Friday, February 27

Today Tanner got to see Taylor for the first time in 7 weeks. My sister Karen brought Tanner and her son Jaden to see us. Getting two three olds out of the car and into the building was a challenge. They both were karate chopping each other and trying to race to see who would be first to the door.  Just like boys... :-->   Tanner was so adorable when he saw her......The first thing he said was, "can I rub her gently?"  He rubbed her beautiful head and then asked if he could hold "baby Taylor."  He only held her for about two minutes, but he showered her with hugs and kisses!  Then, we went on a walk to the cafeteria WITH Taylor!  That's right, I said WITH Taylor.  She is not hooked up to heart monitors in rehab, so we can walk her around the room and take her for a stroll when ever we want!  We loaded Taylor in the wagon and away we went to get some lunch.  Boy, that was a lot of fun!  Tanner and Jaden each had to have one hand on the wagon and they wanted to run with her.  Both of the boys ran over each other's foot in the process.  It's a little preview to what "home" life will be like when she's ready to go home....kind of scary........So far rehab has been good.   She has PT in about an hour.  She gets a little cranky when anyone tries to move her around.  I guess it's going to take a while to figure out how to "relax" her muscles again.  Well, let me run.  Dick and Donna should be here real soon!  Love ya'll! 

  

Tammy

Thursday, February 26

We finally made it!!! We arrived at Pitt Memorial Hospital around 12:30pm. Taylor is resting comfortably, probably dreaming of her brothers. All of the staff in the Rehab facility have been outstanding. They are so sweet and so encouraging. They have Taylor on the schedule to start rehab at 8:30 in the morning. Occupation, Speech, and Physical Therapy will access her to see what her goals should be and we will have our first "care conference" on Monday. In our conference, they will discuss where Taylor is now and where they think she should be. They will also give us a projected departure date. Tanner has been talking a lot about Taylor lately. He asks when she's coming home so he can help hold her. How sweet! Tate is still somewhat clueless. He does however, realize when his daddy is out of the house. Yesterday when I was home, he walked around the house yelling and looking for daddy. It was really cute. I'm sure they are just as ready for us to be home as a family again just as much as Jeff and I are. Tonight Jeff is taking Tanner and Tate to support his girls high school basketball team. They are in the 2nd round of the state playoffs. He is mighty brave to be taking both of them! I told him to make sure he has lolly pops in his pocket for Tate!!! Well, I better run...the Princess wants to be picked up! Love you all! Tammy

God Bless

~

Tuesday, February 24

Well... we have another delay and Taylor did not go back to Pitt Memorial this morning. It appears that Taylor has a second infection developing in her Broviac Catheter tube and they will need to remove it after all. Pitt Memorial won’t accept her with an IV, so they will have to finish the antibiotic cycle at the very least. Below is an email Tammy sent late this afternoon with more details.

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So this is the deal, the doctors here at Duke have been doing blood cultures daily since Taylor's episode last Thursday. They determined that she had a bacterial (staff infection) in her Broviac. Since then, a second infection appeared on a culture they did on the 20th. She has not tested positive for anything since the 20th, but they will be giving her 10 days worth of antibiotics to kill any infection. This morning the doctors came in and said Taylor will need to have the Broviac taken out. They put in an IV in her left foot around 2pm and are trying to schedule her to have the Broviac taken out this evening. If they don't get to her today, they are hoping to get it taken care of tomorrow. As for Greenville... when we will be going is still up in the air. They just said they should be able to get us there this week. Everything happens for a reason, right! Taylor has had a great day with Physical and Occupational Therapy. During PT, she was very alert and even pulled her head up when she was on her tummy exercising. She was also able to suck again a few times during OT. The therapist has been trying to seduce her with apple sauce... She took a little bit. Later, with me I spoon fed her a little bit of apple sauce. I didn't give her much because the therapist said to try this twice a day, only giving 5 to 6 tiny bites at a time. However, she did very well. She licked it and kind of gave me a look like, "what are you putting in my mouth?" She digested all of it and never once spit it out. I just kept smiling and praising her for the outstanding job she was doing... Little by little, Taylor is amazing us all!... I spoke to a mother of 3, from New Bern, North Carolina last night on the phone. Like Jeff and I, they have two boys and a girl. Her daughter was diagnosed with Cardiomyopathy when she was 13 months old. It has been 3 years now and she is completely healed. She is a walking miracle and a testament to what God can do. It was good to talk to someone who has been in my shoes and had some inspiring stories of her little girl. It gave me a lot of hope to hear her story. God is good and He's not done with Taylor... sending my love!

