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...