Scottish Rite

Today was Natalie's appointment at Scottish Rite. Dr. Richards checked the progress of her feet. I am not sure if you remember from my past blogs, but when Natalie was born they thought she might have clubfoot. She did not, but they wanted to monitor her feet. Her feet are looking better; we still have some stretching to do, but that is nothing.

We also had an xray done to look at her spine. Natalie definitely has scoliosis. She is actually missing two ribs on her left side and has a 28 degree curve of her spine right now laying down. They are going to monitor her twice a year for now as she grows to see what we need to do. Several things could happen:

1. The curve in her spine could stay the same

2. The curve could get much worse, which could be fixed by a brace

3. The curve could get really bad and need a spinal fusion (surgery where they place rods in her spine)

We also had an ultra sound on her kidneys done. They said that sometimes with scoliosis comes kidney problems. We should find out the results next week.

Again, as I sit in these clinics at Scottish Rite and at Children's, I realized that our situation could be much worse and I am so blessed. I know whatever the future holds for us we can handle, because God will lead us day by day.

Natalie has her 6 month well check up this next week.

Post Surgical Appointment

Natalie had her post surgical appointment today. She is now back to the weight she was prior to surgery...12.1lbs. Her oxygen stats are better, her chest xray was clear and her blood work came back great!

She is truly doing amazing! We have an appointment tomorrow at Scottish Rite for a follow up and in a few weeks go see Dr. Zellers, her pediatric cardiologist.

Dinosaurs

Carter, Hunter Patterson and T-Rex

Sorry, I have not blogged lately. The weekend was great, but busy. We had some friends come in from Texarkana that have a little boy around Carter's age. We took the boys to, The Heard outside of Allen, Texas. They have a dinosaur exhibit going on right now. Carter was not too sure at first, but ended up roaring at them before we left.

Natalie is doing awesome! She is eating better everyday and is just such a happy baby. She has her post surgery appointment tomorrow.

Discharged

We got discharged today! Natalie is so happy. She has been eating, sleeping and just enjoying not getting woken up every 4 hours for vitals or respiratory. We have to stay in Dallas for now, but if all goes well, we can move back home before to long.

I picked Carter up from school today and then we both went to get Natalie. He has been so concerned about her, I thought I would be good for him to be apart of it. He was so cute with her.

Thank you again for all your prayers and support. Larry and I feel so blessed with all the amount of support everyone has given us.

I would like to ask all of my prayer warriors out there a favor, please. There a sweet little family from Amarillo, The Williams Family (David, Bonnie and Emery). I do not know them personally, but I went to high school with David's sister. Their little girl, Emery (2 months old) got diagnosed with neuroblastoma. She had a tumor about 2 inches in length extending from behind her lungs to her spinal canal. She has been in Houston at Texas Children's Hospital undergoing chemotherapy and surgeries. They got news yesterday that the tumor had stopped growing, but was not getting smaller like they wanted. Please pray for Emery, that her tumors start getting smaller and for her strength through all of this. Please pray for Bonnie and David. I know Natalie and Emery's conditions are totally different, but I feel their pain watching their child in pain not knowing what to expect each day. Please pray for strength and comfort for them.

Another Good Night

Natalie did great last night! If all goes well today, we could be getting discharged tomorrow...what a blessing!

6 Months Old

Natalie turned six months old on Saturday! Can you believe it? Time has flown by for us down here in Dallas.

She is doing amazing! We actually got her oxygen off yesterday. Today, her IV went bad, so they removed it and decided to not re-stick her. I am not sure where they would have stuck her, she has been stuck everywhere it seems. Her chest xray still looked the same, but everyone seems pretty excited and positive about how she is doing.

We are still hoping to maybe get discharged this week, but we will see. Please pray for a clear xray tomorrow.

Carter came back to Dallas yesterday after being in Texarkana with Larry's parents. He was so excited to see his Daddy. I picked him up from school today and we played outside at the park and had a great time.

Chest XRay

Natalie's chest xray is still not where they want it, so we will not be getting off oxygen again today. Natalie still has a little fluid in her lungs, which is what we are trying to get rid of now. I think if that clears up, we should be good to go.

Please pray for the fluid to go away and for her oxygen stats to continue to get better.

