Posted (jooosh) in All Posts on December-31-2007

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!


Posted (Tina) in All Posts on December-30-2007

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.

Posted (jooosh) in All Posts on December-29-2007

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.

Posted (Tina) in All Posts on December-28-2007

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.

Posted (Tina) in All Posts on December-27-2007

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.

Posted (Tina) in All Posts on December-26-2007

As all of you know, Ella has had a rough week. Last week this time, she was starting to go down the wrong path. We feel that the key change that made things turn for the worse was switching her diuretics to be administered orally vs IV.

When this was changed, they also increased the volume significantly plus added 2 more diuretics since they noted that the atelectosis was kicking in. She has very little reserve and any slight changes can make a huge difference for her.

Dr. Kays returned today and confirmed our theory. He was not happy that the diuretics were modified while he was out of town.

In retrospect, the nurse practitioners simply wanted to come up with a plan to get Ella home with us sooner versus later. However, the steps that needed to take place in order for that to happen were too many changes, too quickly for Ella. If we have learned anything, it is to make changes slowly.

Dr. Kays stated that it is more important to get her back to where she was last week before all these changes took place. So, he’s now only using 2 diuretics – lasix and diamox. The dosages have also been reduced, but he ordered that they be given via IV versus orally.

He wants to watch her progress and begin to wean the oxygen back down to 500ml. Once she is back to that place, we will discuss further steps.

The two main challenges at this time are her feedings (finding the proper formula and schedule), and the switching of the diuretics from IV to oral. This could take some time. We need to be patient with these last challenges.

We spent all day with Ella in the NICU today. A few times, we caught some good smiles. This means that she must be feeling better.

Please continue to pray for our little girl. We want her to get stronger, gain endurance and hit all her milestones so that she can come home with us.

On a note of praise, Par is getting ready to go home tomorrow!!! Thank you for all the continued prayers for this boy and his family. Although Ella will miss sneaking across the NICU at night to snuggle with Par, we are very excited for them. Please pray for their safety on their drive home to Birmingham.

Posted (Tina) in All Posts on December-25-2007

Today was Ella’s first Merry Christmas.

Nurse Marla was taking care of her today. What a great Christmas gift for us and Ella!

When we arrived at the hospital, she had just awoke from a sound nap. It was perfect timing.

From there, we spent a good 2-3 hours with Ella. She was such a good sport. We dressed her up in Christmas outfits, took photos, talked and played with her. She was in a great mood the entire time.

One of the things that she liked the best was for me to grab under her arms and raise her up and down. Nurse Marla noted that she probably likes it because it makes it easier for her to breathe in that position. Plus, it gives her a great view of things.

Her stats today were good. I think that they might have figured out the proper combinations of diuretics to give her via the g-tube.

She had a chest xray this morning that appeared a bit hazy, although they think that it might have been due to her movement & positioning. Just to make sure, they are taking another one tomorrow morning.

We still need to work on getting the feeding into shorter sessions and try a formula other than Portagen before we go home. We have stayed with Portagen this entire time because it had the least amount of risk for the chest fluid build up. Now that we are 2 months past that issue, we need to think about other formulas that will provide better overall nutritional needs for Ella (Portagen is not the best). We would like to try another option (even breast milk from when I pumped) and make sure she will sustain before we take her home.

Also, her oxygen may need to be weaned before we are discharged. She is currently at 1 liter. Most of the time, babies will start on 500 ml and be weaned down from there before being released.

Dr. Kays has been out for the past 10 days or so due to the holidays. We need him to return so that we can run some of these decisions past him.

The main nurse practitioner that has Ella’s case will be returning tomorrow. We hope to touch base with her and come up with a new, revised plan.

At this point, we are simply taking small steps each day toward discharge from the hospital. We hope and pray that it will be within the next couple of weeks. We trust in the Lord’s timing…and in His plan. She is such a sweet spirit and we are so blessed to have her in our life.

We had a great Christmas dinner with friends locally here in Gainesville (last night and today). Both nights, the company and food was awesome! We are so thankful for the friendship, love and support during this time.

Moreover, we are grateful that the Savior Jesus was born on this day so many years ago. He is the reason for the season.

