Tuesday, December 30, 2008
The drugs have kicked in!! Kinnick is eating again and acting normal. She's still coughing up a bit of junk, but less and less by the hour.
The pantyhose/bandanna solution that we've been using to keep the CI on Carver worked really good today. He was even able to eat with his CI on today. We want him to have it on every waking hour. He's on his last program and doing fine. Still no big response, but he is tolerating it without problem.
Bob and I are going to take a little time away next week. I start my part time job Monday, January 12th - as long as I pass my drug test. Passing a drug test when you're a micro-preemie mom shouldn't be a problem - unless you're too tired and take your kid's drugs. Other then that, there really isn't anything that exciting going on in our home.
Tomorrow is New Year's Eve. Wow, another year is almost gone. Time just goes too fast. I think that the older we get, the faster time goes.
Monday, December 29, 2008
There's not much going on right now. We're working our way through Carver's program settings on his CI. He's ready for the last setting before we go in for new settings (mappings). So far, we haven't seen anything exciting. The settings are set pretty low, so it's not really expected that we'll see much, yet. We're just slowly getting him used to sound. We don't want to overwhelm him or scare him. The hardest part is keeping the darn magnet on his head. The bandanna helps. We've even tried putting pantyhose on his head (like a little gangster hat). The pantyhose helps even more then the bandanna. I'll have to post some pics - they're quite funny. If I put both the pantyhose and bandanna on at the same time, this works even better. The downfall is that his head gets hot and he gets irritated. My pilot caps finally shipped today. I ordered them on the 20th. The holiday really slowed my order down. I'm hoping the pilot caps are the answer.
Kinnick is sick AGAIN. We're still able to manage her at home. She's refusing to eat or drink anything (thank God for the Mic-key button). This has gone on for about 2 weeks. She's been coughing up some nasty green slime and white foam. She hasn't had a temp and her O2 sats look good, so we didn't take her to the doctor until today. They couldn't find anything wrong with her except her usual crackles in her lungs (a little more then normal, but not much), a snotty nose, and a sore throat. They went ahead and treated her for a possible sinus infection and pneumonia. Hopefully the drug will knock whatever is going on and she'll start eating again. Anytime she gains a little weight, she gets sick and loses weight. Grrrrr.
K&C will get their 3rd synagis shots on Wednesday. I can't believe that we've almost made it to January without being admitted to the hospital. We attribute this to having such good nurses. They are all over keeping K&C's lungs clear. I know I say this all of the time, but we are so fortunate to have such good nurses. They are fabulous! We love them and I know Kinnick and Carver love them. Thanks to everyone who prayed for good nurses. We never underestimate the power of prayer. God has really taken care of us.
Friday, December 26, 2008
Oh, what a fun Christmas...
What could this be?
I don't know, but I got a big one, too!
I like my new little guy. He's pretty giggly.
This one is going to help me learn to balance myself.
Did I tell you how much I like my new Elmo? These coins aren't bad tasting, either.
This is my new friend. He has a CI, too.
I really like pushing the button on this new toy!
This guy loves it when I punch him!
I figured out what was in the big package. Every girl needs a good purse!
Saturday, December 20, 2008
Ok, so we are learning as we go. It appears to be impossible to keep Carver's CI on. He's constantly rubbing the back of his head and knocking it off. So, after talking to another CI mom (Jenny), she recommended a pilot cap. I've ordered one, but until we get it, Carver is wearing a bandanna. He actually looks pretty cute with the bandanna on his head. Now, it is staying on for longer periods of time. He still knocks/rubs it off, but 1/2 the time it adjusts itself back into place.
Friday, December 19, 2008
It was a success! Carver was activated today and we got a consistent response. He cried whenever they turned the volume up. He would stop crying when they turned it back down or off. So, we are definitely stimulating the auditory nerve. Now his brain just has to figure out what to do with sound and how to process the sound.
Thursday, December 18, 2008
Today Kinnick got on her knees and hands all by herself. She quickly shifted to her side and rolled to her back, but she did manage to get up all by herself. Of course, I missed it. Nurse Marci has been working with Kinnick on hands and knees for a few weeks. Kinnick learns quickly when she wants to do something. It's so exciting to see her continue to make advancements. Just a month ago she was working on getting to a sitting position by herself. She has completely mastered that task. Now she can sit up and lay down by herself within seconds. Hopefully she'll be trying to crawl over the next month. I'm just so thankful to have such determined nurses. They work so hard with Kinnick and Carver.