Tammy
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God Bless
~

Monday, February 23

Good News! The insurance company accepted Taylor’s rehab! Greenville is aware of the infection with the Broviac and has agreed to treat that as well and they are ready for her. They will be leaving Duke at 9:30 in the morning (Tuesday). We thank the Lord for this blessing!! The RPN at Duke told them she was thankful that Jeff and Tammy pushed the issue. She said sometimes parents don’t know to be so assertive. I’m confident that Taylor will show that same determination in rehab!

God Bless
~

Sunday, February 22

Just a quick update for tonight. They have determined what caused Taylor’s episode on Thursday night. Apparently a bacteria issue with the Broviac Catheter was responsible for the fever and heart rate issues. This left the doctors with a couple options; either remove the Broviac or try to treat the infection. As of tonight, they are going to try and treat the infection so they can still take advantage of the Broviac Catheter.

God Bless
~

Friday, February 20

I often compile information I receive from family members or Jeff and Tammy directly to provide an update. But I really can't say it any better than Tammy's email today.

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Great news... I just saved a bunch of money on my car insurance by switching to GEICO... Just kidding...You have to make yourself laugh here, or you go nuts in this tiny room....... Anyways, Taylor had a better night last night. The respiratory therapist came in twice to suction her and that really seem to help her breath better. Other than that, her vitals remained good and she slept most of the night. All of her labs have come back normal, so they never really determined the cause of her fever. The respiratory and physical therapist came in this morning to work with her. PT gave her a chair to sit in that kind of looks like a car seat. It helps keep everything in midline. She is sleeping in it right now. OT tried to stimulate her mouth so she would try and get back that sucking motion. She was pleasantly surprised when Taylor latched on about 3 times. We were all very happy! After they left, I gave Taylor a little break and then I put my pinkie finger in her mouth like I have done so many times in the past and tried to get her to suck. Taylor latched right on and sucked 8 straight times. I stood there and cried, Thanking God for that moment. It didn't take Taylor long to get irritated with me, so I took my finger out of her mouth and she fell right to sleep. She never ceases to amaze me with her strength. I think it is very important that we continue to stay positive and look at her successes. She has came so far and is still holding her own... It's easy to let the negative consume you, but when you look at Taylor and the peace she has on her face, you just know everything is going to work out. I know we all wish Taylor would instantly get better over night and we had all the answers to the future, but realistically Taylor will let us know in time. She's my little angel right here on earth and I thank God for her every day! I love you guys!

Tammy
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And some pics...

God Bless

~

Thursday, February 19

Taylor had a scary night last night. At 3am, the nurse paged the doctor because of how high Taylor's heart rate was. It was in the 190's. The doctor came in and examined her for about 10 minutes and then said to page her back if she didn't get any better. About ten minutes later, her heart rate jumped to 215 and the room got real crazy! About 10 different doctors and nurses piled into the room trying to figure out what was going on with her. They did an EKG and gave her extra oxygen. Her temperature had spiked to 102, so they gave her Tylenol and put a cold rag on her head. After about an hour, her temp went down and her heart rate went back down to the 170’s, which is still high. She also has a lot of gunk in her throat, so her breathing is more labored and she sounds really horse...Poor baby! She finally went back to sleep about 6:30 this morning. It made for a long night with little sleep for both Taylor and Tammy.

The silver lining of the day… Taylor has officially been accepted to Pitt Memorial on a two-week trial basis. Now the only obstacle that is left is the insurance company agreeing to cover it. They should find out tomorrow.

It’s not clear how much the episode last night will delay rehab or not, but we are all so confident that if Taylor is allowed to go to rehab she will once again overcome all odds. So continue join us in Prayer, I know He will provide.

God Bless!

~

Wednesday, February 18

Talking to Jeff this afternoon he said the day could best be described as frustrating. Yesterday they made a decision on Taylor’s surgery. None of the Duke University Hospital Doctors are comfortable with recommending the surgery in the condition that Taylor is in, so they have elected to not do the surgery. Unfortunately, the surgery was a requirement for Taylor to get admitted into the Pitt Memorial Rehab facility.

