Sunday, June 29, 2008
Kinnick's G-tube has been leak free at night for the past couple of weeks. She has had minimal leaking during the day. Most of the leaking during the day is due to stress when someone new is in the home. This can be a Rainbow's employee (service provider for PT, OT, VT, etc.), a new nurse, or a friend or family member. She's learned to relieve herself around the stoma site when her stomach is too full. She has such a small tummy. We have a hard time getting any more then 4 oz of food and 2 oz of juice per feed. If she gets too full, she just pushes the food out around the stoma (G-tube entrance). The last couple of days I've increased her to 5 oz of food and 2 oz of juice per feed. She's been handling it pretty good. She still gets 16 oz of formula at night. The goal is to get all of the calories and fluids moved to days by mouth so we can get rid of the G-tube. It's a slow process, but we are well on our way. She needs 720 calories per day. We have to count every single calorie that goes into her. We're finally hitting the full 720 calories. We were told to expect a weight loss when converting to baby food. Well, she did lose weight. She is now 15 lb 14.5 oz. She's such a tiny little thing. Once we are able to increase her feeds, I think her weight will increase. We even add 1 tsp of butter to her vegetables 1 x per day. This adds 50 calories and tastes good. Since we added the butter, we've noticed a weight increase. I'm not sure how much she actually lost, but we can tell that she's started gaining some weight back.
Carver still doesn't like eating. We're lucky to get 3 bites in per feed and he just lets the juice run back out of his mouth. He's gaining like a champ. His last weight was 19 lbs even. We're still shooting for 20 lbs by next month so he can get his new ears. Hopefully his eating will improve with his new ears. I also think the Fundo is bothering him. It takes about 6 months for the Fundo and G-tube to heal. Hopefully we'll see a change in September. This will mark 6 months from the date he got the Fundo and G-tube.
We're really starting to get bored staying in the house all of the time. We're going to start physical therapy in the pool in July. We're taking a class with Rainbows at the YMCA and our Rainbows PT is going to start doing our PT at our neighborhood pool. We're excited about getting out and doing something new. I bought the cutest matching swimsuits for the kiddos. I'll post a picture of them wearing their new suits and matching hats.
Kinnick and Carver are both still on 1/8 lt of oxygen. I tried to reduce Kinnick to 1/16 lt, but she didn't seem to handle it. Her heart rate went up slightly. I'm going to wait a couple more weeks and try again. Carver isn't ready for a change, yet. He still has a lot of strange de-sats while sleeping. I'm supposed to talk to the pulmonologist about this at our next visit.
Saturday, June 28, 2008
I worked for the same company for almost 20 years. During that time, I had really good health insurance. The health insurance was privately funded and was very inexpensive for employees. Since it was so good and affordable, I always covered the entire family (9 people). When we had Kinnick and Carver, we were given Medicaid for the first year of life. We qualified due to their birth weight. Medicaid is typically income based and we did not meet the low income guidelines, but qualified for 1 year based on the babies birth weight. Medicaid is always a secondary health insurance if you have other health insurance. So, my privately funded health insurance was always hit before the bill went to medicaid. Kinnick and Carver's medical bills were in the 2 million dollar range (per child) the first year of life. Luckily about 1/2 of the medical bills get written off when you use a preferred provider. After write offs, we have exceeded 1 million dollars per child. We have a 2 million dollar maximum coverage. After you hit 2 million dollars, the child or individual is dropped from the insurance. This stinks because eventually we will lose medicaid and our good insurance will no longer cover Kinnick and Carver. In January of this year, we added all of the family to my husband's health insurance. It costs a lot more then my insurance and doesn't have as good of coverage. This added about $500/month to our bills. This was necessary in case we max out Kinnick and Carver's maximum coverage causing us to lose their privately funded insurance and we lose medicaid. When I quit my job, we chose to keep my health insurance under Cobra. This costs an additional $1,000/month. I'm being told that we will continue to qualify for medicaid based on the babies technology needs. This is effective in August with the new TA waiver. However, we will have to pay a family premium for the insurance. I'm not sure how much this will end up costing. I'm told there is a sliding scale that is based on income. So, this will add an add'l monthly cost for health insurance. Anyway.... the GOOD news is that I've been working on getting the State to help me pay for my Cobra insurance. I found out this week that the State is going to start paying my Cobra insurance premiums. In fact, the state is going to back pay me for any premiums that I already paid. Thank God, once again. This will help us afford the new medicaid premiums that we'll have to start paying.