I broke down and bought a baby walker today for Kinnick. She's struggling with moving her legs right/left. It doesn't seem to make sense to her. The treadmill training that we will start next month is supposed to reinforce this motion. However, it is only 10 minutes once a week. We're looking at gait trainers. This is more of a medical walker. The gait trainer that we are looking at has a harness system that is similar to the harness system that will be used for treadmill training. It is made by Kaye Products. Hopefully we'll get one ordered after the first of the year. I need my PT's help in ordering the correct size. I'm probably making a mistake buying the baby walker, but I thought it might help Kinnick figure out the whole walking thing. It will give her something to work on while we wait on treadmill training and her new gait trainer.
Carver has also been getting on his knees. He can't get on his hands, but he can get on his elbows. He just doesn't know what to do after he gets up. He gets so excited that he just pushes and pushes until he falls flat. He's really showing signs that he can see things. I can't wait to see what he will do once he can hear. We're still scheduled to activate Carver's CI tomorrow at 11:00. I'm crossing my fingers that the weather is good and he gets his first shot at hearing tomorrow.
Wednesday, December 17, 2008
I heard back from Koch today. They offered me my old job part time. I'll start the first of the year. They've been so good to me. I'm looking forward to getting out of the house and feeling a little more normal, but still being home enough to feel connected to everything that's going on with Kinnick and Carver.
Tuesday, December 16, 2008
Carver's activation was cancelled until Friday due to bad roads. What a bummer. I know it's only a couple of days, but I've been living for today. I think the roads are supposed to be bad again on Thursday, so hopefully it won't be cancelled again. The rep that is going to help with his initial mapping is coming from Oklahoma.
Monday, December 15, 2008
Tomorrow is the BIG day. Carver will get his first CI "turned on". We can hardly wait. We have to be there at 11:00. It sounds like it's going to be a crappy day to be out and about. Hopefully the roads will be good. I'll post pictures of the big event tomorrow.
Saturday, December 13, 2008
Our new Rifton chairs have arrived. They are a little big, but we had to order to allow for growth. Kinnick sits pretty good in her chair.
Carver needs a little extra support to sit in his chair. The chairs are great for play, but not what we expected for feeding. The chairs are too short and too heavy to carry back-n-forth between the great room and kitchen. I'm going to try to order locking wheels to see if they will raise the chairs enough to allow a decent height for feeding and allow us to move them without hurting our backs.
Other good news... my PT is back from vacation and agrees that we should order the stander for Carver. She also agreed to order the gait trainer for Kinnick. So, hopefully we'll have something ordered in the next couple of weeks.
My new weekday nurse is doing great. She's experienced with developmentally delayed children. She's going to make a great addition to the team. I'm already seeing some improvements with Carver's standing. Between her and Marci, I think we're going to see some great improvements real soon. Her and Marci seem to have the same drive and determination. We are so fortunate to get 2 really great nurses. This will make going back to work part time so much easier. I haven't heard anything since my interviews last Wednesday. However, they needed to get some questions answered about part time. The job I interviewed for is a new role. They haven't had anyone in the role part time. Hopefully I'll hear something the first part of the week. I was planning to go back to work January 1st. The boss said that she was going to be very flexible with the hours. I would need to work at least 20 hrs a week and no more then 32 hrs a week. I can work 8-12 M-F. If I have a morning appt, I can work 1-5 or 11-2 or whatever I needed to work to get my 4 hrs. If I have to go to MI for eye surgery, I could work a couple of 8 hr days and take a couple of days off to go to MI. It all sounds too good to be true.
Friday, December 12, 2008
Friday, December 5, 2008
Kinnick and Carver got their 2nd synagis shots on Wednesday. They were less then thrilled. They are big enough now that it takes 2 shots - 1 in each leg. Kinnick FINALLY gained some weight. She now weights 17 lb 10 oz. That is a 10 oz gain. Carver also gained some weight. He is now 20 lbs even!! That is a 14 oz gain. I have no idea what we did different this month.
My new weekday nurse is turning out to be really good. Good enough that I have decided to try going back to work part time. This will still allow me to go to appointments and will allow me to still be involved in K&C's daily needs. I have some interviews on Wednesday, so I hope to hear more by the end of next week.
Kinnick is sitting up more and more by herself. I thinks she's got it pretty well mastered. We're still working on trying to get her to crawl - we have a long way to go. Carver hasn't really made any progress. We're still working on sitting.
Kinnick is screaming so I need to run. I just wanted to put out a quick update. I'll try to update more soon.
