Tuesday, July 29, 2008
We went to see our Pediatrician today. Kinnick gained another 2 oz. She now weights 16 lb 12 oz. Carver gained another 6 1/2 oz. He now weights 19 lb 12 oz. Guess we aren't having a problem meeting our 20 lb marker for the new ears. Both grew another 1/2 inch. Their heads are still the same size as my last post. On the preemie charts (which I'm told we won't follow anymore - don't know why) Kinnick's weight is in the 10 %, her height is in the 25 %, and her head is in the 5 %. Carver's weight is in the 30 %, his height is in the 30 %, and his head is in the 5 %. On the normal chart, neither are on the chart - so below the 3 % on everything.
Carver ate a little better the last couple of days. He's been eating about 2 oz of fruit (twice) a day and a couple oz of juice. Hopefully, he'll continue eating better.
We're going to do PT in the pool again tomorrow. I'll try to remember my camera this time. It has rained the last couple of days, so hopefully tomorrow will be clear.
I've scheduled the Detroit, MI trip. We will fly to Detroit, MI 8/26/08 with an EUA scheduled for 8/27/08. As always, we're hoping for no eye surgery and a quick trip. We could be back as early as 8/28/08.
Thursday, July 24, 2008
Kinnick and Carver were weighed again, yesterday. Carver gained 5.5 oz and Kinnick gained 2 oz. So, Carver is now 19 lb 5.5 oz. Kinnick is 16 lb 10 oz. I had to stop a couple of Kinnick's night feeds recently because of the G-tube leaking. Her poor tummy was so raw around the stoma that it was bleeding. She just cried huge tears. The leaking is under control again - not sure what we're doing to make it better or worse. I suppose it is possible that it is related to teething. I've been told that the saliva from teething causes add'l stomach acid and perhaps the stomach acid is causing the leaking.... who knows.
We're taking both babies off their "baby" formula. Kinnick is moving to a 1 year formula - Peptamen Jr. Carver is moving to Pediasure. These are both 30 cal per oz. This will reduce the volume that they have to consume in a day. Kinnick will only need 8 oz over night. She will be able to consume the rest by mouth during the day. We're hoping to somehow squeeze the add'l 8 oz in sometime during the day. It doesn't sound like much, but we're pretty much maxing out her tummy space right now during the day. So, it may take a while. Carver is still pretty much all G-tube, so no big change for him. He'll just get 7 oz at night. It's so crazy. Carver weighs more then Kinnick, but requires far fewer calories to gain weight. She's a busy bee. So, she's burning up the calories.
Kinnick and Carver are both working very hard to prop sit. We're just about there. I'm hoping they'll have it mastered within a month. Carver is rolling from back to stomach with no problem now. He's actually pretty fast at getting to his stomach, now. He loves being on his stomach. I think it's also helping some of his neck strength. He still likes to rest his head, but he's doing better. It's so hard to tell if he's just not interested in holding it because he can't hear and doesn't see well, or if he just can't do it. We're working with Carver to get him to stand (with help of course). He doesn't want to put weight on his feet. His legs cross a lot. He steps on his own toes. He's doing a little better this week, but he has a LONG way to go. Kinnick stands really good with help. She just doesn't want to bend her knees to walk. So, this is what we're working on with her. She knows how to roll to her stomach, but hates being on her stomach. I think it's because her stomach is always so raw. Hopefully the G-tube will disappear soon, or at least not get used much. Maybe then her tummy can heal and she'll tolerate being on her tummy more often.
I'll be scheduling another trip to MI in August. I'm so tired of the long distance travel, but it's something we have to do.
Friday, July 18, 2008
Wednesday, July 16, 2008
Today was our first day doing our PT in the pool. Unfortunately, we forgot the camera. I took a couple of pictures when we got home, but it's just not the same. They loved the water. We were in the water for at least 45 minutes. They didn't care for the sun, so they wore cute little matching hats. We're looking forward to returning to the pool very soon - possibly tomorrow.
Carver's Cochlear Implant update:
I forgot to update everyone on our July 11th appointment with Carver's ENT. His ENT was pleased with his weight gain (19 lbs) and said that he is ready to start the process to get the implants started. He said it would take about a month to get all of the insurance approvals. He's also going to review our latest CT scans from the hospital to see if there is enough information to avoid getting another CT scan. We should know more within the next month, but we expect to be getting his first implant in the next month.
