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Posted ( jooosh) in All Posts on September-3-2007
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Our baby girl had another good night and her day is starting off on the right track. Her daily fluid output continues to reduce, from 390 to 340cc’s. She hasn’t needed as much suctioning and her blood gases look great (cO2 = 43, pO2 = 114). Keep going Ella! If you didn’t get a chance to see yesterday’s post, you’ll want to check it out. I know I’m biased, but the video is just a little cute =).
Also of note, today is an anniversary for Tina and I because on September 3, 1990 I asked her to be my girlfriend. When I asked, I committed that we would have to make God number one in our lives with communication second. Tina was getting ready to start her senior year in high-school. The picture above is us at her prom, and the other was taken since we’ve been out here. 17 years later, here we are. What an amazing journey.
Lord Jesus, we praise You for this incredible life You have ordained for us. You are such an awesome God. We rest in You, trust in You, and thank You for an extraordinary 17 years together. We ask that You continue to guide us forward so that we may become the husband, wife, and parents that You desire us to be. We know You only want the best for us Lord, therefore we surrender completely to You. May we be a witness of Your love to all we encounter. We love you Lord. Amen.
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Posted ( Tina) in All Posts on September-3-2007
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Ella had another great day. Her stats (high 90’s) and blood gases (cO2 = 47, pO2 = 114) maintained so well that Dr. Kays reduced the FiO2 on the ventilator to 55 earlier today. As of late tonight, she was still maintaining quite well.
Another change: Dr. Kays increased the amount of octreotide (the medicine given to reduce fluids). Originally, he was giving 3.5; he doubled the dosage to 7. This is the maximum amount that a baby of her size can receive.
Although we have had really good results with the fluid reduction so far, he still wants to see her fluids way less. His immediate goal is to have her fluid output under 300 per day. As of the last 24 hour period, it was 340. The results for 9/2 will be available at 7am tomorrow morning.
It will take a few days to see the maximum impact from the highest dosage of octreotide. From there, we will be able to tell if the fluid reduction has been sufficient enough or if we need to consider other therapies.
Within the next few days we also expect to hear from Dr. Kays on whether or not he is recommending another “balloon” treatment for her collapsed superior vena cava (SVC syndrome). Our hope is that the head swelling has reduced enough that we can skip that procedure all together, but we will have to wait and see.
One side note: when we first saw Ella today, we noted that she had inadvertently scratched her cheek. Her nails were getting so long and due to the blood thinner, you cannot clip her nails. But, we found out that we could file her nails.
So, yes, Ella had her first manicure in the NICU as Mom filed down her nails! She was alert, looking around and staring at her monkeys while I worked on her hands. The pictures did not turn out well, but trust me, it was pretty cute.
Thanks for the continued prayers for Ella – – they are working! We are seeing God slowly restore her strength and heal her body.
It has been an amazing journey…we thank you for participating with us.
P.S. I know many were gone for the holiday weekend, so if you didn’t get a chance to see Sunday’s post, you’ll want to check it out. The video is cute and really shows Ella’s progress =).
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Posted ( Tina) in All Posts on September-4-2007
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I’ll start this post by mentioning that if you didn’t get a chance to see Sunday’s post, you’ll want to check it out. It is the best way to see how far Ella has come and how all those prayers are working =).
I just called to get an update on Ella. Praise God – – her fluid output was only 215 for all of yesterday! I know that Dr. Kays wanted to see it under 300, so this is really great progress. If you remember, she had as much as 892 last Tuesday. That is amazing.
Her blood gases have not been quite as good since they turned down the ventilator, but are still definitely in the “good” range. Her cO2 was 55 (they like to see it around 40) and her pO2 was 94 (they like to see that number as high as possible). She is scheduled for another blood gas at noon, so hopefully those numbers will sustain.
She had a chest xray this at 4am this morning and is scheduled for another xray tomorrow morning. I am sure these were ordered by Dr. Kays so he can monitor and see how the reduction in fluid is impacting her lungs.
We really hope to hear from Dr. Kays today. We want to know what the plan of action is for her next milestone!
P.S. Last night we had the opportunity of hanging out with Clay and Julie Brantley (Jordan’s parents). If you remember, Jordan was born on August 1st, was in the NICU III until August 20th right next to Ella, and then moved to the NICU II. She has progressed so well, that they are looking to take her home this week! Such an exciting time for them – – thanks for all the prayers lifting up Jordan.
