Wednesday, April 30, 2008

Memories

Today Joel asked me "mommy why do you take pictures?" I told him so we can have memories to look at. Then I got out a photo album, and we looked at it together. This was taken a year and a half ago when we went to see family in Colorado.
So just in case you were wondering if these three boys really do have parents, here we are.

Rubinstein-Taybi Syndrome and reaching out........

I have met three mommy's with children who have Rubinstein- Taybi Syndrome because they found this blog. It is so wonderful to know other moms that are along the same jouney as me, oh how it has kept me from drowning, and it is also good to know that I can reach out to others that I would not be able to without this blog. One mom who contacted me lives in South Africa, another on the east coast, and another in the north west.

I remember the first time I came home after talking with the geneticist, and I sat down at the computer and googled Rubinstein -Taybi Syndrome, I was scared, but hopeful it only meant crooked thumbs. I didn't like what I was reading, and the only pictures I found looked like they were from the 1960's. It was scary, and there wasn't a lot of information. I sat at the computer and wept. Sometimes I still do, but then I see his face.

I would love for this blog to reach other moms who may be sitting down at the computer getting ready to Google Rubinstein Taybi Syndrome, instead of being swallowed up by lots of scary information and old pictures, they could see Alex, and the other sweet and beautiful kids that are linked to my blog. Deep down they can see that it will be ok, it wont be easy, and still scary, but maybe it will soften the blow.

So if you are out there, and you just got this diagnosis, or any unforgiving diagnosis for your new baby, or maybe you haven't reached out to other families yet. We are here, we are ok, and we are ready to talk........

How long have I been in this storm
So overwhelmed by the ocean's shapeless form
Water's getting harder to tread With these waves crashing over my head
If I could just see You, everything would be alright
If I'd see You, this darkness would turn to light
I know You didn't bring me out here to drown
So why am I 10 feet under and upside down
Barely surviving has become my purpose
Cause I'm so used to living underneath the surface
If I could just see You, everything would be alright
If I see You, this darkness would turn to light
And I will walk on water and You will catch me if I fall
And I will get lost into Your eyes, I know everything will be alright

Storm - Lifehouse

Monday, April 28, 2008

Shooo!








This weekend was very busy. We cleaned out our little storage shed, got the rest of the sticks picked up from the ice storm in December, and mowed the lawn for the first time this year. Noah had a soccer game on Saturday, no goals this time, but he played very well. Joel was so tired on Saturday he fell asleep during the movie Ratatouille, and went to bed early.

When the boys play outside they like to run completely around the house, when they run on the south side of the house they run through a piece of the neighbors yard. I hoped she didn't mind, and assumed that because she was an older lady she might like to look out and see two boys running around. On Saturday morning they were playing in her yard and she shoooed them away, like you would a raccoon or some sort of rodent on your porch. Noah said that was all that she said, "shooo, shooo". Maybe it had something to do with the flower Noah picked for me out of her yard. The flower bed is right at the dividing line for our yards, so he was in our yard when he picked her flower. I explained to him that they were her flowers, and even though he had good intentions by bringing me the flower he cant go around picking all the pretty flowers that he sees.
Alex's rash went away as quickly as it came, I think it was the strawberry yogurt I gave him.




Friday, April 25, 2008

Mystery

The rash is a mystery. I did give him strawberry yogurt last night, so that is a possibility, but it could also be a virus, he has been pooping in almost every diaper. He has also been tugging his right ear, she couldn't get a good look inside because of the great rock, (that is what she called it), of wax in the way. She tried to flush it out, but it would not budge, so his ear tugging remains a mystery also. On top of everything he got his 6 month vaccinations, he was not a happy boy. He is back to his happy self tonight, and singing himself to sleep as I type. Hopefully the rash will be gone in a few days, and no more strawberries for a while, but we really aren't sure if that was the problem.
I think babies should have come with a light system yellow light for ear problem, blue for tummy trouble, ect..........

Rash

Alex is covered in a rash, we dont see the doctor until the end of the day.

