Blessed

Natalie got her sutures out yesterday. She is looking better every day. We are still working on her taking everything by bottle versus the feeding tube.

We have start learning how to use the feeding tube just in case we leave the hospital with it. They are getting were they want us to do everything, which is good...one step closer to leaving the hospital until next surgery.

God has blessed us with Natalie and given us a miracle with this past surgery being so successful. Thank you all for your constant prayers and support, Larry and I feel so overwhelmed with your blessings.

Happy Girl

1 Corinthians 13:7

"Love bears all things, believes all things, hopes all things, endures all things"

Natalie is doing amazing! We got everything lined out the other day. She was having withdrawals from a medication, they just weaned her a little too fast. They put her back on it and we are starting the weaning process again. Since getting everything lined out, she is like a new child. She smiled yesterday afternoon for the first time in a week!

The goal now is to get her back to feeding on a bottle versus the feeding tube. She is doing okay, she just gets tired really quickly. Once we get the bottle down better, I think we might get to leave the hospital. Yes, I did say leave the hospital...not Amarillo, but that is okay with me for now. I think we will be in the Dallas area at least until after her next surgery, which should be in December or January.

Carter is doing much better as well. He is still a little congested, but nothing major. We got some more train tracks for his little Geo Trex Trains and man, he loves it. I have to recommend to all you moms who have small boys, this is the gift to get. You can add to them and they do have Cars (the movie) themed ones. We are obsessed with Cars and Thomas the Train. Hey, I can handle that, I am just glad I have not had to watch the Wiggles in almost a month.

Matthew 17:20

"For truly, I say to you, if you have faith like a grain of mustard seed,

you will say to this mountain, "Move from here to there, and

it will move, and nothing will be impossible for you"

8th Floor

Natalie moved up to the 8th floor yesterday! This is a huge step for us. She is off oxygen all together and looks so much better without of the tubes on her face. She still has the feeding tube, but we are slowly working on her feeding by bottle again.

She has been a bit cranky the last night and today. We think she is either in a pain from her incision or her formula is upsetting her tummy. I hope we can get that figured out soon, because a cranky baby is no fun for anyone. On a positive side, her stats do not drop when she is screaming so that is good.

We miss all our ICU nurses already! We will see you all again in December for the Glenn Shunt, but come upstairs and see this next week if you are working.

Phil 4:6-7

Phil 4:6-7

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpassed all comprehension, will guard your hearts and your minds in Christ Jesus"

Natalie is still doing amazing! She got a few of her lines removed yesterday and should get the rest removed today. There is talk about her possibly moving up to the 8th floor, the cardiac floor...this is huge!! Natalie doing better than anyone ever thought should would.

I get the impression from talking to people and looking back on the day of her surgery, that everyone was nervous. When Larry and I showed up that morning, several nurses came in and hug us and told us they were praying for us. I told Larry after thinking back and seeing everyone's faces, I am starting to think they were not sure how she would do in surgery. She had the BT Shunt surgery once before and did not tolerate it, which had never happened before and they were about to re-attempt it. Gosh, how overwhelming.

God does answer prayers, it is in his perfect time though. I think Natalie has shown everyone that she is a fighter and has God in her corner.

Breathing Tube is Out

Natalie got her breathing tube out yesterday. She is still on oxygen, but it is a step in the right direction. Dr. Forbess came by yesterday and did not like the position of her PICC, so they removed it as well.

Her stats are amazing! She got to eat briefly last night via feeding tube. They stopped her feedings early this morning. The doctors are hoping to pull some of her lines out and to do so she needs to have not eaten 4 hours prior.

She is still pretty sleepy, but is a little more awake this morning. She has her head titled again looking that the monitors; she loves the lights. I keep telling her to enjoy the lights, but we do not need the numbers to flash or any alarms going off.

We took Carter to the doctor yesterday. He just has the common cold. He did get the flu midst while we were there, so that was good.

Pink is In

Natalie's new favorite color is pink! Before her surgery her skin tone looked a bluish-purple due to the lack of oxygen. She is now pink and looks amazing. Her stats are in the high 80s and she has done awesome since her surgery.

