All about Lauren

I'm sure most of you have noticed that this blog remains public. When I put the call out for email addresses I got a much bigger response than expected. I got many emails from other preemie moms who are following the twins. I've decided, for now, to leave it open. I remember a time when the twins were small and still in the hospital that I surfed the web for hours and read blog after blog. I needed to see how other "micro preemie" babies turned out. I still follow about 5 kids. I've gotten to really know these children and their families. I root for them. I pray for them. I celebrate every milestone made and get nervous when they get sick. I cried when one finally got her trach out. I didn't realize how many people were following Lauren and Alex the same way. People I never met. To think if they were born full term these people wouldn't be on this ride with us. To everyone who knows us, we'd just be another birth announcement on the refrigerator.
Now back to the blog:
Lauren
I realized I have never complied a list of Lauren's diagnoses for everyone so were goes:\
1) chronic lung disease- she will outgrow this...She already has MUCH better lungs
2) tracheal melasia- Her airway collapse (as a sidebar Lauren got top 10 worst lungs our vent dr has ever seen) This is getting MUCH better and she will outgrow this too as she grows more lung tissue. She has not collapsed down her airway in a long time. She no longer turns blue when she cries. We have not turned up her oxygen in months!
3) hypothyroid- It's not too bad and they suspect it is more of a brain problem than the thyroid itself. (I dont' think I've ever mentioned this diagnosis because it came at a time when Lauren was very sick)
4) brain atrophy- this is the one diagnosis that bothers me. I don't really mind the rest of it. A generalized shrinking of the brain. The big question is how much good brain tissue is damaged (or atrophied) vs connective tissue you don't need. Only time will tell us this. Also baby brains are very modifiable. She is making more and more connections everyday.
5) stroke- she has an area of damage in her right occiput area. This is the big area for vision. I can tell she has visual field cutting. I don't think she can see to her left very well. We are working on getting a vision specialist to analyze her vision. She is also much weaker with her left side. You can see it mostly with her hands. Her left hand dexterity is improving.
6)mild hearing loss- Her ABR showed mild hearing loss but this was also at a time when her ear canals were practically shut. (ie the test might not be accurate) Since that time her hearing has improved. I don't actually notice any hearing loss with her. We will attempt to get tubes in her ears in a few months.
7)MTHFR - blood clotting disorder..inherited , came from me.
8)SVC syndrome- she has a blood clot blocking her superior vena cava restricting blood flow back to her heart. (she also has 5 other blood clots) As time goes on she has and will develop collateral circulation which will improve the swelling and blood flow. SHe already is MUCH smaller from her nipple line up!
9) feeding dysfunction- She's had so many other issues we haven't worked hard on feeding. She gets "tastes" of food but nothing else. We are adding and extra hour of therapy a week just to work on feeding.
10) developmental delay- this one is obvious.
11) seizure disorder- Lauren is on Phenobarb for seizures which started after she got SO sick after her trach and g-tube surgery a year ago. She has not had a seizure in almost a year. I don't think she actually has a seizure disorder. I think it was a stress response from her body. This spring we're hoping to do this overnight test to get her off her seizure med...but she needs to be monitored in the hospital to prove she doesn't have any seizures and we wanted to wait until RSV season was over. (MAY!)

Sometimes this isn't so hard. Sometimes I stop being a nurse, respiratory therapist or physical therapist. Sometimes I stop doing constant physical assessments. Sometimes I stop diagnosing her. Sometimes I'm just a mom playing with her baby girl...

All is well.

Alex is SUCH a happier baby now that he eats without a struggle..he's getting his cheeks back! I'm working on condensing his feeds so for right now I will sneak into his room at midnight and feed him. At least I don't do a 4am feed anymore! His constipation has gotten MUCH better I'm only giving him 1 teaspoon of Miralax a day (I used to give 3!) It's the extra fiber in the Pedisure and more fluids. He is SO close to walking...he took ONE step for PT this morning..he just needs some confidence! He will walk forever if you just hold one of his hands.
Lauren is also progressing well. This past week she learned "so big" and raises her hands big and giggles (well, you can't HEAR anything but you KNOW she is laughing!) She sat up for me for 13 mins yesterday!I'm going on Friday to look at "the jackson center" for more therapy for Lauren. They do "conductive learning" for kids with strokes and CP. It's an intense program and insurance hardly covers it. I'm hoping to get her into the summer session which starts May 31st. It's 3 hours 2x a week so logistically, it's a bit of a nightmare. They do say they work wonders with kids with developmental delays.

Alex is back to his old self!

He's HOME!

Alex came home after just 48 hours in the hospital...He's tolerating his feedings so far (ie no barfing!) and it's weird that he actually soaks his diapers now! He finally pooped after almost 3 days(3 teaspoons of Miralax, Milk of Magnesia AND a glycerin chip!) so things are going well. For the next few days I'm going to feed him around the clock every 4 hours to help bring down his volumes (this means waking up at 1am and 5am to do feeding even though HE sleeps through the night!) Once he gets used to it we'll be doing 3-4 feeding during the DAY only! Thanks for all the prayers and continue to pray for NO REFLUX!

