Wednesday, February 27, 2008

A big bump in the road....

oh! today was one of those days, you wish it was a nightmare, because you could at least wake up from it and it not really happen.

Lily has RSV (Respiratory syncytial virus)...they said that she didn't get it from the vaccine (the vaccine wasn't the live RSV vaccine) Lily got it from someone that had a cold or from just being in the hospital. I feel like the worst mommy. I've had a cough since Dakota was sick almost 2 wks ago...but the Dr said (trying to make me feel better) that Lily gave it to me. So Lily and i both have the phlemy cough :(

The surgery has been canceled. Tomorrow, i will be call and reschedule it for the 2nd or 3rd wk in April. (so I'm gonna be in the hospital for my birthday ) They said it takes 3 wks to fully get over RSV....that is why they say to wait 6-8 wks before having the surgery. So we are going to just keep working on Lily's weight.

The good news is that Lily is up to 9 lbs 6.4 oz!!! YAY!!! She is getting closer. We did 75 ml (2.5 oz) feeding today...and we are doing that every 3 hours. So far, she has kept down the first feeding...and was getting the 2nd feeding as i was leaving the hospital. Once we get her used to the feedings, the Dr said we can go home and continue these feedings at home. I will offer her the bottle and let her eat what she will...and what she doesn't eat, i will then syringe to her through her feeding tube.

Tuesday, February 26, 2008

Up to 9lbs and 4 oz

Today was a long day. As soon as Jed got to the hospital, I told him i had to get out of there for awhile. Lily slept all day--literally only woke up for me to change her diaper and for them to check her vitals. I was so bored and my body ached from just sitting around all day...geez! you'd think id would enjoy sitting around all day.
Lily gained some weight...she is now 9 lbs and 4 oz...I'm so happy. They took out her IV last night, so now she only has her feeding tube and nothing else. She seems happier, but she has so much congestion in her nose. They say it is from the irritation of the feeding tube. So I'm always sucking her nose out with the bulb syringe--which she has come to hate. And she has a bad cough...but her lungs are clear. they said the cough is from the drainage and from the tube hitting the back of her throat--the gag reflex.
The pediatrician said that i could give Lily whatever by mouth if she wanted it. So today, I let Lily have a few swallows from a bottle and she eagerly ate it up...she sounded like a little piggy I didn't let her eat too much because i didn't want her throwing up again...but Lily seemed to enjoy what she got and content.So that was my day--I'm hoping tomorrow for a great weigh in! I'll let you all know!

Monday, February 25, 2008

The latest news on Lily and her surgery

Hello all! Well--not good news :( Lily didn't gain any weight today--she was 9 lbs and 2.1 oz today. They changed her formula to Alimentum and they upped her concentration (27 calories to 1oz of formula) She is taking it pretty good. They upped her to 25 ml and no far. She seems happier on this formula than the other. She was talking to me today and she has been sleeping better.
She had to have her feeding tube taken out and replaced with a new one because the old one was getting stopped up. She's a trooper!! When I left the hospital this evening, she was "talking" to Grandma...I'm heading back up there after a quick shower, some clean clothes, and just a little me time.
Here is an update also. The surgery will not be moved up; it is still scheduled for March 6. We will continue to be at our local hospital (GSMC) until Monday. Monday afternoon/evening, we will be discharged and then we will drive to Dallas and Lily will be admitted to Medical City Children's Hospital for evaluations and pre-op for her upcoming surgery (Thursday).

Sunday, February 24, 2008

9 lbs and 3 oz

well, she gained another ounce....which is great...for some reason, her tummy cant tolerate more than 24 ml an hour...everytime they move it up to 25 ml, she starts vomitting. which 24 ml is less than 1 oz (1 oz is 30ml)

Saturday, February 23, 2008

The weigh-in results!!!

Lily is back up to 9 lbs and 2 oz...which is awesome...they are upping her intake on the feeding tube every hr. She was up to an ounce an hour and then she started vomiting. It was too much, too fast for her tiny they backed off and now are slowing bringing it back up. Lily has had a pretty decent day today.

Will post more as she progresses.