My next job is to fight for disability income for the babies based on their disabilities and their income. They are permanently disabled (Kinnick is blind and Carver is deaf), but I'm being told they do not qualify for income assistance because they are basing their income on the household income and not on the fact that Kinnick and Carver do not have an income. It is important to get this assistance because at some point, I could lose the medicaid and nursing assistance. Their disabilities will be very costly long term and the assistance would ease the pain of the significant bills associated and may allow me to continue to stay home caring for them. I have an Aunt that has fought this battle for one of her children and she has agreed to help me. Thank you Aunt Kathy! As always, I will share any tips that I get for any of you that may need the same assistance.
Friday, June 27, 2008
Wednesday, June 25, 2008
I just want to take a minute to tell you how blessed we are to have such awesome help. We (along with many of you) prayed for a really good nurse. Well, God blessed us with more then we could ever ask for. In January, a new nurse was sent to our home. I was a little nervous because this was her first Home Health case. She hadn't ever worked with a G-tube, babies with fluctuating oxygen needs, vision impairment, hearing impairment, feed problems, or even giving breathing treatments. She was shown the ropes the first day. She didn't really participate - instead she was watching and learning. I wasn't sure she was going to be the right nurse for us. We had so many bad nurses. On her second day, she came in and did everything by herself. She has come to be a dream come true for us. She is fabulous! The babies love her, we love her, my other kids love her, she treats my babies as she would treat her own. I don't know what we'll do if we ever lose her. Thank you Nurse Marci for spending your days with our babies. We love you and recognize your contributions!
Monday, June 23, 2008
Cousin Nicholas (left) and Big Brother Hayden (right) having a serious conversation.
Nicholas and Hayden smiling for the camera.
Mom's best friend Suzette.
Mom's Aunt Kathy (married to Mom's Dad's Brother, Gary).
Big Brother Hayden enjoying water fun in the yard.
Cousin Jessica enjoying water fun in the yard.
Cousin Jessica having more fun in the water.
Uncle Bill having a talk with Carver. This can't be good.
Mom's Dad Alan (bottom left), Uncle Gary - Alan's Brother (bottom right), Aunt Pat - Alan's Sister (top).
Grandma Ashland (Mom's Mom) and Gregory.
Cousin Terri (Kathy and Gary's daughter) and Kirsten.
Daddy enjoying a break on the deck.
The graduates - Kirsten graduated from Bishop Carroll Catholic High School and Gregory graduated 8th grade from St. Francis of Assissi Catholic Grade School.
We celebrated with many family members today. We had a great time. I'll post the pictures I have. Sorry that I missed so many. I kept busy with kiddos and making sure everyone had what they needed.
Wednesday, June 18, 2008
We have trees and shrubs! It only took 14 months, but we did it. We were supposed to have at least 3 trees and 15 shrubs within 60 days of closing on our house. Whoops! We missed that fine print. We now have 5 trees and over 100 other shrubs/plants. We're not finished, but this should keep us out of hot water. We still have another 12 trees and several flower beds on the side of the house and in the back yard. It's getting too hot to do any more planting, so we're going to wait until the fall to do the rest. We've been doing the work ourselves and have only spent a fraction of the $30,000.00 bid. By the time we finish, we shouldn't spend much over $10,000.00. Bob has done a fabulous job. He doesn't get much time off work - often he works till 10:00pm or later. He's off work on Wednesdays and Sundays. So, not a lot of time to get everything done. He's a great handyman and has saved us a lot of money. He even worked all day on Father's Day.
Monday, June 16, 2008
Kinnick's pediatric surgeon called today. He reviewed the Lower GI study and doesn't see a problem with her intestines. While this is good news, I don't believe the results. There is clearly something wrong with her intestines. Her intestines are ALWAYS loopy and the noise from her intestines can be heard from across the room. It looks like she has an alien living in her stomach - it's crazy. Not to mention, her mic-key breaks every 10 - 14 days from all of the pressure in her stomach/intestines. The mic-key is supposed to last 4 - 6 months. He ordered a daily laxative. I don't like giving daily laxatives. So, I'm not sure what to do at this point. The culturelle has helped significantly. Things have noticeably improved. Hopefully with a little more growth, she can stretch her bowels out some and allow things to move a little more freely. Other then this issue, Kinnick and Carver are doing fabulous. I'm so pleased with being able to reduce some of their Oxygen and the fact that Kinnick is eating so well. Carver has started taking a few more bites of his food - still not enough to reduce the tube feeds, but he is improving. He's rolling from back to stomach a lot and trying really hard to move - he just hasn't figured out how to lift his upper body.