This basically left two options. 1) Duke University Hospital is petitioning Pitt Memorial to accept Taylor into the rehab facility even though she still has the NG tube. 2) Jeff and Tammy would take Taylor home and people would come to the house for the rehabilitation. Both options will require that Jeff and Tammy learn how to give Taylor her meds through the NG tube.

Unfortunately, Pitt Memorial denied the original petition to admit Taylor. And it appears none of the professionals in the area are willing to come to the house to work on a 4-month old baby with cardiomyopathy. Which more or less left them with no options.

Jeff talked to the Doctor at Duke again to try and get some resolution. It’s got to feel pretty helpless to have to plead someone to simply help your daughter. It doesn’t seem very fair that you have to fight the system to get the care that your baby needs.

The doctor talked to Pitt Memorial again and they have agreed to accept Taylor on a two-week trial period. If she doesn’t make progress after two weeks they will be forced to release her. It isn’t a done deal yet, one more doctor has to sign off on this, and they are checking with the insurance company to see if they will cover it. Please pray that Taylor is accepted, without rehab her difficult road will be even harder to climb. She really has so many needs. I trust the Lord has a plan for Taylor and that she will get the help that she needs. Duke is recommending at least 6 weeks of rehab for her. Jeff is confident that if she is accepted she will show some improvement.

They did another echocardiogram today. Taylor’s heart has dropped from operating at 36% down to 31%. I pray for Christ to embrace Jeff and Tammy and give them strength and hope and calm their fears. I lift Taylor to the Lord, fulfill her needs, and heal her heart. Surround her with the Holy Spirit and bring her comfort as well. I know there is a bigger plan for Taylor and I trust in His plan.

I was searching the web, looking for inspiration. Children have always held a special spot with Jesus. I believe there is an old hymn that begins like this:

I think when I read that sweet story of old
When Jesus dwelt here among men,
And called little children like lambs to His fold,
I should like to have been with them then.

I wish that His hands had been put on my head,
And that I had been placed on His knee,
And that I might have seen His kind look when He said,
“Let the little ones come unto me.”

God Bless
~

Saturday, February 14

It’s been a few days since I have had a chance to post an update, but I think it’s fitting that on a day symbolized by a heart, I found myself waking this morning with Taylor weighing heavily on my own.

The last few days Taylor has been very comfortable. When she has been awake, her fussy spells have been less and less. Today she slept a lot and was pretty restful and when she was awake she seemed to be more relaxed.

Tammy’s folks are going to stay with Taylor on Sunday, so Jeff and Tammy can both spend time with the boys together. The boys haven’t had much time with both of them together the past month so this will be a nice treat for them. The family has been so blessed to have family and friends around to help out when needed. We thank the Lord for these blessings.

There has been some medical related news over the past couple of days to share. First, we found out the results from the vision and hearing tests that were performed. According to the tests, Taylor’s right ear is operating normally, but her left ear was abnormal. And unfortunately, both eyes came back as functioning abnormal. So what does this mean? From what I understand, the brain is receiving the information about the test (i.e. flashing light in her eyes), but is currently not responding back. At this point they really can’t say how significant this will be, so the diagnoses remains that it is abnormal and only time will tell us how significant it really is.

They also performed a barium x-ray on Taylor. The x-rays show that Taylor’s liver is also enlarged. A barium x-ray is a radiographic (x-ray) examination of the gastrointestinal tract. The use of barium with standard x-rays contributes to the visibility of various characteristics of the GI tract. Barium is a dry, white, chalky, metallic powder that is mixed with water to make barium liquid. Barium is an x-ray absorber and appears white on x-ray film. When instilled into the GI tract, barium coats the inside wall of the esophagus, stomach, large intestine, and/or small intestine so that the inside wall lining, size, shape, contour, and patency (openness) are visible on x-ray. This process shows differences that might not be seen on standard x-rays.


Perhaps the biggest thing to communicate is around the Gastrointestinal Tube surgery that we have been waiting to proceed with. The Rehabilitation unit back at Pitt County Memorial Hospital in Greenville will not accept Taylor until she has this surgery.

Jeff and Tammy have a decision to make and I know it is weighing heavy on their hearts.

