Monday, March 24, 2008

Lily has gained more weight...

Lily with Brooke (Jed's cousin) at our Easter gatheringLily--first time to have cereal

Lilyann now weighs 10 lbs 10 oz...she is growing and growing. At her checkup today, the Dr told me that if we wanted to, we could take off Lily off the pump during the day and then put her back on the pump at night. Lily still isnt eating all that much by mouth, but she is doing better. She enjoys eating cereal and bananas (babyfood) She actually seems to enjoy eating from the spoon better than drinking her bottles. Lily has a little nasal congestion right now, so she is kind of miserable. We are watching the congestion so that it doesnt turn into anything worse which could delay her surgery; we, and the dr think that it is because of all the pollen outside.

Lilyann's next weigh in will be on April 4th. She will also have her 4 months well check up and get her 4 months shots :(

Lily seems to be doing much better (minus the nasal congestion) she is cooing more and she likes to stand. And she is more aware of what is going on. She knows when we arent in the room with her and she lets us know.

Continue to pray for Lilyann. Her surgery is still scheduled for April 15th.

Our Easter Weekend

Dakota with his cousin, Alexis at the courthouse Egg hunt
Dakota opening his eggs at Boo's house
Dakota and Alexis looking for eggs at Boo's house

This weekend was definitely a fun one for our family. With Dakota being 2 yrs old now and understanding more, He actually enjoyed hunting for Easter eggs...and it was even more fun opening the eggs to see what kind of surprises were inside.

On Saturday, we went to Jed's grandparents house. That morning, we went up to the Gilmer Courthouse lawn; Dakota and Alexis, his cousin took part in the Easter egg hunt. The courthouse egg hunt got them ready for the egg hunt at Boo's (Jed's grandma) house.

So we went back to Boo's house and we had lunch and the kids had another Easter egg hunt. This time, Alexis and Dakota were going after the eggs. It was quite enjoyable to watch.

Wednesday, March 19, 2008

Kota and Lily in the wagon


One of my friends did this picture up for me!!

Monday, March 17, 2008

So excited!! Lily has made it passed the 10 lbs mark!!

I had to take Lily back to the Dr's office , yet again, to have her feeding tube put back in. Lily is getting smarter and smarter--getting that tube out all the time. The nurse showed me how to put the tube back i can try to do it at home instead of bringing her to the Dr or the pediatric unit every time. On to the good news....Lily was weighed today and she now weighs 10 lbs 4 oz!!! YAY!!
And i just turned her pump up to 35 ml/hr...I waiting to see if she will be able to tolerate it...which i think she will be. Also, I asked the Dr about starting Lily on cereal--the Dr said that it was okay--so we will try cereal maybe when Jed gets home from work. The cereal should help satisfy Lily a bit more.

Thanks for the prayers and keep them coming....

Sunday, March 16, 2008

A story from a CHD group on facebook...

byEmily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Saturday, March 15, 2008

Our day in Dallas

Here is Lily with Grandma--we were waiting on the Dr to come in...Lily had just been weighed (9lbs 12 oz)
Yesterday, we went to Dallas for some appointments for Lilyann. We were to see the heart specialist (Dr. Penn) at 10:45am and then on to see the heart surgeon (Dr. Mendeloff) between 1-2pm. The heart surgeon's office called and canceled our appointment since the Dr wouldn't be in the office that day--so instead of rescheduling, we will just decided to meet with the surgeon the day before Lily's surgery.
Lily had a weight gain....she is up to 9 lbs 12 oz. and she is 22 1/4 inches long...she seems to be doing okay--i really think the heart Dr is worried about her not wanting to eat that much from the bottle...and he said to be ready for Lily to come home after the surgery with the feeding tube (more than likely). We had to take Dakota with us today, since he had only been on his medicine for strep(yes! Dakota got strep throat in the mist of all this) for a little more than 24 hours.This was Dakota's first time to go to Dallas with us for any of Lilyann's appointments. He did pretty good given the fact that he was sick. A BIG thanks to some of my friends (Huggies and Cafemom mommies) who sent a portable DVD player for Dakota--to keep him occupied and entertained during the trips to and from Dallas (once Lily is in the hospital) that DVD player was a lifesaver--especially the last 30 minutes on the way home last night!!