Thursday, April 24, 2008

bed time songs

Instead of crying himself to sleep, Alex usually "sings" himself to sleep. He is doing right now as I type:) I managed to sneak into his room and get him on video without him knowing I was there.

Yes, that is a hospital blanket he has his head on, it is easier to change those than the whole crib sheet when he re fluxes. We have collected quite a few through all of our hospital stays, and they have really helped keep the bed clean.

Wednesday, April 23, 2008

Sooo Big!












The nutritionist came this morning, and Alex had a big jump in height, and while he still gained some weight his rate has slowed down. Yeah for Alex!
He is wearing size 12 mo in this picture, I can still squeeze him in 6-9 months, but the 12 mo fit much better.

He is sitting for longer periods of time now. He has gone from a few seconds to a few minutes. He will also stay on his tummy for 5 -10 minutes at a time, which is huge for what he has done in the past.




Tuesday, April 22, 2008

Little athletes







Well, life keeps moving forward so I must as well. Joel had his very first soccer game tonight and did quite well, I really thought he would be the boy clinging to his moms leg while the others played, but he was not that boy. He ran right out, and was in the thick of the organized chaos that is 4 year old soccer. He got distracted a few times and put his head in his shirt, and looked at the game upside down, but I was proud.
Noah scored his first two goals on Saturday, he is becoming quite the little athlete. He is hitting very well at baseball practice, and he got a basketball hoop to practice here at home.



Monday, April 21, 2008

One year

One year ago we went in to find out if we were having a boy or a girl, and left with the news that there was a cyst on the umbilical cord. It was bigger than anyone had seen before, and the biggest concern was that the cord flow could be compromised.
I went home and googled cyst on umbilical cords and learned that 80 percent of the time a cyst on the umbilical cord means that there is some sort of chromosomal abnormality.
From the moment I found out I was pregnant I had this deep, inner feeling that something wasn't right, and reading this information online just confirmed my feelings. The doctors saw no abnormalities on the weekly 3d ultrasounds, my amniocentesis was normal, everything was supposed to be normal. How could I argue with doctors and tests, I let go of my worries and just trusted that it would all be fine. The cyst never did cause any problems, when Alex was born it was the size of a softball.
I am really having a hard time right now.

Saturday, April 19, 2008

My front door

One question I hate to answer is "Are you taking any time for yourself ?" I want to laugh out loud when I hear this. Are you kidding, I have to do physical therapy twice a day, which is an hour total, feed Alex five times "this takes an hour each feed" "Adam does the early morning one, feed number six", pump 4 times, this is 40 minutes of my day, and try to squeeze tasting food in twice a day. This doesn't include the actual therapy sessions, and the things I want to do with Alex, read books to him, play with him, and lets not forget about the two other beings in my house that call me mom. So the answer is no, I absolutely do not have time for myself, and most of the time I have come to terms with the fact that this is just the way it is for now. Tonight I felt that overwhelmed feeling coming on, and I told Adam that I was going for a walk. Out the door I went. As I made my way down the road, the smell of spring was in the air, I had not smelled it this strong yet, "my sense of smell and memory have always been tied together" Suddenly because of this smell I was sad, like remembering an old friend, but the friend is the way things used to be, easy, normal.

I kept going arguing with myself that Alex has come so far, and I simply don't have the right to be sad. Then I found myself on our old street, nearing our old house, the house we brought Joel home to, the house that still feels like home as I'm approaching it. We sold that house to pay off all our debt, and get our kids into the elementary school we wanted, good to have absolutely no debt, and good school, but still I miss the house. I got that feeling in my stomach like when I was little and i lost my mom in the Jacks department store. I was staring at my old life, I wanted to run through the doors, and find Noah and Joel in their rooms, Adam on the couch asking how my walk was. I wanted that front door to belong to me, but it doesn't, and all that is in the past. Again I found myself arguing with myself, things are good, you can not keep grieving this. Sometimes I find myself fighting to pray or not to pray, lately the only times I pray is when I'm angry at God, and when things are settled I'm too scared to pray, like if I don't, I wont be let down. I rounded the block, and found myself at my front door, the one that belongs to me, picked Alex up off the floor, and sat in Noah and Joel's room while Adam read them a story, and was gently reminded of the otherside.

