Tuesday, May 1, 2007

Good news and bad news

See me smile? Making up for the picture post that had more of my brother


I'm trying to suck my thumb

Hello.
Well between last night and today it has been a bit of a reality check. Things have been going so well since CHamp and Bean came home, the reality of preemie life has almost escaped us. Sure we have the O2 and the monitors and have to deal with keeping the kiddos away from most public places, but things in terms of Doc appointments and such were going pretty well. And in terms of their sats, I never had a real scare.
Well last night was a little different. I was home with Champ during the day, and our nurse came in the late afternoon and I headed to work. Of course Edwin is away this week so she was alone with the two...I can be to my front door in less than 5 minutes from my job so I wasn't worried.
Well apparently Champ was hanging out in the lower 90s, which is very unlike him. I came home after 5 hours of work and saw him asleep in his chair. He was hanging out between 93-90. I thought it could have been him sleeping or the probe. I changed the probe and he woke up. The nurse was more concerned saying his sats just weren't as high as they normally are. He is able to be 92+ but he is usually 98-100. After some time of checking things over he was still hanging out low. The nurse said he sounded wheezy when she listened to him with the stethoscope. He also hadn't eaten well and had seemed more tired than usual to me.
Of course my fear was he was getting a cold. I am terrified of this because of the degree of chronic lung disease both he and Serena have. I am also worried about their narrow airways. I decided to call the pulmonologist oncall. The Dr called back immediately. He wasn't our pulmonologist but another Dr in the practice....he was great. We had already turned Champ back up to 300ccs (he had been weaned to 250 Sat and had handled it wonderfully.) The Dr said to go to 350 but not higher. If he didn't keep his sats above 91-92 then we would need to bring him to the ER. Since neither he nor Serena have breathing treatments, that is probably what tehy would do at the ER. The thought of going there turned my stomach. Meanwhile Edwin was smiling and cooing acting like he was fine. His color and temp were fine, we checked a bunch of times. It was actually a perfect temp. He didn't have any congestion or runny nose, so that was good.
Anyway, just as I convinced myself we were going to the ER (my mom came over and the nurse wsa going to stay with Beana) Edwin fell asleep on me and begin to sat very high. We watched him for an hour and he was 99-100 on 350ccs. I decided he was okay. He slept in my room and my mom slept over jsut in case (she was going to anyway with Edwin Sr away.) Champ was satting 100% all night long. Not one dip. I was so happy! It was just a little scare but reality check as to how scary the idea of a cold can be for our micropreemies.
Well then today we had the barrium swallow. I already planned on calling the pulmonologist while we were there since his office is at the same hospital. The barrium swallow went fine for Champ, but not for Beana. She was the original appointment, but we now do to Champ what we do to Beana and vice versa just because (remember audiology?) I just advocate for both because you never know with these 23 weekers. Well, it was found that Serena is aspirating with every consistency. Even thickened, she is silently aspirating. Sometimes she chokes, which was my original concern to the pulmonologist and the reason for the appoint. Even though lately she almost never chokes with feeds, she is definitely aspirating. When the speech therapist came to talk to me she just looked sad for me. I choked back tears as she said "well we will have to see what the pulmonologist wants to do about getting nutrition in her." My heart sank. My piglet, who mastered PO feeds in the NICU and is gaining weight so well "will have to find another way to get nutrition." I already started planning my case. We are not jumping to medical intervention for this...we're just not.
So I called the pulmonologist and he met us in radiology. First I addressed Champ, he listened to him and said he sounded clear and his sats had been fine for me since the am...oh yeah I turned him back to 250 this mornign after his 100% night and he continues to sat between 96-100. So he is all set..thank God. Then we addressed Serena. He said of course it is concerning, but that because she is doing so well clincially (i.e. she doesn't need more O2 while feeding, she is gaining weight well, she has not developed pneumonia, and she is not refusing to eat or nto eating enough), he does not want to take drastic measures either. For now, I will add 1/2 teaspoon of rice cereal per ounce to her formula. The slight thickening may help a little even though she showed aspiration with very high thickened barrium today. We will also make sure to feed her slightly reclined in a cradle hold (the way we feed her anyway.) Other than that we will wait it out. God forbid if she gets a cold or something, we may have to take the NG tube route, but in terms of a G-tube, he is no where near that conclusion as of now...and neither am I or Edwin Sr. I believe it has a lot to do with her vocal cord issue and we will have more answers hopefully after her bronchscopy which is in July. I am just continuing to pray she does not get a cold and that she can continue to gain weight and enjoy eating without issue.

