Monday, August 31, 2009

Cruisin

Alex has started to choose cruising over crawling in certain areas of the house, places he feels secure enough to do so.

He even rounds the corners with speed.
Things are so busy in our house with school, and homework. Fall soccer, baseball, and swimming are starting soon. Keeping up with the laundry, and Alex I'm so tired, and don't have a lot to say. I can say that not hooking Alex up at night to that pump is a huge burden off of our shoulders. He continues to eat like a teenager, and has been such a happy boy these past few weeks.
So many people ask me if I'm getting excited. For the first time as a mother, I don't know how I feel, I want to be excited, I don't want to think about the baby being whisked away to the NICU, and finding tubes and alarms to be my reality. I want to hear that lullaby music filling the hospital halls when my baby is born, and not be haunted by it when every other mom gets to hold their baby, while mine struggles to breath a flight of stairs above me. Then of course with their good hearts people tell me everything will be ok, but no one knows what will happen. I recall hearing that everything would be ok with Alex, and I put all my hope into that. So my answer is I want to be excited, but that's all I can say.


Thursday, August 27, 2009

Look Mom NO TUBES!

All zipped up, no tape on pj's, and best of all no tube!! Our first night went great, Alex actually woke up around 4 in the morning and played with a crib toy, which he has done before, but this time we didn't have to worry about him getting all tangled up in his tubing. He tolerated another day of peptamin and water boluses too! Joey is in the closet where he belongs.
I also talked to the cardiologist nurse today, and when the doctor told her that he wanted to get a PDA closer around Christmas time, she looked at him like he could do better! So she is going to double check with the doctor and see if late spring or early summer will work, if so we have to come in for a check up to make sure his heart is still healthy, and then we can wait for a more appropriate time for our family. So thank you Donna for being my advocate, I needed some help!

Wednesday, August 26, 2009

Goodbye Joey!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


last night the medicine port on Alex's tube popped open and 525cc of water slowly dripped out onto Alex and his bedding at 55cc per hour. Alex woke up about 3 times, but really never cried, just would kind of complain then go back to sleep, so we never checked on him :( When I went in to his room this morning my sweet boy was soaking wet, his feet were all wrinkled, and I about cried. I'm so glad he had warm pj's on, but I know he must have been cold. So one more reason not to like Joey. Another reason is Alex getting all tangled up in the tubing at night, doesn't seem safe to me, and of course it just isn't natural to be getting fluid pumped in you all night long. because he didn't get his water last night, I thought I would see if I could get all 525cc in him during the day, along with his peptamin jr bolus 4 times a day. It was also the day nutrition comes so I could talk about it with her, and get her thoughts. The good news, Alex tolerated the extra fluid during the day, the good news the nutritionist thought it was great! So goodbye Joey! Into the closet you go. I will still pull him out if Alex is sick and needs extra fluids, but hooking up at night is a thing of the past!!!!!!!!!

For those that care, and others who bolus and deal with mic-key buttons here is our new routine.

Alex gets 4oz of water in the morning with his prevacid, and miralax,

then comes his food, and 120cc of peptamin jr (1 60cc bolus wait 10 minutes, then another) about an hour after his feed, he then gets 4oz of water.

3 hours later more food, and the 120cc bolus (1 60cc bolus wait 10 min, then another)

right before nap about 30 minutes later 4oz of water

3 hours later food and peptamin

4oz of water

3 hours later food and peptamin

4oz of water

right before bed 4oz of water with prevacid


It looks like a lot, but his feeds only take 15 minutes tops, usually 10 minutes, and the 4 oz of water take maybe a minute. So its fast!


The changes this brings to us:

No wrapping up in tubing at night

No waking up soaking in urine

No worrying about finding zip up or button up pj's

Traveling is easier

If he cries at night we don't have to worry about unhooking him or not, we can simply pick him up!


I needed this! Goodbye Joey~

Tuesday, August 25, 2009

Advice for doctors.........

