Sunday, April 27, 2008

Our 1st week home...

Lilyann playing in her bouncy chair
Dakota helping Daddy mow the backyard
Dakota--playing outside
Lilyann--we laid her down in the grass--this picture came out so perfect..a true picture of innocence

And so far, everything is going pretty good. The first day home was a little overwhelming; with not having to take care of 2 kids for a week, and then trying to get back in the groove of 2 kids wanting my attention. Lilyann is doing good. I took Lilyann to the pediatrician on Wednesday (the day after we got home from the hospital). Lilyann cry was so hoarse, and she acted like it hurt to swallow. So i took her in, and the Dr takes a look and notices that Lily's throat is red...and then when i tell her how Lily acts when she eats, we find out it is Lilyann's reflux--it has flared up again. Since the prevacid made Lily throw up, the Dr put Lily on Zantac two times a day. It seems to be helping with the reflux. Now her cries and coos aren't hoarse anymore. Lily is like a new little girl: playing, eating (from a bottle), and smiling lots.

This passed Saturday was so pleasant that Jed and Dakota mowed the backyard (yes, Dakota helped) and Lilyann and I sat outside (while she was awake) and watched. It is surprising to see such a drastic change in Lilyann. Her color is better, she is much more active, and she is starting to talk more. Also, she has found her hands and they are always in her mouth (she is teething!!) We are introducing her feet to her...she finds them amusing, especially when they hide mommy and daddy's face.

Dakota is thrilled to have "Lily Lu" home...he calls her "pretty girl" (he gets that from daddy).

Oh!! i almost forgot, at our Dr's visit last Wednesday, they weighed Lilyann..and she was 11.4 lbs (with her clothes on) She is gaining weight all ready!!

On Wednesday, Lilyann will be 5 months seems like just yesterday i was going to the hospital to have! they grow so fast! Also, on Wednesday, I (mommy) am going to have a birthday...can you guess how old???

Tuesday, April 22, 2008

Lilyann is Home!!

We were discharged from the PICU this morning...the doctors came through making rounds and we asked for discharge instead of waiting for a room to open up on the pediatric floor. Well, the cardiologist said that she would check to see why we where still being held there...They did a chest x-ray and everything came back we were given the okay to go home. Around 11am, we left Medical City Children's Hospital....and headed home....without the feeding tube!!!

so...about 1 hr shy of being exactly 1 week since Lilyann came out of surgery...we were discharged.

God is Good!!
I hope you all enjoy this slideshow of our week at the hospital and Lilyann's progress.

Monday, April 21, 2008

We are leaving the ICU

Yes!! we have the okay to leave the ICU...but we are still there. We are waiting for a room to become available for Lily. All of Lily's IVs, and tubes are out. She only has the sticker monitors on her and the pulse reader. They moved her into a she has her mobile up now, but she is asleep in Daddy's arms. Since yesterday, she has taken all her bottles by mouth...she is now up to 75ml (2.5 oz) by mouth every 3 hours. She is finally in her own clothes...and that makes a world of difference. Now just to get her to a regular room, so we can get our Lilyann home.

Thank you for the prayers and let us all continue to pray for her recovery.

Sunday, April 20, 2008

Little Miss Lily

Last night...Lilyann sleeping
Lilyann listening to Grandma
Lilyann--this morning...she looks exhausted, but is feeling better

Today has been going pretty good for Lily. After all the wonderful progress last night, we were able to get some much needed rest. This morning, we came in to a fussy Lilyann...but she had just had her feeding tube replaced (lily thought she would pull it out for the nurses) Lilyann isn't eating as well as she was yesterday, but she did eat a little for me this morning. We are trying with the bottle and then feeding her the rest through her feeding tube.
Dr. Mendeloff made rounds this morning (just like every morning) and he told the nurses to turn off Lily's heart meds. If Lily keeps a nice heart rhythm through the night tonight, then he will let her leave the ICU....which is awesome news!!

thank you for praying and please continue to pray.

Saturday, April 19, 2008

We have had a major turnaround

It has been a rough two days...Lily has been refusing to eat...and she hasn't had a poopy diaper since Sunday!! (so you know she was one uncomfortable baby) Well, this evening...she finally had a good poopy diaper...and she has taken the last 2 feedings by mouth...all of the formula from the bottle!!! We are so excited!!
Lilyann is still in ICU...they are monitoring her heart rate...but it makes it much sweeter for mommy and daddy (and grandma) that we know Lily is eating on her own and making poopy diapers.
thank you for the prayers and continue to pray.