Tuesday, November 25, 2008
What are we up to? Well, Kinnick is still working on getting used to her new glasses. She does pretty good until she runs out of toys to play with within reaching distance, then she takes her glasses off and plays with them. However, she keeps them on for a few hours at a time. Carver is still working on sitting. He still has a long way to go, but he makes a good effort most of the time.
Carver's incision is healing very nicely. The hematoma is already completely resolved. His hair is starting to grow back. He'll be ready for a hair cut in another 2 weeks. Activation day is set for December 16th. What a great Christmas gift - hearing! We can hardly wait to see his reaction to sound.
Kinnick got her first haircut - complements of Nurse Marci. She wears lots of hats at our house. Kinnick looks like a smaller version of Katie Holmes, now. So cute!
Kinnick is starting to show some interest in crawling. We put her in a crawling position and rock her back and forth. She used to HATE putting her hands on the floor. She's starting to like it. Hopefully we'll have her crawling over the next couple of months.
Both kiddos had to get 3 shots the other day - Hepatitis A, Flu shot, and DTAP. They weren't too happy about the shots, but really didn't have any negative effects after getting them.
Kinnick and Carver will get their second Synagis shots next week. It seems like they just got their shots. They're both doing pretty good right now. Kinnick is sounding a little junky, so hopefully she's not coming down with cold number 4. She needs to grow. She still weights 17 lbs. Carver weights 19 lbs 2 oz. We stuff them until they about split at the seems, but they still don't gain weight. It's crazy.
We're going to celebrate Thanksgiving at home this year with no visitors. Kinnick and Carver will enjoy Gerber 2nd foods sweet potatoes, ham, and applesauce.
I hope everyone has a wonderful Thanksgiving.
Thursday, November 20, 2008
Not much going on here. We have a couple of new nurses starting. Nurse Jane will start December 1st. I can already tell that she is going to be a great addition to our family. I'm excited for her to start. She'll work Mondays and Fridays. Nurse Marci will work Tuesdays, Wednesdays, and Thursdays. We have another nurse starting this weekend. Her name is Maria. She'll work Saturdays and Sundays.
Carver is still recovering from his first CI surgery. What I thought was swelling has turned out to be hematoma (blood pooled between the skull and scalp). My pediatrician wasn't too concerned about the bleeding. I'm worried about it. We see the surgeon tomorrow. I'm hoping this won't slow down activation. The bleeding could take a month or more to go away.
Carver has started looking at the lights during vision therapy. This is a pretty big deal. He's avoided them in the past. This shows that his vision is improving. He has cortical vision loss. With this type of loss, it takes lots and lots of therapy to get working vision. It's not much, but the more we do, the more he will get.
Monday, November 17, 2008
Kinnick sat up all by herself today - from a laying position!!! She has been trying so hard to do this and finally she did it. She sits for long periods of time, but has only been doing it when we put her in a sitting position. Now she can sit or lay whichever she wants. Don't know what this will do to her night feeds.... that will be another story.
I can't remember if I posted letting everyone know that we qualified for over $4,000 per child for equipment. We are ordering new activity/feeding chairs for each of them on Monday. The chairs are nearly $1,500 a piece. They can eat in these chairs or play in these chairs - kinda like the bumbo only better. The rest of the money will be spent on a gait trainer and hopefully a stander for Carver. This is still being discussed with PT. They don't feel like he needs one. I on the other hand REALLY think he needs one.
Saturday, November 15, 2008
Carver is doing much better today - no fever. I can see some bruising now, but really no add'l swelling.
I forgot to mention that we seen our Neurologist again this past Tuesday. We seen his PA the last time we were there. I asked the Neurologist about the diagnosis that we were given for Carver by his PA. After looking at both Kinnick and Carver, he gave me the following diagnosis for each of them. Carver has Spastic Quadripersis CP. I suspected this because I felt like the CP was not isolated to just the right side of his body. What does this mean? Lots of physical therapy. We'll just have to work even harder to get Carver moving. The good thing is that Carver is doing much better sitting. He's still very wobbly, but he's making a better effort. He's also been able to get up on his knees and elbows with no help. So, he's really trying to move. Of course, he's still rolling all over the place. Kinnick has Hypotonia - she's very floppy. She can sit and stand, but she's just really weak. She's been working really hard on getting into a sitting position by herself from a laying position. She'll still need a lot of Physical Therapy, too. Both babies are continuing to make progress, so this is positive. We'll see the Neurologist again in 4 months. Hopefully both babies will be doing something new by then.
Friday, November 14, 2008
Post surgery update.
