On Monday, April 2nd, 2007, we went for our 20 week ultrasound and found out that we were having a baby girl. On Wednesday, April 4th, we found out that she has a high-risk birth defect called Congenital Diaphragmatic Hernia (CDH). God is using this time to stretch us and test our faith, but we are holding tight to His promises.
Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
They have increased her feedings to 18ccs of Portagen per hour. She seems to be handling it fine. Each day they are weening her versed just a little bit, which is progress forward (this is her sedative medicine).
Urine output was high the last 24 hours at 343. Yet, her chest fluid output was so low yesterday – – only a total of 5.5ccs!!! We are hoping that this is a good sign. They have not taken another chest x-ray but expect that she will have one tomorrow. So far today, she has output 3ccs out of her chest tubes. We’re so hopeful that the fluid issue might be reducing slowly but surely.
Nurse Kelly is taking care of her. She went ahead and flipped Ella on her right side, which normally causes issues for her. Yet, Ella has not had any extra sedative or pain meds besides her drips since Friday afternoon. So, she is tolerating her right side today with saturations at 100/100. Plus, her last blood gas was excellent, pH=7.45, cO2=49, pO2=118.
As you can see below, we had quite the adventure yesterday with Uncle Rick and Cousin Megan. First, we went to the Florida Museum of Natural History and they were having a festival called Butterfly Fest, to celebrate butterflies. Megan made a butterfly flag and learned how to make an oragami crane. Then, we walked inside the museum to look at all the exhibits. The highlight was the Butterfly Rainforest. It was amazing to walk around a temperature controlled environment with hundreds of different butterflies. They were gorgeous!
After a nice dinner, we went hunting for alligators. We heard that they hang out at Lake Alice in the middle of the University of Florida. First, we walked up to one area and sure enough, a small gator was approaching us. We spent quite a bit of time there and then heard of another area to maybe find some others. On the way further down the road, we noticed a huge crowd gathered on the opposite side of the street. It was an agriculture area on the campus. At dusk time, within a few minutes, tons of bats flew out of this house! It was surreal…
From there, we went back across the street to Lake Alice. We saw some large, oversized turtles in the water. And after about 15 minutes, a much larger gator came to the edge of the land. I couldn’t believe that we had the opportunity to witness alligators so up close! Thus the title: “Butterflies, Gators, and Bats, oh my!”
Uncle Rick and Cousin Megan are leaving today, but we had a great time!
Ella Renae continued her good streak through the weekend and is doing really well today. She’s done a lot of solid sleeping over the last 48 hours, even in positions that we wouldn’t think she’d tolerate. Nurse Kelly has done a great job at making her comfortable on her right side, and on her belly with her head turned to the right! We were glad to see her sleeping so soundly in these orientations.
When we called today, Ella’s good behavior was confirmed with her blood gas numbers from 8am this morning: pH=7.42, cO2=52, pO2=106. The number of breaths on her vent was weened down to 30 breaths per minute.
What she said next took us a bit off guard. Ella had the two chest tubes in her back removed at 9am today! Uhhh…what? Yes, Dr. Kays looked her over and felt that is was time to do this because only the large tube in her left side was still draining a little.
We were both surprised to hear this, and the look on Tina’s face confirmed a bit of nervousness too. The last time Ella was pushed to only one chest tube, she went spiraling down a not so good path, but we don’t anticipate this happening this time.
This is a good thing though and a necessary step on the road to recovery. We can’t be sending our girl off to school with a couple chest tubes, even as cool as the other kids might think it is. Another big positive is that it reduces the number of areas for possible infection.
We hope to speak to Dr. Kays today and hear what his plan is for the coming days.
Standing next to our girl yesterday, looking at O2 saturations pegged at 100%, it really hit me how far she’s come. We praise our Heavenly Father for continuing to bless us, and for the strength and health He’s given Ella Renae. We don’t know for sure how long our journey will continue in Gainesville, but every day we are trusting our Lord to guide our path.
Thank you for walking, and for being on your knees with us through this journey.
p.s. Thanks go to teachers and all the children who helped make the “Love Letters for Ella” and “Baby Ella” poster. We have the letters at home and made a copy of the cover to put on her wall.
