Friday, April 30, 2010
Last nite I had the brilliant idea to sleep with Braden. I figured he'd stay off his tummy and would keep his nose tube in. Boy was that a mistake. ha ha! Being pregnant and staying in one position doesn't work well at all. I could not sleep and on top of that Braden pee'd all over me and the bed. :-( That was just two hours after we went to sleep. So much to my surprise I was able to put him in his own bed and we still had the nose tube in this morning. Yeah!!! We were also able to take off the arm splints (No Nos). Braden did great without them. He is such a good little guy. It's like he knows that if he doesn't leave that alone he'll have it longer. So now we are in the safe time where if the tube comes out we still have enough data. Hopefully we will find out the results on Monday. We will keep you all posted.
Thursday, April 29, 2010
Today Braden had to have another Impendance Probe test. :-( It's a 24 hour evaluation of reflux. This time with meds to make sure they are working for him. Let's hope they are because this test is tough on him. The nurse actually said I am the first parent to ask for No No's. That's the arm bands to keep Braden from trying to pull the nose tubing out. You can tell in the pics how unhappy he is... poor little guy but he is such a trooper. I wish I could take the arm bands off but it's just to easy for him to yank the tube out. Also, the little box that's attached has to follow him wherever he goes. Soooo that's another issue. Thankfully the test will only be till 1 pm tomorrow. That is if we can keep the tubing in. If not we may go in earlier. As long as the nose tube stays in place a minimum of 8 hours the test will be good and no do overs.
Friday, April 23, 2010
Well today we got our 3D/4D not sure which ultrasound. :-) We hope to scan a pic of Grayson's little face later on today and post. We only got him from the nose up since he had his arm across his face. He is looking really good. He is already 5 lbs 10 ozs. As my Dr. says a good size baby. So we have one more shot next week and then anything goes. Our Dr. said if Grayson decides to come early we won't stop him. Kinda scary and exciting all at the same time. I am anxious as usual not for his arrival but the delivery part. I am soooo hoping things go smoothly and not too dramatic this time. I am hoping my uncomfortable state will cause me not to care once he's ready to come out. lol Now I know why people complain at the end. It's hard to get around, you can't breathe very well and you just can't get comfortable. I however am thrilled to be this pregnant and thrilled to have this opportunity. I am so very excited about having Grayson and him not having to go thru what Braden has and thankful for the both of them. This is such a happy and exciting time for us.
Wednesday, April 21, 2010
This week has been decent. I have been fortunate not to have any alarming symptoms with Grayson. He's been fairly active but not hurting me as much. :-) Today we had several appts. and a lady I met in the hall of our Pediatricians office asked me how far along I was? I said I'm on week 34 so not too much longer. She then says the next 6 weeks will seem like forever. lol I was like great thanks. She was actually a very nice lady and we got to talking about Braden and his whole amazing story.
We started today really early at 5 am. Braden had an 8:30 appt. for the passy muir testing. He did really well with the therapist but didn't do well with the Passy Muir valve. I guess with all the pollen in the air his allergies were set off on the way there. :-( So he was a bit congested and had a horrible gag reflex. I felt horrible as on the first try he had tons of tears and almost threw up. I hate it so bad when that happens to him. As usual though he was a trooper. We decided after that not to do much more with him and just try again in a few weeks. He's scheduled to return May 14 at 1 pm. Which should be a much better time for me and Braden.
After our appt. the vallet brought out our vehicle and we have a flat tire. ugh! So I called Stephen and told him and he suggested driving to Beaman Toyota. It was very close so we filled the tire with a little air at the Mapco and went on. We made it to Beaman with no problems and they squeezed us in for a repair. I was so shocked when they finished and didn't charge us a dime.:-) To make things even nicer Braden took his nap while we were waiting. He is such a good boy. By the time we got out there really wasn't enough time to go home. So we went on to Brentwood for lunch. I found a good Chinese take out. I fed Braden while Paula got our lunch. I was so excited that Braden ate so well in the car. He has really been doing good lately. So we were able to stay on schedule despite the tire issue. The toughest part of today was knowing that Braden tolerated all the events of a long day and had to end it with an RSV shot. :-( What a reward right? I can't wait till he eats Ice Cream or candy so he can have a treat after days like today. When we finally got home I fed Braden again and we both passed out till Stephen got home.