Her xray this morning showed a little haze in one of her lungs, this is not uncommon and happened after her last surgery. They are doing some treatments to clear it up. She is still sedated, but they are slowly weaning her off the medicine and her breathing tube.

Thank you all for your support and prayers yesterday, the surgery was successful! We still have along road ahead of us. The surgery was only to by us time until either the Glenn Shunt or a heart transplant. I have so many questions for the doctors, but I realize most of them will not be answered for another two months or so and I am actually okay with that for now. The fact that she has time, works for me.

I will explain more later about the transplant and the glenn shunt procedures, but I am off to take Carter to the doctor now. Yes, my sweet other child is sick. We found a pediatrician here that was recommended to us. I think he has allergies, but with everything going on, we want to be safe.

Yeah!

I really want to scream with joy, but I am not sure if that is allowed in the hospital. Dr. Forbess said she is doing awesome! We still have a road ahead of us, but we crossed a major bridge today. He is hoping to get her off the breathing machine tomorrow sometime, as well.

Thank you all for your support and prayers!

I will post later tonight on how she is doing.

Praise God

We just got another update...Natalie is off bypass and the shunt is in. Her stats are in the 80s and she is doing awesome! The nurse said this is better than expected...thank you, Lord. They are still finishing up with some things and have to still close her up. I will update after the surgeon comes out to talk to us.

Thank you to all of our prayer warriors! We are overwhelmed by the amount of support everyone has shown us.

Second Update

Just got another update...Natalie is doing good. She is currently on bypass and Dr. Forbess is sewing the shunt in. Please pray that she tolerates the shunt this time.

Surgery Update

We just got our first call from the OR. It took them a little while to get an iv started, but that is nothing new. Dr. Forbess started a little after 9am. Natalie is doing great right now. I will continue to update.

Natalie is in Surgery

Life threw us another curve ball this morning. We got a phone call from the hospital at 5am, our nurse told us Natalie had been having a horrible night and they had been in contact with her doctors. Then, 40 minutes later we got another call...Dr. Forbess said it was go time. Larry and I got dressed and headed up here to the hospital.

I did get to hold her briefly. She went into surgery like any stylish girl should...a bow on her hat.

Dr. Forbess will be re-attempting the shunt and a with changes. I will continue to keep you updated as we get updates from the operating team.

Officially Listed for a Heart Transplant

Natalie has progressively gotten worse over the past few days. She has these episodes where her oxygen level drops to an extremely low number. She normally recovers from them on her own, but it takes her a lot time. Her VSD is closing, which the doctors want. With her VSD closing, she is starting to show a bluish tint to her. I keep telling her blue and purple are not her friends, but she just looks at me and smiles.

The doctors feel our best option right now is to be listed for transplant. She is listed as status 1A, this is the top status. They list children under 6 months of age at this level. She can also get a heart with different blood type then hers, so that is positive. I have no idea how long it will take for her to get a heart. The doctors are prepared to do surgery if needed in the mean time. One day at a time, though.

I am not going to lie, I am terrified. I have to keep telling myself at least we have an option and we are blessed with the amount of support we have. I know God has a plan for her and we will get through this part. We still have a long road with transplant that will continue the rest of her life.

It is also hard to ask you all to pray for a heart, because for a heart to become available, someone has to lose a loved one...a baby. I feel selfish asking God for that. I pray that by miracle everything works out someone and she does not have to have a transplant. I have so many emotions going through my body right now.

A little about the transplant...

The first year after a transplant, a patient is normally on 20 different medications. Now, this does go down dramatically after the first year, but she will always be on medication the rest of her life. We will have to be so careful with her. If she gets a small fever, she will wind up in the hospital were as Carter we just give him Motrin.

The transplant coordinator is setting me up with a family next week who under went a transplant on an infant as well. It will be nice to visit with someone. I am not sure what I am going to ask, because I am just blank right now.

Natalie is a fighter, she has proven that to us over and over again. The other day she pulled her feeding tube out...how I have no idea. Then she was mad, because she did not get fed for 45 minutes until they got it situated again. We try to get her swaddled with her hands down to her side, because if not she will get a hand swinging and grab whatever she can.

