May 23, 2008

I heard back from the Surgeon that did Kinnick's NEC surgery.  He reviewed the upper GI study and says that the colon was dialated.  He says this isn't normal (don't know why the hospital or GI specialist didn't say anything about this).  He wants to do a lower GI - 24 hour study.  He suspects a narrowing where the last surgery was done.  We've scheduled the study the 2nd week in June.  

We started Kinnick on Culturelle for kids - a probiotic.  It can be taken as a dietary supplement.  It is supposed to improve digestion and help maintain regular bowel movements and normal stools.  Since Kinnick has been on it, she is stooling 2-3 times a day.  I'm not sure where all of the poop is coming from, but it seems to be helping to get it out.  She doesn't have diarrhea, it's all very formed.  Some of the stools are so large, it's hard to believe it came out of her.  It looks like something that could have come out of an adult.  I read about Culturelle on Hallie's blog (listed under my preemie friends).  I asked the surgeon if this would help Kinnick.  He didn't think it would be the answer to our prayers, but said it wouldn't hurt.  Last night, Kinnick didn't leak much at all around her G-tube.  She also had minimal leaking today.  She still has a great deal of gas in her intestines.  I'm sure it is very painful.  She handles the pain so well.  I think she's just used to all of the pain.  I'm hoping with more normal stools, maybe the gas will go away.  I'm hoping tonight is another good night.

Who is the fairest of them all??

May 22, 2008

Another one of my babies has graduated.  Gregory graduated from the 8th grade last night.  Time just goes so fast.  It's so hard to believe how quickly our children age.  One minute we want them to grow up and the next minute we want our babies back.   The church had a nice Mass and then a reception at the school.  We are planning one big graduation party in June to celebrate Kirsten and Gregory's graduation.  The picture above is Gregory and Mom (me).

May 20, 2008

Update on Kinnick and Carver's G-tube issues...  

I took both babies to see the surgeon that did the G-tubes and Fundos.  The surgeon said that Carver's granulation tissue will continue to form around the stoma until the site heals - about 6 months.  He cut the existing granulation tissue away from the stoma and then used silver nitrate on the stoma - yuk!  I hate seeing these things done.  I have such a weak stomach.  The gagging that Carver does could continue until he is 8 or 9 years old.  I don't like this answer.  He didn't do this until he got the Fundo.  I think he is still refluxing and that he needs meds for the reflux.  I'll continue to look into this issue.  He gags so bad that he's going to tear the Fundo.  The doctor didn't seem to be too concerned about Carver.  However, he is very concerned about Kinnick's issues.  He doesn't feel like the leaky G-tube is due to a bad Mic-Key.  He feels like there is still something wrong with the gut.  This is what I've been saying all along.  I'm happy to finally have a doctor that agrees.  He is going to review the upper GI study that was done in February while she was in the hospital.  They tracked the upper GI all the way to the lower bowel.  If he doesn't see anything on the x-rays (the hospital and GI specialist didn't see anything in February), he's going to schedule a Lower GI - 24 hour study.    I still believe there is a partial block where the last surgery was done due to scar tissue.  Since this is the surgeon that did the surgery, he should know exactly where to look.   Kinnick has been hospitalized twice this year due to stomach issues.  The stomach issues have never resolved.  The GI specialist sends us home saying that the issue must have resolved since she is pooping.  We've just been altering feed schedules to accommodate her intolerance.  We do smaller feeds and fewer of them - leaving the majority for a continuous feed while she sleeps.  This has kept things moving well enough to keep her home, but hasn't fixed the root cause.  Hopefully this doctor will find the answer to our problem.  I just pray that we don't need another surgery.  Another surgery would be a terrible setback for her.

May 19th, 2008

Today was a big day.  My oldest daughter (only daughter besides Kinnick) graduated from High School.  Kirsten and Mom (me) are pictured above.  Kirsten has been a wonderful daughter.  I can't say that I've ever had any problems with her.  She's been a joy all of her life.  Well.....the first 3 months of her life, she was a bit of a pain.  She had terrible colic - I wasn't sure any of us would survive those 3 months.  She's growing up so fast.  It seems like she was Kinnick and Carver age just a year ago.  I don't know what I'm going to do when she moves out on her own.  I'll really miss her.

Today was also my 40th Birthday.  I was so overwhelmed with emotion and the thought of my daughter graduating that I didn't think too much about turning 40.  I really don't feel 40, but I am.  We had some cake and ice cream and will celebrate more when we meet my twin sister and her husband in Cabo later this month.

May 18th, 2008

Big brother Hayden has been a big helper with the landscape job.  Hopefully the front beds will be ready for plants, trees, and scrubs by the first of June.  Bob (my husband) works every day of the week except Wednesdays and Sundays.  For some reason, we seem to get rain on Wednesday and Sundays - this really slows the project down.

May 14th, 2008

Kinnick seen her ENT today.  He scoped her in the office and was able to see that the left vocal cord is definitely paralyzed.  He believes this to be related to the PDA ligation or multiple infections while in the NICU.  The cord is in midline position which he says is the best position to be in if the left vocal cord is paralyzed.  He says that having a paralyzed vocal cord can allow for aspiration, but since it is midline, it isn't as big of a risk.  He seen no evidence of aspiration, but says that there is still a lot of swelling due to acid reflux.  Kinnick is still refluxing with her Fundo.  I suspected this since she has so much gas (it has to go somewhere).  I believe the leaking g-tube and reflux are all related to a gut problem.  I believe the gut problem is related to the NEC she had while in the NICU.  She had part of her intestine removed due to a block.  I believe there is some scar tissue from the NEC that is causing a partial block that slows her gut down.   We will see this ENT again in 3-6 months.  He considers the paralysis to be permanent, but says the right vocal cord should compensate for the left and that she will be able to speak.  He doesn't recommend doing anything at this time.  He is more concerned about the reflux and is going to send a note to our GI doctor.  He was pleased with how well her baby food feeds were going - he considers this to be very positive considering the paralysis.  We are very lucky that the positioning of the left vocal cord is not allowing aspiration.  I will see the GI doctor again in about 4 weeks.  I asked if there was a better reflux med and he said that he believed the drug she is taking is the best for her age.  He also believes that until the reflux is under control, she will have a hard time coming off the O2.  So, we're back to figuring out the stomach issue.