Friday, 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.
Thursday, 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).
Tuesday, 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.
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.
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.
Wednesday, May 14, 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.
Tuesday, May 13, 2008
It's been a few days since I have updated everyone. Carver had to go back on O2 during the day. His heart rate was up and he was having strange de-sats at night. He would de-sat into the 60's. I would have to get up and shake him a bit to get his attention so he would breath better. So, I have him on 1/8 lt during the day. I had him on 1/8 lt at night, but the de-sats and heart rate were still an issue. So, I have him on 1/4 lt at night. Once his heart rate returns to normal and he no longer has the strange de-sats, I'll try him at 1/8 lt at night. My Pulmonologist was just a little too aggressive this time with the weaning. The last time she didn't want me to wean at all and this time she wanted him off O2 during the day. She even said that I could wean him off O2 at night over the next 2 weeks. So, MY plan is to get his sats and heart rate back to normal and then slowly wean from 1/8 day and night, 1/16 during the day and 1/8 at night, 1/16 day and night, 1/32 during the day and 1/16 at night, 1/32 day and night, 0 during the day and 1/32 at night, 0 day and night. I was planning on waiting at least 2 weeks between each change. Hopefully, we will be off O2 in the next 4 months.
Carver seen a pediatric eye doctor on Monday. The eye doctor thought that his right eye was slightly near sighted. However, he did not feel like glasses were necessary at this time. He didn't feel like there was anything he could do at this time for the left eye since the retina is only attached around the edges with fluid under the retina. He didn't think glasses would help the vision. Patching is also not an option since we want to encourage him to use as much vision as possible regardless of which eye he uses.
Carver has been struggling with feeds every since we got his Fundo Plycation and G-tube. He has a hard time getting anything (including saliva) down the Fundo. He gags when anything is put in his mouth. I feel like we have taken a huge step backwards with his feeds. We will see the surgeon that did the surgery on Monday.
I was able to wean Kinnick to 1/4 lt O2 day and night with no noticeable difference in her heart rate or sats. I'm not in any hurry to drop her O2 since she still has a stridor. We see Kinnick's ENT tomorrow to discuss the stridor and paralyzed vocal cord.
Kinnick's G-tube and stomach continue to be a problem. She's still leaking and has terrible gas in the intestines. We seen the GI doctor today. We are going to remove a couple of the meds (reglan and erythromycin) and see if the gas goes away. These drugs were added to help with motility, but could possibly be adding to the problem. If this doesn't work within a week, we are going to try another formula that breaks down even easier (EleCare). If this doesn't help, she will be scoped to search for a block. In addition to all of this, she has so much stomach acid that the acid is breaking the balloon on the G-tube about every 12 days. The G-tube should last 4-6 months. We are buying 2/month at $225 each. On a good note, Kinnick is doing fabulous on her baby food and juice feeds. She is easily able to eat a full tub of fruit or vegetables in a sitting and about 1/4 oz of juice. She's getting her full volume of fruit and vegetables in for the day. We'll continue to work with her juice via the honey bear and try to add some meat to increase calories. If we can get her to take more via the honey bear, maybe we'll be able to reduce the G-tube feeds. I can't wait to get rid of the G-tube.
Kinnick still has quite a bit of blood in her left eye from the surgery. We'll see the ophthalmologist next week. I'm hoping the blood is starting to go away. The blood can cause add'l scar tissue that will make the vision worse. If the blood doesn't go away soon, she'll need another surgery to remove the blood - I'm guessing that will have to be done in MI.
We have a High School graduation for Kirsten this weekend and an 8th grade graduation for Gregory on Wednesday. I enrolled Kirsten at WSU on Monday, so just waiting for the huge bill that will come in July. I enrolled Harrison in Football for the fall on Saturday. I even got my hair cut and my eyebrows mowed last week. As always, we are busy, busy, busy at our house.
I hope everyone had a wonderful Mother's Day.
Thursday, May 8, 2008
We took our first walk today. The sun bothered Kinnick and Carver's eyes. We tried sun glasses, but they wouldn't stay on their faces. So, we had to hide under our blankets.
Yesterday, we seen our pediatrician. Carver weighed 17 lb 3 oz. Kinnick weighed 16 lb 6 oz. I'm told that both are still below the 5th percentile. For the G-tube mess, he suggested putting Calmoseptine around Kinnick's G-tube. It seems to help, but it is still a mess. However, I do think it's getting better. Both had to get 4 shots. I always hate it when they get shots. The next few days are crabby followed by temps.
