just a candid shot of Xander I had to share. Too cute!
Sunday, May 30, 2010
OT evaluation
The boys had their first OT appointment. The first one is simply to evaluate the need for the service and to set some lose goals.
Braxton:
Braxton still has some reflexes that at 5 months (adjusted) he should not have. When he kicks his legs, both legs kick at the same time. If you put one leg bent, the other leg bends. His brain doesn't allowed him to work his body parts independent of each other. She said that this is something we can train his brain to do. So when he is pushing out both legs, we are to hold one leg steady. Same with his arms.
Up until a week ago, he wasn't consistently rolling from his tummy to his back. now I find him on the other side of the room. So this isn't an "issue" any longer.
He still stands on his toes when you put him in a standing position. She showed us what to do to, again, train his body/brain to not do this. The brain has a pattern that supposedly we can break.
Some of the behaviors that he was showing, was confusing to her, because she didn't know if that was developmental or from the nystagmus and strabismus http://www.visionww.org/drswindsor-nystagmus.htm
(the crossing of the eyes and the jerky eye movement). He goes back to doc on june 21 for his eyes. She wants to see him weekly.
xander:
She wasn't as concerned with Xander. Not that she was overly concerned with braxton, but xadner wasn't showing the same immature behaviors. Xadner is pretty age appropriate (for adjusted age). With him, we are working on sitting by himself and raising his body on his hands (during tummy time).
She thinks seeing him 2 times a month would be sufficient. I was pleased to hear that.
With that said, OT and PT will be put on hold for a week or so due to insurance issues. We are going to start going to Loma Linda outpatient rehab for their therapy. The facility closer to home didn't take the boys medical, therefore the weekly payment was going to be ridiculous.
Braxton:
Braxton still has some reflexes that at 5 months (adjusted) he should not have. When he kicks his legs, both legs kick at the same time. If you put one leg bent, the other leg bends. His brain doesn't allowed him to work his body parts independent of each other. She said that this is something we can train his brain to do. So when he is pushing out both legs, we are to hold one leg steady. Same with his arms.
Up until a week ago, he wasn't consistently rolling from his tummy to his back. now I find him on the other side of the room. So this isn't an "issue" any longer.
He still stands on his toes when you put him in a standing position. She showed us what to do to, again, train his body/brain to not do this. The brain has a pattern that supposedly we can break.
Some of the behaviors that he was showing, was confusing to her, because she didn't know if that was developmental or from the nystagmus and strabismus http://www.visionww.org/drswindsor-nystagmus.htm
(the crossing of the eyes and the jerky eye movement). He goes back to doc on june 21 for his eyes. She wants to see him weekly.
xander:
She wasn't as concerned with Xander. Not that she was overly concerned with braxton, but xadner wasn't showing the same immature behaviors. Xadner is pretty age appropriate (for adjusted age). With him, we are working on sitting by himself and raising his body on his hands (during tummy time).
She thinks seeing him 2 times a month would be sufficient. I was pleased to hear that.
With that said, OT and PT will be put on hold for a week or so due to insurance issues. We are going to start going to Loma Linda outpatient rehab for their therapy. The facility closer to home didn't take the boys medical, therefore the weekly payment was going to be ridiculous.
Tuesday, May 25, 2010
c/t scan complete
I can breathe...the scan is over. It started out rough, when the doctor came out and started to dismiss the plan that the nurse and I had made days before. The plan was to feed xander after he was all worked up from the IV, and he'd fall asleep and they could do the test without sedating him or putting him under anesthesia.
The nurse was absolutely awesome! She was not worried about the doctors first reaction, because she assured me that she was the one doing this for 14 years, not the resident. Basically she was saying he didn't know crap and she did (which was true!).
Needless to say, xander slept through it all! PTL! Now we wait for the results.
Sunday, May 23, 2010
c/t scan
xander has a c/t scan tmw. The scan is for the cyst that is growing near his eye. They want to make sure it is just a cyst and that its not growing towards the brain or veins aren't making a home within it. I'm nervous. For good reason.
two weeks or so before xander came home from the hospital, he had a MRI done. While he was on the table, sedated, he coded. What this means is his little heart stopped. He turned blue. Thankfully one of my primary nurses was with him, along with an RT and the doctor was right out the door. The nurse immediately did chest compressions, and his heart rate finally went up.
