Our girl didn’t have a fever all day and she looks good clinically. Her numbers seem to be going in the right direction as well.

Dr. Kays wants to see her maintain this stability over a couple days before he makes any changes. He’s also ordered a CT scan to evaluate the current state of her SVC. If you recall, her superior vena cava collapsed after being removed from ECMO and this contributed to her overall fluid issue. The idea now is to asses the current state of her SVC and decide if any action needs to be taken to help her move forward.

The procedure is scheduled for tomorrow or Thursday, but we’re hoping for tomorrow because Tina will be off work and with Ella. The Bun isn’t a big fan of any kind of medical field trips and it’s best if someone who knows her can be there. We’re not sure if a core nurse will be available on Thursday, so tomorrow is our best bet.

Earlier today Tina and I did a little BBQ with a family we met in the NICU. It was a beautiful day here in Gainesville, a little windy, but great for being outside and playing some touch football with the boys. The weather is supposed to change though: 40 degrees for the high tomorrow and 20 for the low. Sounds a bit more like Colorado than Gainesville, and I’m looking forward to it.

Tina and I are doing OK these days. I think the idea that was posed a couple weeks ago about taking Ella home “soon” has made the current rate of things even feel slower. At this time we don’t know when she’ll be discharged. Maybe in a few weeks, but only if Ella behaves herself. If history is any indicator though, it could still be awhile.

It’s really tough to think that way, because selfishly we want her home now. Our only peace at this time comes from trusting in our Lord’s perfect timing. We know He’s there and in total control of the situation.

My flesh constantly wants to convince me otherwise, and does not want me to let go, and in recent weeks this has intensified. On some occasions I’ve been able to convince myself that it’s going to be OK, only because a core nurse is taking care of Ella.

Tonight at dinner, the Lord reminded me that He is there with my girl ALL THE TIME. Hmmm….OK…so knowing that the Creator of the universe is at my girl’s bedside constantly I think I can trust Him and find peace in that (heh).

You would think considering all that we’ve been thorough, I would know not to get anxious in the things I cannot control, but even in these things that are less critical to my girl’s health, I can tend to get worked up.

The bottom line is the only way I have been able to consistently overcome any anxiety is by drawing close to Jesus through His Word and in prayer. This is true in all life situations and is what our Lord desires of us as well: a personal relationship with Him. He’s always there for us, we just need to be obedient.

Matthew 6:25
Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes?

Matthew 6:33-34
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

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!!!

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.

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.”

Ella had an OK day today. Her oxygen saturation hasn’t looked as good the last couple days, and she does seem to be a bit more fussy.

I found out from the nurse practitioner that her Lasix had actually been weaned since they had been administering it through her G-Tube. This was a little disconcerting because I would have thought they would want to see how she handled it going through her stomach first before they started weaning it.

I may be wrong, but I’m thinking this might be the reason for Ella’s lower saturation numbers the last couple days. I think the practitioner had thought the same thing which is why she brought the dose back up to the level she was getting intravenously. She also gave her a little extra dose to help her along.

It’s my hope now that they were able to catch it in time before our girl decides to go down that known slippery slope. The next few days will be telling.

She also received her vaccinations today. This could also be contributing to her discomfort. This is expected though and they will be giving her Tylenol over the next 24 hour period to help her feel better, and to keep any kind of fever at bay.

The nurse practitioner also discussed some preliminary results of Ella’s MRI. The good news is that there is no evidence of recent bleeding in her brain or other eminent problems. The news that comes as not much of a surprise, considering the seizures she experienced a few months ago, is they do see some cell damage in the left hemisphere of her brain. We did not go into details of the exact location or how extensive, but they would like to talk to us in the coming days about the specifics.

We hope as we find out more, it can help us better tailor Ella’s physical and occupational therapies to help overcome any deficiencies that this may have caused. This is also very different than an adult experiencing this kind of damage. Her brain has not yet developed its paths so there is a lot of opportunities for it to rewire itself to work around any damage that occurred. We just want to be sure to give our girl the best opportunity to do so.