I will post more tomorrow about the transplant process, but for now I just wanted to post something since it has been a few days. We had a lot of family and friends in town this weekend, so I did not have time to post.

Thank you all again for your prayers and support

Two Months Old

Natalie is two months! I can't believe how time flies, when you constantly forget what day of the week it is.

Natalie is doing pretty good today. The doctors decided to only feed her via feeding tube. She is starting to show signs of reflux and when she gets mad or upset, her stats drop. We are trying to keep her calm and continue to keep her stable, so feeding her by mouth has become a challenge. She takes the bottles great, it is just afterwards. The feeding tube takes the breastmilk all the way to her tummy so is bypasses her getting reflux, spitting and helps the gas. The downside to the feeding tube is she full most of the time so she sleeps more.

I finished talking to all the numerous people on the transplant team today...wow, I feel like I have just had a major interview almost. They really want you to understand everything and every aspect of the transplant before, during and after so it is a lot to take in all at once.

Natalie will not be listed right away, as we still have the option of surgery. We are still going day to day and will be that way for now on.

Please pray for Natalie to stay stable and continue to grow. I also ask that you pray for my little man, Carter. I can't image what he is going through and what he must think. We have been trying to have some sort of a normal lifestyle for him, but he had a small break down this afternoon. He wanted to go to Carter's House and when we pulled up at the townhouse, he lost it.

No Surgery After All

We had a turn of events last night to say the least. At 1:30 in the morning, one of the Attendings came in and asked me if I had heard the about the "Big Debate". Dr. Forbess could not justify doing surgery on Natalie today, because her stats were awesome all yesterday afternoon. The doctors just finished doing surgery rounds this morning and confirmed, Natalie does not need surgery today! Her stats are were they would be after the shunt, so why do a procedure when she looks so good. Now, this could all change tomorrow. We will be living day by day, but at least it is one more day without surgery!

They are going to go ahead and put a PICC in this morning. A PICC is a more central IV that will last longer than a few days.

Natalie has continued to shock us all. She is a fighter that is foresure! Larry and I will have our hands full as she gets older and Carter better watch out, because she is going to be one tough cookie. She is going to be the girl in the princess dress playing cars with her brother.

Thank you all again for your constant support and prayers for my family. We feel so blessed to have such an incredible support team through all of this.

Surgery in the Morning

Yes, that is right...Natalie is having surgery tomorrow (Tuesday) at 7:30am. Her stats keep dropping and got to an extremely low level Sunday night. The doctors did an echo on her today and the results are showing her VDS(ventricular septal defect) almost closed. This is a hole between the bottom two chambers of her heart; this hole is necessary for her to survive until surgery.

Now, they attempted the BT Shunt (Blalock Taussig Shunt) about three weeks ago and Natalie would not tolerate the shunt, so they removed it. They will be re-attempting the BT Shunt tomorrow. Dr. Forbess seemed very positive about the procedure. There are a few new things different this time:

1. He has been in her heart before so he knows his way round
2. Last time her stats where much higher than now
3. Her VSD was a lot larger

To refresh your memory and so you do not have to look back at the previous blogs...The BT Shunt is a small tube that connects the aorta to the branch pulmonary artery. The shunt allows blood to flow to the lungs.

I will keep everyone updated like last time on the progress of her surgery.

I also met with the transplant team this afternoon. Now, a heart transplant is a last option, this is when we have no other options. Natalie is not officially on the transplant list. We will start the evaluation period, which takes about a week. The evaluation period is when they run a battery of tests, such as MRI, Echo, EKG, blood work, etc. Now she has done some of these already, so we will not have to repeat all of them.

Once the evaluation period is complete, we will then see how this surgery goes and figure out if she has any other options or not. The transplant team is wonderful! Everyone at Children's is great, they really sit down with you and make sure you understand everything, which I am sure is a challenge talking to me sometimes. I have had people explain things to me over and over again (bless them all), but they never seem to mind.

I would like to ask everyone to say a pray tomorrow for Natalie and the team of surgeons.