UPDATE (11:10pm EST) by Tina: We just came home from the hospital. Ella looked great.
While we were there, they took another blood gas. It was pH level=7.41, cO2=52, pO2=108. Dr. Kays had left orders that if her cO2 was over 50, to ween the vent. So, around 9pm tonight, the breaths per minute was weened to 26 breaths per minute.
They will take another blood gas around 4am and a chest x-ray in the morning. These two factors over the next couple of days will really demonstrate if the fluid issue has resolved.
We will rest tonight knowing that she is in His hands and look forward to getting an update in the morning. We hope and pray for the best!
Yes, today Ella is 12 weeks old! The last time they weighed her, she was 8 lbs, 2 ounces. She is still battling edema, so some of the weight could be from fluid retention. But she was born at 5 lbs, 6 ounces, so that is tremendous progress.
Speaking of gaining weight, we found out that Ella was removed from her IV food this past weekend (HAL & lipids) and is now relying on her feeding tube of Portagen for all her nutritional needs.
A side effect that they see in some babies is an elevated bilirubin count, as the body adjusts, causing jaundice. So, Ella is sporting a bit of a California tan the past couple of days. Maybe she is just missing Uncle Rick and Cousin Megan? In any case, they expect that this will go away by next weekend or they will investigate further.
Since Ella’s 2 chest tubes were removed yesterday morning, she is responding well clinically. They are holding off on a chest x-ray, unless they absolutely feel it is necessary. Instead, they are just using her saturations, blood gases and overall behavior as an indicator of how well she is doing.
Her saturations have been high throughout the night and day so far. The last blood gas at 8am was excellent, pH level=7.41, cO2 = 53, and pO2=95. So Dr. Kays went ahead and weened the vent a touch more, down to 24 breaths per minute.
They are still changing Ella’s position every 4-6 hours: belly, right side, left side, mid-line on her back. She seems to be tolerating all the positions fine, which is a HUGE indicator that she is feeling better and not struggling as much to breathe.
We are thankful for her recent progress. When looking at her, Josh and I still marvel about all that God has done and continues to do in our lives through our baby girl. It has been an honor and a privilege to see God’s hand working in the lives of so many.
Psalm 19:14 May the words of my mouth and the meditation of my heart
be pleasing in your sight,
O LORD, my Rock and my Redeemer.
Ella’s blood gas at 8am was excellent: ph level=7.37, cO2=55, pO2=155. Also, her chest x-ray looked good. In the last 24 hours, her urine output was high at 373.
When I spoke to Nurse Angie, her saturations were 100/100 and she was sleeping soundly on her belly. I asked about the chest fluid output. Nurse Angie confirmed that there was only a trace since 7am. This was what we heard from the nurse last night too. That was a very good sign.
So this afternoon, the phone rang. It was Dr. Kays. He started off by telling us that he removed the chest tube on her left side! He confirmed that he thinks the fluid issue is resolved and she is chest tube free! Praise God!
The next step is to continue weening the antibiotics, octreotide, fentanyl, and versed meds over the next week. Also, to make steady progress by weening the ventilator. If Ella responds well, he said that she might move to CPAP (Continuous Positive Airway Pressure) in the next 3-5 days!
When infants are disconnected from a mechanical ventilator, often they require a form of assisted breathing called nasal continuous positive airway pressure (CPAP). A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby’s nose, which is hooked to a machine that provides oxygenated air into the baby’s air passages and lungs. The pressure from the CPAP machine helps keep a baby’s lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own. (www.kidshealth.com)
Dr. Kays let us know that they are moving Ella again to a different room in the NICU. There is another baby coming soon that might need ECMO, so they are moving Ella to make room for the new baby.
No chest tubes for Ella is another HUGE milestone. Thanks for your continued prayers and celebration with us on this day!
Yes, we will be asking tonight when we will be able to hold our baby girl…we’re so looking forward to it!
Ella remained stable last night and today. She seems a bit more fussy than usual. The nurses think her changed behavior is due to the weening of her pain and sedative meds.