Ella had nurse Marla taking care of her again during the day, and I was comforted to see nurse Janet with the Bun tonight.

Our girl seemed to be having trouble getting comfortable. We tried a few different positions, changed a wet diaper, and still no luck. Janet then offered to hold her (I was wearing a mask because I’m not feeling 100%) and so we tried that. She settled a little but then starting fussing again.

It was time for her Tylenol so I just held her while Janet prepped her meds. She really started fussing…then….there was this significant noise emitted from my daughter followed by a not so rosie smell. We then proceeded to put her in bed so we could investigate. Needless to say I quickly offered to handle the binky side of the baby while Janet went in for a look.

Well no wonder why she was fussing so much. I would have fussed too if I had all that wanting to come out of me. After we got her cleaned up she seemed a lot more comfortable.

It took some doing but she finally went to sleep (yay).

Tina comes home tomorrow night and we’ll be spending the weekend getting the new apartment set up.

We pray that Ella’s discomfort is only temporary and not a sign of her taking steps back. As much as we’ve appreciated the NICU, we are really looking forward to taking our girl home.

It’s on days like today that I’m reminded:

“Look at the baby, don’t look at the numbers…look at your baby.”

That’s what were told to do…over and over. I get it, but it’s hard when you see the numbers not looking like you hope they would. Add to that a baby girl who seems a bit more fussy, and your experience with past events, and you start feeling a bit anxious.

“Look at your baby”

Oh…yes…she is so pickin’ cute. She is so wonderful and has such an incredibly sweet spirit. She was knitted together by our Creator. Everything about Ella is exactly how God intended her to be. He has a purpose and a plan for her life. He knows exactly all the events that need to take place, and is in complete control of every circumstance surrounding her.

These are not things that I’m trying to convince myself of, these are things that the Word of God promises us. Peace when we trust in Him, comfort when we surrender to Him, grace and forgiveness when we confess to Him.

If any of you, who have read this blog, are still wondering where our peace comes from, let me say it plainly: Jesus Christ

Oh, my flesh will get in the way, and I personally struggle with anxiety, but when my eyes are fixed on my Lord and Savior, there is a peace that washes all of it away.

Whew…I think a little bit of my Father was coming out in me there. Those of you who had the pleasure of knowing him, understand what I’m talking about.

It’s 11:30pm, and as I look around the apartment, and listen to the silence, it really blows my mind that we’re still here in Gainesville Florida. Our baby girl has been in the NICU for one hundred and fifty days! We originally thought we’d be here, at the most, 12 weeks….but we’ve been here just a little longer than that. I know without a doubt that there’s a purpose for us being here so long, and even longer now, considering we’re not planning on going back to Denver until summer.

We have been so blessed by all the people we have met…the other NICU parents, their babies, the amazing nurses that have taken care of all of us, other CDH parents, family of friends, friends of friends, and others who know us through our blog.

We’re here because of this sweet girl God has entrusted to us, and we continue to stay here for the same reason.

Lord, we praise you for this day. We thank you for this journey you have set us on, and trust in your path you have laid before us. Let you will and direction be made clear to us daily as we look to you for wisdom and guidance. Your name is above all other names, there is none greater than the great I AM. We trust you Father. Amen

Whew…what busy a day. My work schedule was jam packed and in between I had to take Tina to the airport, and then, oh yeah, go see the cutest Bun ever!

Ella’s had quite a bit of activity in the last 24 hours, so she’s even more worn out than usual. She had a blood transfusion yesterday, an MRI today…ahh, you know what I really think is wearing her out though? These days, she has to sneak all the way across the NICU to see her friend Par without anyone seeing her. I thought the bottom of her socks looked a bit dirty…hmmm.

Overall though, Ella had a so so day.

She wasn’t real excited about having the MRI done and for this to be affective, they need her to keep still. Nurse Marla tried everything to keep her calm, short of crawling into the MRI machine with her. If it was actually OK for Marla to do this, I know she would not have hesitated =). For this reason, they gave Ella a small dose of fentanyl to calm her down. After this, she was nice and relaxed.