So instead of saying a bunch of bad words, Ill just tell you how the day went.
We get to our urology appointment, and they don't have us in the computer. NICE! The doctor comes to see us anyway, and 3 minutes later we are out of that appointment. The good news everything post op looks great, and he has recovered well.
2 hours until ENT appointment.
We eat, Alex wants to sleep, but cant, gets grumpy, gets very grumpy, we go to ENT. Left ear looks great, right ear has some fluid, doctor says lets wait a year and see what happens, unless he starts having infections and such.
Have five minutes to make it to cardiology.
Wait 20 minutes in waiting room, wait ONE HOUR in the doctors office, I finally step into the hall and say we have been in here for an hour, just as soon as I go back in the nurse and the EKG machine come carting in, we all know that we would still be there waiting if I hadn't asserted myself and gotten things going.
So doctor heart comes in listens to Alex, hears the PDA, and says he needs surgery.
Not immediate, the PDA isn't causing heart issues right now, but PDA's have potential to cause enlarged hearts and infection, so it needs to be done.
He suggests September, I look down at my belly then up at him, so then he says these very words "lets do it around Christmas time", (advice for all doctors) saying lets have surgery around Christmas time isn't something you say in a cheery way, like its some sort of exciting new idea you just came up with. NO I DON'T WANT TO HAVE MY BABIES HEART SURGERY AROUND CHRISTMAS TIME!!!!!!!!!!!!!!!!!!!!!!! He could have said November, or January, but no, he chose to say around Christmas time, like that was a better alternative to September. Not to mention Ill have a baby, just a few months old!

The scary thing is that this cardio appt never would have happened if I hadn't asked our neonatologist, if I wasn't supposed to worry about the PDA either since no one else seemed to be. The fact is, is that we slipped through the medical cracks, and that is the reason I never heard anything after his echo cardiograms that he has had in the past, it wasn't that no one was concerned, its that no one really read them since our echos were outpatient, and we never did see a doctor.
We then left and sat in traffic for over an hour, then began our one hour 45 minute drive home.

I took pictures of Alex being sweet and cute tolerating our long day, but I'm to grumpy and tired to post them. I am overwhelmed with another surgery, and a new baby, and I just need to go to bed.
It was an RTS day.....Really, Tough, S***

Appointments

Today we are in Saint Louis for post op (urology), ENT, and cardiology. I'm hoping urology and ENT say see you in a year. I'm not sure what to hope from cardiology. Alex still has a PDA, and no one has ever been worried about it, I haven't heard of anyone else not having the PDA closed, (anyone else walking around with a PDA out there???) this isn't the best time for heart surgery. I know that his PDA is very small, and is causing no problems for his heart. This appointment is at 3:30, the last one of the day. I don't want Alex to have a hole in his heart, but I'm also exactly 2 weeks from my due date today..............
I will update when we get home.

Monday, August 24, 2009

Oh Baby!

Noah Alan



Joel Michael














Alexander Jon




























Since it is just a few weeks, maybe days until the next baby arrives to our family, I thought I share a glimpse from the baby days in our house.






Friday, August 21, 2009

On top, peek a boo, pj's

So not only can Alex now put things in, but he can put things on top. He loves to practice this skill in the bathtub, by putting things on the tub ledge. He also loves to play peek a boo, a few months ago he would play by putting our hands over our eyes, then taking them off, now he will cover his eyes, put a blanket over his head, or even open and close a door.


I just love a baby in pj's, last night before bed Alex was checking our the goings on at his neighbors house, and catching the cool night air, and I thought he looked adorable, as always my phone was the closest camera, so I apologize once again for the quality of these pictures, but it doesn't take away from the adorableness.


No signs of early labor for me, I plan on keeping the baby in until Wednesday because Alex has ENT, urology, and cardiology appointments on Tuesday, he must go to these, so having a baby really isn't an option right now. Come Wednesday though I plan on overworking myself, and maybe taking a few shots of castor oil, to get this show on the road, I'm joking of coarse, I think!


Thursday, August 20, 2009

Lets do it again!

It was so fun to look back at old video of Alex.....So since things are still quiet here, lets do it again! Here is Alex the first time he rolled over. Yes, he is 7 months old, and we were sooooo proud! And then there is this video, he was so little, and starting to discover his mouth! For more Alex videos scroll down a bit, and click on the video of your choice on the right of the blog!