Wednesday, April 16, 2008

Back to where it all started


This morning I went to see my OB, it was the first time back with Alex since he was born. It was nice to see my OB, and the high risk doctor that was there doing the 3D ultrasounds, and always so encouraging. It was nice to have Adam pull the car up to the doors and carry Alex out through them, and put him in the car like we were supposed to do 7 months ago. So much has changed in 7 months. I have lost relationships, but I have gained new ones, and some have grown stronger. One of the hardest things when you are going through a life change is watching the world go on, and watching friends pull back.

Alex went from a death bed, to having sweet laughter, and I am in the midst of a transformation, I can feel it happening, but still, I am only in the midst.Im sure it will be years before this new normal is something I fully accept. Some days are better than others.

Walking into that building today brought back so many emotions, but I was thankful to have Alex with me, to show him to the doctors that heard that first heart beat with me, that saw that first smile with me, that held my hand as I cried, I never knew why I would get upset at the appointments, now I know that deep down I knew, some motherly instinct inside of me knew Alex was special, and that life would never be the same.

Tuesday, April 15, 2008

Long Day

We had a long day in St. Louis. The renal ultrasound went well, then we went to see the GU doctor and we waited for over an hour in the waiting room, which then made us late for the rest of the appointments, but CGCH accommodates us so nicely that they got us into our following appointments as soon as they could, even though we were late.

I was wrong about the renal ultrasound, it does not look at the reflux, but only to see if any damage has been done to the kidneys. So the doctors are assuming he does still have reflux because normally it doesn't go away in jut a few months. His kidney look great, the doctor said " they have good meat on them" not sure what he meant, but we could tell it was a good thing. He was very happy with how Alex's kidneys look. In September around his first birthday they will look at the reflux to see how it has changed.
The ENT went well, Alex's ears are clear, and he wants us back in three months just to follow up with them.
NICU follow up also went well, she didn't see any reason to change his diet. He is on the heavy side with his weight, but his head circumference is growing great (50th percentile), and while his height is lagging behind, it still remains on the curve, and continues to go up.
She was also pleased that he poops two to three times a day with no medicine to help him, this is a really big deal for kids with RTS. Alex is a great pooper!
His lungs still remain clear, which means another cold down, and no pneumonia to speak of!!!! This might be my biggest fear health wise right now.
She also got to hear some of his verbal skills, and noted how strong he has gotten since she saw him last month.
So it was a long day, poor Alex got no nap, and was exhausted, we put him to bed early, and he went right to sleep, within seconds!

Road trip

Off to St.Louis today for renal ultrasound, ENT, and NICU follow up. We are hoping the reflux in his right kidney has gotten better, or is gone.
There will be an update later today or tonight.

Sunday, April 13, 2008

Laughter!


How sweet is this!!!!

Along with becoming more verbal, he finally will laugh for me. I was making him laugh all day. Sometimes he would laugh so hard, he would start to pucker up to cry. He loves it when you turn your head, look at him, and say hi.

I just have to note that the beautiful orange extension cord on the floor is for his suction machine. When he has a cold we have it plugged in all the time. I have squirted saline up his nose and the suction machine needed to be charged, so he had to wait for me to plug in the machine with saline up his nose, so we don't take any chances when we have to suction him all the time.

Nutrition

Before Alex nutrition for me was eating healthy, and how much I weighed.
Today Alex's nutritionist came by for his measurements, and recommendations, she comes every two weeks. Alex weighs 22 pounds, he has no trouble gaining weight, but his height and head while continuing to grow aren't growing as fast as his weight. His head and height are still on the normal curve, and continuing to grow at a steady pace, but his weight keeps going up about 2 pounds a month. The problem is that he is getting the minimal amount of milk that babies his age normally receive, so he is barely meeting his micro nutrients, any less, and he wouldn't be getting the nutrients he needs to grow, anymore and he will be gaining weight even faster.
This is definitely better than failure to thrive, I'm happy he is able to grow so well. I really don't want to supplement his feedings to cut back on calories, but up the nutrients, he gets breast milk, and that is how I want it to stay. So, we will be watching him over the next few weeks, and we hope his weight will slow down.