Outside of the kiddos, we are preparing for a graduation party this weekend. We're expecting about 30 people. I haven't had many people over since the twins were born. So, I'm hoping I'll be able to handle this without stressing out too much. I always worry about people being around the twins. Kinnick picks up anything she comes into contact with.
Thursday, June 12, 2008
Carver got his first big hair cut today. I think it makes his cheeks look bigger. I posted a picture above. Kinnick is just too cute to leave out, so I posted a picture of her. I also posted a picture of Kinnick standing with help. You can see how proud she is - look at the big smile. She is so thin - it looks like her pj bottoms are falling off.
We had the lower GI study done yesterday and finished it today. I'm still waiting to hear the news. I'm afraid that they were not able to get the dye as far as we needed it to go. They needed it to go all of the way to the small intestine. Her large intestine is so long and loopy that they had a hard time getting the dye to go any further. Since her large intestine is so long, they were unable to see well when all of the dye was in place. They "think" that they got to the small intestine, but aren't sure. I'll know more when they review the pictures.
Friday, June 6, 2008
Sorry that it's been so long since I posted about Kinnick and Carver. Kinnick got a stomach bug right before we left on vacation. She was better by the time we got home. She ate very little and drank nothing but pedialyte. She seems so tiny compared to Carver. When I get a minute, I'll take a picture of them together. He used to be the small one, now he's the big one. I'm not sure how much they weight, but If I had to guess, I would guess that Carver is getting close to the 20 lb marker and Kinnick is still floating around 16 lb. We were told to expect her to lose weight when trying to transition to baby food. She is taking all of her day feeds by mouth - fruits, vegetables, and Juice. We're trying to add meat, but she's not liking it. She still gets formula via her g-tube at night. We give her 16 oz over night. Carver still refuses to eat his baby food or drink his juice. We get a couple of bites in him, but that's it. Hopefully he'll get the hang of it soon. He gets formula via his g-tube during the day and night.
I've had Carver on 1/8 lt of oxygen day/night for 2 nights. So far, he's doing good. He still desats if he gets his cannula off. I turned Kinnick down to 1/8 lt tonight. So far, I haven't noticed a difference. She's been getting her cannula off and hasn't been desatting. If she does ok, I'll leave her there for a while. I don't want to rush her after her rough winter.
Kinnick seen the eye doctor Wednesday. The blood is gone from the operative eye. The doctor thinks the retina is detached again. I'm not sure whether to believe him or not. The last time he said Carver's was detached and it was fully attached. I'll wait to see what the doctor in MI has to say. We'll return to MI late July or early August.
Carver rolled from his back to his stomach 3 times today!!! What a shock. He's hasn't even been making an effort. Then, all of a sudden he does it 3 times. I have noticed that he seems uncomfortable on his back at night and he acts like he wants to be on his side. I've been trying to turn him to his side at night, but he always ends up on his back. I have to be careful about how they sleep since they feed all night. They need their heads elevated. Carver is also learning to sit without help. He can sit for about 3 seconds before tipping over. Kinnick does about the same. She's more flexible, so it seems like her nose hits her toes pretty quick. She's standing with help and seems to be pretty proud of herself. Carver used to like standing, but doesn't seem to want to anymore. Maybe he's just getting too heavy and it's too much work - I'm not sure.
Kinnick will have a Lower GI next Wednesday. Her G-tube has not leaked the past 4 nights. In fact, she really hasn't even leaked during the day. She's only had a few drop after each feed. I don't know if the probiatic has helped or if she's just moving her bowels better. She has pooped every day since we started the probiatic. The probiatic is supposed to help make her more regular. Hard to believe something so simple can solve the problem. I haven't had a single doctor suggest giving her a probiatic. I discovered the use of probiatics reading another preemie blog. Kinnick seems so much happier and relaxed, now.
Kinnick has serious stranger anxiety. She cries the minute she hears a new voice in the house. Carver doesn't know a stranger. He views them all as potential playmates. He's the biggest snuggler and loves to play and return hugs.
Thursday, June 5, 2008
Thought I would share some pictures from our much needed Cabo trip. The resort we stayed at (Riu - Santa Fe) was fabulous. The staff was very friendly and the resort was very clean. We met some great people and had a great time. We were only there 5 days. Two of the days were spent going/coming to/from the airport. So, we really only had 3 full days. We took the "Taste of Cabo" tour - would recommend this tour. My only complaint is that it took most of a day 9am - 3pm. We did some shopping, bought some unique tequila, spent a lot of time at the beach pool and bar, and consumed too many adult beverages.
Enjoy the pictures of the trip. Check out Bob's cute girlfriend in the braids. Bob and my brother-in-law participated in a show the first night we were there. It was hilarious.