Dr. Kays ordered the MRI, not because there is anything wrong with Ella, but instead to proactively check for any other potential brain issues before she’s discharged. We don’t have any results yet, but look forward to hearing what the radiologist has to say.

When I went to see Ella tonight, she was awake, but she looked a bit tuckered out. Her breathing appeared to be a little labored as well, and her saturation wasn’t as good as I’ve seen in previous days (95-98%).

I spent some time, holding, rocking, and singing to her. She started to settle down but couldn’t quite get comfortable. I laid her down in bed, and noticed that her G-Tube button looked a little inflamed. The nurse said that it needed to be cleaned, so she took a damp cloth and did just that.

Our girl wasn’t too excited about this process. I think the skin around this area has broken down a bit, due to small amounts of stomach acid, which make it sensitive. Even part of her scar seemed a bit more inflamed from it. It doesn’t look like infection, and the nurse practitioner and attending doctor are aware of it.

After her belly was cleaned up, I suggested an idea another nurse planted in my head about putting Vaseline around the button. Ella’s nurse was thinking the same thing. After applying the ointment, Ella requested to be held again.

I finally was able to get her in a comfortable position and she went out! Totally fell asleep. The nurse then removed her feeding tube, and closed off her button. Ella barely noticed.

I held her for awhile, then figured it was safe to put her back in bed. I was able to lay her down, she woke up for a second, and fell right back to sleep. She looked very comfortable, and her numbers did too. I then looked comfortable myself (heh).

I then said my goodbyes and headed home to the apartment. While driving back I started thinking about our journey. I can’t even begin to process all that we’ve been though. There’s part of me that doesn’t believe we’re even here. Another part of me feels like time has flown by so quick, and yet another part feels like it hasn’t gone fast enough!

It’s amazing to look at this miracle girl and ponder all that she’s been through. We are so blessed to be Ella’s parents, and we praise God for giving us the privilege of loving this wonderful girl.

What did Tina want for her birthday? To shorten her “to do” list, of course! We went out shopping today for housewares for the apartment we’re moving into the day after Christmas. Our original plan when we moved to Gainesville was to rent what we needed considering we wouldn’t be her more then 12 weeks (heh…so much for that). Now that we’re going to be her ’til summer, this no longer makes financial sense.

After our mini shopping spree, we headed on over to the hospital to see our girl. The Bun has been maintaining her steady track. She looks good and her numbers look good too. Her feeding is doing ok, but she seems to be retching more. They tried the plan of venting 10 minutes before feeding and 30 minutes after, but Ella doesn’t seem to be tolerating that well. So they’re letting her vent longer and hope to slowly reduce the post feeding vent time. We need this to happen so Ella can get to the bolus feeding stage.

We saw baby Par’s mom and grandma (Liz and Barbara) on the other side of the NICU. We switched for a bit and Barbara sat with Tina while I hung out with Liz. Barbara was able to hold Ella for a bit which was so great. I had told Liz that it was Tina’s birthday, and of course I received a bunch of grief for not telling her sooner (hehe).

Barbara invited us to dinner with them, so all five of us met up to celebrate Tina’s birthday. We had a such a great time hanging out, sharing stories, laughing about those stories, and a bit at each other =).

After dinner (thanks again Barbara!), we headed back to the NICU to be with our girl. I was hoping to see Jasmine and Chris before they left town. Yesterday, they indicated to Tina that they might stop by today. I was hoping they would so I could say goodbye, but it doesn’t look like I’ll get that chance.

Thank you again to all of you who prayed for this precious family. We have been blessed by our lives crossing paths, and we continue to pray that the Lord will draw them close to Him.

It’s almost midnight, and Tina and the nurse are putting our baby girl to sleep. Rest well sweet Ella and know how much you’re loved by so many, even more so by our Savior.

Tina took the day off work to spend it with the Bun while I worked hard to complete a project due at work next week.
 
Ella continues to do well on the nose cannulas. She did have a couple meltdowns today, but Tina was able to help calm her down.
 
