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!!

Home from the hospital!!!

The Nichols are home from the hospital!!


This morning the nurse weighed Lyric and she has made it back up to 8lbs 4oz... up 2 ounces since Friday! They have mega boosted Lyric's calorie intake, added medications to help her heart work more efficiently and with the tube feeding Lyric is not burning calories trying to eat! She is gaining weight and we pray this continues until surgery. The doctors have yet to set a surgery date because they wanted to see if she was even able to put weight on. Last night before they would even talk about letting them go home they had Summer place a feeding tube in Lyric... she was terrified, but she stopped and got control and did what most moms are never asked to do to their own child. Summer did an amazing job and if the tube comes out at home, Summer now will be able to put it back in on her own without having to go to the E.R. The nurse that taught Summer said she had never had to teach a parent to put a tube into their own child, and they were all quite impressed with Summer's ability to do it, even in that I saw God calm Summer down enough to be able to put it in.

They still have to be super cautious of germs around the baby, due to the fact that Lyric is very susceptible to catching colds and then her lungs would be in trouble, so the best way to encourage them right now is through texts, phone calls and facebook. Thanks for respecting this as it is safer for Lyric, especially headed into flu season.

Once they see the Dr. again we will update as soon as we know.

Welcome!

Welcome to Lyric's blog...We copied everything to this blog so people could keep up and more importantly keep up the prayers!! Either Randi and I will be blogging as soon as we have any updates on Lyric. As of right now we are still in the hospital and still waiting to see what the next step is. Thanks again for all of the prayers for Lyric, for Travis and for myself.

Aunt Randi's Post on Lyric 10/09/10

Yesterday Lyric had a visit to the cardiologist and when it was all said and done they ended up admitting her to the hospital for feeding tubes and monitoring. They checked her lungs, which they were worried might have some infection in them but everything came back clear, right now they are most concerned with the fact that Summer has tried everything she possible can at home to get her to gain weight and she just isn't...hence the feeding tubes. Summer is still pumping like a champ and Lyric is taking it well:) As of right now they started her on two more types of medication, making three total and now she will stay there to see how she responds and if she starts to gain weight. If she does start to gain weight then she will go home with the feeding tubes and Summer and Travis will continue to 'fatten her up' that way, then they will schedule the surgery from there. If she doesn't gain weight then they will go ahead and move the surgery up. Lyric is handling it all SOOOO well and God continues to work and provide for all three of them. Thank you for your prayers and I will continue to try to keep everyone updated via my blog as much as I can. Thanks again and Thank you God...

Summer is so AWESOME!! (I know I am a little, okay a lot biased) but she truly is doing awesome, pumping and feeding and not sleeping a lot...I am so proud of her!

Daddy and Lyric:))))

After the feeding tube was put in! She slept so great last night!

The hospital volunteer brought Lyric a mobile and she LOVED it!!

Hanging in there like a champ!

10/9/10

We went into the cardiologist yesterday because Lyric's cough had become worse and her weight gain was not going so well. After an EKG,
echo & chest xray they decided to admit Lyric into the hospital for monitoring & to place a feeding tube to help Lyric gain weight. Despite everything we tried at home she hasn't been able to get above 8lbs 4oz and is now back down to 8lbs 2oz. As her mom this was very hard... doing everything I could think of and still not being able to fix her... feeling like maybe I wasn't doing enough. The doctors reassured us that we tried everything possible to help Lyric gain weight but her heart is having to work so hard to keep up, let alone put on weight. The first feeding tube did not go in so great (Lyric couldn't stop gagging & turned so white after screaming for what seemed like forever) the nurse had to pull it out and then a couple hours later they tried again and it went in with ease! Other than rubbing her eyes & nose when she is tired she doesn't seem to mind it! They have started her on two additional medication making a total of three, one every 8 hours & the other two at morning & night. This may sound crazy considering we've known about Lyric's V.S.D. for a month now but it all became very real yesterday as they were placing monitors all over Lyric's chest, back & feet... then came the feeding tube and it broke my heart. I know this is nothing compared to what lies ahead so I very quickly pulled myself together, calmed down and was able to rest once again in the fact that she is God's and He has her whole being in His hands! God is good & we're so thankful for all the ways we have seen His hand guiding and protecting us in this chapter of our lives.
Please be praying for Lyric over the next couple days & weeks. She will be here in the hospital until they feel she moving forward if no change is seen in her weight they will be moving up her surgery date. We will most likely be going home with the feeding tube & this is scary to me but I know it maybe Lyric's best bet for getting bigger before her surgery! Thank you again for the love & prayers! We feel so honored to have such support! God is good all the time and all the time God is GOOD!

9/28/10

Today we met with the Cardiologist and the hole is still there. It is the same size that it was 2 weeks ago. They found a piece of tissue that is growing and may have to remove it once inside. They won't know until she is in surgery but if they opt not to remove it... she will go in every 6 months to have it looked at and if they feel that it is becoming a danger she will have to have yet another surgery. Please pray that it is easy to remove or better yet that it gone when get in there. We go back in three weeks and we will be deciding on a location & date for Lyric's surgery. We have the options of Dallas, Tulsa, or Houston. Amy (mother of Ella Dawn) has given us a great report on their experience in Dallas so that is where we are leaning towards.
Lyric is gaining weight (YAY!) and eating well once again!
We tried formula with my milk and that didn't work... longest week of no eating and one really fussy baby :-( So we went back to just my milk and she is doing sooooo much better! She has shots on Thursday, she will only be receiving 3 of the 5 immunizations because they don't want to put any stress on her body. Our prayer is that she gets big & strong for her surgery and that she stay healthy!
Please pray for us to have wisdom on where to go & for Lyric to be a chubby baby ;-) Thank you for the prayers!