Today, we seen our neurologist. They were a little concerned with Carver's tone - mostly his right arm and hand. His right arm and hand have become increasingly stiff. He still doesn't believe meds are necessary. He'll see Carver again in 4 months. He just wants to make sure things don't get worse and Carver is able to learn to sit and move a bit more. If his development doesn't progress due to the stiffness, he will consider meds to help with the high tone. He was pleased with Kinnick and said that he wouldn't need to see her again for 8 months. His only concern with her was that she couldn't make any sound. Her left vocal cord is paralyzed. He thinks this is why she is unable to make sound. He doesn't believe it is neurological, but will follow to make sure. I talked to him about Kinnick and Carver not being able to sit or crawl, yet. He wasn't too concerned at this time. He thinks they'll be sitting soon. We've been working with both of them and they are doing a little better, but they're still not able to sit without help. I also talked to him about Carver not wanting to lift his head. He attributes this to not being able to see or hear. He expects things to change once Carver gets his cochlear implants. He spoke highly of the ENT that will implant Carver and said this doctor wouldn't implant someone unless he thought it would make a difference. So, the expectation is that the implants will work. No neurological damage is expected to prevent the implants from working. We're still looking at July for the first implant as long as Carver is 20 lbs.
We will see the new eye doctor on Monday. I'll update after the appointment.
Our architect finished our landscape plan. It was a little too expensive for a 1 income family. The plan was $30,000. So, now we have to go through the plan and decide how much we'll do ourselves vs the architect. I think we can do most of the work. We'll let the architect do all of the trees. The plan calls for 18 trees. I'm not thinking we need 18 trees. We'll start with the front yard and work on the sides and back in the Fall. Bob will get the job started this weekend as long as the weather cooperates. We still struggle getting nursing on the weekends, so I won't be able to help much.
Other then this, we are getting ready for graduations and graduation parties. I am also meeting with Kirsten's college advisor on Monday. Hopefully, we'll have her schedule ironed out and know the damage ($) when we leave the appt.
We're looking forward to our Cabo trip starting May 29th. I'm starting to stress about leaving the babies. I know they'll be in good hands with my Mom and sister, but I worry about my little ones when I'm not here to see them. I've only gone 1 day without seeing them since they were born. However, I need some rest and relaxation. My wonderful nurse offered to work some extra hours while I'm gone. The babies love her and are very comfortable with her. She's been such a blessing. Thank you again for all of the prayers for a good nurse. We couldn't ask for anything more - she's fabulous.
Monday, May 5, 2008
Carver continues to sat in the 90's during the day. However, he de-sats while napping. So, he's obviously not ready to get rid of the O2 while sleeping. I have reduced his night O2 to 1/8 lt and he's doing just fine.
Kinnick has been satting well during the day, so I'll probably try reducing her O2 to 1/4 lt later this week.
Both babies are doing better with their Gerber 1st foods. They still do not take much, but it's a start - maybe 1 full tub a day. I've also been giving them a little Oatmeal and Apple juice for breakfast. They're not sure what they think of the Oatmeal. Sometimes they just scrunch up their little noses at me. They like the apple juice. I give it to them via a honey bear cup. This looks like the little honey bear bottles that you buy in the store filled with honey. They have a straw in them that allows me to squeeze the juice into their mouths. Then they just have to swallow the juice. We're hoping this will help us transition to a tippy cup once they are able to hold the cup themselves. We only give this drink while sitting in the highchair.
I can't remember if I said this or not, so forgive me if I'm saying this a second time. Carver will get his Cochlear implants once he hits 20 lbs. We're hoping this will happen by July. He will be 1 year adjusted July 11th.
We see the pediatrician tomorrow for a check-up. We've been having terrible G-tube problems. Carver has a lot of granulation tissue that we can't seem to get shrunk. Kinnick's G-tube is leaking really bad. I think she has learned to relieve herself when her tummy is full (due to slow motility). She forces the stomach contents (formula, meds, etc) out around the stoma. This causes a terrible sore around her stoma due to the stomach acid. Some mornings she wakes up soaking wet from her nightly feed. I have to change her and the bed. It's a mess. She does the same thing during her daytime feeds. I can't tell you how many times a day we change her clothes. I can't wait until they are both able to eat all foods by mouth and drink all fluids.
Carver will see a new eye doctor next week to see if glasses will help his vision. Kinnick will not be evaluated until she goes at least 3 months without eye surgery. The eye surgery changes her vision, so it doesn't do any good getting lenses that may change right after you get a pair.
We will also see the neurologist this month - kinda anxious to see what he has to say. Not much has changed since our last visit. So, I'm not sure what to expect.