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Old 10-20-2018, 01:12 PM   #1051
tanto
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Continued prayers for you guys and baby Emmett


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Old 10-20-2018, 01:27 PM   #1052
solocam_aggie
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Day 69 update. Also a continuation of yesterday's update, as I left off an important topic to elaborate on today. The cardiologist came in yesterday to discuss the results of Emmett's echo. It was a kick in the stomach for us. The echo showed a new ridge that was forming near his aortic valve. Coupled with his continued hypertrophy, it prompted discussions for the possibility of open heart surgery to clean out the ridge and hypertrophy. We knew there was a chance for this in the beginning, but things were looking better and we thought we were past this possibility. It was scary information to say the least. I pray he doesn't have to undergo this surgery. If he did, they would take care of the PDA and pacemaker all at the same time.

Emmett had his MRI done today. Thankfully, they didn't have to intubate, and in a surprise they didn't have to sedate him either. He was so tired from the events of last night that he actually slept through the procedure. This was great news. Better news came when the results showed no findings. We expected this, but it's reassuring to hear nonetheless. Additionally, urine cultures are negative thus far. So it looks like yesterday was just a false alarm.

Tomorrow is a follow up eye exam. Another concerning day yet again. Praying we get good results on the exam. Another chest xray and blood gas is on order, and with clear results on these we can go back to bubble CPAP.

Once again, Krystal and I can't thank you all enough for everything. The number of items being donated for the fundraiser is unbelievable. We're blessed in so many ways.

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Old 10-20-2018, 02:02 PM   #1053
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Daily prayers up!!!!!

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Old 10-20-2018, 02:04 PM   #1054
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Prayers up for you guys
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Old 10-20-2018, 02:08 PM   #1055
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Continued prayers!
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Old 10-20-2018, 02:38 PM   #1056
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continued prayers.
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Old 10-20-2018, 02:55 PM   #1057
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He is growing!! COntinued prayers for the little guy!
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Old 10-20-2018, 06:13 PM   #1058
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Man, great pics!! I know you guys will be glad when all those tubes and tape are gone permanently!! What a handsome son you have! Thank God for him!!
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Old 10-20-2018, 09:58 PM   #1059
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Prayers Continuing for Y'all. God Bless.
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Old 10-20-2018, 10:02 PM   #1060
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Aw man! That little tooter has been through the mill, but he is so tough and still fighting. Prayers continue!!!
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Old 10-21-2018, 12:13 AM   #1061
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Continued prayers for Emmett and family.

God Bless
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Old 10-22-2018, 12:19 AM   #1062
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Day 71 update. We are finally back on bubble CPAP! His 02s are hanging out in the low 30s, so he's tolerating it well. If he can give us several consecutive days of low 02 needs, they will consider moving him to high flow nasal cannula, according to the doctor today. It seems as if we've been trying to get to that point forever now, so it will definitely be a sweet moment when it actually happens. Aside from the switch to bubble CPAP, it was a rather uneventful day. We'll certainly take it!

Amber's Angels, the organization that visited us before, dropped in today with another gift. This my friends, is the teddy bear of all teddy bears. Dad might be a little jealous of Emmett's bear actually.

Krystal and I are really looking forward to tomorrow. It will be an opportunity to meet new people who have passionately followed and prayed for our little man. An opportunity to tell so many of you thank you in person rather than through messages. This fundraiser has grown larger than we ever imagined. We can't thank you all enough.

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Old 10-22-2018, 12:20 AM   #1063
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Day 72 update. A day that will forever be embedded in our hearts and minds.

First thing this morning Emmett had a blood gas done to see how he was tolerating the move back to bubble CPAP. All numbers came back in perfect range. His oxygen was down to 26%, and stayed in the mid 20s all day! They threw a curveball at us today and did his eye exam a day early. Results showed no progression yet again! The only concern for today came from the most recent urine culture. The culture was growing a small amount of bacteria which gave the doctor reason for concern after the reaction he had to his last UTI. Although she wasn't entirely convinced it wasn't a contaminated specimen, the doctor decided to start him on a 7 day antibiotic. Another change in Emmett's care came when the doctor decided to stop his caffeine. This is common at the 35 week mark (YES, our little guy is now 35 weeks!). After the drug wears off in 4 days, we may notice some differences in his heart rate. He doesnt have many beats to spare due to the heart block, so hopefully it's not too significant.

I've sat here for the better part of 15 minutes trying to decide how start a paragraph to adequately describe today. It was the most selfless, generous, thoughtful day that we've ever been a part of. From the cooks who were up early working on that delicious chicken, to the numerous volunteers who helped set up all of the silent auction items, and to all the people who came to event, it was simply amazing. When Randy first contacted me about wanting to do this event, we would have never dreamed it would turn into what it did today. Brother, we can't tell you thank you enough. We were able to visit with so many prior friends and aquaintances. We also got to meet and make many new friends, all of whom were brought to us through Emmett's story. I know there was no way we were able to visit with everyone, and if we didn't get an opportunity to tell you thank you in person, please accept this thank you.