Natalie's Options as of Today

One of the many doctors on Natalie's team came by Friday morning to visit us and tell us what the plan for now is. Okay so here is the deal...

Natalie is not having any more test run for now. They were going to go ahead with the CT Angiogram when she had the breathing tube, however she removed it the other night. There are a few reasons why they want to wait all based on the fact they are uncertain they can get the picture they want:

1. They would have to re-put the breathing tube back in and sedate her again
2. To take her to Parkland Hospital is a huge ordeal to not be certain of the outcome
3. The uncertainty of being off site even though it is attached to Children's

They are talking with Parkland and other doctors to figure out a solution on how to get a picture of the left coronary artery. The left coronary artery is the problem. They have not been able to see it in the other tests, so they are assuming it is extremely small. This is probably why the BT Shunt did not work the first time. An MRI is normally the best way to get an image of the left coronary artery, but that did not work with Natalie (problem child already). When they are able to get the image they want, then they will either confirm their options, have more options or narrow down the options.

Here are the options for now, they are still trying to come up with other options as well:

Option 1

Tuning up...To go back in with the BT shunt and widen the left coronary artery. Both of these procedures by themselves are extremely risky and to add them together makes it worse. Also, they are uncertain if she would even tolerate it after the experience last time. This is basically the last option for now...if she will not hold off for the other two options.

Option 2

Try to hold her off for the Glenn Shunt, roughly about two months or so. The Glenn Shunt and Fountan (procedure after Glenn, about 3 to 4 years of age) are procedures that to not fix her problem, but by her time before a heart transplant. Now that could be 50 years or 5 years, who knows. There is still a risk she might not tolerate the Glenn, however there is that risk with all these procedures and options.

Option 3

Heart Transplant (this is the back up-back up option)...I am going to talk with the transplant team this afternoon. We are going ahead and putting her on the list. For a baby her size, it roughly takes about 2 months, which is the same length of time as the Glenn waiting period. Now this could be sooner or longer, who knows. The reason for the heart transplant list, is they do not want to get another month down the road and realize this is our only option and then have to wait another few months to get further on list. The risk with a heart transplant is right typing, her not rejecting it, etc. A heart transplant could last 2 years or 10+...we just do not know.

I am a bit overwhelmed right now, but I just feel blessed we still have options at this point. They did not come in and say we are sorry there is nothing we can do, so that is good news.

The doctors and nurses have been great the last few days. They have really set down with me and explained everything a bit more. I actually think I finally understand her condition and the various options, the levels of risk of each and the outcomes.

So for right now, she will be staying in ICU to be monitored and to grow. Yes, I know that is another couple of months in the hospital. We have been joking around that ICU is the concierge floor, because there is one nurse to two patients. I think or should I say I know Natalie is going to be high maintenance, but who can blame her with all she has and will go through.

Natalie has had a few major eposides in the last 24 hours. When I say eposides, I mean her oxygen level dropping to an extremely low level. She now being fed only by her feeding tube. She seems to sometimes get irrated when fed by mouth and when she get irrated her stats drop. They did an echo on her earlier this morning and we are still waiting for the official results. We should know more this afternoon.

For me the hardest part is learning to balance my time between Natalie and Carter. I feel guilty when I am at the hospital and not with Carter and vise versa. I know both of my children are too young to remember any of this. I just sometimes wish I would not remember it either, but I know there is a reason for all of this. I am just going to hold on to the wheel and continue to let God drive.

I know this a lot to take in, so if any does have questions, please feel free to call or email me...I may not pick up right away but I will call back. I can not use my cell phone in ICU, but I can email.

I would like to ask everyone to be praying for the doctors to find a way to get the image they need of her left coronary artery, this will help us proceed better and for Natalie to continue to behave with her stats.

Nights and Days

Miss Natalie once again has her nights and days mixed up. Currently it is 12:30am and she is wide awake and happy. I guess that is what happens when they sedate you for several days. Oh well, we will get back on the right track again eventually.

Thursday was a pretty none eventful day, which was nice. She did get another IV put in. She is also getting to eat again. She is up to 2oz by mouth and they do the rest by feeding tube. She loves to eat, so I am not worried about get her back up to 4oz.