The only change today is that they are venting her feeding tube for 10 minutes before feeding her. Then, giving her 64ccs of Portagen on a continuous feed through her g-tube, venting for 30 minutes afterwards and finally closing the tube off until the next feeding.
 
I went back with Tina tonight, and spent some time holding our girl. Honest to God, I still don’t believe that she’s my baby. I look at her with awe and wonder. I can’t believe that Tina birthed her…I know Tina has an easier time believing that one ;-).
 
Our girl has come so far, and we praise God for the incredible progress she has made. She is such a miracle.
 
Thank you for all the love and support.

Ella had a pretty uneventful day. This is a good thing. We want her to keep taking these steps forward with minimal “events”.

The Bun has been eating pretty steady too and they’ve upped her feeds from 60ccs to 64ccs. She’s being fed over an hour period at three hour intervals. Our girl is putting on some more chub as well. She’s now weighing in at 9lbs 7oz.

Her CPAP pressure is currently at 3, which Will (a respiratory therapist) commented on being the lowest he’d ever documented. Ella looks good though, and this gives us hope in her taking the next step to the regular nose cannulas (hopefully Thursday).

We had one of the NICU graduates come visit us today! Baby Evan and his mom Tamara stopped by to see us to drop off some early Christmas presents. Evan looked FANTASTIC! He was so engaging and bright eyed. It’s so encouraging to see these other CDH babies doing so well. What a true blessing.

When we arrived at the hospital tonight, Liz and Rusty were both with Par. It’s nice to be next to our friends in NICU 2, plus it’s comforting to know that Liz probably has at least one eyeball on Ella most of the time.

Tina and I did get a chance to talk to Jasmine and Chris tonight. Please continue to pray for baby Jonathan. He is still in a critical place. We ask that the Lord’s peace be upon his parents during this time.

We know that many of you have followed us on this journey in spirit, but have not posted a comment. Just know that we appreciate your thoughts and prayers that are lifted up for these precious children even though they are not done so in a public manner.

God Bless all of you.

Psalm 9:10
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.

Ella’s Mom is home! Yay!
 
Tina made it back unscathed from traveling coast to coast. OK, maybe a little scathed, because she only got about 2 hours of sleep last night (ouch).
 
Ella Renae had a good day. Her stats still seemed a little elevated for my comfort, but her clinical signs were good. She was not really fussy, her lungs didn’t sound junky, and she was smiley and happy to see me. I spent most of the afternoon with the Bun and put her to sleep before going to pick up Tina.
 
Tina was flying in to Gainesville so I didn’t need to go far to pick her up. We grabbed quick bite and headed back over to the hospital. Our girl was still sleeping when we arrived.
 
Tina also made me feel better by confirming that her stats were OK. I know, I know…some of you nurses out there were trying to tell me that it was ok, but I’ve just seen it go the other way so many times before, that it was hard to not feel that way. Having Tina as a gut check confirmed that it doesn’t look bad. So, the one nurse who said she’d buy us dinner, if Ella started to decline, is off the hook. =)
 
We didn’t stay long with Ella because she was contently resting and Tina was totally wiped too. We decided to head home, which I was excited to do because I had a little surprise in store for Tina.
 
When Tina opened the door to our apartment she was greeted with some unfamiliar lights. I felt inspired to go get us a Christmas tree and decorate it as a welcome home present. I got up this morning and went to Home Depot and purchased a live tree, a few strands of lights, and a tree skirt with Frosty on it. Also, I had the assistance of a very good friend who was kind enough to lend me some ornaments.
 
Tina was very surprised and happy. She’s wanted a live tree for awhile, so I knew this would go over well. The last time we had a live Christmas tree was over 11 years ago! I’m basking in the glow of it as I write this post. Having the tree up really makes it feel like Christmas.
 
Thank you to all who have followed us so diligently on this journey. Your prayers and support are appreciated every moment of every day.
 
p.s I have not heard any updates on Par or Jonathan. Continuing to lift up both in prayer.