The last day of 2007 is Ella’s fourth day of having elevated temperatures. We hope the New Year will break this cycle.

She spiked a fever last night of 38.5c (101.3F) so they’ve started her on a round of antibiotics just in case of infection, and some Tylenol to help make her more comfortable.

At this point, no one knows for sure what is causing Ella’s elevated temp. They checked for an ear infection, ruled out teething at this point, and all other test have come back negative at this time for a bacterial infection. They haven’t totally ruled out an infection from her central line, but so far nothing is showing up in her lab results (the blood cultures are due tomorrow).

The central line is an area of concern, because any foreign object that has an opening into the body has a high risk of infection. This line is used primarily for Ella’s diuretics which has been key for keeping her lungs functioning properly. This line has also been giving the nurses problems in the last few days because it hasn’t been flushing very well. We hope this line doesn’t close off because it will pose some real challenges in getting Ella the medications she needs. Hopefully it will stay usable until our girl no longer needs IV meds.

Back to her temperature though…

The only running thought is that Ella may have some kind of virus that her body is fighting off (goes along with the loose and discolored stools she’s been having the last 24 hours). All we can do is make her as comfortable as possible while her immune systems does its job.

Overall, her current situation is not as critical. It’s good to let Ella’s body fight off these kind of bugs because it will just make her stronger in the future. It’s just no fun seeing her uncomfortable. We’re so thankful that at this point it doesn’t seem to be affecting her respiratory system, which for her could be very detrimental.

We spent most of today with our girl, and discovered one thing for sure…none of her cuteness has been affected by all she’s been through. =)

Love to you and yours from all of us: Josh, Tina, and Ella Renae “the Bun” West.

Praising God for 2007 and looking forward to what He has in store for ’08!

HAPPY NEW YEAR ALL!!!

The last day of 2007 is Ella’s fourth day of having elevated temperatures. We hope the New Year will break this cycle.

She spiked a fever last night of 38.5c (101.3F) so they’ve started her on a round of antibiotics just in case of infection, and some Tylenol to help make her more comfortable.

At this point, no one knows for sure what is causing Ella’s elevated temp. They checked for an ear infection, ruled out teething at this point, and all other test have come back negative at this time for a bacterial infection. They haven’t totally ruled out an infection from her central line, but so far nothing is showing up in her lab results (the blood cultures are due tomorrow).

The central line is an area of concern, because any foreign object that has an opening into the body has a high risk of infection. This line is used primarily for Ella’s diuretics which has been key for keeping her lungs functioning properly. This line has also been giving the nurses problems in the last few days because it hasn’t been flushing very well. We hope this line doesn’t close off because it will pose some real challenges in getting Ella the medications she needs. Hopefully it will stay usable until our girl no longer needs IV meds.

Back to her temperature though…

The only running thought is that Ella may have some kind of virus that her body is fighting off (goes along with the loose and discolored stools she’s been having the last 24 hours). All we can do is make her as comfortable as possible while her immune systems does its job.

Overall, her current situation is not as critical. It’s good to let Ella’s body fight off these kind of bugs because it will just make her stronger in the future. It’s just no fun seeing her uncomfortable. We’re so thankful that at this point it doesn’t seem to be affecting her respiratory system, which for her could be very detrimental.

We spent most of today with our girl, and discovered one thing for sure…none of her cuteness has been affected by all she’s been through. =)

Love to you and yours from all of us: Josh, Tina, and Ella Renae “the Bun” West.

Praising God for 2007 and looking forward to what He has in store for ’08!

HAPPY NEW YEAR ALL!!!

The Bun spent another day on the hot side. Her heart rate continues to be 20-30 beats faster than normal. She was irritated, crying and unconsolable at times throughout the day.

We are still waiting for the final blood cultures to come back to confirm whether or not she has an infection (maybe from her central line). Since the initial CBC came back okay, they are thinking that she might have a virus instead. A new symptom today was loose and discolored stools. This is the 3rd day that she has been warm and not feeling great.

