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."
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.
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.
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 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.
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!
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 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!
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!
When we called to check on her night and morning, we were greeted with good news. Ella’s saturations are 99/100%. Her last blood gas was pH level of 7.39, cO2=55, pO2=66. This isn’t great but the nurse stated that she was a bit agitated right beforehand.
Her feeding tube did get plugged so they had to clear it out. Ella’s food was stopped for a couple hours, but she picked right back up where she left off. For the past 24 hours, they have not had to give her any extra sedation to calm her down.
Since they don’t have the catheter, they simply weigh the diapers. With Ella’s increased feedings at 14ccs per hour, the increased amount of “urine” output also includes any poop! So, yesterday she had a total of 498ccs! That is definitely the highest we have heard yet!
Her total chest fluid output for the past 24 hours was 17.5. Go Ella! No fluid! Go Ella! No fluid!
It’s Saturday and game day. Yes, the Gators are playing today as well as Uncle Rick’s alma mater, the USC Trojans. Ella decided that she wants to vote for the Trojans. I can’t imagine why!
We are still holding on to this roller coaster ride. The ride for the past several days has been much smoother.
Ella had a stable night and morning. She continues to take very small but significant baby steps in the right direction.
Her chest tube output for yesterday was in the 20’s. We are still holding tight that God will either decide to make the fluid issue simply go away on its own or give Dr. Kays the wisdom to take other steps to correct the problem.
Ella’s lungs are responding and behaving in a way that gives us great hope. We just need to have the chylothorax condition resolved.
Each morning and throughout the day, the Lord is just calling us to obey Him and to draw near to Him. Also, to be patient and endure during this time.
Thank you for your continued prayers. We plan to visit Ella this evening and will post another update below.
Romans 15:4 For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope.
p.s. Uncle Rick and Cousin Megan went exploring the good ol’ Florida outdoors on a canoe adventure today while Josh & I work – – we hope for them to return unscathed from any gators! 🙂
UPDATE 2:30AM (EST) by Josh: Ella’s doing the best we’ve ever seen! Her stats look good, and she looks great.
We were all there really late tonight because the little Bun just wouldn’t go to sleep. She was so alert and awake, totally engaging both of us. We tried and tried, and finally after 45 mins, she zonked out.
Those eyes are like tractor beams when they’re open. There’s no way to leave her when she’s awake :-).
We’ve been enjoying our time with Uncle Rick and Cousin Megan. While Tina and I worked, they had some fun and went on a little canoing adventure (see the great pics of Megan and the turtles below).