Nothing New

Nothing new happened today. Natalie is doing better, but they did not lower her oxygen any. I was hoping to be off it today, but I can wait until tomorrow.

So Much Happier

Natalie had a great night! I think we have managed to get her pain under control and the pressures from the surgery have stabilized, so no more headache. She is so happy and even laughed a little.

Her oxygen is more stabilized, so they are going to start weaning her oxygen down and hopefully we can get her completely off oxygen today or tomorrow.

I think we are finally on the right path, but we still have a few more days to go. Thank you all for your constant prayers and support.

Hard Night

Natalie had a tough night last night. Her oxygen was all over the place and she seemed to be in a lot of pain. They started giving her morphine, which helped. She ended up having two sets of lab work done and two xrays last night, as well.

They have schedule her pain medication a bit better and we are trying something new today. They also think she might have a little bit of fluid in her lungs so we will continue the lasik. She is also scheduled for another echo today.

Please pray for a peaceful day...some need rest and for her stats to stabilize. Also, that she can start eating again, which they stopped last night.

Tubes and Lines are Out

Our Little Angel - Day After Surgery

Natalie got her chest tubes and her art lines out this morning. She got to start eating yesterday, which made her so much happier. She sucked down 5 1/2 ounces like it was nothing. I think she would have eaten more, but I did not want her to throw up, so we stopped.

We should get move to the 8th floor (Cardiac) today, if they have a bed available. We will spend a few days there and hopefully get discharged sometime next week. On this floor, she will continue to be monitored and we will work on her feedings.

Overall Natalie is doing awesome! We are so blessed and can't tell you all enough, thank you for the prayers and support.

Natalie - Update

Natalie did okay last night. She slept pretty good, but woke up around 2am in pain or discomfort. Our nurse quickly gave her something and it calmed her down.

Dr. Forbess just stopped by and we are not getting anything removed like we had hoped and thought today, but that is okay. We will spend one more day in ICU and then go to the floor. We are hoping to maybe feed her later, which should make her a little happier. For right now, we are just trying to let her sleep.

Breathing Tube is Out

Natalie got her breathing tube out earlier tonight. She is pretty uncomfortable, so they are giving her pain meds. It is very common after the Glenn to have a horrible headach due to the blood and oxygen flow. She wil be sleeping and then all of a sudden cying out in a groan...it is aweful. The first several hours after surgery is always rough, trying to get them all calm and stable.

They are going to continue not to feed her tonight if she will stay calm, so tomorrow morning we can pull a few more lines out. This is awesome and so much quicker than expected. There is slight talk that she might even move to the floor tomorrow, that would be huge. If she does not go tomorrow, then Thursday more than likely.

Please pray for a restful night if possible. She finally took her pacifier so that is good. Also. I wanted to thank you again for the prayers and support today for Natalie. Larry and I feel so blessed by the amount of support we have.

They are Done

We just spoke with Dr. Forbess. He said she did amazing! They are cleaning her up and we will be able to see her briefly as they bring her into ICU. We then have to wait an hour before we go back to ICU, while they get her settled in.

He thinks she will get off the breathing tube tonight, but we will have to see how she wakes up. He also said we might be able to hold off on the next surgery until she if 4 or 5, but that is in the future.

Thank you all for the prayers today! God is good!

I will update later tonight after I get in to see her and things slow down a bit.

Off Bypass

Natalie is off bypass. They have the superior vena cavas in place and the BT shunt clamped off. They are putting her lines in now. She is doing good.

Another Update

They are still doing the repair but Natalie is doing good

Bypass

Natalie is currently on bypass, but she is doing good

Second Update

We got a call a while back, sorry I did not update, I have been having computer issues at the hospital.

Anyway, Natalie is doing great. They have not made it to the heart yet.

First Update

I just got a call from the OR. Natalie is doing great. She had no problem going to sleep. Dr. Forbess has made his incision.

Surgery

Natalie had a peaceful night sleep last night.

They took her back for surgery around 8am. The gave her a little something to take the edge off, they said. This way when we left her, it would be easier. She however feel right to sleep and did not even know when I left her. I always hate watching her go through those double doors, but I know she will be okay.

The first hour and half is getting her ready, such as ivs. I will update you when we get our first update. Thank you for all the prayers and support.