Since Natalie was doing so good on Thursday and not having any procedures, I took the opportunity to hang out with Carter. Carter had a great first week of school. We were blessed with finding a church in Coppell. He was a bit hesitant on the first day, but loved it once he started playing. This is his third school in the last few months. Poor kid has been bounced around way too much this summer, but he has surprisingly done amazing. I am just so happy to have him with me now. I missed the little guy this summer, though he is not so little anymore.

For now, they decide not to do the CT Angiogram and the Transesophegeal Echo. Dr. Forbess is not sure what he will gain from either of those at this time. They would have to re-sedate her and put the breathing tube back in. I think they were going ahead and going to run the tests when she still had the breathing tube, just so they had them for the future. However since she pulled the tube out last night, I think they decided to wait. Now that is my personal opinion, so who really knows.

I should find more out in Rounds later this morning on the plan.

More Tests

Natalie's MRI went good, however they were not able to see the artery they were wanting to see. The plan is do a CT Angiogram and Transesophegeal Echo tomorrow. I am hoping after tomorrow we should have a final plan or at least something to go by. I asked the nurse if there were any other tests possible they could run; after tomorrow we will have had all of them.

I can honestly say Natalie is a fighter. I just witnessed her remove the breathing tube that was taped to her face and down her throat. I never knew a baby could to that, but she tilted her head the perfect way. She wanted that tube out and they were not taking it so, she did it for them...feisty

She really wanted to make sure everyone was on their toes during the evening shift...the nurses did awesome by the way.

She is now stable and sleeping.

Patience

Natalie is not getting off the breathing tube tonight, like we had hoped...she is stable though. Her little eyes opened up a minute ago and looked at me with sadness in them. I wish I could take this all away from her.

They are going to insert a PICC into her arm or leg later tonight. A PICC is an IV that is a more central line that will be used for fluids and medications. Natalie is considered a hard stick; they have trouble with IVs. She has her MRI tomorrow morning sometime as well.

I starting thinking...Natalie will be 8 weeks old on Thursday. She has spent more than half of her life so far either in the hospital or at the hospital for a doctor's visit. As a parent it is hard to watch your child go through something and not be able to do anything about it. I know Natalie's condition is a bit extreme, but I think every parent goes through times in their life when they wish they could take their child's pain way, no matter how big or small it might be...everything is important. The one thing Larry and I have learned is that you never know what someone might be going through, even if they do not show it on the outside.

I have mentioned from time to time, that I totally think God is working on me. I am a patient person or at least I thought I was until all of this. It has been so hard for me to not have a plan. I was so ready for her heart cath today so we could get a plan of action. I had to wait 3 days for the cath and now I am waiting for the actual plan. Okay God, I am getting the point (Your timing, not mine)!

Natalie is already a miracle and we will get through this rough road we are on. Our road may seem difficult, but I know everyone has a road they are on or will be on someday. The bible doesn't say if in times of trial, but when (James 1:2-3)

A friend of mine send me this devotional from Rick Warren the other day and I wanted to share it with everyone.

September 3, 2009

Having Patience in the Midst of Discouragement
by Rick Warren

“You need to persevere so that when you have done the will of God, you will receive what he has promised. For in just a very little while, ‘He who is coming will come and will not delay’” (Hebrews 10:36–37 NIV).

If you’re discouraged because of God’s delay in answering your prayers, understand the delay is not a denial. Just because the answer or the miracle hasn’t come—yet—that doesn’t mean God isn’t going to answer, or that he’s forgotten you, or that he doesn’t care about you. It simply means “not yet!”

Spiritual maturity is knowing the difference between “No” and “Not yet,” between a denial and a delay. The Bible tells us, “He who is coming will come and will not delay” (Hebrews 10:37 NIV).

The delay may be a test of your patience. Anybody can be patient once. And, anybody can be patient twice. And, just about anybody can be patient three times. So God tests you patience over and over and over.

Why? To see how patient you are?

No, he does it to show you how patient you are. So you’ll know what’s inside of you, and you’ll be able to know your level of commitment. God tests you so that you can know he is faithful, even if the answers you seek are delayed.

