The story of Lilly's heart.

Wednesday, September 22, 2010

Blood Work = Normal

I took Lilly to get her blood work done on Friday. I THOUGHT they were only going to do a little heel stick test...boy was I wrong. They actually drew her blood like they would an adult! It was so sad and difficult to watch them do that to my sweet baby girl. As soon as it was over she cuddled up close and I made sure she knew she was safe. I hated going through that without Chelsea there.

I got a call yesterday from Dr. Nash's office letting me know that half of the blood test came back normal, and the other half clotted before it got to the lab, so they weren't able to do any kind of testing on it. Her urine sample came back normal as well. I'm not sure if we will have to have the blood drawn again or not. I called Dr. Hess's office to see if they wanted it drawn again before their conference tomorrow, but never got a return phone call. Hopefully they don't need it. There is one nurse up there that I'm not too fond of, and she happen to be the one to take the message. Hopefully she got it to the right person.

Dr. Hess meets with the other cardiologists affiliated with Cook's tomorrow to discuss our surgery options. I know Dr. Siu is against the surgery and Dr. Hess is for it. I have no idea how many other doctors will be a part of the conference. I am hoping that I get a call from someone once they make their decision. I don't know if they call on the same day, or if I will end up waiting a couple days or, heaven forbid, until our next appointment on Oct. 11th. Either way, I will definitely update with the information.

Lilly was nominated to win a Beautiful Life session through Pebblebrook Portraits by a friend of mine from high school. Well we won! I took her today to get her pictures done. Becky did an amazing job and I can't wait to see all the pictures!! I will be posting some of them once I get the CD of all the images. She cooperated for the most part and only peed on one of the props. lol. Good thing it was washable! I can't believe how beautiful our little girl is. She is such a blessing!

Until we have more info...

We love you, Lilly.

Wednesday, September 15, 2010

Something other than her VSD

We saw Dr. Hess on Monday, and got some not so wonderful news. She said that her opinion is that we need to go forth with the surgery and do it before Thanksgiving. I know that I have been preparing myself for this, but it is 100x harder when you actually hear it come out of the Dr's mouth. I wasn't expecting her to say that, at all. She said that she would have to present it to the other cardiologists that are affiliated with Cook's next wednesday before we have the final go ahead. She gave her the "ok" to have her sedated ECHO, also.

So, we had Lilly's sedated ECHO today. It was definitely a little stressful this morning. She couldn't have anything to eat after 5am, so after feeding her at 1am, I got up again at 4:15am to feed her. Luckily she ate well and her little tummy stayed full until about 10:30 or so...which is right after she was given the medication, so it worked out.

Once we arrived at Cook's, they checked us in, did her vitals, and then gave her the opportunity to go to sleep without the medication. Of course she was wide awake and even me laying with her in the dark didn't put her to sleep. Stubborn little thing! : )

Around 10:15 the nurse gave her a half dose of the medication, and after about 20 minutes of fussing and gagging (apparently the medication tastes horrible), she was out like a light. They did the ECHO, which took about 45 minutes or so, and then woke her up and let her have a bottle of breast milk. They were supposed to see if she could hold down clear liquids first, but since she got only a small dose of the medicine and she didn't even come close to wanting the Pedialyte the first time we offered, they allowed her a full 3.5 oz of breast milk. She drank it, and promptly went back to sleep.

After she took her bottle they had a cardiologist, Dr. Siu, come in and review the ECHO with us. I'm not sure if his news was good or bad. He said that he feels there is no evidence that shows Lilly's slow weight gain is due to her VSD and that he doesn't feel she needs the surgery. At least not now. Her VSD is kind of shaped like a funnel. It's about 7mm on the left side and 3mm on the right. The pressue on the left side is at around 129 and at around 27 on the right. That is GOOD. If it were opposite, we would be in a whole different situation. There is a valve in front of the hole on the right side that is helping with the blood flow and actually decreasing the amount of oxygenated blood that goes back out into the body. Of course this is just HIS opinion.

Awesome right?! Yes it is, however the scary news is that he thinks it is something else in her body causing her to not gain weight. He named off a few things such as anemia, cystic fibrosis, reflux issues, gastrointestinal issues, etc. He has no idea what it is, but highly suggests that we get with Dr. Nash and start to research our family history and other things that might be causing the slow weight gain.

So basically, we are back to square one in my opinion...if we agree with this Doctor. We have no idea right now what is causing it. Yes, it could still be the heart, but he put up some very good evidence that it's not the heart causing it. It won't close on it's own since it is not a "muscle hole", so eventually she may need the surgery, but as of now, he thinks that would be jumping the gun.

I really don't know what to think. Of course I have already started to blame myself for everything that is going on. I know that will only cause more stress and more pain, but I can't help but think that it's something I did or am doing. I just don't get it. I follow her schedule, I give her her meds, I offer her milk/formula when I feel she may be hungry. I just don't get it. I don't want this to be something that is not curable or something that is going to cause heartache her entire life. I don't want to spend days at a time in the hospital. I know that I will do whatever she needs, and I will do everything in my power to help her grow and become the sweet little girl I know she will be.