Thus far, they do not think it is teething. Please pray that Ella’s little body can fight off whatever has entered her body.

On a positive note, her lungs seem to be healing well. Dr. Kays came by to see her and weaned her lasix back to 2x per day via IV and the oxygen flow at 500ml. This is where she was at early last week, the last time she was stable. She has a chest xray scheduled for Tuesday morning to assess her progress. Please pray that her lungs do not show any signs of atelectosis.

We are so in love with our baby girl. We just want to spend all our waking hours with her. Please pray for our endurance for these last few challenges. The hospital routine is getting tougher as the days pass.

We know that God is in control of her progress and the timing of her coming home. That is how we make it through each day. But we need to seek Him constantly to have that peace. Pray for our endurance as well as Ella’s.

Thank you for all the love and support.

The Bun spent another day on the hot side. Her heart rate continues to be 20-30 beats faster than normal. She was irritated, crying and unconsolable at times throughout the day.

We are still waiting for the final blood cultures to come back to confirm whether or not she has an infection (maybe from her central line). Since the initial CBC came back okay, they are thinking that she might have a virus instead. A new symptom today was loose and discolored stools. This is the 3rd day that she has been warm and not feeling great.

Thus far, they do not think it is teething. Please pray that Ella’s little body can fight off whatever has entered her body.

On a positive note, her lungs seem to be healing well. Dr. Kays came by to see her and weaned her lasix back to 2x per day via IV and the oxygen flow at 500ml. This is where she was at early last week, the last time she was stable. She has a chest xray scheduled for Tuesday morning to assess her progress. Please pray that her lungs do not show any signs of atelectosis.

We are so in love with our baby girl. We just want to spend all our waking hours with her. Please pray for our endurance for these last few challenges. The hospital routine is getting tougher as the days pass.

We know that God is in control of her progress and the timing of her coming home. That is how we make it through each day. But we need to seek Him constantly to have that peace. Pray for our endurance as well as Ella’s.

Thank you for all the love and support.

Tina and I spent most of the day with Ella and she looks good. Ever since she was put back on her regular dose of diuretics via her IV, she has felt more comfortable, and her numbers have improved.

The only issue over the last 48 hours has been her elevated temperature. Ella’s heart rate also increases when she has a fever, anywhere from 20 to 30 beats per minute. I saw it hover between 200 and 210 beats while I was holding her. Probably not a good idea for her already very warm father to be holding her. I can help her if she’s cold, but I don’t think I’m helping her out when she’s this hot.

They ran another round of tests (CBC, etc.) and all came back negative. It doesn’t look like she has an infection. We think she may be showing signs of teething again, which she did a few months back when she spiked a fever (something a few of you have suggested). She doesn’t really seem more agitated either, which is also a good sign.

Tina and I are getting more comfortable with her G-Tube. In fact, when we’re there, we try to get involved as much as possible with her care. Ella had a new nurse today, but it was great because she was really open to learning more about our girl (her likes, dislikes, her fav sleeping positions, etc.).

The nurse was also very encouraging by letting us take charge of feeding Ella, which is great practice for when we go home. Venting her G-Tube before feeds, setting the pump for the feed, venting afterward, administering her PO medications. This is all stuff we’ll be doing at home, so why not let us start getting the full hang of it now.

After putting Ella down for the night we had dinner with a family that has a CDH baby in the NICU as well. We had a great time hanging out with them and their boys for dinner.

I so want to take our baby girl home. Knowing that the day of being released from the hospital is so close, is making every day we continue to be there even more tiring. We do trust in God’s perfect timing, and there is peace in that, but my flesh is also weak, and I want to be done with the hospital. I can’t wait for the sunlight to fall on my baby girl’s face for the first time and have her see the world outside.

I know the day will come, but right now it just can’t come soon enough. Until then, we will continue to rejoice in the Lord for all he has given us, and for the blessing of so many other CDH babies going home. We also mourn the loss of those who have left to be with Jesus, but take comfort that they are in His arms.