Will update again when i have a chance.

Friday, April 18, 2008

Pics of Lilyann from surgery

Lilyann's post-op picture--first time we saw her in PICU
Lily's little fist and a nickel--the comparison of the hole in her heart
Lilyann--April 18, 2008
Daddy and Lilyann

I am posting a few let you all see the improvement that Lilyann has made...Continue to pray...she is a fighter!!

Lily in my arms again

Lily is doing awesome!! Today, we got to hold her for the first time since her surgery!! it felt so good to have my baby girl back in my arms. Just holding her gave me a boost of confidence.

Lily is still in the PICU--they are monitoring her heart rate...she is still on the meds to keep her heart rate low. All of Lily's tubes/cords are out, except for the IVs for her meds and fluids. Occupational therapy was called for Lilyann to help with her eating. She isnt acting interested in the bottle right, they will probably put the feeding tube back in..but at least she can get a full tummy and be a little more comfortable.

Continue to pray..i will update again when i have a chance

Thursday, April 17, 2008

Still in the PICU....

Day #3....Lilyann is still in the PICU, but was moved to the less critical side of ICU--meaning 1 nurse to 2 patients instead of 1 nurse to 1 patient. Her color is looking better today. Her heart rate went up last night...she has arrythmia (dont know if i spelled that right)...which has her heart rate in the upper 180s...and it should be in the 140s. The Drs gave her some medicine to help bring her heart rate down a little...and she will have the infusion throughout the day as needed. Dr. Penn (pediatric cardioligist) told us that this is common which ventricular surgery patients. And that the medicine will help keep the electrical workings of her heart where they should be. If it slows her heart rate down too much, they will put her back on the pacemaker to help get Lily's heart rate where it should be. ~~it sounds like alot of heart talk, but all in all...this is common.
The Arrythmia has Lilyann in the PICU for yet another day...but it is better for Lilyann.

On a different note, i was able to feed Lilyann this morning...she took about 6-7 ml before getting fussy. She seems as if she is really uncomfortable... (TMI: she is passing lots of gas) The pain medicine is keeping her comfortable but in turn is keeping her digestive system slow. Right now, she is sleeping (they gave her some tylenol to keep her comfy) so she might eat some more later.

Continue to pray.

Wednesday, April 16, 2008

Day #2--doing better

Lilyann is doing better...she is off the pacemaker (it was on standby incase she needed it) Her heart is beating on it's own. She is officially off the oxygen. She has been breathing on her own since she came out of the OR; but her oxygen stats were not the best. The respiratory therapist was there this morning...dialating her airways and "stimulating" her lungs (helping to break up everything in her lungs that has settled) She had her first feeding this morning (before 8am) and she consumed 2oz of pedialtye in about 5 minutes...which is awesome. Before it took her almost 20 minutes to consume 1 oz. We are so overjoyed about the good eating report. This was her very first feeding since 3am on the day of she was one hungry baby. They will start her feedings back slowly...her degestive system needs to full wake she doesnt get a swollen tummy.
Lily was awake a little while ago...and she wasnt happy...she wanted to eat, and she wanted to be picked up. And she doesnt understand why we arent feeding her and picking her up. She was squeezing my finger today...and when they gave her a little more bottle, she reached up to help hold the bottle in place. Lily is getting fiesty, too...she wants to be moving around...Im so happy that she is doing ready for her to be moved to a regular room. Dr. Mendeloff said that she should be out of ICU tomorrow!!! YAY!!!

Continue to pray...and thank you for all the prayers from all over the world for our precious Lilyann.

April 14th and 15th

Lilyann's experience (from Grandma's point of view)
Well, this has been an experience. We arrived yesterday at 11:00a to begin pre-registration, lab work, x-rays . . . . .everything was going rather smoothly until time to meet the surgeon. He had an emergent surgery so we were not able to see him until around 2pm. He basically reviewed everything that we had already been told by the Cardiologist, but did share a few other items like the need for a temporary pacemaker and expected length of stay. We then left to find the hotel that Lilyann's Medicaid secured for us. This place was suppose to be within "walking distance" of the hospital . . . . .yeah, if you started walking about three hours before you were suppose to be anywhere. We actually stopped at the one that was 2.5 miles from the hospital only to find out "no reservation". . . . . . we were at the wrong place; they put us up at a place that is close to the Gallaria. Add to this mix a 2yr big brother Dakota. What fun!