If you’re discouraged, turn it around by remembering God teaches you patience during delay. Ask him to transform your discouragement into patience.

You may be going through difficult times right now and feel like dropping off the planet. You’re discouraged because the situation you face seems unmanageable, unreasonable, or unfair.

It may seem unbearable and inside you’re basically saying, “God, I can’t take it anymore. I just can’t take it anymore!”

But you can.

You can stay with it longer because God is with you. He’ll enable you to press on. Remember, you are never a failure until you quit.

Don’t quit. Resist discouragement and finish the race God has set before you.

Heart Cath

Natalie had her heart cath today. She did great during the actual procedure, however after the procedure was over her stats dropped again. She is back on a breathing tube and is stable for the most part. The plan is to slowly wean her off the breathing tube tonight. She is also getting blood, because her hemoglobin's are low.

Dr. Zellers got the information he needed from the heart cath, which is great news. However, they are still not sure on the course of action we will take. Natalie is schedule for an MRI tonight or tomorrow. Dr. Forbess, the surgeon wants all the information he can have to make the best plan for Natalie.

Natalie will be having another heart surgery probably this week. The doctors have surgery conference tomorrow (this is done once a week) and she is on the list to be discussed.

We might not know anything until after this surgery conference, so tomorrow night or possibly Thursday morning. I will let everyone know when we find something out.

Thank you all for your prayers today...

Back in ICU

Natalie got moved back to ICU today. Her oxygen levels keep lowering. The doctors have moved up her heart cath to tomorrow. We will hopefully hear back tomorrow night on the heart cath and have a plan of action, but it might not be until Wednesday.

Please say a little prayer for her tomorrow, that everything goes well and the doctors get the information they need.

Oxygen Levels Down

Natalie's oxygen levels have lowered more, so they upped her oxygen. She is scheduled for a heart cath on Wednesday.

Wild Few Days

Well, we got moved into our new townhouse yesterday. Three floors, with a room on every floor, I guess that is why my legs are sore today (sad, I know). Carter is getting the hang of it as well. He went face first down a few steps yesterday and today, but we only have one black eye so we are still good. He has now learned how to watch where he is going and hold onto the railing. You have to love a two year old!

Sweet Natalie...she is back on oxygen. When she sleeps soundly (which every parent desires and wants), her oxygen drops to where they doctors and nurses are not comfortable. Since this is happening to her, they are scheduling a heart cath next week. A heart cath is a small procedure where the doctor make a small incision and insert a camera with dye to measure and see all of her heart. We should get a better understanding of what is going on with her. On that note, the doctors will not be discharging us from the hospital until they figure out what is going on.

We hope everyone has a safe and wonderful Labor Day Weekend!

Busy Night

Natalie had a busy night last night. Her oxygen levels were all over the place and dropped lower then what they would like at one point, so she was put back on oxygen. She then had blood work done, which they had to redo and had an EKG. She did get her IV removed at midnight, because the nurse came in to flush it and realized it was bad...Natalie lucked out. She likes to stick her fingers in her mouth and since the IV tube was wrapped to them, she was trying to suck on the tube.

She is doing wonderful right now and is sound asleep. They took her back off oxygen, because her levels were stabilize again. We also got to lower her calcium supplement intake, because her labs came back good for that. I am learning to give medicine like a pro.

New Room

Natalie is out of ICU! We finally got moved to the 8th floor, which is the cardiac floor. We will be here for a few days. They will basically continue monitoring her and make sure she is eating good before we can leave.

I had a great opportunity today to help demonstrate the "Virtual Crib" to some donors here at Children's. The hospital is trying to improve the virtual crib and have more of them for every room in the ICU. If you do not remember, the virtual crib is where they set a web camera in Natalie's room and I had a web camera at Baylor. I was able to see Natalie and ask questions. When I used the virtual crib you could not talk back and forth to one another, only type. The hospital is trying to get it where you can actually talk back and forth, so the mother can get a better update on what is happening. I can't say enough about how amazing the virtual crib was and comforting as a mother separated from her baby.