Her last blood gas at 8am was good, but not quite enough to ween: ph level=7.36, cO2=54, pO2=89. So, she is staying at 14 breaths per minute. The orders from Dr. Kays is to ween the ventilator if her cO2 is below 52.
Yes, it was glorious last night. It was the first time we were able to hold Ella! It was even that much more special since Nurse Michelle was there to help us!
It is quite a production to hold Ella simply because she is still so connected to the ventilator and so many lines. But Nurse Michelle made it happen!
Josh and I were both in shock that it was actually happening. Surprisingly, neither of us got teary-eyed. But it was so amazing to have that time with Ella. We have been more emotional today, just reflecting back on the experience.
Lord, we thank you for your healing hand. We thank you for your faithfulness in bringing Ella to this point. What an amazing testimony of your power and strength!
All we keep hearing is to obey and leave the consequences to you. Nothing is too big or too complicated for you. We thank you for the peace and serenity that you have provided during this stretching time.
We praise and thank you for this amazing little girl, who was made perfectly in your image. May she be a constant reminder for all of us to draw near to you and trust.
First off, if you didn’t get a chance to see yesterday’s post, you’ll want to do so. There’s a video there of Tina holding Ella for the first time, and some pictures of me and my girl as well.
Let me take this moment to clarify what Tina said about us being “more emotional” yesterday =). Being the crazy emotional ball-baby that I am, I fully expected to cry my eyes out when I was able to hold Ella for the first time on Wednesday night. To my surprise, I didn’t. I think the moment was just so shocking, that the tears did not flow.
If I am totally honest, I still can’t believe that she’s my baby…MY BABY! What…huh??? That’s my kid I’m holding…no…wait…but…we tried for five years to have a baby and we weren’t able to, and now there’s this baby in the NICU and……what??? MY BABY!
It still hasn’t hit me. Which I think also tempered the tears.
Now, yesterday, after putting together the video, and Tina and I watched it the first time, WE BALLED OUR EYES OUT!!!! To come through all this and have that moment of indescribable joy was just so overwhelming. I think we just needed some time to take it in.
We keep watching the video and are just amazed how blessed we are to have come through to this point. There is no way to silence our Praise of our Heavenly Father for this journey…the WHOLE journey.
So, how is Ella doing today. She is doing GREAT!
The last couple days she had seemed to be a bit more fussy, even before and during the time we held her on Wednesday. Yesterday evening, her blood gas didn’t look that good either. Her blood was drawn right after she was upset, but I didn’t know what to really think of the numbers.
Well this morning, nurse Andrea let us know that her last blood gas was fabulous: pH=7.41, cO2=49, pO2=122. With those numbers, they weened her vent down to 10 breaths per minute! This is so good. If our baby girl takes 60 breaths per minute, 50 of those are on her own!
Every day is another day closer to her being extubated (breathing tube removed). I bet it happens sometime next week, but we’re content to wait on His perfect timing. She won’t be totally ventilator free once this happens, but she will have graduated to CPAP, a form of ventilation by forcing air through the nose.
Her feeds have also been bumped up to 20ccs per hour, and her output of those feeds have increased as well ;-).
They’re not going to ween any of her sedation meds over the weekend, but her Octreotide will probably be DC’d (discontinued). This is the medication that helped with Ella’s chylothorax (chest fluid issue).
Praising God for today and resting in His peace.
Psalm 37:3-4 3 Trust in the LORD and do good;
dwell in the land and enjoy safe pasture.
4 Delight yourself in the LORD
and he will give you the desires of your heart.
Ella had a great night. She had such a good blood gas at 8pm, that they weened the vent down to 6 breaths per minute and 40% oxygen! This is the lowest vent settings that Dr. Kays ordered.
One of the nearby CDH babies was having his repair surgery last night. This led us to see Dr. Kays in the NICU.
He was pleasantly surprised by her progress and pondered the idea of extubation. Then, he asked if we had seen her chest x-ray from the morning. We hadn’t and neither had he, so we followed him to take a look.