Since we didn't have the afternoon appointment..we decided to enjoy ourselves and do some "dinking" (Shopping without always spending money) So we went to the Grapevine Mills Mall...We had a blast; and we were able to meet up with some of our friends (Matt and Sarah Duckett--newly weds) while there. Dakota enjoyed being with "Uncle Matt". Dakota was so excited to ride the carousel...he was so excited; but toward the end, he was resting his head on his arm. (he was one tired little boy) And after the mall, we went to the Bass Pro Shop for Jed. Dakota was able to see the "fishies". So all in all, Dakota had a blast, Lilyann gained some weight and went shopping (got to train her, and we were all tired by the time we got home. A long day, but an eventful day--spending time with friends and family.

Monday, March 10, 2008

Slideshow--hope you enjoy

Hello to all our friends and family...i made this slideshow because i wanted to share some pictures from the last week since we have been home...Dakota has so enjoyed being home and Lily being home, too. Most of the pictures in the slideshow are of Dakota just having fun...and then there are a few of Lily.

Lily seems to be doing better--different times throughout the day she is fussy. We think the concentrated/high calorie formula could be making her fussy. Last night, we changed the feeding rate on the pump to 30 ml/hr and Lily seems to be accepting it okay. (she was on 25ml/hr...and she seemed hungry all the time...we give her bottles off and on throughout the day and she is taking those pretty good..the 30ml/hr means she is up to 1oz every hour..which is awesome)

We dont have our weigh in with the pediatrician this week (unless Lily pulls her feeding tube out again--which she did on Saturday). We are seeing the heart specialist for a followup visit and we are meeting the surgeon. All of this will happen on Friday (3/14/08). So that is when the next update will more than likely be posted about Lily.

Thanks for all the prayers...and continue to pray.

~~ANGELS EXIST but sometimes, since they don't all have wings, we call them FRIENDS. ~~

Thursday, March 6, 2008

We have a weight gain!!!

Lilyann is up to 9 lbs 10 oz!!! She has gained 7 oz since she has been home...that makes me so happy. Also, the Dr took her off the prevacid (because we think that is what has been causing her to throw up)...we actually ran out of the RX yesterday--Lily had missed 2 doses and since she hasn't been on it, she hasn't thrown up at all. They had to remove the tape because Lily was getting a rash under the tape (the tape the holds the feeding tube down) so they went ahead and took the feeding tube out and put in back in on the other side/nostril...She handled it pretty good. Lily chest is sounding better..she really doesn't sound sick at all until she coughs (which isn't happening as much as it used to).

The Dr was happy with her progress...we wont see the Dr next week for a weigh in because we are going to see the heart specialist next Friday and they will weigh her. Also, the Dr told me that i can give Lily a bottle if i want to...Just keep her on the continual pump more than she isn't on it...So i can take her off and give her a bottle and then after awhile put her back on the pump...I'm so happy...

Once we got home, I gave Lily a bottle and she took almost an ounce...which is awesome for she is back on the pump while she is sleeping.

Thank you so much for the prayers...and continue to pray...there is a God and i know he is listening. I find everyday that there are more churches and the church families praying for

Lily. Yesterday, I received a letter from Stamps First Baptist Church in Stamps, Arkansas that is praying for our Lilyann...and Today, a card from the New Albany Presbyterian Church in New Albany, Mississippi. It is such a blessing to know that so many are praying for our Lily.

Wednesday, March 5, 2008

Being home is such sweet medicine

We are on day 2 of being home from the hospital. Lily has accepted the change pretty good. She likes having the change of scenery...she cant seem to take it all in fast enough. The last 2 nights have gone smoothly. Jed and I are getting used to 2 kids again...from being in the hospital for almost 2 weeks, you lose your groove (or at least, I did).

Dakota woke up this morning calling for Lily...and then he wanted to be in her bed and talking to her. Lily loves her brother...she was trying to talk to him.

