with the honey thickened breast milk (I know tmi sorry!!) but she is not sweaty (thanks to heart meds) and she is not choking at all!! It seems like a miracle.

Stomach/Feeding: This is the most complicated one. Amber's G-tube site seems to be healing alright, she does have a small bit of drainage and she's been having some weird bleeding the last few days. We're keeping a close eye on it and the Dr will take a look at it at her surgical follow up on the 9th. Because Amber is so small and not used to eating a lot we've been having a rough time with her g-tube feedings. When we were on the surgical floor they tried to increase her feedings too fast and we ran into a lot of really scary trouble. Thankfully CCS deals with kids like Amber all the time and they seem to have gotten a handle on her feedings now. It's not exactly the amount everyone would like to see her get but it a start. She is getting 24cc per hour of 26 calorie formula for 20 hours a day through her g-tube. She is also getting a minimum of 51/2 ounces (2 ounces at a time) of 26 calorie honey thick breast milk a day by mouth. The goal is that the combination of g-tube and mouth feedings will be at least 640ml per day (of course it would be more if she takes more by mouth however it can not be less that this). Everyone would like to see her be able to do more by mouth feedings, the problem is she burns a lot of calories to eat by mouth that she really wouldn't be gaining what she needs to develop properly. We have a follow up with nutrition on the 7th and hopefully at that appointment we will have  a bigger picture/plan of Amber's feeding.  All of the feeding is major life changing, more than they led us to believe when they "sold us" the g-tube, and it's definitely going to be a hard adjustment to make and a lot of levels.

We're taking everything one day at a time and trying to keep things as normal as possible. It is so nice to be home but I do miss having other moms like me to talk to and nurses to help. I was more comfortable bringing her home from the hospital when she was first born than I am now. I am very thankful though to have my mom, husband, friends and family (some who even have g-tube/special needs experience!) to help with all of her care. Of course the fact that she's so darn cute helps make everything better too!

Thank you again for all your thoughts and prayers while we were  in the hospital it really means a lot to our little family :)