Matthew 1:18-24
This is how the birth of Jesus Christ came about: His mother Mary was pledged to be married to Joseph, but before they came together, she was found to be with child through the Holy Spirit. Because Joseph her husband was a righteous man and did not want to expose her to public disgrace, he had in mind to divorce her quietly.

But after he had considered this, an angel of the Lord appeared to him in a dream and said, “Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.”

All this took place to fulfill what the Lord had said through the prophet: “The virgin will be with child and will give birth to a son, and they will call him Immanuel”—which means, “God with us.”

When Joseph woke up, he did what the angel of the Lord had commanded him and took Mary home as his wife. But he had no union with her until she gave birth to a son. And he gave him the name Jesus.

Posted (jooosh) in All Posts on December-24-2007

We couldn’t have asked for a better early Christmas present. Ella has had a good day, and we can just tell she’s doing better. We’re not the only ones confirming this…the nurses who have taken care of her the last few days can see her improvement. Of course, some real confirmation also came when nurse Marla indicated that she looked better. Marla knows our girl well, and our girl knows Marla well =).

Ella’s feeding has been adjusted back to be administered over an hour period. She was at the point of receiving her full amount of food over a half-hour period every three hours, but she seemed to be retching more.

What’s been somewhat of a concern is the inconsistency in how she has been fed. Some nurses will feed her directly from the pump, right into her G-Tube, while others have the pump drain into a large syringe (no needle) connected to her G-Tube which allows gravity to push the food in her belly.

The first way (pump to G-Tube) makes sense from both a control standpoint and to slowly expand her stomach during each feeding, but it also forces the food into her belly which may be a problem if her stomach is not stretched enough.

The other method (pump to syringe to G-Tube) seems a bit easier on Ella, but I don’t think it’s doing the job in helping her stomach expand.

Considering we were seeing the second method used more frequently then the first, it makes sense to me that Ella would have issues with her feeding over a half-hour period when pushed in using the pump to G-Tube method. Maybe working back using this method consistently will give her what she needs to move forward.

These inconsistencies have been magnified as well with the holidays due to frequent staff changes. We’ve had multiple nurse practitioners over the last week that manage Ella’s overall care. This makes it challenging because specific care plans from one nurse don’t always make it to the next.

We’re hoping our girl can push past all these things and get well enough in the coming days so we can take her home here in Gainesville. Tina and I both feel that the best thing for Ella is constant consistent care, and it is this routine that will enable her to move forward. We’re excited about the idea of having her home all to ourselves, and anxious to see her take the next steps, especially the one that takes her out of the hospital.

Tina and I spent the bulk of the day getting things unpacked at the apartment and running errands to get ready for the big day. We don’t know 100% when that day will be, but we know it’s soon which is why we want to be ready (ready as much as we can be that is).

We spent some time with the Bun late in the afternoon. She was awake for most of it, and seemed very content and comfortable. Tina pretty much held her the entire time we were there, something that Ella didn’t really mind at all. =)

We left at shift change to go have dinner with some friends and their family. It has meant so much to us to have people open their homes and let us spend these special times with them. We’re so blessed to have them in our lives and know that they will continue to be there for many years to come.

Thanks to all of you for the love and support over the last 154 days. Your thoughts and prays have brought us so much peace and strength through this time. We look forward to the day we can share the incredible gift of Ella Renae in person.

God Bless you all, and Merry Christmas!

Luke 2:8-15
That night there were shepherds staying in the fields nearby, guarding their flocks of sheep. Suddenly, an angel of the Lord appeared among them, and the radiance of the Lord’s glory surrounded them. They were terrified, but the angel reassured them. “Don’t be afraid!” he said. “I bring you good news that will bring great joy to all people. The Savior—yes, the Messiah, the Lord—has been born today in Bethlehem, the city of David! And you will recognize him by this sign: You will find a baby wrapped snugly in strips of cloth, lying in a manger.”

Suddenly, the angel was joined by a vast host of others—the armies of heaven—praising God and saying,

“Glory to God in highest heaven,
and peace on earth to those with whom God is pleased.”

When the angels had returned to heaven, the shepherds said to each other, “Let’s go to Bethlehem! Let’s see this thing that has happened, which the Lord has told us about.”