UPDATE (12:15pm EST): Ella is being switched to a normal ventilator right now. This is another big milestone. She may not tolerate it too well, but it’s a necessary step. Please pray for success during this transition.
UPDATE (1:30pm EST): Ella is so far maintaining on the standard ventilator, but this could change at any time. Dr. Kays said to not worry if she has to go back to the other vent, but so far so good. Go Ella!
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Posted ( jooosh) in All Posts on September-4-2007
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Not that I had any doubt about Ella being Tina’s daughter (you don’t see many “maternity” tests beyond what I’ve witnessed), but I’m not the one who sleeps with his mouth open ;-). I’ve teased Tina about watching a spider spin a web in her mouth, catch a few flies, and close up shop before she wakes up. They’re both real cute when they do it though.
So…how is Ella doing?
Ella looks AWESOME! THANK YOU LORD! She has been rockin’ stable on the standard vent. Her absolute cuteness has maintained as well =). We’re both on a three day high of good Ella progress. We’d be happy if the rest of our days here continued in the same vein, but we have to expect some more challenges.
Tina helped nurse Michelle with the 8:00pm “hands on” by changing Ella’s diaper, weighing her, and switching out her bed blankets. Ella tolerated it well without any major fussing. Once the needle came out for Ella’s shot, I suddenly became very thirsty and wandered over to the drinking fountain in the other room. After getting the “all clear”, I came back and Ella was sleeping again.
She was very active today. She was up for a few hours early this morning, and again most of the afternoon. I think that’s why she was so zonked out while we were there tonight.
Tina’s co-worker, Ani, came to visit us and see how our baby girl was doing. She picked a good day to see her. She looked for a monkey to bring Ella, but opted for a bear instead. I decided to name the bear Ina (eee-nuh). Do you see how I creatively flipped Ani’s name around? Yeah…I got’s me some talent. We really enjoyed our time with Ani.
Even though our baby girl is making good progress, she still has a long road ahead. Please continue to think of us in your prayers, they make a huge difference. We thank you for continuing to endure this marathon with us. God Bless you all.
Matthew 18:19-20
19 “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20 For where two or three come together in my name, there am I with them.”
P.S. Something else to note…a minor crime has been committed in the NICU. If you remember our friends from Atlanta brought us a University of Georgia Mascot to join Ella’s Zoo. Well, I thought something like this might happen but…Uga the dog is missing!!!! I think a gator may have gotten a hold of him, but we’ll have to see. To be continued…=)
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Posted ( Tina) in All Posts on September-5-2007
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All good news to share this morning.
Ella is sustaining on the new ventilator incredibly well. They took a blood gas this morning – – it was too good (cO2 = 47, pO2= 223). The amount of oxygen in her blood was surprisingly high, so Dr. Kays reduced the assisted oxygen on the ventilator from 60% to 50%. This is amazing progress for Ella.
Also, her fluids are still decreasing. A total of 145 for yesterday, down from 215 (the highest was 892 last week).
Thanks so much for the prayers that continue for sweet Ella.
Deuteronomy 10:20-22
20 Fear the LORD your God and serve him. Hold fast to him and take your oaths in his name. 21 He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.
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Posted ( jooosh) in All Posts on September-5-2007
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Wow…Ella is still rockin’ the casbah =). We were able to enjoy a couple hours of her being awake tonight. Tina and nurse Michelle gave her a little bath, and Ella did so well with the whole experience.
Her stats stayed strong throughout the day. The last blood gas at 10pm was solid (cO2=43, pO2=154). If her next blood gas is this good in the morning, she’ll probably be weened down on the ventilator again. Slow and steady baby girl, slow and steady.
Some of you were curious about her weight. Ella has gained 1lb 1oz since her birth! She is now 6lbs 7oz. Still need to fatten her up though.
The swelling in her head has definitely gone down along with the rest of her body. If she keeps on this track the next few days, they’ll consider removing her chest tubes. The SVC procedure has also been delayed. It will be re-evaluated next week to determine if it’s necessary. I’m betting they don’t do it though because the octreotide is working real well.
The dopamine and albumen have been removed from her regiment of meds. She still has quite a few other meds going in, but at least we’re moving in the right direction.
Nurse Michelle also told us that our other favorite nurses will be taking care of Ella the next couple days. It’s so nice to have the “Fab Four” taking care of our little girl. It really gives us both peace of mind. There is genuine compassion and love that comes from these ladies. Michelle, Angie, Andrea, and Janet really make a difference to us and Ella. They are such wonderful nurses and we thank God for them!