Praising God for this day, and the many days to come with our baby girl, Ella Renae.

Thank you for your continued prayers, and God Bless.

Tina and I spent most of the day with Ella and she looks good. Ever since she was put back on her regular dose of diuretics via her IV, she has felt more comfortable, and her numbers have improved.

The only issue over the last 48 hours has been her elevated temperature. Ella’s heart rate also increases when she has a fever, anywhere from 20 to 30 beats per minute. I saw it hover between 200 and 210 beats while I was holding her. Probably not a good idea for her already very warm father to be holding her. I can help her if she’s cold, but I don’t think I’m helping her out when she’s this hot.

They ran another round of tests (CBC, etc.) and all came back negative. It doesn’t look like she has an infection. We think she may be showing signs of teething again, which she did a few months back when she spiked a fever (something a few of you have suggested). She doesn’t really seem more agitated either, which is also a good sign.

Tina and I are getting more comfortable with her G-Tube. In fact, when we’re there, we try to get involved as much as possible with her care. Ella had a new nurse today, but it was great because she was really open to learning more about our girl (her likes, dislikes, her fav sleeping positions, etc.).

The nurse was also very encouraging by letting us take charge of feeding Ella, which is great practice for when we go home. Venting her G-Tube before feeds, setting the pump for the feed, venting afterward, administering her PO medications. This is all stuff we’ll be doing at home, so why not let us start getting the full hang of it now.

After putting Ella down for the night we had dinner with a family that has a CDH baby in the NICU as well. We had a great time hanging out with them and their boys for dinner.

I so want to take our baby girl home. Knowing that the day of being released from the hospital is so close, is making every day we continue to be there even more tiring. We do trust in God’s perfect timing, and there is peace in that, but my flesh is also weak, and I want to be done with the hospital. I can’t wait for the sunlight to fall on my baby girl’s face for the first time and have her see the world outside.

I know the day will come, but right now it just can’t come soon enough. Until then, we will continue to rejoice in the Lord for all he has given us, and for the blessing of so many other CDH babies going home. We also mourn the loss of those who have left to be with Jesus, but take comfort that they are in His arms.

Praising God for this day, and the many days to come with our baby girl, Ella Renae.

Thank you for your continued prayers, and God Bless.

For some reason, Bun did not sleep that much last night. This morning, she was wide awake and had a great time with Nurse Andrea. About noon, she became fussy and overtired. Also, she had a slight fever most of the day (temperature of 100). While she had the fever, her heart rate was elevated to about 180-200.

Finally about 6:30pm, I was able to get her to a solid sleep. The good part is that once she really fell asleep, her heart rate dropped to around 150, which is more normal for her. That was the first time I had seen that all day.

I’m not sure why she had a fever today. We will see how she does overnight and whether or not it was a fluke (there was a time before when she was getting unexplained fevers).

Besides the fever and being overtired, Ella’s saturations looked great today. They were pegged at 100 solid all day. This means that her lungs are feeling better. She stayed at 750ml of oxygen.

Dr. Kays came around and asked about her progress. She is still fighting off the fever, so he opted to leave everything as-is for now. He mentioned that she is supposed to have labs again in the morning. If she is looking more like she was before this recent set back, he may look to wean her oxygen again.

Par made it home safely last night and Ella is missing him! She even put on her cute bow tonight, hoping that it would lure him back. It didn’t work, but at least we enjoyed it.

We are so excited to take the Bun home some day. Please pray that day will come sooner versus later. We think she will make so much more progress in the home environment versus the hospital.

Thank you for your continued prayers.

For some reason, Bun did not sleep that much last night. This morning, she was wide awake and had a great time with Nurse Andrea. About noon, she became fussy and overtired. Also, she had a slight fever most of the day (temperature of 100). While she had the fever, her heart rate was elevated to about 180-200.

Finally about 6:30pm, I was able to get her to a solid sleep. The good part is that once she really fell asleep, her heart rate dropped to around 150, which is more normal for her. That was the first time I had seen that all day.

