10/29/10

No real update, we were hoping to hear from Dallas to set up the date for the surgery & instead they called Lyric's cardiologist needing a little more information. We should hear from Children's Medical Center of Dallas as early as Wednesday & no later than Friday. Thank you for the prayers! We opted to wait until we hear from Dallas to decide on weither or not to do the overnight continous feedings. Please pray for us to make a wise decision because there are risk involed with the all night NG feedings, so we pray that she puts weight on without having to do so. They added more calories & she is almost up to taking 3oz every feeding!!! YAY!

Changes

Today the nurse came to the house to check Lyric's weight & lungs, she sounds great as far as her lungs are concerned but her weight gain is once again not going according to plan. She has only put on an ounce in the past week (she should be putting on 1/2 an ounce to 1 ounce per day on average) so the new plan is to do a continuous feed through the night as she sleeps via a feeding pump. This will help her get better rest & hopefully help her stay awake a little more through the day, having more energy to spend time with mommy ;-). We will be giving her 38 ml every hour as she sleeps from 11:00pm to 6:00am & she will be hooked up to a monitor that will tell if her heart slows down or if she starts having trouble breathing for any reason. We will be doing this until the day of her surgery & are still waiting to hear from Dallas.
The doctors told us that it would be a constant battle to put weight on her but this is way harder than I ever thought. They said that she'll gain, do good, stop gaining, change up her eating, gain, do good for a week or so & then begin to stop gaining they called it the "Frustrating Cycle". This is an ever changing trial & error, but Lyric is such a trooper! I'm so proud to be her Mommy!
Thank you for the continual prayers!

On a cute note all our families are getting their flu shots and today Randi's family went to get theirs and last night they were talking to Belle (our 3 year old niece) explaining to her that she was getting the shot to protect Lyric from germ & to stay well. Belle & Kimber went and handled it like champs! They offered her the mist & she just told them that she needed the shot, they let Belle decide & just like a big girl she did :-) the mist is not recommended for people that may be around Lyric because it's a live virus... Pretty cool that Belle was ready to make the sacrifice necessary without even really knowing! God gave her the strength to handle it like such a big girl!!!

10/25/10

Lyric weighed in at 8lbs 13oz today! We are so thankful that she is growing & even though she hasn't climbed in her weight the doctor are sure that her lungs are not in any danger do to fluid build up, this is a great report! We hear from Dallas this week & please be praying for our family... anytime we take a moment and think of what lies ahead for our little girl our hearts break. We do our best to cope but to not focus on everything that will be taking place over the next month! We are praying for peace & grace to get through this everyday! Lyric is such an amazing baby & is always smiling... we just look at her & think WOW! God is so good all the time! We thank you all for the gifts of love, prayers, & support! She loves playing with her hands!!

I always tell her that God gave her those hands and we talk about all the things that she can & will do them... She just smiles at me but I know she'll do great things one day and for now she is doing a amazing job at lighting up the lives of those around her :-)

One step closer

We met with the Cardiologist today & he said that Lyric is looking great! She is putting on weight at a more steady pace since they upped her dose of the Lasix & her lung sound clear!! He is sending her file down to Dallas to start the surgery process. We whould be hearing from Dallas within the next week to schedule her surgery date.

We are ready for Lyric to be better & for her to not have to work so hard to breath, eat, & or even just be awake. All ready to see the doctor

She looks like she is being sneaky. Hehe

Our little family! Waiting to see the doctor.

Lyric's wonderful Cardiologist, Dr. Ward.

Even though we have known Lyric would have to have this surgery it is still so very scary to know that within the next couple of weeks it will be a reality.

This evening when we got home this is what was outside our home... fitting don't you think? God is faithful & he has been with us every step of the way! Thank you for all the prayers. We feel so honored to have so many people praying on Lyric's behalf & for our family!

Smiles!

Update 10/18/10

We started our morning off at Dr. Harmon's office, Lyric is growing which is sooooo great but is still doing it at a rate that is a little faster than the doctors would like to see. Sept 28th Lyric weighed 8lbs 4oz & by Friday October 8th she had gone down to 8lbs 2oz at this time she was admitted into the OU Children's Hospital where we spent the next 5 days. Tuesday the 12th she has released from the hospital at the weight of 8lb 4oz, the Home Health Nurse came by the house on the 13th & Lyric weighed 8lb 5oz. Friday the 15th she weighed 8lb 10oz & today she is up to 8lbs 14oz! Please pray that this is a healthly weight gain & not due to fluid built up somewhere in her body. The Dr. said that she was looking great & very alert :-)
As of right now they are not changing any of her medications until we see the cardiologist on Thursday. We had C.B.C & B.M.P ran on her blood this morning but they said that her blood had hemolyzed (The destruction or dissolution of red blood cells, with subsequent release of hemoglobin) which means as soon as she wakes up from her nap we have to go & do it all over again :-(
Lyric's cough is always a concern because it means that her lungs have excess fluid due to her V.S.D. & if the medications don't work then they may have to place a band to help restrict excess blood flow to her lungs. It is rare that this will happen because they said if they go in they will just fix the hole & not mess with 2 separate sugeries.
We are getting used to the NG tube... she tries to hold on to it, play with it, but then she pulls it & the tape doesn't feel so nice so she is learning to leave it alone. Hard lesson to learn but she is one smart cookie!
Thank you for the prayers & for all the love you send our way!

10/15/10

This morning Lyric woke up with a cough, so we called the Dr. and they saw her at 1:00 and said her lungs looked clear, but that she had gained too much weight. I know confusing right? First they wanted her to gain weight and when she did then it was a concern, but the reason that the weight gain is a concern is because the gain was too much over two days, which would mean fluid retention, and not normal healthy weight gain. The concern with this is that the fluid is pooling somewhere like the lungs again. So they decided that to get the most accurate weight reading it would be best if they waited until tonight when the home health nurse came, because she had just weighed Lyric on Wednesday, to assure that it wasn't due to a scale variation.
Tonight when the nurse came she confirmed that Lyric had gained five ounces in two days which is too quick, so they are upping her dosage of the diuretic to see if that doesn't clear up the fluid. The next appointment now is Monday. Most likely adding new medications to get us to the surgery date. Lyric is doing great, considering all she going through. We are getting used to the feeding tube and how everything works here at the house.
We will post on Monday if anything changes.
Thanks again!!