Thanks and continue to pray...we are trying to get up to 10 lbs for Miss Lily.

Friday, February 22, 2008

Feeding tube put in today...

OK, so i finally got away from the hospital... Lily got in a good nap before Dakota, daddy, and grandma got back to the hospital.
Today was so long and exhausting...Lily slept all night except for them waking her at 4:30am to feed her (so she sleeps good when mommy's not there..) They did her weigh in....she was back down to 9 the Dr ordered the feeding about 12:30pm, they finally got it in...Lily didn't not like that one bit...but she is tolerating it. She was super fussy this afternoon from all the touching, poking, checking vitals, etc. But she seemed better when i left her with daddy at the hospital.
Tomorrow starts the hopefully, it will be a successful weekend...I cant wait for her weigh in in the morning. I'll keep you all posted.thanks for all the wonderful messages...i really look forward to coming home to see all the messages..they make a wonderful end to an exhausting day.

Thursday, February 21, 2008

an update on Lilyann

(Sorry I'm rambling on in this post...there is just so much on my mind and i wanted to let everyone know what was we could all continue to pray)
Still at the hospital..
My MIL volunteered to stay tonight for me, so i could get things together for the upcoming surgery (we might be transferred to Dallas on Monday--we are at our local hospital) and to get out of the hospital to get some rest...and they might move up her surgery date if Lily's weight doesn't improve...she had lost weight--she was 8 lbs 14 oz at check in at the hospital..she is back up to her 9 lbs 3 oz when they weighed her again today. she still isn't eating that well. We found out from a swallow test, that she has reflux which is causing her to not want to she is on more meds for that (prevacid, which she was on before, just twice daily instead of once daily)...
I did find out that her hole is in the top of her ventricle wall...near the valves...and it is 5-6mm in size. they have her on Similac Alimentum...and she seems to be taking it okay just not fast i am preparing myself for the feeding tube to be put in soon.IMO--Lily hasn't done well since they took her IV out...or unhooked her...they didn't take it all out, in case she needs to be hooked up for fluids again. She isn't eating as is taking her longer to eat the 2 oz...and she seems more tired...we'll see how she is doing when i go back at 5am.
I just have to tell you..... i really don't know how I'm going to be able to handle all this ( tears will definitely be shed in the coming weeks) ...I nearly broke down crying while they were trying to put her IV in yesterday...But if Lily can be strong, then this mommy has got to be strong too.
Love ya and i will try to keep y'all updated. Continue to pray!! and Thank you for your prayers.

Wednesday, February 20, 2008

Pray, Pray, Pray

We took Lily to the dr...she wasnt eating like she should be...So the ped. admitted her... did blood work and hooked her up to an IV...they want her to gain weight..she was 8 lbs and 14 oz when we checked into the hospital...she was losing weight.

im home getting clothes and have at the hospital. We are still at our local hospital. All the labs came back negative which is good, but still doesnt tell us why she wont eat. She is doing good...we tried a bottle and she took almost 2 oz..which is excellent. the pediatrician says that we will more than likely be staying in the hospital until Monday...after that, if no improvement or not adequate improvement...we will be transferred to Dallas...and they will see about moving up her surgery. So that is what we are looking at right...will know more tomorrow..Continue to pray.

I'll try to post as i can...

Monday, February 18, 2008

The surgeon called...

And Lily's surgery date is set for March 6. I'm not sure about the exact time, but they did tell me that Lily's case would be the 2nd case of the day...which would have us checking in around 10am on Thursday, March 6. We will be in Dallas on Wednesday, March 5, for all the pre-op work (registration, labwork, chest x-ray, etc...and to see and meet the surgeon, Dr. Eric Mendeloff) The surgery will take place at Medical City Children's Hospital in Dallas.

It feels good to know that Lily's heart will be getting better soon, but im also scared to death about the whole procedure. I was very nervous when Dakota had tubes put in his ears (Dec. 2006) And this surgery will!! definitely more meticulous.

I know that "all things work together for good" so this is what is going to happen and God will take care. He will steady the Dr.'s hands, and hold my precious Lilyann in his hands...He is such a big God.