Friday, April 16, 2010
Here are some new pics of Braden with his haircut. He always looks so much better when he gets one. I couldn't believe how much hair was falling when Sylvia was cutting his hair. He did much better this time in the chair and did not cry. Hopefully, the more often he goes the better he will do.
This week my Mom has stayed with us. Braden has warmed up to her and every time her or Stephen enters the room he goes straight for one of his balls. He is getting really good at throwing. He is so cute because he scoots backwards constantly. It's like he can't get far enough away.
We have several appts. over the next few weeks. Next week Braden gets his last RSV shot for the season. That appt. is scheduled on April 21 at 1:30 pm and he also has another passy muir evaluation at 8:30 am that same day. Then Friday April 23rd I have an ultrasound appt. at 9:30 am. I can't wait to see Grayson in 3D. We have missed out since going to the high risk Dr.. Their equipment isn't as up to date as Innervisions. On April 28th Braden has his yearly Eye appt.. I am really hoping he is still good and won't need glasses. April 29th at 1 pm he has to have the PH probe again. Not fun for Braden or Mommy. I don't know if y'all remember but it is a tube that goes down his nose like his old NG feeding tube but smaller. We have to put his arms in restraints to keep him from rubbing it out. He will not be happy and as strong as he is I'm sure it'll be a bad day. Thankfully it's only for one day and the next morning he will get it out. That is if he hasn't pulled it out by then.. like last time. On May 10th Braden will have his throat scoped by the ENT. This is the big one where we will find out what kind of reconstructive surgery Braden will need for his trach reversal. We will also find out if he can handle having the surgery or if adjustments have to be made on meds to control swelling and throat irritations. The ENT does not want to do reconstructive surgery if the airway can't heal properly. So the PH probe should let us know if Braden's Nexium is keeping his reflux under control. We are nervous yet excited about Braden getting his trach out. We really would love to see him get past this last big hurtle.
Grayson thankfully is still doing well. I am in my 33rd week and although I am exhausted most of the time I am thankful. Last week just a day or so before shot time I was experiencing nausea and stomach upset. Grayson was so active I felt like he was going to tear thru my tummy. I didn't have labor symptoms but this is how I felt a few days before I went into labor with the twins. Fortunately, my progesterone shot stopped the issue. I spoke to Dr. Wingos nurse Beth and she said to continue drinking as much water as possible and definitely take my progesterone shot on week 35. Week 35 shot will be the last one. So just a few more weeks. Which will hopefully keep Grayson in at least till full term 37 weeks. I can't believe we are so close.
Sunday, April 11, 2010
Everyone knows that we are super careful with Braden and keeping him from illness. Stephen and I have discussed a few times when will we start letting up on all this isolation. Well the unfortunate reality is not any time soon. Especially, during RSV season which is now. I am a member of a yahoo group for preemies. Just this past week I have read two stories of micro-preemies as old as 3 and almost 4 who were hospitalized for RSV. Both children came close to dying. Both children were extremely premature like Braden. Most people think of illness as a common thing with their kids. They don't understand the difference between a micro-preemie and a full term kid. They assume once they are home they've overcome their battle. Well that's just not true. It takes years for a micro-preemie to overcome their prematurity and the effects that it will have on them. Some children have issues that they will never overcome but will learn to live with... For those of us who are first time parents like me this is not paranoid behaviour. This is important for all of us to remember just how important it is to protect our little ones. Keeping them out of public as much as possible is good for them. Better than exposing them to another hospital stay and possible near death experience. I don't think any of us want to go thru something like that again. My opinion anyway is just this and I am sticking to it.
Sunday, April 4, 2010
Braden has officially mastered climbing on the furniture. He's attempted in the past and has been successful a few times. However, now he is all about climbing on a daily basis. :-) He is also cruising even better than before and free standing is improving. It's very exciting. Braden got a new ball over the weekend. Thought y'all would enjoy the video.
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- Our little Miracles
- This is the story of an amazing set of twins that were born 16 weeks to soon and their little brother Grayson. Kaleigh Grace who lived an amazing 13 days and we miss daily. Braden our super hero who is now 4. This is our journey in parenting with challenges above and beyond the norm.