Posted (Tina) in All Posts on December-23-2007

Praise God – – Ella had a much better day. Thank you for your prayers.

Her chest xray this morning showed improvement in her left lung. The increased diuretics are kicking in and having the desired effect. Along with the oral diuretics, they also gave her a bolus injection of lasix via her central line.

The past two days, Ella had significant weight loss due to the fluid retention. Her weight decreased to 9 lbs, 15 ounces.

Ella’s flow of oxygen is still at 1 liter. The increased diuretics and oxygen have made the difference!

One area of concern is Ella’s g-tube site. It has been oozing gastric juices, which is fairly normal, but it has been getting into her repair scar and causing inflammation. This has been going on for several days, but it is not getting better. Please pray that it will clear up soon.

We spent the entire day moving into our new apartment and we really like it. Now, everything is moved but we just need to unpack and get everything ready for the arrival of Bun.

Our hope and prayer is that we will be able to take her home soon. We will see how she does over the next couple of days.

Thank you for your continued support. We are so thankful for each of you during this holiday season.

Posted (Tina) in All Posts on December-22-2007

Sorry for the suspense – – it was a rough 24 hours or so – – for parents and Ella!

I came back from my business trip late last night. There was a snow storm in Denver and my flight was delayed 2 hours. By the time we made it back to Gainesville and in to the NICU, it was 1:30am.

I could tell that Ella was not feeling well. Overall, she seemed fussy and not consolable. Her stats weren’t great either. As you know from previous posts, this typically means that something is wrong with her lungs.

The last time I saw Ella was Tuesday night. That was the first night that I had not seen her look good. At that time, she was getting a blood transfusion. Once the transfusion ended, her stats went up a bit. But that was the first time since her nissen surgery that she did not look strong. I mentioned something to the nurse since this can typically be the start of a downward trend for Ella.

The next few days brought lots of activity for Ella: an MRI, a series of vaccinations, fever, switching her diuretics to oral versus IV, etc. Slowly over the past few days, it seems that her saturations were continuing to trend downward. Since there were so many changes, it made it tough to distinguish what might be going on.

First, they thought it was the lasix. They switched it to oral, but did not increase the amount. When you switch from giving lasix from IV to oral, you need to increase it in order to have the same impact (the gastric acids in the stomach lessen the effect). It took them one day to figure that out and adjust that component.

Then, they gave her several vaccinations. They gave her Tylenol to help with her fever, but we think that the vaccinations made her feel crummy (pretty typical).

During these times, Ella was having episodes frequently. When she would fuss, she was not consolable. She would get sweaty and decompensate to the point where she was not getting oxygen. It did not help that Ella was assigned to nurses that had never taken care of her.

The nurse practitioners are concerned about Ella, so they started to run a bunch of tests to figure out the problem. They took a blood gas, it was fine. They did 2 CBC’s within the past 24 hours; those have checked out fine too. The chest x-ray yesterday seemed okay, but the one this morning showed something in the left lung. They think either infection such as pneumonia or atelectsis. To be safe, they started antibiotics in case there is infection.

Based on Ella’s history, we think that it is her lung collapsing (atelectsis). Everything points to that versus an infection. Today, they tried adding 2 more diuretics; they are thinking that this might help. Also, instead of putting her back on CPAP, they tried increasing the flow of oxygen (first to 800 ml, then to 1 liter).

Tonight, her oxygen is set at 1 liter and she looks better than she has in days. The oxygen was increased around 7pm and we think it has made a big difference. She is asleep – – her heart rate is 150 and her saturations are 100.

She is scheduled for another blood gas in the morning and another chest xray. If her saturations dip below 98, there is an order to increase her oxygen flow up to 2 liters. This is what they will try to prevent going back on CPAP. If she has to go back on CPAP, they will put her back in NICU 3.

We are hoping that the increase in diuretics and flow of oxygen might be the ticket to getting her over this latest challenge. Please continue to pray for our baby girl. We are still holding out hope that we can take the Bun home soon.

Please pray for our health and peace too. We are switching apartments this weekend and are trying to get everything set up and ready for Ella. We are trying to accomplish so much within a few days, and we definitely do not want to get sick.

Thank you all for joining us on our journey and for your continued prayers. We praise and thank the Lord for our beautiful baby girl.