So all in all it's been a scary reality check the past few days. In terms of issues, I believe we have been so lucky considering they are former 23 week twins. I continue to pray that things progress well and that they will continue to grow bigger and stronger. I know the road is a bumpy one and there's a lot in store, but for now we are thankful for everything positive, and trying to be educated of the scary stuff, but focusing on the happy stuff.

Here are our beauties after a busy day.





p.s. Daddy won his first fight yesterday. Here is an article from the local paper in Tenn.
Daddy in purple

Rodriguez wins top-caliber fight
Tuesday, May 01, 2007

By Kelley Smiddie
Staff Writer

The computer program used by officials at the Golden Gloves Tournament of Champions to determine the draw for each weight class spit out a national-championship-caliber fight in Monday's opening round.

Edwin Rodriguez from Worcester, Mass., fighting out of the New England franchise, began his quest for a second consecutive Golden Gloves title by winning a 3-2 decision over Jonathan Nelson from Little Rock, Ark., and the Mid-South franchise.

"This is the third time we've fought and I've beaten him three times, but he's a tough fighter," Rodriguez said. "He was in good shape. The last time we fought was in last year's Golden Gloves final. The time before that was in the U.S. nationals in '05.

"It's just disappointing this had to happen on the first night but, even better for me."

Dan Campbell, who will coach the U.S. in in the 2008 Summer Olympics, as well as the upcoming Pan American Games, said both fighters are rated in the top four by USA Boxing's national-team rankings.

"I thought it was a very close fight," Campbell said. "I thought it was close enough that I wouldn't have been surprised by whoever's hand was raised. Neither pulled away from the other. I thought Edwin got off good and ended good. I thought that was the difference in the fight."

Rodriguez came out and staggered Nelson with a shot about five seconds into the bout. He sent Nelson stumbling again before the round was over, but never to the canvas.

Rodriguez said his plan for the first round was he wanted to take it to Nelson. The third round he said stayed back more, and on advice from his corner worked a few 1-2 combinations.

Defense was as much a key for Rodriguez as his offense. During the second round he ducked a fierce swing that nearly sent Nelson over the top rope.

"One of the things that has gotten me so far is being elusive," Rodriguez said. "That's something good I have."

New England tainer John Curran said he thought it was a competitive fight but that Rodriguez may have been more consistent and landed the cleaner blows. He did credit Nelson for coming on strong early in the second round because he probably felt he was behind.

"Edwin was just textbook tonight," Curran said. "He slipped a lot of punches in. His straight right hand was good, then he'd move to his side. He was just very comfortable in the ring."


We are so proud!

6 comments:

Lathan, Lauren, Logan, London said...

Oh wow...so glad its turned out ok so far and we will continue to pray for healing and good news.

Wendy said...

Hello- I have spent a lot of time reading through your blog last night and today. I am not a mother of a micro preemie, so I cannot fully grasp what you have been/are going through. BUt, you seem to be doing an amazing job, and your children look so wonderful. Keep you chin up!

abby said...

Hi Steph,

Sounds like Beana and Hallie are doing very similar things vis a vis eating (our ped also suspects a bit of aspiration but as long as she doesn't get sick and keeps growing, he doesn't want her tubed). I don't have any advice other than keep on keepin' on. You are a great mom and both kids are so lucky. And I am thrilled the Champ is ok and that he just needed a bit more oxygen for a tiny bit of time.

Miracles said...

Such sweet little smiles they have.

Niksmom said...

I stumbled onto your blog by way of someone else's and found myself drawn in. I am the mother of a former 27wk mircopreemie. He was the same size as your twins and it sounds like they are going through some similar things we went through with Nik. When he was born, the docs told us "don't buy anything yet." After 209 days in the NICU and lots of surgery and challenges, he is now nearly 3 1/2.

Your twins are beautiful. Keep your faith and trust your instincts. If your gut tells you something...listen! These little miracles don't come with an "owner's manual" but they come with something just as good...awesome parents.

Good luck to you and your miracles.

Shannon said...

Hope all is okay there!!! No blog in a while...