Anyway, Lilyann was not allowed anything to eat or drink after 3am . . .no problem right . . . .wrong. For one that has not shown much interest in eating, she decided that 3am was a good time to start. So the day began. We left the hotel at 5:30am, arrived at the hospital at 6:00am. Lilyann was in the surgery holding by 6:44a and in the OR by 7:13. Then the wait and wait and wait and wait. She left the OR for recovery at 12:04pm. I've had experience with little ones in the NICU, but I wasn't prepared for what I saw. My heart broke. The surgeon said everything went well. The hole in her heart was the size of nickel and very close to the main artery. Think about the size of a nickel . . . .that is significant considering the size of her little heart. From start to finish, the whole procedure was just 15 mins shy of 5hrs.

Once they patched her heart and took her off the heart/lung machine, her little heart started beating again . . . . .only it was beating about every other beat, so the pacemaker was started. By the time she came out of the OR, she had started to breath a little bit on her own, but was still on the ventilator. Later this evening, she was able to come off of the pacemaker and the ventilator. Her color looks great! She already looks like a different baby.

They are keeping her sedated because she doesn't like her surroundings when she "wakes up". She sees us and does not understand why we will not pick her up . . .this makes her very upset and she "fights" the tubes and lines still in place. If everything goes well, they say we may bring her home on Saturday . . . . .continue to pray. Thanks for the thoughts and prayers thus far.

Tuesday, April 15, 2008

Evening update...from today's surgery

wow!! today was a day..I'm so exhausted...and i feel like I'm not really helping..because every time we go into Lily's room...she seems us, starts crying (it is such a heartbreaking cry!! ) it breaks my heart. i cant hold her yet...when she gets out of the PICU..we should be able to hold her. She is on morphine still every 2 hours. She is off the was helping her breath better, because they want her oxygen stats to stay at 100%. She is now on a little oxygen because her oxygen stats were dropping again...she was on a temporary help regulate her heartbeat...right now, the pacemaker is on standby...just to be there to help when she her heart starts to race or skip a beat.she is still bleeding a little more than the Dr's would they are running some labs on her see if she needs some help with getting her blood to clot...they did have to give her some more blood earlier today...She is putting out enough urine as of now. She still has a total of 8 cords/lines coming off of her. In the morning, she will get a bath...and they will put her blanket, her puppy, and some familiar things from home in and around her bed.this is so stressful, but was the first day that i didn't break out in hives. Dakota is now with Jed's aunt..and will be with them until Jed gets back on Sunday. The Dr's are "letting Lilyann make the rules" --she tells them when she is ready to move to the next step...we are just taking it slow and steady. I have pictures of Lilyann...but i didn't bring the cord to load i guess no pics until we get home. She is definitely a trooper...she has been thru so much in just the last few hours. i thank you for all your prayers, well wishes, and don't know how much it means to me and my family.

A successful surgery

Today was quite a day...Lily is now out of surgery...She is on pain medicine and she was breathing on her own...but her oxygen stats were going down and then back up, so they left her on the ventilator to help her out with breathing. They are planning on taking her off the ventilator within the next hour. She is doing good...and slowing waking up.

We did find out that the hole in her heart was the size of a nickel...just imagine her tiny fist (the size of her heart) and then a nickel...Wow!! no wonder she was so worn out.
Thank you for your prayers and continue to pray for Lilyann and her recovery.

Saturday, April 12, 2008

Packing for Dallas

Lilyann~~19 weeks old
Lilyann in her johnny jump up
Dakota, just being Dakota

So, the long awaited surgery date is approaching...this week, i have started packing for Jed and I..and for Dakota (he will go with us for the first 2 days and then come back with Boo~Jed's grandmother~and Aunt Samantha) i packed a few outfits for Miss Lilyann; and of course, we are taking her mobile, her favorite blankets, and stuffed animals...things that are bright and familiar to cheer up her room.

This last week before the surgery has been a stressful one...on all of us. I had another outbreak of the hives (this also happened when Dakota got his tubes put in ~~Dec 2006) the positive side to it all, is that i already have the medicine, if another outbreak occurs while in Dallas. Dakota is getting a cough, again (i think it is from the weather changes, and seasonal allergies) And Jed has a possible staph!! i know, alot has happened in the last week. Lily on the other hand is holding up pretty good. She is getting more active...playing in her exersaucer, and johnny jump up...and she even rolled over the other day...just once, from back to tummy..Which is a major accomplishment for Miss Lilyann. My fear from the surgery is that she would have some delayed motor skills, since she wouldn't be allowed on her tummy for a while after the surgery...but Lily is a fighter..she is holding up better than all of us.