Postponing the surgery any longer is costing critical time for Taylor’s rehabilitation. However, the GI doctor’s opinion is that Taylor’s heart is not strong enough for the surgery. However, the Cardiologists are telling them that the improvements in her heart will be measured in months, not weeks and they can’t afford to wait months for Taylor to start rehab. They are waiting to talk to the anesthesiologist to see what his opinion is, but if they do move forward with the surgery they will have the best cardiologist experts in the room just in case.

As good as some days seem it is apparent that Taylor still has a lot of challenges to overcome. I pray that Jeff and Tammy continue to lift Taylor up to the Lord. Place the burden in their hearts in the Lords hands. And on a day that symbolizes love, I pray that Taylor not only feels the love that Jeff, Tammy, and all our family and friends have for her, but that she also feels the love of Christ in her heart.

“Cast your burden upon the LORD and He will sustain you; He will never allow the righteous to be shaken.”
Psalm 55:22

Pass the Love… Here is a Taylor in her Valentine outfit, she is such a beautiful child.

God Bless!
~

Wed, Feb 11

Since Sunday, they have been concerned that Taylor has been congested, so they did a chest x-ray on Monday night. The x-ray did show some fluid in her lungs. They are also concerned that her breath rate is high; sometimes she is taking 90 to 100 breaths a minute. So they will continue to closely monitor both those issues.

They did some vision and hearing tests on Taylor on Tuesday. They will have to send the results to be reviewed by the experts, but the unofficial opinion of the person doing the test said that the right ear is hearing better than the left ear. She wouldn’t venture a guess on how the vision test went, so we will patiently wait for those results.

On the bright side, they believe they have the correct mix of medicines to control Taylor’s seizures. They were able to take her off the EEG on Tuesday.

Below are some recent pics that Tammy sent this morning.

God Bless!
-

Monday, Feb 9

Good evening everyone. Today the Neurologist stopped in. She has reviewed all of the previous MRI’s that Pitt Memorial Hospital performed. It’s always good to get a second opinion. According to the Duke University Hospital Neurologist, the MRI’s all looked pretty similar. They show that the damage isn’t really isolated to the lobes discussed earlier; it is more global, which would be consistent with lack of oxygen. The good news though is that in her opinion, the tests only show mild damage.

They are describing the seizures that Taylor is having as Infantile Spasms. Not to say this is exactly what is happening with Taylor, but according to what I can find on the web, individual spasms typically last for 1 to 5 seconds and occur in clusters, ranging from 2 to 100 spasms at a time. The Neurologist described the condition as the brain is trying to send neurons to perform different functions. When the neurons run into a damaged part of the brain it tries to find another route, and this is when the seizures occur. She did say that it is possible that Taylor can grow out of this on her own. With so many of the Neuro issues we may just have to wait and see. Another silver lining is that infants brains have are better suited to finding alternative neuron routes. Until then, they will continue to aggressively pursue a way to control the seizures with medicine. To help determine the effectiveness they will continue to use an EEG over prolonged periods to monitor the response to the medicines.

I can’t help but feel the Lord is once again at work. I’m confident that Pitt Memorial would not have diagnosed these seizures as well, but I just feel Taylor is right where she needs to be at the moment. I’ve said it before; we have so much to be thankful for. And that includes all the friends, family, and people we have never meant that have come together to Pray for Taylor’s recovery and who’s kind thoughts have helped to lift everyone’s spirits. A big thank you to all of you.

Sunday, February 8

We got some more information around the EEG they performed all last night. It is showing that she is still having seizure activity, especially when she is sleeping. When she is a sleep the episodes are happening several times an hour. They decided to add another medication this morning in addition to the Phenobarbital they have been using. They are aggressively trying to get the seizures under control, but it sounds like it may be trial and error while they figure out the right balance of medicines. Taylor will be hooked up to the EEG through the night again and hopefully they will be closer to a solution tomorrow.

Talking to Jeff's dad, he said Taylor was fairly relaxed today and other than the electrodes and tubes, she looks like an angel when she is a sleep. He said they sang her songs, rubbed her hair, cheeks, arms, and legs most of the day and she continues to have her physical therapy.

Donna (Jeff's Mom) stayed with Taylor last night and was exhausted today. That's one night! Tammy has been staying with Taylor 4 nights a week and Jeff has been staying with her 3 nights a week, so it really shows the strength and resolve the Lord has blessed the family with.

