Wednesday, April 30, 2008
So just in case you were wondering if these three boys really do have parents, here we are.
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
Tuesday, April 29, 2008
Monday, April 28, 2008
Friday, April 25, 2008
I think babies should have come with a light system yellow light for ear problem, blue for tummy trouble, ect..........
Thursday, April 24, 2008
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
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!
Tuesday, April 22, 2008
Monday, April 21, 2008
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
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.
Friday, April 18, 2008
Wednesday, April 16, 2008
Tuesday, April 15, 2008
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!
There will be an update later today or tonight.
Sunday, April 13, 2008
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.
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
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.
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
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
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.
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
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
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
Thursday, April 3, 2008
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.