I’m not sure why she had a fever today. We will see how she does overnight and whether or not it was a fluke (there was a time before when she was getting unexplained fevers).

Besides the fever and being overtired, Ella’s saturations looked great today. They were pegged at 100 solid all day. This means that her lungs are feeling better. She stayed at 750ml of oxygen.

Dr. Kays came around and asked about her progress. She is still fighting off the fever, so he opted to leave everything as-is for now. He mentioned that she is supposed to have labs again in the morning. If she is looking more like she was before this recent set back, he may look to wean her oxygen again.

Par made it home safely last night and Ella is missing him! She even put on her cute bow tonight, hoping that it would lure him back. It didn’t work, but at least we enjoyed it.

We are so excited to take the Bun home some day. Please pray that day will come sooner versus later. We think she will make so much more progress in the home environment versus the hospital.

Thank you for your continued prayers.

Praise God – Ella’s chest xray was much improved this morning and her labs from later in the day checked out well.

The convert of the lasix to IV seems to have worked. Ella was on 1 liter of oxygen until about 6:45pm when Dr. Kays came to check on her and decided to wean it to 750ml. If she can continue to improve over the next 24 hours, he will look to wean it down to 500ml.

Her feedings of Portagen (30 calories per ounce) at 120ml/k/day continue. They are infusing feeds over 1 hour, 5 times per day and continuous g-tube feeds for 8 hours at night. Venting the g-tube is still at 10 minutes prior to feed and 30 minutes after the feed. If she can continue to improve over the next 48 hours, Dr. Kays talked about a slow introduction of breast milk with the Portagen. This would be really good for Ella to get the nutrients, so we hope that her body can tolerate the breast milk (in the past, it caused issues with fluid accumulation around her lungs).

Most of the day, Bun was sleeping. For whatever reason, she seemed tired. But it was still nice to spend my day bedside and rock her while she was resting. And of course, the awake times where I caught a grin or two made all my worries seem like nothing.

By the time I reached the NICU, Par had left for home in Birmingham. Ella misses him already, but he will be back in 6-8 weeks to see Dr. Kays for a visit. We look forward to that time.

Thanks for all the thoughts and prayers for our girl. She continues to take small baby steps in the right direction. And of course, each day she is a clear reminder of how we always need to look to Him for our needs.

Philippians 4:19
And my God will meet all your needs according to his glorious riches in Christ Jesus.

Praise God – Ella’s chest xray was much improved this morning and her labs from later in the day checked out well.

The convert of the lasix to IV seems to have worked. Ella was on 1 liter of oxygen until about 6:45pm when Dr. Kays came to check on her and decided to wean it to 750ml. If she can continue to improve over the next 24 hours, he will look to wean it down to 500ml.

Her feedings of Portagen (30 calories per ounce) at 120ml/k/day continue. They are infusing feeds over 1 hour, 5 times per day and continuous g-tube feeds for 8 hours at night. Venting the g-tube is still at 10 minutes prior to feed and 30 minutes after the feed. If she can continue to improve over the next 48 hours, Dr. Kays talked about a slow introduction of breast milk with the Portagen. This would be really good for Ella to get the nutrients, so we hope that her body can tolerate the breast milk (in the past, it caused issues with fluid accumulation around her lungs).

Most of the day, Bun was sleeping. For whatever reason, she seemed tired. But it was still nice to spend my day bedside and rock her while she was resting. And of course, the awake times where I caught a grin or two made all my worries seem like nothing.

By the time I reached the NICU, Par had left for home in Birmingham. Ella misses him already, but he will be back in 6-8 weeks to see Dr. Kays for a visit. We look forward to that time.

Thanks for all the thoughts and prayers for our girl. She continues to take small baby steps in the right direction. And of course, each day she is a clear reminder of how we always need to look to Him for our needs.

Philippians 4:19
And my God will meet all your needs according to his glorious riches in Christ Jesus.