November 20th, 2007

Sorry it has been so long. We have been so busy.

Carver continues to do the same. He is still on a 1/4 lt of oxygen. He now weights 11 lbs 13 oz. We were finally able to get the formula he was on in the NICU - Similac Special Care 24 calorie. He really does well with this formula. He has expensive taste. It only comes in 2 oz ready to feed bottles at $80/case. A case lasts about 3 days - that adds up to $800/month. The Home Medical Service that we get all of our medical supplies from is trying to get approval from Medicaid to get the formula covered under our Medicaid card. We'll cross our fingers. If she is unable to get it approved, we'll have to try something else in another month or so - we can't afford the $800/month with a family of nine.

Carver had his BAER test last Wednesday. Unfortunately, the test results remained the same as the last test results. He is profoundly deaf in both ears. To give you an idea of what he is hearing..... a lawn mower's sound is at about 105 dB. They THINK they may have seen a response at 120 dB.

Normal range or no impairment = 0 dB to 20 dB
Mild loss = 20 dB to 40 dB
Moderate loss = 40 dB to 60 dB
Severe loss = 60 dB to 80 dB
Profound loss = 80 dB or more

Carver's ears were molded for hearing aides. They do not expect the hearing aides to work, however they believe they will keep the ear stimulated enough that when he is old enough to get a cochlea implant, our odds of success will be greater.

We have had so many appointments. There have only been a couple of days on my November calendar where we have not had an appointment. We have been fortunate to have the Speech Therapist, Physical Therapist, Occupational Therapist, and Dietitian come to our home. Carver is really starting to loosen up his muscles. He still has some stiffness in his legs, but we are seeing a big difference.

Carver will have his eyes looked at under anesthesia next Tuesday. The doctor still thinks the left retina is detached. He will take pictures and send them to Dr. Trese in Detroit. However, he feels like the right eye is doing really good. If we were only able to save one eye, the surgeries will still be considered a success. If we hadn't gone to Detroit, he would have been blind in both eyes.

Kinnick came home November 12th. She really had a rough time with her psudomonus in the PICU. After being home one week, her psudomonus returned. She is now taking an oral antibiotic to avoid going back to the PICU.

We're still adjusting to Kinnick being home. She has so many more needs then Carver. She is on a higher level of oxygen (usually at least 3/4 lt), needs suctioned all of the time, has 8 breathing treatments a day, has more meds, and has a G-tube for feedings. The G-tube makes me really nervous. In fact, the Home Health care nurse accidentally pulled it out the other day - that was scary! We had started to bottle feed Kinnick (small amounts as tolerated) prior to the return of her psudomonus. The good news is that she was really doing pretty good. We're hopeful that she will catch on quickly and we can get rid of the G-tube.

Kinnick missed her BAER due to being sick. We'll have to reschedule for December or January. She will have her eyes looked at under anesthesia next Tuesday. The doctor believes that her left retina is still detached, but believes the right retina remains attached and looks good. The doctor will take pictures and send them to Dr. Trese in Detroit. We'll wait to see what Dr. Trese recommends. We may be going back to Detroit for more eye surgery.

I haven't had a chance to read all of my preemie friend's blogs. I did browse them quickly and am excited to see them doing so well. I'm so happy for Jodi and Stacy (and families).

I hear my little ones crying, so better go. I'll write more when I can. Please continue to keep Kinnick and Carver in your prayers.

Love,
Shanon

November 3rd, 2007

Update on Kinnick and Carver.

Carver is still home and doing well. The formula that the hospital sent Carver home on (32 calorie/oz) has caused him to be constipated. Since he's constipated, he doesn't want to eat. We've been struggling to get 3 oz of formula in him every 3 hours. Our Pediatrician said to go ahead and give him 22 calorie formula with Karo Syrup. This really hasn't made much of a difference. We are lucky to get him to take 5 bottles. He's skipping 3 of his feeds and we struggle for nearly an hour to get him to take the 5 bottles. We've tried different bottles and nipples, but none have made a difference. I'm afraid that he's going to need a G-tube for feedings. We see a dietitian on Monday. Carver weights 11 lbs 12 oz. He lost weight while in the PICU at Wesley Hospital. He came home weighting 11 lbs. He has gained 12 oz since he has been home. That's pretty sad, since we aren't even getting him to take the amt of calories that he is supposed to have....guess that tells you how much the PICU was feeding him. Getting the PICU to feed him was an every day battle. They told me that they didn't have "time" to feed him. Instead, they just increased his calories to make up for the missing feeds. I'm frustrated since he came home from Michigan taking 4 oz a feed with no problem.

Carver remains on 1/4 lt oxygen. We haven't really touched it since he's been home.

Carver seen the eye doctor on Thursday. The eye doctor thinks that the left retina has detached, again. He was happy with the right eye. The right eye appears to be healing nicely. He'll see Carver again in a week.

Carver is scheduled for another BAER hearing test on November 14th. They will take a mold of his ears at that time to fit him for hearing aides.

Kinnick remains in the Wesley Hospital PICU. She was put on the high frequency ventilator for 4 days. She was then moved to the conventional ventilator for another 3 days and is now back on her nasal cannula. She's mostly on 3/4 lt oxygen. However, she gets irritated easily and really struggles to breath. She still gets suctioned very regularly. She was tested and it was determined that she has pseudomonas. This is a type of pneumonia that you only get in a hospital setting. She will not get to come home until she finishes her IV meds to clear the infection. The meds are given for 14 days. So, we do not expect her home for a least another week.

We feel like we have suffered some pretty big set backs being placed in the PICU. Carver's feeds have gone backwards to the point that he will most likely require a G-tube for feeds and Kinnick's lungs have been compromised due to the pseudomonas she got from the hospital.

Kinnick was also seen by the eye doctor (on Friday). He believes that her left retina has detached, again. However, like Carver, her right eye appears to be healing nicely. She will be seen again in a week.