Was it because he was so weak? He was still on oxygen....no one really knows. but to play it safe, we are not doing any sedation tmw morning during the exam. He will go in super hungry (and cranky) and I'll feed him while they do the test. The part I'm going to hate is the fact he has to have an IV (for contrast). :( My cousin is coming with me... (thanks cuz).
praying for God's hand to be on my little guy.
two weeks or so before xander came home from the hospital, he had a MRI done. While he was on the table, sedated, he coded. What this means is his little heart stopped. He turned blue. Thankfully one of my primary nurses was with him, along with an RT and the doctor was right out the door. The nurse immediately did chest compressions, and his heart rate finally went up.
Was it because he was so weak? He was still on oxygen....no one really knows. but to play it safe, we are not doing any sedation tmw morning during the exam. He will go in super hungry (and cranky) and I'll feed him while they do the test. The part I'm going to hate is the fact he has to have an IV (for contrast). :( My cousin is coming with me... (thanks cuz).
praying for God's hand to be on my little guy.
Saturday, May 22, 2010
trip to great grandma's house
I got up enough courage to pack up the kids (and all the cargo) and head to great grandma's house (my grandma). It was a surprise. My grandma didn't know we were coming. She is on bed rest and not doing so great. Needless to say, she was thrilled when the troops rolled in.
After, we went to the Spectrum and rode the merry go round. Caden loved it. Felt like disneyland to him. (kid doesn't get out much!) :)
Thursday, May 20, 2010
miss the NICU
I never understood my feelings..and didn't think they were normal. That is, until this morning when I was on my preemie support website (www.inspire.com) and read about other moms who are having the same feelings as I did....do.
If you have never experienced what I have gone through, having a second home called the NICU, then you probably don't understand why I would miss it. Infact you would probably think it's pretty insane. How could anyone miss such a scary place.
But the truth is, as soon as I brought the boys home there was a sense of sadness. My life, for almost five months, of me going to the hospital, was abruptly stopping. Granted it was only for 2-3 hours a day, but those few hours allowed me to develop relationships with the nurses and the staff. Everyday I felt as though I was visiting my family. They went through everything with me. They grieved when we grieved and they rejoiced with us, when the boys reached different milestones. Two of my nurses have already come to visit us a couple times. They will be life time friends and we will be forever grateful for all they did for our little miracles.
It's nice to know that I am not alone when I still find myself thinking and missing the NICU. It's a place that will change your life. The things we saw and heard and felt will forever be engraved in my mind.
Interestingly enough, I still have the NICU phone number on speed dial on my phone (since we called multiple times a day). I see it there everyday...but I have yet to erase it. not sure why... perhaps that's another blog post...
If you have never experienced what I have gone through, having a second home called the NICU, then you probably don't understand why I would miss it. Infact you would probably think it's pretty insane. How could anyone miss such a scary place.
But the truth is, as soon as I brought the boys home there was a sense of sadness. My life, for almost five months, of me going to the hospital, was abruptly stopping. Granted it was only for 2-3 hours a day, but those few hours allowed me to develop relationships with the nurses and the staff. Everyday I felt as though I was visiting my family. They went through everything with me. They grieved when we grieved and they rejoiced with us, when the boys reached different milestones. Two of my nurses have already come to visit us a couple times. They will be life time friends and we will be forever grateful for all they did for our little miracles.
It's nice to know that I am not alone when I still find myself thinking and missing the NICU. It's a place that will change your life. The things we saw and heard and felt will forever be engraved in my mind.
Interestingly enough, I still have the NICU phone number on speed dial on my phone (since we called multiple times a day). I see it there everyday...but I have yet to erase it. not sure why... perhaps that's another blog post...
Friday, May 14, 2010
Our first outing
The boys, and I mean ALL the boys, had their first outing yesterday. We went (with help of course) to babies r us to buy them their crib mattress's. I had one cart with caden and a car seat and then one baby was in the other cart. Needless to say, It was a sight. And surprisingly, the babies did really well. That is until they got hungry. We made a bit of a scene with the loud cries--got a few questions and a few comments, "wow, you are a busy mom!" " oh my, how old is your oldest. wow, you are a busy woman!" (i get that a lot, the busy mom part). It's funny, I would be a rich women if I had a quarter for every time I heard that.