Wednesday, August 19, 2009

Shhhhhhhhh...........

Things are quiet here. I don't have much to say. Noah and Joel go to school in the mornings, so its just me and Alex until they get home early afternoon. Its nice. Alex is 100% himself since surgery, no more Motrin at night, no more swelling, he is back to being so very sweet, still coming over to me for cuddles, still laughing when I say "do you want up?", we are having lots of fun together. There just isn't much going on. I could have a baby any time, as I am full term now, I haven't really been thinking about that. Maybe because I am so busy, or maybe because I'm so scared. That's for another post though, shhhhhhhhh. Things are quiet right now, and I love it. Since they have been so quiet I haven't even taken pictures, but I did find these pictures from exactly one year ago today!!!! Look at that chubby monkey!!! He was almost 30 pounds a year ago, now he is a nice 25 pounds, and much taller.



He sure did love that swing, and that mobile! Click here to see how much he loved that mobile, which was almost a year ago. remember to turn the music off at the bottom of the blog, so you can hear the video.

Tuesday, August 18, 2009

A little too familiar

Two years ago this was Noah standing in front of school on his first day of kindergarten, two years ago I was pregnant with Alex, just a few weeks left. Doctors telling me everything was fine, and me hopefully believing them.



Now Joel is standing in front of the same school, going into the same class, and I'm about to have a baby, and there are just a few weeks left. Of course the doctors are telling me everything is fine, and there is good reason to believe them. I try not to think of all the complications that can come with the delivery of a baby or a c-section. I remember that warm, sunny Friday so well, when everything went so wrong. Here we are again, same time of year, its all a bit to familiar.

Monday, August 17, 2009

Chocolate pudding, blurry bowling pictures, and more eating talk.

Last week in OT Alex got to play in chocolate pudding, he has a lot of sensory stuff going on, but doesn't seem to mind his hands being a mushy mess. He does love to bang hard things on his teeth, and he doesn't really like to sit in grass, but chocolate pudding, he likes.
Noah really wanted to go bowling on his birthday so we made a night of it, I didnt want to carry my big camera around, but my phone took horrible pictures of our night out. We had a lot of fun! We ate the fried food, and bowled two games. Even Alex enjoyed himself. When I got home I was in a lot of pain, bowling at 36 weeks hurts.










Tomorrow is a big day here......Joel will start kindergarten, and Noah second grade. Alex continues to eat like a big boy, and I just know he will have gained weight again, and I'm hoping for another cut in the peptamin jr! Is that asking too much? Our feeds only last 10 minutes now!!!! No more 45 minutes three times a day!!!! I love it! Feeding issues are at the top of the list as the harder things to deal with when talking special needs. Be it digestive, or not eating at all. I'm happy to say we are leaving many of our issues behind us. He still has reflux, but he isn't throwing up, he still has a feeding tube, but he is eating so much by mouth. Yes, I consider this leaving our issues behind us!

Saturday, August 15, 2009

A feeding update

Most babies get their first taste of milk soon after they are born, not you Alex, you went straight to the NICU, and the first thing in your mouth was a vent tube, not a bottle. Your intestines were malrotated so we couldn't even fill your tummy with milk through a feeding tube, I hated knowing your tummy was empty, even though there were bigger mountains to climb, a mamma always wants her babies tummy full. Little did I know it would be four weeks before you could have any milk in your tummy. Finally we came home from the hospital, and after a fight with aspiration pneumonia you no longer could suck from a bottle, all your milk was given to you through your tube, but we were happy to have you home!
We soon realized your eating problem would be a longer battle than we had hoped so you got a permanent feeding tube in your belly. From 2 months old to 6 months old your little taste buds didnt get to enjoy any tastes, but then in March you got your first little tastes of food. Just a tiny dot of banana baby food, but you really seemed to like it!


As time went on more and more food went into your mouth, and you swallowed it like a pro!