9-24-10

Today we went to see the doctor for another check up and great news... Lyric broke the 8lb mark & now weighs 8.2lb!! YAY!! She is in the 1.17 percentile... so she is on the charts!! The doctor said that we are entering the stage where it will start to get a little harder with Lyric because her body will start to feel more of the stress from the defect. So please pray that her little body handle this stage good.
We were talking to the doctor today and we were telling her that we had to go to the ER on Tuesday because Lyric wasn't eating well and since she is on a diuretic (Lasix) we wanted to make she wasn't getting dehydrated. All the doctors & nurses there wanted to hear Lyric's murmur because they said it was so impressive... not exactly what I was wanting Lyric to be known for but anyways... Lyric's doctor said the impressive part is that the murmur isn't from Lyric's heart defect! The reason this is so amazing is that had the doctor not heard the murmur she would have never order the chest x ray to find that her heart was enlarged... then the doctor never would have sent us to have an EKG & Echo done... then we would not have found the hole. God is so good even with the delivery of hard news He is protecting and preparing the way. They really don't know why Lyric even has a murmur!

In God is my salvation and my glory;
The rock of my strength,
and my refuge, is in God.
Trust in Him at all times, you people;
Pour out your heart before Him;
God is a refuge for us. Selah
Psalm 62:7-8

God is good... knowing the plans He has for us is for our good is the most reassuring thing! We have seen God's hand so much and we are thankful that we can lay all our cares upon him! Thank you for the prayers!

9/20/10

We went to see Lyric's pediatrician today to monitor her weight, oxygen levels, heart rate, and overall check-up. They had hoped by changing Lyric's eating schedule to every 2 hours that we would be able to put some weight on her but she lost a little weight so they've added some calories to my milk! We think the reason she lost the weight is that she had some extra fluid built up but she was put on medication last week to help with that... we think and are hoping that she has just lost her water weight and will now start to gain!! Good news is that her oxygen level is great & she is still the happiest baby in the world! We go back Friday, we see the cardiologist next Tuesday and then back to the pediatrician next Thursday! We hope to find out more details for the coming weeks on Tuesday from the Cardiologist and will keep everyone posted! Thank you for the prayers and all the love!

The Day We Found Out...

This is how our day started... first doctors visit so happy!

Where to begin, I really have no clue... I never imagined that Tuesday September 14th, 2010 would forever change our lives.
Yesterday we took Lyric to see her Doctor because she has had a cough and we wanted to make sure that it wasn't RSV or a bad cold. The doctor listened to her chest found no reason to think it was RSV but she heard a murmur, she said that sometimes when babies get sick they can develop a murmur but she wanted to do a chest x-ray to make sure we didn't miss anything. We did the chest x-ray and found that Lyric's heart was enlarged... they repeated the x-ray to make sure it wasn't the angle of the x-ray and again her heart seemed large for her small body. Our pediatrician then sent us over to Children's hospital to have an echo cardiogram done. This took about 25-30 minutes and Lyric did great she just laid there and kicked a little. The tech finished up the ultrasound and I asked if I could dress and hold Lyric and she said that she just needed to check real quick with the Pediatric Cardiologist... at this point I felt my throat closing but tried to tell myself it was just routine... Travis was like "I'm sure this is just routine!" The doctor came in and listened to her heart and got up and said "let me draw you a diagram so I can show you what is going on." I then felt all oxygen leave my body... as a mom I felt I had been hit by a truck. He went on to explain the way a healthy heart works and then he told us how Lyric's was working. She has a large hole in her heart a condition called Ventricular Septal Defect... we don't have too many details right now but he said that it can be corrected with surgery.
A ventricular septal defect (VSD) is a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart.
This is the most common heart defect in babies... 2-6 babies out of 1000 are born with it and in 80-90% of these cases the hole will close on its own but in Lyric's case the hole is so large, they give it a 5% chance of closing on its own. We have begun bottle feeding Lyric my breast milk so that we can monitor her intake. She is having a hard time eating because of how hard her heart is having to work it is like she is running and trying to eat at the same time. Also she is burning a ton of calories working so hard and she is not taking enough in to make up for it. The doctor told us "To be honest, you need to be prepared for surgery because in my 25 years of doing this I've never seen a hole this size close on its own." These are words you never want to hear as parents and although this maybe a more routine surgery for the doctors it shook our very beings. Open heart surgery on our little perfect baby girl... I had never felt so... everything at once! Travis is a strong man and I'm so thankful for him... I have only seen him cry twice since we have been together and yesterday we both cried as we held our sleeping Lyric.
I don't know why God is allowing us to face this but I do know that His plans are perfect towards those who love Him. Please pray that the hole closes on it own and that in the mean time Lyric doesn't get sick because they said that it can be very dangerous with her heart defect. I have seen God do amazing things and I know that He will do more than we could ask or think!


The LORD is my strength and my shield; my heart trusts in him, and I am helped.
My heart leaps for joy and I will give thanks to him in song.
Psalm 28:7

Lyric during the ultrasound... she was asleep at this point!