Friday, April 11, 2008

Fast asleep.....

......with the help of Benadryl.
Last night Alex woke up every so often because he was having trouble breathing through his nose, so today the doctor said we could give him Benadryl before bed to see if that would help him breath better. We will see. His reflux seems a little worse with all the congestion, so I have slowed his feedings down even more (over an hour), but the last thing he needs is to choke on a feeding with all this congestion.
I pray he gets good, deep, rest tonight.
Alex has been very chatty in the past few days. This afternoon we spent about ten minutes blowing our lips at each other, somehow it felt like we were talking to each other. It was nice.
I have been trying to get him on video talking, but whenever he sees the camera he quietly watches it like it will turn into one of him mobiles or something. So I have yet to capture him when he is in a cooing mood, but it is pretty sweet. He is getting really good at his "b" and "g" sounds, and today I even heard a "v". These moments of talking were few and far between, but in just the last three days, he has been sharing his opinions a few times a day, it is very heart warming and encouraging for me. I will keep trying to capture it so I can share his voice with all of you.

Just snotty

His lungs are clear, and she spent a good amount of time listening to them, his ears are good. He is just very congested. Hopefully this will be over soon, and just stay in his nose.

going to the doctor

Called Alex's doctor and she wants to see him, appointment is at 2:30.

Cold number two

Alex has his second cold, this one is a bit worse than the previous one. Lots more thick snot that I can hardly keep up with. I have a suction machine which is a life saver, but he still has trouble breathing through his nose which interferes with sleep. Please pray that he is able to control his secretions, that he swallows them into his tummy and not into his lungs.

Yesterday we practiced with this fancy bottle we got from Cheri, his ST. It has 6 settings 0-5. O is no flow, 1 is just a drop, and 5 is the same as a slow flow nipple. We stayed in between 0 and 1. It was nice to hold a bottle, and "pretend" to feed Alex. He enjoyed it too.



Thursday, April 10, 2008

Future swim star and a big boy sleeper.

I just let Alex cry himself to sleep. We did this with our other boys, well Joel, Noah just put himself to sleep quietly from the beginning, Joel was another story, but it only took one night, and one hour of crying, and they are great sleepers now, but we haven't let Alex yet, for one, he is only 7 months old, but I feel like he has been through so much why let him cry ever, if I can help it. Anyway last night we had to let him cry himself to sleep because he wouldn't have it any other way, so we just left him, and it only took a few minutes, and he was out for the night. So I tried it again this afternoon for nap, and it only took a few minutes again.

We just got back from swimming lessons, Joel did really good and even jumped into the deep end off the starting block. I was very proud, a year ago he screamed if his face got wet, now he is jumping into the deep end. I know this is a terrible picture at the bottom, I took it throught the glass, but if you look closely you can see him jumping into the water. I had to post it, Im so proud of him.



Wednesday, April 9, 2008

Pictures from today

This is Cheri holding Alex at his therapy today, as soon as she picked him up and started to talk to him, he gave his "from the gut laugh" that he only gives to her. Not his mom, or dad, or brothers. He loves his Cheri, they connected at the first visit....me too. You have to click on this picture to get the full effect of his smile!


Alex in his stroller waiting for therapy to start.






We had to get Alex a bigger car seat because he exceeded the weight limit on his infant car seat. Such a big boy!

Normal

I don't want to sound whiny, I almost didn't post this, but the whole purpose for my blog was to express my feelings while informing others about RTS, and hopefully reaching any moms out there who are traveling the same road.
When I came home from the NICU, I remember feeling guilty that I wasn't overjoyed to be home, I was thankful to be home, but the realization of my new reality hit when I came home. I didnt have the safety of the NICU walls, and all the medical people who's sole purpose was to care for Alex, suddenly I was home, alone, and everyone living their normal lives of the past was right in my face. Those feelings are fading, but now a new adjustment is approaching.
I am so grateful to be out and about with Alex, but the more I go out and do normal things, the more abnormal I feel, I watch everyone else and secretly wish I had it as easy as them, of course not knowing what things they are struggling with in that very moment. I miss my happy ignorant bliss, but I was more selfish, self absorbed, and didn't hold the little things as dear. I see that I am changing for the better, and I know Alex's life will change others for the better too.
This new kind of normal is a process that I am still deep in the trenches of accepting.