Carver ran a little higher temp yesterday evening. His temp got up to 101.1. I was a little worried, but it quickly went down with motrin. He slept good. He woke up whimpering a bit around 5:00am, but slept well the rest of the night. When he woke up at 5:00am, I gave him another dose of motrin and he went right back to sleep until 8:00am.
This is a picture of Carver yesterday evening when he was running his 101.1 temp. He looks a little miserable, but didn't complain too much. He's hanging out with his new animal friend that Nurse Marci's Mom gave him when she visited him in the hospital. Thank you Anita! Carver loves his new friend.
Here's Carver first thing this morning. He looks a little more swollen, but woke up in a good mood.
This is a picture of carver from this afternoon. You can see a little bit of the swelling in front of his ear, but there really isn't much to see.
Here's another picture from this afternoon. You can see a little swelling behind the ear and down the neck - again, not much to see.
Another close up picture from this afternoon. You can see his ear sticking out a bit from the swelling, but overall I think he looks pretty good. We haven't seen any blood from the nose, ear, or really anywhere other then a bit that you can see under the tape.
He's had a little bit of a cough and he is gagging more then usual, so there may be a little drainage going on. He still has a slight temperature 99.0. I'm hoping the temp will be gone by tomorrow. I called the doctor today to report the 101.1 temp and he still wasn't concerned. He said this is typically with Chronic Lung babies post surgery. The intubation causes the throat and lungs to get a little junky which causes the fever. He's on an antibiotic, so the doctor isn't too concerned. He'll be on the antibiotic through the weekend for sure and up to 10 days if necessary.
1 day closer to activation!
Thursday, November 13, 2008
We stayed one night at the hospital. The doctor was in to see Carver at 9:00am to remove his bandage. We were home by noon :o)
Here is a picture of carver right after the bandage was removed. The incision wasn't nearly as big as I thought it would be. It actually looks pretty good.
Carver is still running a low grade temp (99.0). The doctor insists it's nothing to worry about. He's been a little fussy today, but overall he's had a pretty good day. He's careful not to roll over onto his left ear. It's a little swollen and sore. We'll see the doctor next Friday to have the tape removed.
The day we've been waiting a LONG time for....
Today Carver got his first Cochlear Implant - Left ear.
This is the Ear they are going to Implant first - can you see the black "X"?
This is Carver a few hours after surgery.
The surgery took about 2 hours including prep time. The doctor was pleased with how well the surgery went. He said that Carver had a normal mastoid anatomy. However, he noted that he had a poorly developed round window niche and membrane. He said that he sees this often in small children with profound hearing loss. I'm not sure if this is related to the extreme prematurity or what caused this.
Carver cried and whimpered the first 12 hours after surgery. He got one dose of morphine (this probably wasn't necessary), tylenol, and motrin. He woke up several times in the night crying for just a few seconds. By morning, he acted like he felt much better. He started running a low grade temp (99.0) about 4 hours after surgery. The doctor wasn't concerned with the temp. Carver's acting like his head is heavy or that he is dizzy. I understand that their can be some blurred vision and dizziness the first few days after surgery. So far, no complications. We're looking forward to activation day - in about a month if he heals well.
Our first experience with St. Francis Hospital was very good. The staff was all very nice and made our stay comfortable.
Thanks for all of your thoughts and prayers!
Tuesday, November 11, 2008
Tomorrow is the big day! Carver gets his first Cochlear implant. We have to be at the hospital at 6:30 am. Nurse Marci has agreed to come to work early to take care of Kinnick and Aunt Tonya is going to spend the night tonight. She's going to stay until Nurse Marci arrives and then she'll take big brother Hayden to Preschool. What would I do without such wonderful help! We are expecting at least one over night stay at the hospital. We're going to St. Francis Hospital this time. We haven't used this hospital, so I'm hoping it's a good experience.
I'll post before and after pictures as soon as I can. Please pray that everything goes well and that Carver is on his road to the hearing world!
Monday, November 3, 2008
Kinnick got her new glasses. She's not sure what to think of them. We're working on getting used to them. She keeps running her fingers down her nose and then tries to push the glasses up her nose. She thinks that her cannula is on top of her nose.
Kinnick's lenses are so magnified that it makes her eyes look huge. The right eye (+18) is magnified more then the left eye (+10). Her glasses are a light pink, but it's hard to see that in the pictures.
A few Halloween pictures...
Kinnick was an Iowa Hawkeye cheerleader and Carver was an Iowa Hawkeye football player for Halloween. They didn't get to go out, but enjoyed passing out candy with mommy and nurse Marci.