I won't lie. I was nervous to do this errand. But after the success, the world will be exposed to the chaos much more often (with my helpers of course). Okay, so maybe chaos is a little overstated.
Good job boys!
Tuesday, May 11, 2010
Sunday, May 9, 2010
A trip to Holland
Having a child born prematurely
is like planning a trip to Italy, getting of a plane and landing in Holland.
"But I don't know anything about Holland!I don't want to stay!" you say, but you do stay.
You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.
The important thing is that you are not in a filthy, plague infested slum full of pestilence and famine.
You are simply in a different place than you had planned.
it's slower paced than Italy, less flashy than Italy, but after you catch your breath, you
begin to discover that Holland has windmills.
Holland has tulips.Holland has Rembrandts.'
But everyone you know is busy coming and going from Italy.
They're all bragging about what a great time they had there, and for the rest of your life you will say, "Yes, that's what I had planned."
The pain of that will never go away. you have to accept that pain because the loss of that dream is a very significant loss.
but if you spend your life mourning the fact that you didn't go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.
author: Carol Turkington
Happy Mother's Day! This made me really appreciate what I have and where I am at. IT's a great perspective to have when your plans don't go your way. My life isn't what I thought it would be. My dreams as a mom have changed. But everyday I learn to appreciate my journey and thank God more and more for the path he is taking me on. I grieve my pregnancy on a regular basis. I never really felt my boys play in my belly. The traumatic birth, the exhausting NICU visits, the wires, the beeps, the scares, All which I never wanted. Through it all, I have grown. I have learned so much. I am more patient. More loving. More understanding. I am a work in progress... learning to be even more patient, loving and understanding.
is like planning a trip to Italy, getting of a plane and landing in Holland.
"But I don't know anything about Holland!I don't want to stay!" you say, but you do stay.
You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.
The important thing is that you are not in a filthy, plague infested slum full of pestilence and famine.
You are simply in a different place than you had planned.
it's slower paced than Italy, less flashy than Italy, but after you catch your breath, you
begin to discover that Holland has windmills.
Holland has tulips.Holland has Rembrandts.'
But everyone you know is busy coming and going from Italy.
They're all bragging about what a great time they had there, and for the rest of your life you will say, "Yes, that's what I had planned."
The pain of that will never go away. you have to accept that pain because the loss of that dream is a very significant loss.
but if you spend your life mourning the fact that you didn't go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.
author: Carol Turkington
Happy Mother's Day! This made me really appreciate what I have and where I am at. IT's a great perspective to have when your plans don't go your way. My life isn't what I thought it would be. My dreams as a mom have changed. But everyday I learn to appreciate my journey and thank God more and more for the path he is taking me on. I grieve my pregnancy on a regular basis. I never really felt my boys play in my belly. The traumatic birth, the exhausting NICU visits, the wires, the beeps, the scares, All which I never wanted. Through it all, I have grown. I have learned so much. I am more patient. More loving. More understanding. I am a work in progress... learning to be even more patient, loving and understanding.
Saturday, May 8, 2010
convertible
I was driving behind a red convertible today. For about 5 miles I watched as the two young girls danced and sang to their loud music and laughed as their hair was bouncing in the wind. We were in traffic...but that didn't seem to bother them. They were in a convertible. With the top down! It looked as though they were driving the the beach. hmm...must be nice.
I couldn't help but feel envious. jealous. It reminded me of myself...it was only a couple years ago I was doing the same thing. Made me really miss those days.
Then I get home and see my baby boys. As soon as I walk in the room (the second xander sees me) he smiles so big it brings me to laughter. I pick him up and playfully kiss him. He wouldn't stop giggling out loud. He laughed so hard that his little shoulders bounced up and down. I laughed.
I quickly forget about my jealous heart and thanked God for the life I lead now. Not to long from now, my boys and I will be laughing and dancing to our own loud music, as we drive to the beach. :)
I couldn't help but feel envious. jealous. It reminded me of myself...it was only a couple years ago I was doing the same thing. Made me really miss those days.