On Wednesday your nutritionist came and decided that you were eating SOOOO much by mouth that we could cut back on your peptamin jr through the tube, and keep you growing by the food you are eating by mouth!!!!!! So your peptamin jr has almost been cut in half! You eat almost anything we eat, minus dairy of course, and yes much of it is pureed. You can make a nutrigrain bar disappear in a morning, and you love your chocolate chip mini muffins! You are gaining weight, and getting tall! Yes, you still have a feeding tube, yes much of your food is still pureed, no you really aren't drinking more than half an ounce a day, but all I have to do is remember how far you have come, and I am THRILLED!!







Thursday, August 13, 2009

8 Years

8 years ago today we were blessed with our first born. All 7lbs 4oz of him. He was the easiest baby, only crying when he was hungry, and sleeping through the night at 6 weeks. I cant believe you are so big already! Noah and his PaPa Jones.
We had his party at the Pizza machine where our pizza came down from the ceiling from a big crane.



Alex enjoyed cake too.











Happy birthday Noah, we love you so much!!!!!



Tuesday, August 11, 2009

Leaps and Bounds............

Remember when Alex discovered the piano in Colorado??? Well, after unsuccessfully getting a real piano my mom saved the day and decided to get Alex this piano for his birthday, yes it is early, but we couldn't wait! I'm quite sure he is the most adorable pianist I have ever set my eyes on. What a personality he is developing!!!


Alex is making leaps and bounds. I can tell that he is understanding his environment much more, and even making attempts at communication. No words, no signs, but he is trying to communicate. After being held constantly for over a week after his surgery, the little prince loves to sit with me, and being in my condition, I love to sit. He will spot me from across the room, and come over to me. I will say "what do you want?", and he will make the cutest little grunt noise, and then I say "do you want up?" and then he laughs, and grunts even louder. Why am I happy that my almost two year old is grunting you ask?
He is trying in the best way he knows how to let me know that he wants up, and I am thrilled. I'm not so sure I'm thrilled that he suddenly has become clingy to me right before I have his little baby, but its sweet just the same.


Monday, August 10, 2009

Thank you!

Here is Alex getting a foot massage during physical therapy, and it was thebest way to describe how I am feeling. Although I am not getting many foot massages lately, you may find me collapsed next to the front window some days. This not only affects the laundry, dinner, and other messes around the house. It affects my blogging, its more the mental aspect of it than the sitting down and typing. Things are going really good, Alex is recovered from his surgery, although still unable to sleep well without motrin, not sure if its from surgery or two year molars. All we know is the first night before his surgery was his best night sleep since. ANYWAY, this very pregnant mamma wants to say thankyou to all of you who came to my shower, eating the virtual treats, and playing the virtual games! It was so much fun wasnt it?!?!?!


So from me, and mystery baby number 4, THANK YOU! Your kindness warmed my heart this weekend!


It meant so much to be thought of by people I don't know, from people whom I have never met, but know so well, and thank you so much to my RTS sisters who put this whole thing together for me.
Much love,
Jessica



Friday, August 7, 2009

Baby shower

Hi Blog Friends,

This is your baby shower host Kelly. Please don't forget to head over to Jessica's baby shower blog this weekend and take a look at some of the wonderful gifts being given to baby number four. I hope you can join us...the food will be delicious!!

Kelly

Giving

Who is this?
Alex's big sister?
Well, yes Addie is Alex's RTS sister, and her dad is raising money for RTS.
The rare syndromes don't get much attention, and so they don't get money for research. You can help raise money for RTS, their families, and research by clicking on the button to the right, and give. Any little bit counts, and this time it counts for Addie, and Alex, and so many precious kids with RTS.

Thursday, August 6, 2009

In

Finally! He can do it. I knew for quite a while now that he got it, he understood what we wanted him to do, but couldnt quite get his hands to do what we were asking. But now, finally he can put things in. He used to throw it to the side, much like he would do with his flash cards, but now he will put it in!!!!! We are so excited, sometimes he even laughs when he does it. Oh how I thrive on these steps, to some they are so small, but for us they HUGE! So I tried to get a picture of him actually putting his shapes in, but he must smile at the camera, so Ill have to get a picture of him when someone else is here so I can distract him, and he can focus on putting in, cause we all know he CAN!