Monday, February 25, 2008

February 25th, 2008

I didn't think we would ever outgrow our infant seats..... looks like we're getting close. Carver has finally hit 15 lbs 2.5 oz.

Kinnick is back up to 14 lbs 15.5 oz. She's starting to feel better. I'm doing continuous feeds at night. They run from 8pm - 8am. This has helped her tummy. I still do 1 hr feeds at 11am, 2pm, and 5pm. She's up a little on her oxygen - 3/4 lt. However, she's sounding a lot better, so hopefully we'll get it back down in the next couple of days.

Big Brother Hayden - Go Hawkeyes!

For those of you that don't know... Kinnick, Carver, and Hayden are all named after the Iowa Hawkeyes (Daddy). Kinnick Stadium, Carver Arena, and Hayden Fry (Coach).

Sunday, February 24, 2008

Friday, February 15, 2008

February 15, 2008

Kinnick came home on Tuesday afternoon. The distention was not explained. They took all feeds away for 3 full days - completely emptying her bowels. They suspect the formula was causing the problem. Her Neosure formula has always caused her to be extremely gassy. She is now on a new Similac formula - Alimentum. This is only a 20 calorie formula, but it is supposed to be easier to digest. It's also missing a lot of vitamins and minerals that are found in the Neosure. I'm not thrilled that we had to down grade, but I feel like we didn't have any choice. She is doing so much better on the new formula. We have increased her volume slightly to make up the missing calories. She has been burping a lot lately - on the old formula and the new. This seems odd since she had a Fundo Plycation. I've asked the surgeon and her GI specialist and both say it's ok or normal. Just seems odd to me. Her GI specialist prescribed Prevacid - acid reflux med. She thinks that some of the burping will go away if we control the gasses. Poor little Kinnick has had so many IVs that there just isn't anywhere else to put them except her head. They shaved a bunch (in patches) of her hair for IVs while she was in the hospital. I feel sorry for her - she looks like she has mange. Hopefully it will grow out soon and we can get it cut to look a little better.

Carver has been refusing his bottles again. We are struggling to get 15 oz of formula in him a day. I'm afraid that he's going to end up with a G-Tube if he doesn't start eating again. He was doing so good. I'm not sure what has caused the change. He's acted strange lately - fussy and his heart heart has been about 30 higher then his norm.

We are still waiting to hear about the ACIL/TA waiver programs that are going to be combined effective 7/1/08. Currently, Carver does not qualify for nursing via the TA waiver. The new plan doesn't look very promising, either. However, if he ends up with a G-Tube to make up feeds at night, he would most likely qualify. This is the only positive thing about getting a G-Tube.

So, everyone is home and now I've come down with a nasty cold. Since the babies were born, I've only been sick once. The last time was a tummy bug that lasted a couple of days while the babies were in NICU. This time they are home and I'm the primary care giver. Please pray that the babies do not catch my virus - mostly cold symptoms.

Thank you all for your kind words of encouragement. I read all of your comments. I can't always respond because I don't know how to reach you. But, please know that I do appreciate all of the article links, help, and prayers.

Saturday, February 9, 2008

February 8th, 2008

It's been a busy week. Kinnick's tummy continues to be a problem. We had to take her back to Wesley Hospital yesterday. She is on a 48 hr bowel rest. She will not get anything to eat and will be on IV fluids. They completed an upper GI that they have tracked all of the way through her bowels. They have not found an obstrustion. However her tummy is still huge and hard. Her stomach is empty and her intestines are full of gas. One nurse described her intestines as looking like they are full of large mashmellows. They are doing 2 enemas a day and giving her colace 3 times a day. They are trying to empy the bowels. My understanding is that they believe the bowels are pretty much empty as of this evening. They believe the problem is an illious (sp). This is where the bowel is not moving or is moving very slowly. The only cure they are giving is bowel rest. The say the bowels will just start moving again on their own. I'm worried because the last time she had this problem, they finally found an obstruction after struggling with the issue for a month or longer. She's already lost over 1/2 a pound. We were so happy with both of their last weights. Now we're going backwards again. Right now, I'm really frustrated.