Then I get home and see my baby boys. As soon as I walk in the room (the second xander sees me) he smiles so big it brings me to laughter. I pick him up and playfully kiss him. He wouldn't stop giggling out loud. He laughed so hard that his little shoulders bounced up and down. I laughed.
I quickly forget about my jealous heart and thanked God for the life I lead now. Not to long from now, my boys and I will be laughing and dancing to our own loud music, as we drive to the beach. :)
Friday, May 7, 2010
therapy pictures
Sensory integration
They weren't too sure at first...then really enjoyed the rice.
caden enjoyed it even more!
bye bye BPD clinic
The last words I heard after leaving this week's appointment was, "have a nice life". Mr xander is cleared from the BPD clinic. [Bronchopulmonary dysplasia involves abnormal development of lung tissue. It is characterized by inflammation and scarring in the lungs. It develops most often in premature babies, who are born with underdeveloped lungs.] After going to the BPD clinic every month for 4 months, they feel he is doing well enough to be "discharged" from their services. Yes, his lungs are still fragile and still developing, but he does not need to see the pulmonary specialist anymore; his pediatrician can take care of all his health needs from this point on.
He is weighing in at 13 pounds...the dietitian thought that he was making good progress, however, he is still close to following off the growth charts. So she has decided to increase his calorie intake to 27 (My little chunker, braxton, is still at 22).
All in all, This was great news!!
Tuesday, May 4, 2010
A Loud and BUSY day
At last...I sit on my bed. Silence. Solitude. And it's only 5:45pm. Mr. Mac and Miss Cabernet Sauvigon accompany me, as I try to break away from the madness (and I mean that in all it's entirety).
My day started out good...I got plenty of sleep, got up to feed the babies around 4:30 and even managed to do a workout video. I vacuumed and even did a load of laundry. And then it starts.
Dad leaves for work today at 7am, caden is cranky and bored. AND Sick. green snot dripping down his nose is not a pretty sight. I quickly tell him (in the most enthusiastic voice I can conjure up), "why don't you go outside and play with your bubbles". NO more persuading needed after he heard the word, bubbles. Meanwhile, while I'm rocking (more like jolting because that's what he likes) braxton to soothe him, and making goo goo, gaa gaa faces (it's no wonder I am no longer fluent in English.) at xander to keep him from screeching, caden has quietly come back in the house and managed to pour a bottle of water all over the floor. I get it cleaned up. When I'm putting the towel back in the dirty clothes, I hear, "splash". He poured the rest of the water out. I was sure I put the bottle far enough away from him.
Needless to say, my house was loud today. The Crying, The conversations, more crying, tv, teacher's voice, not to mention the voices in my head saying, "remember to call the PT/OT doctor, oh and remember to follow up with the insurance company. Don't forget to call the pediatrician to get that referral processed." No, I never got to those phone calls. EVEN with my friends here helping (thank you by the way!), I wasn't able to take time to make my calls. The good news is, they will still be there tomorrow.
by the way...Braxton now has a runny nose. Poor guy can't breathe. This makes for a very fussy baby. A runny nose AND teething. Loads of fun.
2pm rolls around and the babies are still not asleep. Rocking, singing, making faces. Even tried doing exercises with them in an attempt to tire them out. 3 o clock, phil walks in, and of course all I want to do is hand over the babies and say, "here. your turn." But I can't. He's still working. I watch him walk up stairs, thinking, "you are so lucky!" 4 o clock, 5, and now almost 6, I can still hear them downstairs crying as I sit here typing.
I managed to cook a quick spaghetti dinner, take the trash out, pour the bottles. Phil walks up behind me and asks, "is everything okay." The answer...no. It was such a LOUD and BUSY day.
I'm blessed to have a husband that cares so much. As a result...here I get to sit. alone. :)
My day started out good...I got plenty of sleep, got up to feed the babies around 4:30 and even managed to do a workout video. I vacuumed and even did a load of laundry. And then it starts.