Lilyann's surgery will be on Tuesday, April 15th...she is still the first case of the day--we will check in at 6 am...and they should start her surgery anytime between 7-7:30am. It will be open heart surgery. Please pray for God's guidance on the hand of the surgeon, Dr. Eric Mendeloff. I will update when i have a chance..I was told there is Internet access in the waiting area, but if not, i will have my sister (Marg) post the updates she wont be sending out an will have to check this blog site for the updates..unless i get a chance to update all our friends and family.

We will be at Medical City Children's Hospital in Dallas, TX.

If you don't hear any updates, you can text Jed's cell is the number (903) 399-8178...just be sure to leave your name with the text (it is an AT&T number) so we know who we are replying to and giving out information. I ask that you don't call, but just text...we probably wont be able to answer all the calls. Thank you. And continue to pray for Lilyann and our family.

Friday, April 4, 2008

I guess it's true..what goes up, must come down....

Today was Lilyann’s 4 month checkup...and her weigh in. At her last weigh in, she was 10 lbs 10oz. And today, she is 10 lbs 3 oz..she has lost 7 oz. We really don't know why she is losing the weight. The Dr thinks that the extra volume of formula (35ml/hr from the pump) it is making her heart work overtime to digest it all; which, in turn, is making her burn all the extra calories. I don't really understand it all. Before she wasn't getting enough calories to help her grow and she was barely taking anything in...and now she is taking in what she needs to and she is still burning all the calories. The Dr said to continue with the cereal and to give to her as often as i would like (at every meal). The cereal has more calories but not as much volume (like the formula) so it would be easier for her and she wouldn't burn those calories as fast.
The Dr is going to call the heart Dr's in Dallas to see about upping Lily’s medication for her heart. And she will tell them all the different things that are going on with Lily: irritability (could be due to teething), always hot and sweaty (not a good symptom for heart patients), the weight loss, and also that she is back to not taking in that much from the bottle. The Dr will call me on Monday and let me know.
I'm thinking that the Dr isn't too worried about her weight loss, because she is still growing just not gaining. She is now 23 1/2 inches long...and her head is 16 cm...She has grown a whole inch in the last I'm going to have a tall skinny girl.
Lily’s surgery is now about 11 days away...and it seems like it cant come fast enough. It hurts me to see my Lily hurting and frustrated. Today, she also got her 4 month shots, so she isn't the happiest of babies. Continue to pray for Lily and for our family...this is a really stressful time for us right now and we can use all the prayers we can get. Thanks again...and Love to all.

Thursday, April 3, 2008

New is an update on Lily and Dakota

Lilyann~~ 4 months old
Lilyann with her pink monkey
Lilyann playing in the exersaucer
It has been a while since i posted an update on her last weigh in, she was 10 lbs 10 oz...doing good. Since she is doing good gaining weight, the Dr said we can take her off the pump during the day and feed her by mouth if we want. We aren’t taking her off all day, just when she isn't napping or just chilling. we go on Friday~April 4th~for her 4 month checkup (can you believe she is 4 months already?) so she will have another weigh in--I'm eager to see how much more she has gained. Lily’s surgery is still scheduled for April 15th
Dakota~~sitting on the potty with his Caprisun (his new favorite juice)

(this is from Tuesday, April 1st--of all days)
On a different note, my son (Dakota) has decided that he no longer wants to wear a diaper. He rips the tabs off his diapers when he does have one on. So i tried to get him to wear a pull up..but that comes off too. He is in underwear or training pants when he is up...we have had one victory...he went pee pee in the potty this morning!! YAY!! and then at nap time, he takes his pull up off and poops on the rug. So we are taking a step forward and a step back..we are dancing in

Update since we started potty training on Monday...we are doing somewhat better...we are still having accidents..but Dakota seems to be more aware that something is happening when the pee pee is running down his legs. And he is running to the potty or running to change his undies or pullup. He gets so excited when he actually goes pee pee in the potty. Potty training is hard work--not just for the child, but also for the mommy; but potty training has a sweet reward: No more diapers (at least for Kota)