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 22, 2010
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 wrong...it'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.
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 wrong...it'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
4.5oz?!
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.
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 surgery...no 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.
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