Continue to pray as we make arrangements for all that will be happening in the following weeks.

And once again, Thank you for all the prayers. We are so thankful for the circle of friends that are praying.

Saturday, February 16, 2008

Awaiting a call from the surgeon

We took Lilyann to the pediatrician this morning, we were concerned about her eating...she wasnt eating more, but just staying the same..and she looked as if her face was thinning out...they weighed her...we found out that she hadnt gained any weight since she was last weighed at the ped's office on Jan. 30th. So the ped. says she is off to call the heart doctor and for us to sit tight.... (this was the start to my long day)

we finally made it home...Lily did really well with her echo again..she just stared at the guy doing the echo and then fell asleep. She weighs 9 lbs (that was at the dr's office in the pediatrician's office today, she weighed 9 lbs and 2 oz) We didnt see the same specialist, because she was off for today, but we met with her husband...and he feels that lily definitely needs the surgery. He told us to talk it over..we werent going to be rushed into a decision...Well, by the time we got from the room to checkout...Jed and I both decided lets just go ahead with the with the surgeon and set everything up. So we will be awaiting a call from the surgeon on monday. The heart specialist told us to take her off the concentrated formula...and make it alittle weaker ---which would be normal...1 scoop to 2 oz of water....and he put her on see if it would help with her eating ...He finds it odd that she rarely takes more than 1 oz at any feeding...he said there could be an underlying feeding problem...but since he is not a dr in the field, he cant be sure. So all in all, the dr upped her medicines...and added a medicine...changed her diet...and we have decided on the now we are just going to play the waiting game. Oh! from the results of her echo today, the dr said that there has been no improvement with the hole in her heart...the hole hasnt gotten any bigger and it also hasnt gotten any smaller.
On the weight issue, according to the heart specialist we saw today, from her visit on Jan 24th and the visit today...Lily has gained 10 oz..they are concerned with the weight...that is why they suggested scheduling the surgery to fix the problem.

I know my email to everyone sounded so rushed and frazzled earlier today (this is what caused me to be all frazzled)...the pediatrician walked back in the room after calling the specialist in Dallas and said, "how fast can you pack?? Because i think they will be doing something today about all this...they might admit her and put in a feeding tube to get her eating." (all in my own words) Which all this scared me half to death..i know that the not gaining weight was definitely a problem...I just was not ready to hear what the dr was saying.

At least now, I can know exactly when and how things will be happening...and we can just take it one day at a time. We can be prepared mentally, physically, and spiritually.
Continue with your prayers...and thank you from the bottom of our hearts for your prayers and for keeping Lily in your thoughts and prayers. That rainbow should pop out of this storm sooner or later!

Tuesday, February 12, 2008

The letter arrived today...

I just received some excellent news...It is official!! Lilyann will be covered through Medicaid!! We were so worried about this...since we missed our grace period to add Lily to our insurance; but now i see there was a reason for our missing the grace period. Now, we won't have to pay a penny for Lily's Surgery. This is such a huge burden that has been lifted. Thank you for your prayers and your continual prayers for Lily and our family.

Monday, February 11, 2008

Our long weekend to Corpus Christi, TX...

Jed's best friend (Matt) got married on February Corpus Christi, TX. With Jed being one of the best men, we all went to the wedding. It wasn't that long of a drive..8 hours...and the kids were really good. We only had to stop 2 times for gas/diaper changes/food.

We took Dakota to some sites while in Corpus...The USS Lexington and the Texas State Aquarium. Dakota had an awesome time.

Even though, the trip was for a wedding (which the wedding was beautiful and we are so happy for the bride and groom~~Matt and Sarah) we had an enjoyable time, just relaxing and taking in some sites. The pictures posted are from our trip.

Lily did pretty good on the trip. She has her good days and bad days...but all in all, she is doing well. We are still trying to get her to eat more...we aren't sure how much weight she has gained since the last time; since we havent had an official weigh in...just the weigh in from our scale. Please continue to pray...our next visit to the heart specialist is a little more than a week away (Feb. 21st) ...we are hoping to get more information on what all is happening with Lily.