Big Brother Hayden in his homemade pre-school costume - a giraffe. He was an Iowa Hawkeye football player for evening. Aunt Tonya and Uncle Bill took Hayden out trick-or-treating. He got way too much candy!
Wednesday, October 29, 2008
It's been a while since I posted. K&C are both still sick. Kinnick has been on a really strong antibiotic. She started having diarrhea a few days ago. Today, we stopped the antibiotic and she is being tested for C.diff, rotavirus, and other bacteria. It's possible that the antibiotic killed all of the good bacteria and left the bad ones. She's on a daily probiotic, but that didn't seem to make a difference. We should know more tomorrow when the test results come back. She seems to be handling the diarrhea. She's a little fussy before she poops, but other then that, she's fine. Her lungs sound much better and we're ready to turn the O's down a bit. Carver still has a snotty nose. He blows bubbles out around his cannula all day. We are suctioning him at least 4-5 times a day. His cold doesn't seem to bother him. He just hates the suctioning. On a good note, we were finally approved for synagis shots. This is the shot that we got last year for RSV. It doesn't prevent them from getting RSV, but if they end up getting RSV, it should be less severe. Kinnick ended up getting RSV last year and was only in the hospital 10 days - which isn't too bad according to the doctors. We'll receive the first shot 11/4/08.
Carver's rolling has really helped strengthen his neck muscles. He's holding his head up so much better. His head still tires easily, but just look how good he's holding it up....
We are preparing for Carver's first Cochlear Implant. He is scheduled for 11/12/2008. We cut his hair short so that all of his hair will blend nicely after surgery. He looks so cute!
We're working on Carver's trunk control. He's loving his new exercise. Can you see all of his teeth? He's smiling so big, you can see all 5 of them!
Tuesday, October 21, 2008
Here we go. Winter colds are starting early this year. Kinnick has had no less then 3 colds already. They all seem to migrate right to her lungs. So far, we've been lucky and have not had to admit her to the hospital. We had another very close call last night. I had to bump her to 2 1/2 lt of oxygen just to keep her in the low 90's. This is the most she's been on since last winter. We made it through the night with a lot of suctioning, breathing treatments, and no sleep. I took her to the doctor today and she has an ear infection and lots of junk in her lungs. This is her first ear infection. The doctor gave her an antibiotic shot, some steroids, and an oral antibiotic. She's already feeling better. We have her down to 1 lt of oxygen and she's satting in the upper 90's. She's still coughing up a bunch of junk from her lungs. She won't eat and she wants to be held all of the time. I had them check Carver out while we were there. He's had a stuffy nose and now a runny nose for the past couple of weeks. His is all in his head. His ears are clear (he's never had an ear infection) and his lungs are clear. It's so hard to keep our 3 year old away from the babies toys. Hayden goes to daycare/preschool and brings everything home. He's been coughing for a couple of days. It's also hard for Hayden to remember to cover his mouth when he coughs. We remind him all of the time, but he's 3 and it's just not something he thinks about when he's having fun.
I also wanted to let everyone know that we do think of all of you often. Our lack of phone calls does not mean that we don't care about you. We are just so consumed with the special needs of the twins and the other children in the house. The past 2 years have been very stressful and we're doing everything we can to keep things together. I've had to leave a job that I worked at for nearly 20 years - leaving us dependent on 1 income after purchasing a new home that was a decision based on 2 incomes. Our lives have been changed in a lot of ways over the past 2 years. We're adjusting and things will be fine. Hopefully things will be a little more normal for us over the next 2 years. So, please don't feel like we don't care. We're just exhausted and try to enjoy any downtime that we might come across. I created the blog as a way to communicate consistently with all of our friends and family. I knew we were too busy to update everyone personally and visiting is out of the question until the twins are off technology. Things will and have been improving. Please hang in there. We still love you.
Saturday, October 18, 2008
Kinnick has had the lenses removed from both of her eyes due to extreme ROP. She's trying so hard to see things. So, we're going to replace the missing lenses with glasses. Her right eye will be at +18 and her left eye will be at +10. This should make up the difference for the missing lenses. Both retinas still have fluid under them, so this won't give her 20/20 vision. The hope is that the fluid will continue to go away allowing the retina to attach. It will take about 3 weeks to get the glasses made.
We liked this pair, but didn't like the extra clear piece on the bridge.
This is the pair we decided to get. They will be a size smaller and will be a pale pink color. They should look similar to the one above with the clear piece on the bridge. She didn't seem to mind them on her ears. Hopefully she'll leave them alone and let them do their work. I'm excited to see what difference they make.