We still have the other appointment scheduled on Oct. 5th with Dr. Blumenschein, so hopefully that will give us another opinion to somewhat make a decision on what to do. I also have called Dr. Nash to make an appointment to discuss the other things it could be and how to go about testing for them. The date is not set for that one yet.

***EDIT*** I have received a call from Dr. Nash (after her office hours and for 30 minutes, might I add) since I wrote this. We have a blood test scheduled for Friday the 17th. She says she doesn't want to test for cystic fibrosis until after we get the blood test done. We don't want to put Lilly in any pain, so we are just going to do a heal prick test for now. She still feels it is the heart that is causing the problem, but is definitely willing to look at other options. She wants to get in touch with Dr. Hess and discuss some other ideas so we can all be on the same page. She also is interested in what Dr. Blumenschein has to say. We all agree that if surgery is what is best, Lilly will have it, but also don't want to rush into it if it's not needed quite yet. I want to take this time to give some MAJOR kudos to Dr. Nash...she is amazing!! If any of you are looking for a pediatrician, I HIGHLY recommend her. She never makes me feel rushed and always answers every one of my questions until I completely understand every aspect of it. She is wonderful! Ok, I'm done. : )

We need your prayers for knowledge to come into our Drs minds and for them to just kind of say...huh, I know what's's this. We can diagnosis it, treat it, and get on with the unknown. I think that not knowing is the absolute hardest part. We have no control over any of it, and it's eating away at us. Please, please just say some prayers for our family to have some peace and healing of Lilly.

Waiting to go back to our room...

Trying to go to sleep without the meds by laying with mommy...

Wide awake talking to daddy...

Getting the yucky medicine...

Getting the ECHO...

And we're awake!..

We love you, Lilly.

Thursday, September 9, 2010


Yep, that's right...Lilly has eaten 4.5oz for her night time bottle 2 nights in a row now!! That is the most she has EVER eaten. The only bad thing about it...she is not eating very much throughout the day. So I'm not sure if her stomach is getting bigger and she is able to eat more, or if she is just hungry from not really eating during the day so she eats more at night. Either way, I see it as progress. We go back to Dr. Nash, her pedi, tomorrow for a weight check and to check up on how she is taking solid foods. Which, by the way, we tried again tonight. She is just really not interested. She did better than last time though, so I am just going to continue to keep trying everyday until she gets the hang of it.

Our next appt after tomorrow will be her "pre-op" appt with Dr. Hess, her cardiologist. That one is on Monday, and it's just to check her to make sure she is well enough to get the drug that will sedate her for her next ECHO, which is on Wednesday. The ECHO is scheduled at 9am at Cook Children's Hospital in downtown Ft. Worth. I'm pretty nervous about it, so please keep us in your prayers.




We love you, Lilly.

Thursday, September 2, 2010

Solid Foods

We took Lilly to her pedi last week and she has decided it's time to start rice cereal! Ahhh! : ) She's getting so big, but staying so small. haha. We talked about Lilly's progress and then got the dreaded 4 month shots. Lilly did amazingly well, actually. She still screamed and cried, but not near as much as she did with her 2 month shots. She cuddled up real close for a few minutes afterward and then got a bottle. It pretty much immediately put her to sleep. : ) 

We started rice cereal last night (Sept. 1). I'm making all of Lilly's baby food myself, so it was brown rice ground to a powder and then boiled to the correct consistency. She got about 5 spoonfuls before she gave up and decided this was not her thing. I think it may have been a little too soupy for her to really grasp the fact that she was eating something solid. We'll be trying again tonight with a bit thicker batch. I may also add some cinnamon for flavor. If she doesn't do well tonight, we may wait another week or so to try again. I know most doctors recommend that babies be able to sit unassisted, and she's not quite there yet. I guess we will find out tonight. 

 Unfortunately, Lilly has decided she doesn't want to eat as much as she was. We have gone from 3oz every 3 hours to 2oz every 3 hours. I am not a fan of this. I called Dr. Hess today to see if we should up her medication or if there might be another reason she is eating less. I had to leave a message with her nurse, and have not heard anything back yet. I guess it will be first thing tomorrow morning. I can sometimes get her to eat an ounce in between feedings, but not every time. This terrifies me that she might be at her stopping point. Some heart babies will stop gaining weight completely at a certain point, and that automatically means matter what else might be getting better. I am praying that this isn't the case, and that she is just going through some sort of weird phase. Please pray that's all it is. 

The date of our sedated echo is getting near. The reality of surgery is also getting closer and closer, so we are trying to prepare ourselves. I called Cook Children's to find out about scheduling a tour of the operating room and PICU. They do them once a week, or they can even schedule private tours. The lady I spoke with said to wait until about a week before her surgery(if she has to have it) to schedule one. I also scheduled a second opinion appt with Dr. Blumenschein in Dallas. That appt is on Oct. 5. She works through Children's Medical Center of Dallas. I am struggling on which hospital to choose if we do need the surgery. Maybe I should let that one go until we find out for sure that we will need the surgery. That might be a good idea and take some stress off me. : ) 

That's about all the updating I have for now. Keep us in your prayers please. : )

We love you, Lilly.

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.