The story of Lilly's heart.

Monday, August 30, 2010

Posts from Facebook and CaringBridge

Written on August 19, 2010
(FYI - This one is looong)

Well, I'm a little behind on my updating, but with moving and unpacking, we've been soooo busy! We are in our new house and have about 80% of our stuff unpacked. My birthday get together is tomorrow, so I WILL have it all done! Haha. 
First off, before I forget, Lilly is getting baptized this Sunday(Aug.22) and I am soooo excited. : )

We went to see her pedi on Aug 2nd, and she has had me add more formula to the breast milk. Lilly is eating only about 3oz every 3 hours. We were able to feed her every 4 hours, but the Dr said we probably need to go back to every 3. So I have about a million alarms set on my phone so I know when to feed her and when to give her each of her meds. It's the only way I can keep up! We go back for her 4 month check up on the 26th, and she'll be getting 4 more shots. Really not looking forward to that, but it's to keep her safe and healthy, so I'll deal. : )

We saw Dr. Hess on Monday, and she not only started her on another medication (Captopril...this now makes 3 medications at 2x a day for each one) but has also ordered a sedated ECHO at Cooks downtown for her next appt. They will be giving her some medicine that will knock her out enough to be still and asleep so that they can get the absolute best pictures possible. This scares me to death! I do not want her to be "drugged". She is so small and so innocent. I know it's what needs to be done, but it's my baby girl. She shouldn't have to do any of this. The appt is set for Sept. 15, so please say some extra prayers that it goes excellent...and that I can be strong and hold it together. : )

As far as the medication goes...the new medicine will lower her blood pressure and hopefully get the blood flowing through her heart the way it is supposed to, instead of through the hole. We had to go to the dr's office for her first dose so they could monitor her blood pressure after she was given a trial dose. She did just fine and we were able to go home right at the hour mark. Little did they know that once we gave her the full does, she would fall SOUND asleep and not want to wake up to eat. I called the next morning to let them know that the med really knocked her out, and Dr. Hess said to skip the rest of the doses for the day and start today on half the original dose. Also to move it from 3x a day to only 2. I haven't given her the first dose today yet, but I will be watching her close after I do. We are still giving her the Digoxin and Furosemide 2x a day. Dr. Hess has increased her dosage on both due to her weight gain, and she does just fine with both of them. Poor thing is going to be a pro at taking medicine before she's even 6 months old.

Now, for the not so great news. It's about a 95% chance that we'll be looking at surgery in a couple months. Dr. Hess basically said that with the results of the sedated ECHO and if the new medication doesn't help her to gain 2 pounds this month, she'll be scheduling the surgery at Cooks downtown. We'll be getting a second (and maybe even third) opinion if this is the case, so keep your ears open for an excellent cardiologist. 

It's really, REALLY hard for me to grasp this. I really thought this would all just "go away" and we would get past this. I do not want my baby to be put under, I don't want some random person to be there if she starts crying, I don't want her to be cut on, I don't want her to have a scar, I don't want to even think of the risk of her not pulling through,...I could go on and on with all of these fears, but it would take about 4 more pages. 

I KNOW that God has a plan and he doesn't give you more than you can handle, but I also know that I am wearing thin a little bit more each day. I never thought I would have a "heart baby", and I certainly never thought I would be dealing with open heart surgery on her before she's a year old. I pray that NONE of my friends or family members that have babies or are trying to get pregnant EVER have to go through this. This is so hard and I would not want to see one of my friends or family members have to deal with it. Sometimes I just look at Lilly and cry because I want her to be pain free and healthy. I don't think she's in any real pain right now, but I know once the surgery happens she will be. It takes about 6 to 8 weeks to fully recover along with about a 4-11 day stay in the hospital. And another thing on my mind is how in the heck are we going to pay for this? We're already on a tight budget with me staying home with her, and now we'll have even more thousands of Dr. bills. 

This is all just so so hard for me to grasp. I am trying to be strong, but it sure is a difficult task. The good thing is that I have an amazing support group. The other good thing is that this IS fixable. She has all her limbs, eyesight, and hearing, and she is beautiful. I have to keep reminding myself of the good things to fade out the bad. 

This is going to be the hardest thing we've every been through. Chelsea is so strong and I know he will comfort me whenever I need it. I know he'll be the rock I need. And I will do the same for him. He is an amazing father and husband and I am so grateful for that. I just ask for some simple prayers from you guys. I ask for strength, peace, and healing. I also ask that every one of you that are parents to go hug your kids RIGHT NOW. Tell them you love them and that you will always be there for them no matter what they will ever have to go through. I will update after her next appointment, or as soon as I find anything else out. Love to you all. 