Saturday, July 12, 2008
We've been trying to get Carver to lift his head. He can lift it, but doesn't seem to like lifting it. He's always looking for a place to rest his head. He should be able to see out of his right eye based on the mechanics of the eye. We're not sure how the brain is processing, but mechanically he should be able to see pretty good. We bought him a new mirror. He's always liked admiring himself in the mirror. We're hoping he'll lift his head to see himself.
Today was Kinnick and Carver's 1 year Adjusted Birthday. They enjoyed the same cake we had on their actual birthday - March 29th. Carver was awake this time and even sampled the cake. 17 weeks makes a big difference. The picture at the top of the blog was taken on their actual birthday.
Kinnick, Hayden (big brother), and Carver waiting for a piece of cake.
Hmmmm.... does this picture say anything about Kinnick's personality?? Poor Carver, he just takes what she has to offer.
Still waiting on our cake....
Oh boy.... it was worth the wait!!
Hey, this cake is pretty darn good!
Thursday, July 10, 2008
Tomorrow Kinnick and Carver will be 1 year adjusted. So, we are going to celebrate with a cake party. We froze the rest of their birthday cake from March. Hopefully they'll be able to eat a bite tomorrow.
Our Case Manager stopped in today to check on the babies. We received the following information:
16 lb 8 oz (gained 1/2 a pound in the last 2 weeks!)
Head: 43 cm
Length: 27 1/2 in (gained a couple of inches!)
19 lb (hasn't gained anything in the past 2 weeks - I think it's time for more food)
Head: 43 cm
Length: 28 in (gained a couple of inches!)
Kinnick is supposed to get 720 calories a day. We've been giving her about 900 the past couple of weeks. The doctor is going to review her latest weight and let us know how much she should be eating a day. She's eating so good. I think maybe too good - if that is possible.
Carver isn't eating much, at all. In fact, he's only getting about 550 calories. He has been gaining about a pound a month. However, it looks like he's starting to slow down. He doesn't seem to require as many calories as Kinnick. He's not as active as Kinnick and his lungs are better overall. The doctor is going to review his latest weight and let us know how much he should be getting a day. We're continuing to work with his oral feeds. He's starting to accept some juice. This is a positive step.
We see Carver's ENT tomorrow. We will discuss the cochlear implants and when we can get the first ear implanted. Hopefully within a month. I'm excited to get them going.
Carver doesn't really care to hold toys. He doesn't see well and even if they make noise, he can't hear the noise. The work of holding the toys doesn't seem to be worth the reward. Our speech therapist recommended adding another sensory input - like a vibrating toy. Well, it's hard to find vibrating toys that he can hold easily. In a nice way, she recommended going to a store that is not intended for children's toys. So, my husband and I (because neither of us was willing to go alone) went to the adult toy store and purchased a water missile that vibrates. It's blue and fits nicely in his hand. I tried to find one that looked like a rattle. He loves it and so does Kinnick. He actually holds it and bangs it on everything. Now, he's starting to grab and hold other toys. He also uses it as a teether. So, now you know what the blue missile is just in case it shows up in a picture.
Wednesday, July 9, 2008
Today, I had lunch with one of my favorite Wesley NICU nurses, Kelly. She got to spend some time with Kinnick and Carver. She took care of Kinnick and Carver during their 5 month stay at the Wesley NICU. It was very odd... Kinnick didn't even wimper when Kelly held her. She always gets upset when new people are in the house. Maybe she remembers her.
Kelly and Kinnick.
Kelly and Carver.
I took these pictures on July 3rd - prior to our big walk.
How do you like my pink shades? Do you think they match my dress?
I think I look pretty cool in my blue shades.
I thought I would try Carver's shades since he looked so cool in them. Besides, they fit better.
Wednesday, July 2, 2008
Tori, this post is for you and Derrik....
Tori is a friend that I went to school with. She is also a very good friend to my sister. Tori lost her son Derrik at a very young age to a rare form of childhood cancer. Every year since Derrik passed, Tori organizes a motorcycle ride and meal to raise money for childhood cancer research. This was their 6th year. Over 300 meals were prepared for this years ride. The shirts are too cute.
Thinking of you Tori. My heart goes out to you and your family.