Busy!

We have been very busy, Monday night Noah had baseball, Tuesday night was soccer practice, and then the last basketball game, soon Joels soccer will be thrown into the mix as well. The life of a proud soccer mom:) This morning we had speech therapy, and this afternoon we go to see Cheri the speech therapist that has been with Alex since we came home from the NICU.

Busy!
However, it is nice to be out, and to have Alex with me. I don't think I am ready to take him around lots of people. We go to St.Louis on Tuesday for three appointments so I will ask his doctor what she thinks about him being around more and more people. When we go back to St.Louis he will be having a renal ultrasound to see if the reflux into his right kidney has gotten any better, maybe even gone away, we just dont want it to get worse. He is also going to see an ENT, lots of RTS kids have an ENT, and I wanted to get in early. He will also see his NICU doctor for a follow up. Maybe in between visits we will be able to stop by the NICU to visit our friends.
I will post some pictures later.

Monday, April 7, 2008

7 months old today



We had a big day for Alex's 7 month birthday. He went to the store for the first time ever, and seemed enamored by all the things to look at. Alex and I also joined Adam and Joel for their weekly Monday lunch together. It was so nice to be out with Alex!!!!! I meant to take the camera to get shots of him on his first outing, but of course I forgot as we left the house so you will just have to picture what it must have been like.


I do remember walking through the same store with Noah and Joel when Alex was still in St.Louis, I was fighting back tears because it felt all wrong doing something so normal, and my new baby being so sick and so far away from me. Today was healing for that moment.

I decided to post a picture from after Alex was born. When my mom brought Noah and Joel to see their brother they hadn't really heard that anything was wrong, so when Noah and Joel walked into my room Noah had this "Christmas morning" look on his face, it breaks my heart to think of it even now, he scanned the room looking for his baby that we promised him he could see. He left the hospital in tears because he didn't get to see Alex. The next day he got to see his brother before he flew to St.Louis. You can see the picture he drew for Alex, it is Noah and Alex in a boat together......

Happy birthday sweet little angel.

Sunday, April 6, 2008

Mamma is proud

He can roll over!!!!!!!! I got the perfect footage of Alex rolling over, then in an attempt to get even better footage, I recorded over the perfect footage. He started to get fussy, and stopped smiling about his new found skill, so this isnt the best roll of the night, but here he is rolling over!!!!!!



Friday, April 4, 2008

Down time








Instead of constantly stimulating, or working on gross/fine moter, or physical therapy with Alex, I have to let him have some down time, and just be a baby on the floor with his toys and brothers.


sweet greetings- two.


This is Alex after his nap, you can compare how much stronger he has gotten since the last nap picture. It is nice when he wakes up happy and talking now in stead of screaming because he hates his belly.
You may notice that he is in a harness "reflux harness" his bed is elevated at such an angle that he has to be harnessed in, so he doesn't roll to the bottom of the crib. He is getting to big for it though. I'm not sure what we will do when he out grows it or, starts to roll over. It has been a life saver as far as his reflux though.

Thursday, April 3, 2008

Nevermind............

Alex looks like.............
his daddy!

Brothers

Noah a few weeks old
Joel a few weeks old

Alex a few weeks old


Noah 4 months



Joel 4 months




Alex 4 months






Noah 7 months, I couldnt find a picture of Noah at six months, I am missing an album?????







Joel 6 months








Alex 6 months
This morning while everyone was asleep, I decided to go through some old pictures, and remember the boys as baby's, and of coarse I was comparing them, like you aren't supposed too.

One of the things that really bothered me when the geneticist talked with me was that he said Alex might not look like a member of our family......What do you think????