Alex's surgery

Alex's surgery was a great success! The Dr put in a "button" like Lauren's. He has 3 sutures keeping things in place. He will be uncomfortable until they are removed in 2 weeks. The GI doctor looked down his esophagus when he was asleep. He said there was no damage to anything from reflux! I couldn't be happier.He's got an IV in overnight and they will start "feeding" him through the G-tube tomorrow morning. They will start off slowly to see how he tolerates it. My hope is that he will be discharged on Thursday...the Dr said defiantly by this weekend. Prayers for a painless recovery! Prayers for his reflux to not get worse!

Alex gets a G-tube :(

Alex has surgery today...I had them move it up because the kid hardly takes ANY fluid at this point. The good news: the bottles and swaddling are gone! The bad news: Alex: needs surgery and will stay at Community North for a few days. There is a "moderate" chance this could make his reflux a lot worse and the profuse vomiting will come back. Pray for a safe surgery and for Alex to tolerate his new feeds. If you've been following the twins since the beginning you will remember Lauren has ALWAYS had more problems with her lungs and Alex has ALWAYS has feeding intolerance issues.

You take the good, you take the bad...

The good...
Lauren had a great check up at vent clinic...She had a great lung x-ray and perfect blood work. They dropped her vent rate to 14 and next vent clinic (March 24) they will run a "trach trial" where she take her off the vent for 15 mins to see how she does. After that we can do this for 15 mins 2x a day...I'm SO excited! Lauren will get to go UPSTAIRS! Or maybe even outside without dragging the vent around. Then in April the time off the vent will increase to 2 hours! the doctor said she expects Lauren to be fully off the vent within the year!
The bad...
Alex has been getting worse again with drinking anything :( Today he drank a total of 3 oz but he eats fine...after much consideration and much struggle we've decided to go ahead with a g-tube. He have a pre0op on Tuesday. I'm been having bad anxiety about Alex going abck to the hospital for surgery. I knwo in the long run this is what is best for both me and Alex. I won't stress about him hitting his volumes everyday. But part of this does feel like failure to me. It feels like if I could have just figured somthing out then that sweet boy would not need surgery. In addition, Alex got a REALLY bad haircut today. I'm going back tomorrow to see if they can "fix it". The pic is before the bad haircut.

going private

Last call for email addresses...going private tomorrow! mkrothrn@yahoo.com if you'd like to follow! Even if you "follow" this blog you will not be able to once I go private!

twins together!

First blog video of the twins together! As soon as I take the camera out Alex does nothing but stare at me! Lauren, however, is laughing at one of her nurses! (i'm sure you can tell by now I haven't been back at work for quite awhile due to the amount of new things on this blog!)

videos

Just a couple videos by popular demand... Also a reminder that this blog goes "private" next weekend. I do need your email address to "invite" you if you'd like to continue to follow mkrothrn@yahoo.com Thanks!

Shout out.

I would like to take this opportunity to give a "shout out" to Lauren's fantastic nurses. Mary drove during the ice storm last night when her county had declared a "weather emergency". She was stopped by the police and asked where she was going. She came 2 hours early and worked a 12 hour shift to make sure I wasn't alone if the power were to go out. Carla is always my first call when I don't know something about the vent or what the next step is. She has saved me many a time from just going to the hospital. Marie works Lauren every day. I've seen dramatic improvement in Lauren since she has taken the case. She frequently stays an hour over her time to go home if Lauren needs extra help. This is not a job to these nurses. It is there mission. I get calls and texts though out the week. We all work together for the common goal of Lauren.
My mom requested more video of the twins. I took this one of Alex yesterday. I will post another of Lauren soon. The picture was taken this morning when I caught that Lauren actually got herself turned all the way over on her belly with her but up in the air! This was quite a feat considering how much tubing she has!

ICE storm 2011

We're in the lull of 2 winter storms BOTH with potential to knock out power...this is VERY scary to me. Here's the plan...we have a back up battery for lauren's vent. This will last 9 hours. This however, will not power all her other electronic equipment (ie pulse ox, neb, humidifier, feeding pump etc) Nor will it power our furnace. We do have a back up generator we borrowed from a neighbor (thanks Tom!) But this will not power our furnace either and we cannot build a fire (with 6 oxygen tanks in the house!!) So the plan... the power goes out and I switch Lauren to the back up battery (we should get another back up battery in today) then we would start the generator to run her other things once they run out of power. If more than 5 hours goes by without power we'd call the ambulance to get a ride to the hospital. We did fine though last nights ice storm but we've got another one coming! Pray for no power loss!
In a further note I am going to make this blog private. If you'd like to continue to follow then just send me your email address and how you know the twins and I'll add you to the list! My email is mkrothrn@yahoo.com We will go private in about 2 weeks!