Tuesday, February 5, 2008

Thought this was neat--a job description for Mom

Position: Mom
JOB DESCRIPTION: Long term team players needed for challenging permanent work in an often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work various hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in faraway cities. Travel expenses not reimbursed. Extensive courier duties also required.
RESPONSIBILITIES: This is for the rest of your life. Must be willing to be hated at least temporarily, until someone needs $5 to go skating. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, and embarrassed the next. Must handle assembly and product safety testing of a half million cheap, plastic toys and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work throughout the facility.
POSSIBILITY FOR ADVANCEMENT AND PROMOTION: Virtually none. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you.
PREVIOUS EXPERIENCE: None required, unfortunately. On-the-job training offered on a continually exhausting basis.
WAGES AND COMPENSATION: You pay them, offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.
BENEFITS: While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered, job supplies limitless opportunities for personal growth and free hugs for life if you play your cards right.

Monday, February 4, 2008

Pull up a chair and sit on the floor....

Current mood: focused
So i called/checked in with the Dr. this morning about Lily's eating. The Dr is okay with how much Lily is eating right now..she just said to continue monitoring her intake. Since Wednesday, Lily has been eating about 8.5 oz to 13 oz a day...averaging anywhere in between those. Im considering a good day for Lily's eating, when she eats at least 10 oz. So we have had some pretty good days. If Lily has a decrease in her intake, then we are to take her back to the Dr for them to evaluate her weight.
So we are still just kind of watching and waiting. That is why i titled this blog "Pull up a chair and sit on the floor" because it sounds like we are going to be monitoring Lily's intake and weight for awhile.
The title is a phrase my dad used to tell everyone when he wanted them to take a always made me smile when Dad will tell someone that and then they would take a seat and realize (with a confused look on their face) what my dad said.
Our followup visit with the pediatric heart specialist is scheduled for Feb we should know more on what is happening with Lily then.
Thanks for all the warm thoughts and prayers that are being sent our way.

I added some pictures here of our weekend outing...we took Dakota and Lily to the zoo. Dakota had a great time...Lily slept almost the entire time at the zoo.

Friday, February 1, 2008

Lily is eating more

I just wanted to add...Lily is up to 12. 5 oz of formula for today...She did great!! im so excited that she is eating better...This is the best she has eaten in 2 weeks.

And i actually got some smiles out of the kids today!! Thought you would enjoy the pictures.

Let go....and Let GOD!

So most don't know that we are not only struggling emotionally with what is going on with Lily, but we are also struggling financially. We found out about 2 wks before the heart murmur was found that we had missed our 30 day grace period to add Lily to our insurance...due to a communication problem, we missed it by 2 days. So when we found out that Lily had a heart murmur and they wanted to do an echo of her heart and then send her on to Dallas for further observation...we were so scared and worried about Lily in addition to knowing that we didn't have insurance. So in the past 2 weeks, i have been on the phone calling and appealing the addition to signing up for any means of financial assistance. I applied for CHIPs (children's insurance plans). It is given by the state depending on your income, etc. And we would only have to pay small copays for the CHIPs.
Since applying for the CHIPs, I have been calling to check on the status of our case...and today, they tell me that they have forwarded our case to Medicaid...because Lily will probably (it's not for sure yet) be covered through Medicaid. That would mean that we wouldn't have to pay a cent for Lily's surgery, hospital stay, nothing...and they would go back and cover any bills for the last the 3 months. I was almost crying as the representative was telling me this...What a burden that has been lifted off our already heavy shoulders.
**If Lily doesnt qualify for Medicaid, we still have the financial assistance from CHIPs**

I know this was God's way of letting me know "that all things work together for good"....We were so frustrated when we found out she was denied insurance coverage...but God had a reason...He didnt want us to have to worry about the finance part at all. He wanted our full attention given to Lily and her recovery without our worrying about money. I guess we just need to let go, and Let God.

Thank you for your prayers and keep them coming...Lily is having a good day today...she has already eaten 8 oz of formula and the day isnt even over yet...Im so happy that she is eating...if she keeps it up, then we definitely wont have to go the route of a feeding tube.