Kinnick and Carver will be a year old March 29th. They are so far behind where they should be. In fact, I'm not even sure where they should be. They don't really fit the normal Preemie adjusted age schedules because of their disabilites - blind/deaf and others. Such small things we take for granted make a huge difference in our developement. For example.. a blind child doesn't have a desire to raise his head because there isn't anything to see. So, my babies don't even have good head control. They want to look down all of the time. My babies need special queues just to change their diaper, feed them, or wipe their nose. Image a kleenex coming from nowhere swooping down and wiping your face. This is how it feels to a blind child. Or, imagine a spoon full of food suddenly being shoved into your mouth with no warning and you can't see it coming. These are things we don't have to think about when we have vision and hearing. We have a lot of work ahead of us. All of this is new and we have 2 of them to work with. My early intervention teachers have told me they rarely get blind/deaf children. Usually, you at least have vision or hearing. So, they are stumbling to help, but assure me they will do everything they can to help get the right resources and answers. It's just very overwhelming. I want to do everything possible to give my children what they need to have as normal as possible of a life.

Sorry this post isn't real positive. I'm just overwhelmed with everything right now. I'm update as I know more, but I expect that Kinnick will remain in the hospital until at least Monday.

Friday, February 1, 2008

February 1st, 2008

Kinnick's tummy continues to be an issue. We measure it before each feed and listen for bowel sounds. Her tummy seems to go back down to where it was prior to the last feed, but we're not hearing very good bowel sounds. She seems uncomfortable when she is feeding. The doctor ordered an enema and Miralax on Wednesday. The enama seemed to work. She had a huge plug that she couldn't get out. I'm not sure what the Miralax did. She cried a lot, so I think it was cramping her tummy. We'll continue to watch her. I think she may still have a plug in there - her tummy is just so big and it feels loopy.

I put Carver back on 1/4 lt oxygen. He was having the same strange de-sats even during the day with 1/4 lt. I suspect that he has had a little bug. He has been spitting up more then normal and has been fussy. He did better today, so I'll see what his sats do over the next couple of days.

Kinnick is still on 1/2 lt oxygen and is doing good.

My Kid Screen case manager applied for a TA Waiver for Kinnick. This will allow us to keep her Medicaid card for another year. We should know if she was approved within the next couple of weeks. Unfortunately, my case manager is unable to apply for the TA Waiver for Carver. The current waiver requires the child to be on at least 3 technologies if you are not poverty level. If you are poverty level, you only need 1 technology. Sounds like discrimination to me. Apparently, their has been a lot of talk about the discrimination and a team has been meeting to have the ACIL and TA Waiver combined. Once they are combined, the program will be based strictly on technology - not income. So, someone poverty level will not qualify any differently then someone that is not poverty level. Both will have to meet the technology requirements. There has been talk about allowing a child with continuous oxygen and an oximeter to be approved for the program. If this happens, carver will be eligible. However, the new guidelines will not go into effect until July. Carver loses his Medicaid card at the end of March. So, we will have a 2 month gap with no Medicaid coverage. We have private insurance for him, but it doesn't cover Home Health Care. Unfortunately, you can not take a child to a daycare center when they are on continuous oxygen and have an oximeter. Actually, I believe we have one facility in the city and there is a huge waiting list to get in. Even if we could get in, I wouldn't want to take him due to his cronic lung disease. He would be exposed to every other child in the facilities colds and etc. It's also difficult to find someone qualified to care for him at a reasonable rate in the home or that is willing to take on the responsability of making sure he is oxygenating properly and increasing oxygen if needed. I'm not sure I would want just anyone making that decision, anyway. So, it really doesn't leave the family much choice. One of the parents has to give their job up to stay home with him.

I met with a social worker from Rainbows today. She gave me information on another program MRDD. This program is not income based. It is for the Mentally Retarded and Developementally Delayed. Kinnick and Carver would qualify due to their Developemental Delays. This program will give us another case worker that should be able to help us get funding that we might need in the future for any special needs the babies may have. It can also get small amounts of money to help with in home care if needed. There is another piece of the program that we would not qualify for until the babies are 5 years old that could potentially get them approved for their Medicaid Cards. So, this may be our long term way of getting approved for a Medicaid card without being poverty level. For all of my Kansas Preemie mom readers. You might want to take down this number.... 660-7640. This is the number for the Sedgwick County Developemental Disability Organization. You can call them to apply for services. I'm told that you need to sign up by at least 3 years of age. There is a 2 year waiting period to get the service that gives you the Medicaid card when the child is 5 years old. You can apply early, so don't wait. If you wait till the child is 5 to apply, it could take till the child is 7 to get his/her Medicaid card.