Surgery Tomorrow

Since Natalie got discharged from the hospital after her heart cath, we have been trying to get organized and things in place before her surgery tomorrow. I made Larry's dad in Sulphur Springs yesterday to drop Carter off. He is going to stay with them for the week. Carter was so excited about getting to stay with Gran and Papa. He just loves them so much.

I really thought Carter would take a nap in the car on our way to meet Papa, but I was way wrong. Carter talked the entire time about Gran and Papa and what he wanted to do this week. He is so funny!

We spent the morning at Children's getting Natalie all ready for her 3rd surgery tomorrow. She will be having a Bidirectional glenn shunt done. They will be connecting the superior vena cava to the pulmonary artery. Natalie has two superior vena cavas, so the will connect both them.

The surgery should last around 5 hours. She will be placed on a hear- lung bypass machine for a time period. Dr. Forbess does not think he will have to stop her heart, but they will lower the temperature of it.

The bidirectional glenn shunt is where the blue blood from the head, neck and upper body is directed to the lung (pulmonary) artery through the superior vena cava. This allows the blood to flow into the lungs for oxygen. The bidirectional glenn procedure reduces the work load of the heart. They will also clamp off or remove the BT Shunt, she currently has in place.

Every case is different but we are hoping to only be in ICU until Thursday and then be on the 8th floor (Cardiac) for 5 to 7 days. Everything depends on Miss Natalie. I like to joke that she is the CEO of our family. She rules the roost!

I have a few small prayer requests for tonight and tomorrow. Please pray for Natalie tonight to sleep peacefully. I ask they you pray for her and the team of surgeons tomorrow. I have one last prayer request...please pray for Larry's health. He woke up Sunday morning with the stomach bug. He was suppose to fly down her tonight, but we both think it is best for him to wait until tomorrow when he feels 100% and is stronger. I know it must so hard for him not to be here with Natalie the day before and the morning of her surgery.

I will keep everyone updated like I have in the passed. She is first case, so she will go at 7:30am. The first hour to hour and half is getting her the ivs and preparations needed.

Thank you all for your support, we love and miss you all.

Surgery Date

Natalie's surgery will be on the 12th. She and I will check into the hospital the night before to start an iv, so she can begin getting the fluids she needs.

I will post more on the surgery later. I am waiting on our discharge papers now, so we can head home from the heart cath. Once I get those, we will stop by Dr. Forbess's office downstairs and get more information.

Everyone be safe driving wherever you are, because this artic blast that blown through is miserable.

Heart Cath

Natalie's heart cath went great today! Dr. Zellers said they got all the pictures and information they needed. Natalie does have to stay in the hospital tonight, it is pretty routine for infants to stay overnight after a heart cath. Her stats look great and she is eating pretty good.

We should know tomorrow a surgery date for the Glenn. I will keep you posted.

Thanks for all the thoughts and prayers today, we appreciate the support.

Pre-Catheterization

Natalie had her pre-catheterization visit this morning. She weighs 12lbs 1oz! She also had an EKG and an XRay all to get ready for her heart cath tomorrow.

Natalie will be asleep during the procedure. The cardiologist, Dr. Zellers and his team will inject some numbing medication into the area where the catheter will be inserted, probably her groin area. After the area is numb, small plastic tubes (sheaths), which are about the size of a piece of spaghetti, are inserted into the large blood vessels. Through these sheaths, long plastic tubes (catheters) are guided into the heart.

Once the catheters are in place, small amounts of blood are taken through the catheters from the various chambers and blood vessels in the heart to determine the amount of oxygen in the blood. The blood pressure in the heart is also measured at the same time. Next, a special dye (contrast) is injected through the catheters, into the chambers and blood vessels of the heart. The dye shows up as bright white shadow on the x-ray film, and allows the doctor to see the shape of the structures and the flow of the blood through the heart and lungs.

All of this will help the surgeon determine the best road map of her heart for the Glenn Shunt. We should have a date for the next surgery tomorrow.

Please pray for everything to go smoothly tomorrow and for the doctors to get all the information they need for the Glenn Shunt.

Exersaucer

We put Natalie in the exersaucer last night. We had to prop her up with blankets, she is still so tiny. She was not so sure about it at first, but she loves it now.

Go Hogs

We had a great weekend watching football with friends and family.