Lily is still on the feeding is a continual pump. We go to the pediatrician tomorrow for a weigh in for Lily...hoping for more than 9 lbs and 3 oz (that was her last weigh in on Monday)

Monday, March 3, 2008

Home is where the heart is....

and where my Lilyann is. Lily is finally home from the hospital...she is still on a continual feeding pump. We will be seeing the Dr on Thursday for a weigh in and a checkup for Lily. I'm so happy to be home. Maybe being home will help Lily want to eat more. Today, Lily weighed 9 lbs 3 oz. She is gaining back what she lost, slowly.
Continue to pray and thank you for your prayers thus far.

Sunday, March 2, 2008

9 lbs 2.7 oz

Lily is gaining back some of the weight she lost. She was 9 lbs and 2 .7 oz at today's weigh in. She was tolerating the 75ml feeding every 3 hours and then she started throwing it all up. Lily is back on a continual feeding pump. She gets 25 ml (almost an ounce) every hr. She seems to be tolerating it okay, but she still keeps throwing up. Most of the throwing up is induced from her coughing.

Just keep praying ...I will keep you posted.

Saturday, March 1, 2008

Down to 9 lbs...

Lily didn't get to come home today. At her weigh in, she was back down to 9 lbs the Dr is having her stay in the hospital...I'm not sure if they will send her home tomorrow or not. Lily seemed to tolerate her feedings okay today. Nighttime seems to be the roughest on we will see how tonight goes.

An update from the last few days

Well...sorry i forgot to get on here and update...i fell asleep the last time i was home, and Jed's mom had to come and wake me i didn't get a chance to update and last night, Dakota came home for the 1st time in a week and he played and played with mommy and daddy.

Thursday's update (2/28/08)
9 lbs 4.4 oz --she went down a little but the Dr isn't concerned. She says that it is normal. The normal weight gain in a baby is 1/2 an ounce a it is okay to have up and down days.
I spent the whole morning (between feedings and talking with Lily) re-scheduling her surgery date. Her surgery is now scheduled for April 15th (Tax Day) We will check in at 6am...she will be the 1st case of the day. We will be in Dallas on the 14th for her pre-op appointment. We also have a follow up appointment with Dr. Laird for March 14th...just to check on Lily and her heart and see how everything is progressing or not progressing. On that same day, i made an appointment with the surgeon. That way we can meet the surgeon before the day before surgery and he can tell us all what to expect (length of surgery, ICU, recovery time. etc)
Today, we are doing feedings of 75 ml (2.5 oz) every 3 hours instead of a continual drip feeding. This way, Lily can get used to being a schedule and it will make it easier for when she comes home.

Friday's update (2/29/08)
9lbs 4.6oz. Lily had to have oxygen last night. Her oxygen saturation level with should be around 100 went down to 83 and it took awhile for it to get back up in the 90s. So i wake up and find a respiratory nurse leaning over Lily trying to put her on oxygen. Lily wasn't wanting anything to do with something else going in her nose...she was kicking and swinging her arms. Once they got the oxygen on, the level went back up to 100. She is doing better-tolerating feedings. The Dr said, if we have a good day today, we might get to go home tomorrow!

well, the Dr said this evening when she was making her rounds...that if Lily makes it through the night without having to have the oxygen, then she can definitely come, i learned how to gravity tube feed Lily and syringe the food into her tube..I'm nervous about her coming home with the feeding tube, but i will be thrilled to have us both finally out of the hospital.
Continue to pray for Lily and for strength for our family.

** a little update from today (Saturday, 3/1/08) Lily had a rough night last night (Grandma stayed with her) she would keep her feedings down...and oxygen saturation level went down again...but they didn't have to use the oxygen. Lily was getting choked up on the mucus from this once she could cough it up and then they suction the stuff out...she seemed to do better. She must not have liked her feeding tube last night, because she pulled it out twice. After the 2nd, they left it out for awhile...Last i heard, the tube was back in. We are now waiting to hear what the Dr wants to do and if she is still going to send her home. Depending on what happens, i will try to get back on here and update you all.