Unfortunately, it was fairly hazy. I asked if this could be fluid build-up again. He mentioned that he cannot tell with the x-ray, although it was not as good as some of the prior ones.
With this information, he decided to wait until Monday and re-assess.
She did have another good blood gas at 8am this morning, ph=7.38, cO2=47, pO2=62. There is nothing to ween on the vent, so we hope the next couple days will just mean that she can get stronger.
He did warn us that even if he tries to extubate, that some babies do not tolerate it well initially and end up being placed back on the vent. But since there is no more vent settings to ween at this point, it is something that we will need to try.
Her weight has remained constant at 8 lbs, 1 ounce. Currently, she is sleeping soundly with saturations at 100/100.
If Ella can maintain her good blood gases throughout the weekend, he may try extubating her early next week.
Please pray for stable stats this weekend and a clear chest x-ray for Monday.
We’re writing this post from a Starbucks while we wait for my mom to fly into the Gainesville airport. Tina and I have already had a fun filled weekend with our friends who came to visit from Orlando.
The Boemler-Wareing clan made the trek up to spend time with us and our baby girl. We had lunch together yesterday, then decided to go see the butterflies at the museum with the kids. Afterwards, we headed over to see our baby girl for a bit. After visiting with the Bun, we timed it right so we could all head over to the campus to see the bats leaving their house. This is something you need to see a couple times just to take in.
It was great to share our girl with the Boemler-Wareings, and we enjoyed having the company of friends who we love so much.
Speaking of loving so much, the one who we love more than we could have imagined is doing well. Her last blood gas looked good (pH=7.41, cO2=45, pO2=94) and overall Ella has not been very fussy.
One thing she has been doing though is gagging a lot. With the reduction of her sedation, she is feeling things a lot more, and one of those things she’s feeling is her ET tube (breathing tube). This has been incredibly hard for me to watch. Being with her when she goes through one of these moments just cranks up my anxiety.
She’s so close to having this tube removed, it’s just hard to see her go through all this right before that point. I just want ease her wrenching, but there’s nothing I can do but pat her and contain her softly.
As I was sitting here thinking about it, the Lord impressed upon my heart to trust Him even through these smaller things. To come through what we did three weeks ago, and then find myself so anxious at this moment seems silly. I know it’s not silly, because I know it’s very human to feel this way. But God wants us to rest in His peace and trust Him in ALL things, not just the big things.
We continue to pray for our baby girl’s strength and for the perfect timing of her extubation. Please pray that she won’t have to be re-intubated after they remove her tube. This does happen, and in some cases, even happens a few times before the baby can be fully off the vent. We would just prefer that she wouldn’t have to go through it, but we surrender to His sovereignty through these events no matter how it plays out.
Thank you Jesus for our beautiful baby girl.
UPDATE 12:15AM (EST): Ella has been running a slight fever for about the last 12 hours or so. They ran a CBC that came back ok, but she’s had the fever long enough to justify additional tests and start her on more antibiotics. Please pray for no infection this evening and that the antibiotics will resolve whatever may be causing her temperature.
Praise God – – Ella’s fever is gone. We certainly don’t want any curve balls before extubation.
On that note, Ella’s blood gas at 7:30am was excellent, blood gas, ph=7.46, cO2=42, pO2=107.
When we walked in last night, her room looked a bit different. They switched Ella to a crib. We were pleasantly surprised! And apparently, Ella loves it. They placed a mobile right above her head and every time she is awake, she loves to watch all the animals move around. I can imagine that it is more exciting to look at than the heater in the top of her other bed.
Then, nurse Kathleen had to take her out of the crib to weigh her, so she asked if we wanted to hold her….uhh, YEAH! That did not take too much thought. I was able to get some great pictures of Ella in Daddy’s arms.
Ella lost weight and is down to 7 lbs, 9 ounces. This is actually a good sign right now, since Ella has had such a problem with fluid retention. We think that Ella is slowly moving toward her “real” weight.
Grandma West arrived yesterday afternoon and had her first opportunity to see Ella in person. She loved her time.
Today is another HUGE milestone for Ella and we’re really excited for her. The extubation is supposed to happen sometime after 3pm EST today, so we will definitely be doing more than one post today!