Written on July 14, 2010
Thanks for all your thoughts and prayers! We went to the dr yesterday, and Lilly is doing alright, but not great. She still is not gaining the weight that Dr. Hess wants. She has gained a little bit, so she uped one of her medications to a little bit higher dose. She also decided that I need to start adding a little bit of formula to her bottle to add some calories. Normal breast milk is about 20 calories per ounce. With the amount of formula I am adding, it is now 24 calories per ounce. I don't know if she will eventually have me start adding more or not. Lilly seems to be doing ok with the formula added in. 
Dr. Hess also said she hasn't ruled surgery out just yet. The hole is still at 5mm, so we either need it to start getting smaller or Lilly to get bigger. Her breathing isn't as fast as it has been, so that's good. Our next appointment is Aug 13. We will have an EKG and weight check done. I added a couple pictures of her getting her ECHO done. I'll keep you all posted...

Written on July 7, 2010
Lilly is doing great! She is already up to 8lbs 8oz as of her last visit to her pediatrician on July 2nd. She got 3 shots that day and made me tear up from her screaming and crying. I felt so bad, but knew there was nothing I could do and that it was good for her to get the shots. She was pretty fussy for about 4 days and had a little fever for about 2. 
We went to Trophy Club for their fireworks show on the 4th, but Lilly didn't get to see any of it. She got extremely fussy about 10 minutes before the show started. I walked as far away from the crowd with her since she was screaming so loud, so I missed the show too. : ( Welcome to the mom club, huh? She fell asleep right as they ended, but woke up about 45 min. later screaming again. We figured out it was just gas(after another hour of screaming), and fixed it with lots of bouncing and finally some mylicon drops. Hopefully next year she will actually get to enjoy the fireworks. : )
As far as her health goes, she's doing well. I have started to bottle feed her my breastmilk because I truly believe she's not getting enough when she breastfeeds. I have talked it over with both doctors and they agree it is probably better. It's not my first choice, but she doesn't have to work near as hard to eat when it's out of a bottle. She's now eating 3.5oz every 3-4 hours. Occasionally she'll eat 4oz, but normally she can't take that much in. Her pediatrician is supposed to give me a call sometime this week about adding some formula powder to the breastmilk to give it more calories. There is also some drops they can prescribe that will do the same thing, but it's more expensive that way. I think I will just choose the over-the-counter formula for now. 
Her breathing is still fast at times, but it's getting better. The medicine is obviously working, so hopefully this hole of hers will close on it's own. We go back to the cardiologist on the 13th. I'm not sure if they will just be doing a weight check or if they'll do an ECHO and EKG. Either way, we'll be able to update the doc on her progress. 
Well, until her next appointment....

Written on June 22, 2010
(Please forgive me if this sounds a little's late and I'm tired.)
Lilly visited Dr. Hess today. The visit went well. I thought we were doing an EKG and ECHO today, but they just did a vital/weight check. She is somewhere between 7lbs 6oz - 7lbs 10oz. (The nurse didn't convert it for us) She was satisfied with how much weight she has gained, but still wants her to gain more. 
She also talked about her chest x-ray we had done a couple weeks ago. She said there is a little bit more fluid on the lungs than what she would expect to see on a 2 month old, so she has started her on a second medication and up-ed her lasix to 2 times a day. I can't remember the name of the new medicine and the prescription is still at the pharmacy since they didn't have it in stock. When I pick it up tomorrow, I will try and remember to update on here. 
We also talked about how much/often Lilly is eating. I am still feeding her every 3 hours during the day, with one 5 hour stretch at night. I have started to pump my milk and feed Lilly through a bottle to monitor how many ounces she is taking in at each feeding. She has been eating right around 2oz...well little did I know, that is too little!! Dr. Hess suggested I offer her as much as she can eat, and every time I have fed her since the appointment, she's eaten 4oz! I feel bad for not giving her enough, but I swear I thought she was full because she would fall asleep and not want anymore. I guess since it wasn't there, she didn't know how to ask for it? I only have about 10oz of breast milk in the fridge right now, so I am pretty much just pumping and putting it directly in a bottle. The other option to fill her up is to supplement with formula after she has fed on each breast for 10-15 minutes. That is certainly not my first choice, but if that is what Lilly needs, I will do it.
Oh yeah! The pump I am using is Stef's from when she had Tayven, so I talked to Dr. Hess about getting a prescription for a pump to be able to have insurance cover it. I found out that since Lilly is a cardiac patient, I can get the prescription! So I get a new pump through insurance. I don't know how much (if any) we will have to pay out of pocket, but either way, I am sure it will be cheaper than just buying it outright.  That is really exciting to me! : )
And the last thing we talked about was surgery. I wanted to know when it would all happen if Lilly does end up needing the surgery. Dr. Hess said that basically they will do the surgery when/if she needs it. She would ideally want to wait until she is 3 or 4, but that's only if she is gaining weight, but the hole is staying the same size. At age 3 or 4, if the hole is going to close on it's own, it will either already be closed or already have started to get smaller. If for any reason, at any time, Lilly's weight gain comes to a stand still, then they will do the surgery then. So that could be as young as 6 months and up. She said we should hopefully have an idea on all of that in about 3 months or so. Hopefully the medication will work, and we won't even have to think about surgery.
We go back on Chelsea's birthday (July 13) for our next check-up with her. I am praying that Lilly will show improvement on her weight gain.  I don't want her to have to continue to be on medication or need surgery. It breaks my heart that she has to go through all of this. I don't think it's fair. Why Lilly? There are babies born to mothers who do drugs and drink, and they are healthy as can be....why did this happen to MY little girl? I know it's all in God's plan, I just can't understand the path he's leading us on right now. I pray that I will soon understand and pray that she doesn't have to go through any hard times with this. I pray it's as easy as possible for her, with little to no pain. 
Please keep Lilly, Chelsea, and me in your prayers. I will continue to update as often as I can.