Below is a little video clip of Taylor chilling out. My heart continues to go out to her, and we will all continue to put our faith in God and know that she is in His arms.

God Bless.
-

Saturday, February 7

A recap of the past couple of days… Yesterday they kept Taylor hooked up to the EEG all day to try and determine if she was indeed still having seizures. And the tests confirmed that she was still having seizures. They gave her a load dose of medicines to help this and she slept a good part of the day today. This afternoon they hooked her up to the EEG again and will leave her on it until tomorrow morning for further monitoring.

Jeff’s parents are both in town for the weekend and have been staying in a hotel close to the hospital with the boys. This has allowed Jeff and Tammy to not travel as much the past couple of days as well. Jeff’s mom is spending the night at the hospital with Taylor tonight so Jeff and Tammy can be with the boys for an evening. I think it has been a while since all four have been able to spend much time together. I look forward to the day when all 5 of them can be back home!

Unfortunately they have not been able to have the surgery on Taylor yet. They need to make sure she is strong enough to get through the surgery. Jeff and Tammy are pleased with the hospital staff and they have faith that Taylor is in good hands and the Lord continue to provide for her needs.

God Bless.

Wednesday, February 4

Well, what’s the saying... Two steps forward, one step back? The echocardiogram they performed at the Duke University Hospital is showing that Taylor’s heart is now functioning around 35%. So her surgery has been postponed for now while they observe her at Duke and determine if she is strong enough to handle surgery. As we all know, it’s going to be a long road to recovery and we continue to pray for patience, endurance, and love. We have so much to be thankful for and we continue to have faith that God will heal her heart, mind, and body. God Bless.

"And we know that all things work together for good to them that love God, to them who are the called according to his purpose."

--Romans 8:28

Tuesday, Feb 3

Good evening. They were satisfied with Taylor’s progress with her feedings so they moved her to the Duke University Hospital last night. They transported her by ambulance. They also transported another baby even younger than Taylor in the same ambulance. A reminder that other families are going through trials of their own. My heart and Prayers go out to them as well. Tammy followed the ambulance in her car.

They ran a GI test today to make sure that the fluids were traveling correctly to the her stomach. This consisted of putting Taylor on a flat board, secured to the board by blankets. Her hands were raised up by her head. They then rotated the board so Taylor was on her side and they took several x-rays, and everything looked good.

The Cardiologist at Duke is going to do another echocardiogram tomorrow so he can see things for himself. It will nice to get a second opinion on things. We did find out some good news that we hadn’t heard before. Apparently the very first echocardiogram showed Taylor’s heart was functioning at 10%. The latest test showed that her heart is now functioning at 40%. Although the size has not gone down in size, she has definitely made progress. We have so much to thank the Lord for.

At this point, we are hoping they can do the surgery on Thursday, but it is not scheduled yet. Once they do the surgery she will have to stay at the Duke Hospital for 5-7 days before she will be moved back to Greenville.

Tammy came home tonight to spend some time with the boys and Jeff is going to stay at the hospital tonight and they will switch again tomorrow. Basically Jeff will continue to be with Taylor on Wednesday, Saturday, and Sunday. And Tammy will be with her the other days. This will allow them to both be able to spend time with the boys as well. It’s a tough schedule but they are making the most of it. Thankfully the Lord is blessing them with strength.

Overall, I continue to believe Taylor is a true testament of the Lord’s love and the power of Prayer. Thank you to all of you! God Bless!

Monday, Feb 2

I hope everyone had a good weekend. Not a whole lot to report, but here is a quick update.

Jeff spent the weekend at the hospital with Taylor and Tammy was able to come home and see the boys. Now that Taylor is in Pediatrics either Jeff or Tammy will be staying in the room with her. She has slept through the night the past 3 nights, so that will allow for Jeff and Tammy to be able to get some sleep too.

They performed another echocardiogram this morning and the doctor said it looks like her heart is pumping blood much harder, which is great news. He still needed to take measurements to determine if the size has decreased at all.

Taylor reached her target goal yesterday of being able to take her feeding for 30 minutes straight. Duke will only take her if she can do this for 2 days in a row. So if she can continue to do it today she will be cleared to go to Duke University Hospital for the gastrointestinal tube. So we still don’t know when that surgery will be scheduled.

That’s all I have for now. Everyone sure appreciates all the kind thoughts and prayers that Taylor and family continue to receive. God Bless.