We know extubation may not work the first time for Ella, but we are so hopeful that it might and that she can be ET tube free. It has been so tough to watch her gag the past few days.
Thanks to everyone who continues to lift Ella up for her daily needs. Please pray throughout today that Ella’s extubation will go successfully and that she can breathe on her own.
Psalm 9:10
10 Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.
UPDATE (6:45pm EST): Dr. Kays just walked in and talked to us. He was still dressed in his business suit and tie. He had a meeting out of town earlier today and just returned. He was expecting to be back around 2:30pm, but his meeting ran late.
Since it is so late and there are less staff here at night, he wants to wait to extubate till tomorrow morning at 9am. We were a bit bummed, but know that God has perfect timing.
Please continue to pray that Ella will remain stable throughout the night and that she will do well with extubation tomorrow morning.
Ella was extubated at 9:15am EST this morning. Dr. Kays indicated that he didn’t expect her to make much of any noise at first because of her vocal cords being so separated. To our surprise, including Dr. Kays, Ella did in fact cry…and continues to do so as I write this =).
At the moment nurse Andrea and Tina are doing what they can to console her. Her saturations look good, hovering around 100%, but she’s still trying to get used to this contraption around her head and up her nose. Fortunately, the cannula’s they are using are not very long, about a centimeter.
She has moments where she will calm down, but then starts fussing again. This is pretty typical with a baby on CPAP; they just don’t like it.
We hope that she’ll get used to it enough to settle down and sleep. They’re trying a binky (pacifier) right now, but it isn’t helping. Also, trying various positions to try to get her comfortable: right side, left side and now she’s on her back.
The blood gas they just took at 10:45am was not the best: pH=7.14, cO2=60, pO2=80. She has been breathing quite heavy for the last hour at 77% oxygen support, but we hope she can calm down.
Nurse Andrea just gave her some versed (sedation medicine) to see if that will do the trick.
Praising God for this huge step and continue to pray for Ella’s forward progress, and for improved saturations. They will continue to monitor her and take blood gases throughout the day, to see if she can remain on CPAP.
p.s. If anyone has heard from Tina’s Mom or Jack within the last 18 hours, please let us know. As of noon yesterday, they were stuck in the middle of the fires at their house in San Diego. We heard that they were able to fight them off with the well water they had until the power went out and the pump stopped. Then, they resorted to shoveling dirt on the fires to protect their house. From what we could tell from the news reports, the fire looks to have burned all around them. Please join us in praying for their safety.
UPDATE (2:30pm EST) by Tina: Once we left the hospital this morning, Ella remained fussy for a bit. Nurse Andrea suctioned her mouth and nose. Once she did that, Ella could breathe better and fell right asleep. Maybe that is what she was trying to communicate to us this morning! Anyway, sleeping for her is really good right now – – it keeps her calm and when she is calm, she breathes better.
Ella remained asleep for about 1.5 hours, then she just woke up and calmly looked around. They took another blood gas and it was a little bit improved, ph=7.21, cO2=65, pO2=120. Dr. Kays says that these blood gases are acceptable for her right now and it is a good sign that she is slowly moving in the right direction. As I type this, she is sleeping and her saturations are 100/100.
Nurse Andrea thinks she is doing really well and feels that she just needed some time to figure out this breathing thing on her own with the nose cannula.
Psalm 28:6 6 Praise be to the LORD,
for he has heard my cry for mercy.
Thank you for continuing to pray for sweet Ella. In addition, thank you for lifting up my Mom and Jack. My heart is heavy and I am very concerned for them right now. But as the last 13 weeks has certainly taught us, it is wise to rest in Him during these times.
Philippians 4:6 6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
UPDATE (3:30pm EST) by Josh: Uncle Cliff just sent a text message to my phone letting me know that: “The fire sheriff said the area already burned (where Mary and Jack live) so they should be OK. He will go check on them soon and call (aunt) Diane back.” This sounds like good news because the last update, from them yesterday morning, indicated that the area around their house was already scorched, but they were OK.