The continued prayers are greatly appreciated. So much grace and peace is delivered through them. God bless you all.
Numbers 6:24-26 (NKJV)
24 βThe LORD bless you and keep you;
25 The LORD make His face shine upon you,
And be gracious to you;
26 The LORD lift up His countenance upon you,
And give you peace.ββ
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Posted ( jooosh) in All Posts on September-6-2007
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Ella knocked her stats out of the park again this morning. Her blood gases were fantastic (cO2=49, pO2=215!). Dr. Kays has weened her down on the vent even more now, reducing the oxygen input to 45%.
Her total fluid output is down another 40cc’s. She was at 145 yesterday, and 105 today. This number still needs to reduce some more before her chest tubes can be removed, but our baby girl is on the right track.
Nurse Andrea is on today. She hadn’t been with Ella since last week, so seeing how well Ella is doing today was a pleasant surprise for her.
I keep teasing about taking our baby girl home. Just snatching her up and running away with her. I was ready yesterday, but God is not through with us being out here yet.
Please pray that Ella’s fluids to continue to reduce and for the Lord’s will to be done in our lives in the coming weeks. Thanks.
BTW: Uga has come home. Looks like he was lost under some of the blankets behind Ella’s bed. I know the Richard’s will be resting easier now. π
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Posted ( Tina) in All Posts on September-6-2007
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Ella is still holding on strong! I keep feeling like I need to pinch myself. It is so great to see how God is working.
Her afternoon blood gases were incredible. So when Dr. Kays checked on her before he left the hospital for the evening, he went to the ventilator and weened it further. Her oxygen is now at 40% – – this is the lowest amount ever for her! She will have another blood gas at 10pm and we will see what those turn out to be.
Ella’s fluid output looked like it might turn out to be close to the same amount as yesterday, 105. Dr. Kays wants to see that go to zero. If her fluid output is not less by 7am tomorrow morning, he plans to increase the octreotide medicine. She is at the maximum dosage that was used in the research studies, but since there are no known side effects and it might help, he wants to try increasing the dosage even further.
Nurse Janet is taking care of Ella tonight (one of the “Fab Four”), so we are resting well knowing that she is in good hands.
Thanks for the earnest prayers of many.
Hebrews 10:23
23 Let us hold unswervingly to the hope we profess, for he who promised is faithful.
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Posted ( Tina) in All Posts on September-7-2007
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Ella had a great night with Nurse Janet. Now, she is under Nurse Andrea’s care again today. We like it when the “Fab Four” are taking care of Ella!
Her blood gas this morning at 6am was fabulous (cO2=51, pO2=140). This is great news considering that the oxygen on the vent is turned down to 40%. Slow and steady steps each day. We will see what her blood gas is at 2pm.
Unfortunately, her fluid output increased from yesterday. It was 105 the day before and yesterday it increased slightly to 120. Although Dr. Kays has not given the order this morning, it is fully expected that he will increase the octreotide medicine soon.
Again, this is a bit of a mystery since Ella is the first CDH baby under Dr. Kays to have this much of a fluid issue since her repair surgery. Most babies have some fluid for a few days after the repair surgery and most resolves itself. If not, then typically the chest tubes resolve the issue. We are the first to try the octreotide under Dr. Kays, which has given us tremendous progress. Please pray that the fluid will go away with the increased amount of octreotide.
I think we need to revert back to Ella’s cousin’s chant. Using Claire’s words during ECMO days, maybe we need to just update the lyrics, “Go Ella! Go Ella! No fluid! No fluid!”
Thanks for all the thoughts and prayers. They are invaluable to us during this time.
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Posted ( jooosh) in All Posts on September-7-2007
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Overall, Ella continues with her forward progress. Her blood gases look good (cO2=50, pO2=128) and her stats have been stable.
Dr. Kays also reduced the pressures on the vent and reduced her assisted breaths per minute down to 36. Ella takes about 60 breaths per min while sleeping, so 24 of those she does on her own. As she continues to improve, they’ll be able to reduce the assisted breaths, pressures, and amount of oxygen the ventilator gives her.
Ella also had her octreotide increased from 7mL to 10mL. We pray this will bump her fluids down again like it did before, hopefully totally eliminating her output.
We were happy to find nurse Janet taking the night shift. We’ve spent the last few hours with her. It’s 10:10pm here and we’ve not had dinner yet, so going to keep the post short tonight.
God Bless
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