Written on June 14, 2010
Lilly was born on April 24, 2010 and was 5lbs 4oz, 17 3/4in long. The day we were supposed to bring her home from the hospital, we learned that she had a moderate to large sized Ventricular Septal Defect (VSD). The doctor still discharged her from the hospital, but told us to get her to eat often to gain weight and to watch her breathing. We started feeding her every 2 hours on the and night. It was tough, but she started gaining weight, so it was worth it. 

At 2 weeks old, we took her to the cardiologist. They did an EKG on her and said that the hole was smaller than originally thought, and that it would probably close on it's own without medication or surgery. The doctor wanted to follow up in 2 more weeks for another EKG and an ECHO. So we went in 2 weeks later and after they did the 2 tests, found out the hole is as big as they first thought. About 5mm to be exact. Her doctor, Dr.Hess, said that it is big enough to possibly need surgery. She said the first option is medication to see if that will help close it up. She put her on Furosemide with lasix and said we would follow up in 2 more weeks. We also have to take her for a chest x-ray to see how much fluid is on her lungs before her next appointment which is on the 22nd.

 So as of right now, we are giving her .3 cc of the medicine once a day and having her eat every 3 hours during the day with one 5 hour stretch at night. I have begun to pump my milk every so often to see how much she is taking in. She gets about 2oz every feeding and seems to get pretty full (we call it boob drunk: ).  Other than that, we are just waiting. 

Dr. Hess said if she does need surgery, it is open heart surgery and she would be in the hospital for about a week. We should hopefully know if she will need surgery within about 4 months. We are praying hard that she will not need surgery. 

At her last doctor appointment, she was at 6lbs 10oz. Lets pray for weight gain and no surgery!! We'll update as we know more.

Written on May 27, 2010
Well, we went to the doc today and got some not so wonderful news. It's not horrible, but it's definitely not what we expected to hear. She apparently is not gaining enough weight, and the hole in her heart is moderate size...the doc thought it was small the last time we went. The bad news - the doc is leaning toward open heart surgery for her. She wants to start her on medication first, to see if the hole will start to close with just meds. If it doesn't start to close and she doesn't start to gain weight, then we will have to do surgery. We should hopefully know about surgery in about 4 months. If we do have to do the surgery, it will be open heart, which means ICU for 2 or so days and then on a regular floor for 2-3 days. It will also leave a scar. : (

I know this is all in God's plan for Lilly, but damnit, it's heart breaking to think about her going through all of this. We really thought it was a small enough hole that it would just start to close on it's own. I just pray that she gets through all of this easily...wether it's just meds, or surgery. I ask that you all keep her in your prayers...we all know the power of prayer.

Written April 28, 2010
Well, now that we have taken Lilly to the pediatrician and I am not as emotional about it, I can finally ask for some prayers for her. (I say not as emotional as I start to tear up writing this..ha) On Monday when we were supposed to be discharged from the hospital the pediatrician came in and told us they heard a heart murmur when they checked Lilly and that he was going to order an EKG. This was at about 8am, and we didn't get any results until about 7:00pm. Needless to say it was an EXTREMELY emotional day.
When we did get the results, we found out that she has a heart defect called VSD (Ventrical Septal Defect). Basically it means that she has a hole in the bottom of her heart between the two ventricals. The size is moderate to large, and this could have something to do with her being so small. We don't know anything more than we have to keep feeding her as much as possible to get some weight on her. She had dropped down to 4lbs. 15oz. the day we left the hospital.
We will be taking her to a cardiologist within the next 2 weeks to find out if they think it will heal on it's own, or if we are going to have to give her medicine or possibly surgery. I wish I could share more, but we don't know any more just yet. The good thing is that she is eating well and has gained 2 ounces since we left the hospital!
All I can ask from you is to pray, pray, pray. I know God has a plan and he won't give us any more than we can handle. I also know that prayer can work miracles, so the more people praying, the better Lilly will be! I will update all of you as we find out more.

Sunday, August 29, 2010

Decided to Switch Blogs

Hi friends and family! We have decided to switch blogs because I found this really cool site where you can actually make a hard cover book out of your blog! It only accepts blogs from certain websites, so we are switching. This way, Lilly will have a book to read and look at as she gets older and wants to know where her "battle scar" : ) came from. I want to include the posts from the Caringbridge website, so I am just going to copy and paste them into one post. Once that is done, I will start updating here and here only. Thanks for all your continuous prayers. Love to you all.