Dad leaves for work today at 7am, caden is cranky and bored. AND Sick. green snot dripping down his nose is not a pretty sight. I quickly tell him (in the most enthusiastic voice I can conjure up), "why don't you go outside and play with your bubbles". NO more persuading needed after he heard the word, bubbles. Meanwhile, while I'm rocking (more like jolting because that's what he likes) braxton to soothe him, and making goo goo, gaa gaa faces (it's no wonder I am no longer fluent in English.) at xander to keep him from screeching, caden has quietly come back in the house and managed to pour a bottle of water all over the floor. I get it cleaned up. When I'm putting the towel back in the dirty clothes, I hear, "splash". He poured the rest of the water out. I was sure I put the bottle far enough away from him.
Needless to say, my house was loud today. The Crying, The conversations, more crying, tv, teacher's voice, not to mention the voices in my head saying, "remember to call the PT/OT doctor, oh and remember to follow up with the insurance company. Don't forget to call the pediatrician to get that referral processed." No, I never got to those phone calls. EVEN with my friends here helping (thank you by the way!), I wasn't able to take time to make my calls. The good news is, they will still be there tomorrow.
by the way...Braxton now has a runny nose. Poor guy can't breathe. This makes for a very fussy baby. A runny nose AND teething. Loads of fun.
2pm rolls around and the babies are still not asleep. Rocking, singing, making faces. Even tried doing exercises with them in an attempt to tire them out. 3 o clock, phil walks in, and of course all I want to do is hand over the babies and say, "here. your turn." But I can't. He's still working. I watch him walk up stairs, thinking, "you are so lucky!" 4 o clock, 5, and now almost 6, I can still hear them downstairs crying as I sit here typing.
I managed to cook a quick spaghetti dinner, take the trash out, pour the bottles. Phil walks up behind me and asks, "is everything okay." The answer...no. It was such a LOUD and BUSY day.
I'm blessed to have a husband that cares so much. As a result...here I get to sit. alone. :)
xander's eyes
Xander had an appointment at the end of may, to get his eyes check. However, he has a small cyst on the side of his eye (near eye lid) that looked like it was getting bigger. Per doctors orders, I called and made the appointment for an earlier date.
Monday we went and the doctor ordered a c/t scan to make sure it was a cyst and nothing else going on there. (she's pretty sure it is). For the c/t scan they have to sedate him....that word scares the heck out of me, because of his experience in the NICU. IF you remember, when he got his MRI, he ended up coding (and what that means, is they had to do CPR on him!). He was still on the oxygen and not as strong as he is now...so it might not even be an issue. However, it also could have been that he was allergic to the sedation medicine. I will, of course, inform the radiologist of this and if I have a choice, I would rather have him intubated for the procedure. In the NICU they have the doctor, RT, and the nurse all right there to help in case of an emergency. In the lab...not the same set up. The thought of putting a tube down his throat makes me sad...but not sure I want to risk the other issues.
On a better note...his eye sight is great! He is seeing just as if he were full term baby! So the doctor doesn't want to see him for another year! :)
yeay!!!
Monday we went and the doctor ordered a c/t scan to make sure it was a cyst and nothing else going on there. (she's pretty sure it is). For the c/t scan they have to sedate him....that word scares the heck out of me, because of his experience in the NICU. IF you remember, when he got his MRI, he ended up coding (and what that means, is they had to do CPR on him!). He was still on the oxygen and not as strong as he is now...so it might not even be an issue. However, it also could have been that he was allergic to the sedation medicine. I will, of course, inform the radiologist of this and if I have a choice, I would rather have him intubated for the procedure. In the NICU they have the doctor, RT, and the nurse all right there to help in case of an emergency. In the lab...not the same set up. The thought of putting a tube down his throat makes me sad...but not sure I want to risk the other issues.
On a better note...his eye sight is great! He is seeing just as if he were full term baby! So the doctor doesn't want to see him for another year! :)
yeay!!!
Monday, May 3, 2010
recent pictures of the carmona boys
attempting to eat cereal by himself. You see how successful that went!
I love wearing over sized glasses. He did not want to take these off. Needless to say, he got some stares as we were walking around Victoria Gardens (thanks "nelly" for letting me wear your glasses!)
GG's weekly visit. She is in love. Can you tell. :)
My attempt at taking a shot of all three. Never seems to really work out. I need an assistant.
Braxton's new love. His fingers.
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