One day, when Emmett is old enough to grasp the complete meaning of today, we'll proudly tell him how a community came together to show their love and support of him, and how that day helped his parents more than just financially. I don't know how we'll ever repay this community for today, but we have a lifetime to work on it. From the very bottoms of our hearts, we thank you all. God bless

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Old 10-22-2018, 12:44 AM   #1064
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Continued prayers for Emmett!
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Old 10-22-2018, 09:52 AM   #1065
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What a great picture! AND a great report! Would have loved to have been there, but... I'm waiting on Emmett's first Bownanza!! THAT will be a GREAT DAY in the Lord!!

Lord, thank You for all of this. Thank You for Emmett , the precious miracle that he is. We know he is Yours Lord. Thank You for all the folks You have called into service to help Emmett and this family. We are all grateful to You Lord for it. Lord we ask You to show Colton and Krystal how to be good stewards of all that You have provided, and we lift them up to You for wisdom and the strength to persevere. Keep You work in little Emmett going so that he may grow to be strong and a witness for You Lord. In all these things, we ask and pray in the Holy Name that is above all names, Jesus Christ our Savior and Your Son, Amen...

What a great way to start my week!! Thank You Colton for allowing us to share y'all's precious son.
God Bless You all.
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Old 10-22-2018, 09:56 AM   #1066
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Continued Prayers for the little man.
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Old 10-22-2018, 10:35 AM   #1067
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Great picture and update. Little man is growing.
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Old 10-23-2018, 11:12 PM   #1068
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That's a wonderful report. It's great to see what God has done and will continue to do in this young man's life in the years to come.
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Old 10-31-2018, 07:02 AM   #1069
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Thinking about Emmett this morning. Prayers for a huge haul of candy on his first Halloween.

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Old 10-31-2018, 07:07 AM   #1070
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Happy Halloween Emmett! Hopeing and praying all is well this morning!
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Old 10-31-2018, 08:16 AM   #1071
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Fabulous Report! Prayers continuing.
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Old 10-31-2018, 08:48 AM   #1072
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Prayers sent, thank you for the updates.
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Old 10-31-2018, 09:04 AM   #1073
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New to the green screen and just seeing this thread for the first time. Awesome to see the power of prayer at work! Another prayer warrior added here for sure. Bless little Emmett and mom and dad for the continued courage and strength to persevere! You guys are awesome. God is good!
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Old 10-31-2018, 10:23 AM   #1074
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He folks. Been a little since I gave an update. Life has been getting a little busier on my end. I'll fill in a few of the important updates to get back up to speed here. Thank you all for continued prayers for our little guy.

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Old 10-31-2018, 10:24 AM   #1075
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Day 73 update. A day we've been patiently waiting on for 3 weeks now. A day that is considered a huge milestone in Emmett's progress. We. Are. On... nasal cannula!! As sweet of a moment as it is, our excitement is somewhat masked from the concern of his current oxygen requirement. He's been up to 48%, and if he hits 50% they will put him back on bubble CPAP. The greatest difficulty comes when he's receiving his milk feeds. As his stomach fills, it expands and puts pressure on his lungs. We asked the nurse if the doctor would consider lengthening his feeds, a trick we learned before to help with the pressure issue. He asked, and the doctor agreed to switch him to a continuous feed. He'll be receiving the same amount per feeding (which is now 40ml), it will just run continuous now. Hopefully this will help, and keep our little guy on cannula!

We had an incident today in Emmett's room. It was bad. Dad was called upon for a diaper change today. No big deal, I've already changed a many. But this one would be different. Peeling that diaper back, my initial thought was "ha, I got lucky." Well folks, things got unlucky in hurry. As a reached back to grab the new diaper, I heared it. I've never seen such a mess in my life. I'll spare the details, but will say it took mops, a whole pack of sanitary wipes, and bed sheets that went straight into the trash to save the poor person the surprise that would have to wash those.

We found ourselves thinking about the fundraiser throughout the day still. Once again, we would like to thank everyone who contributed to this event. It was so amazing. Thank you all for your continued thoughts and prayers. We could use a few to help keep Emmett on his cannula.

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Old 10-31-2018, 10:25 AM   #1076
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Day 74 update. Little man did it! He hung in there, and as the night gave way to day, he was able to keep his 02 below 40% the whole time. So we're still on cannula! Emmett also had a renal ultrasound today which showed improvement in his kidney function from his last check. Weight gain continues, as Emmett is up to 5lb 3oz. He's doing everything he should be doing!

One big positive resulting from the switch to nasal cannula is that we can pick Emmett up whenever we like without any assistant from the nurse. You can bet we'll be taking full advantage of that!

Looking forward, our steps look something like this: first, we need to get his feedings back to an hour. Once there, we will then have to start weaning his rate down from five to two. At two, we can then try him on his first bottle. Our elatement for nasal cannula will be equally matched when we try that first bottle feed.

Thank you all for your thoughts and prayers. Once again, they worked.

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Old 10-31-2018, 10:26 AM   #1077
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Day 80 update. As typical on eye exam days, the day was started early. Emmett's Ophthalmologist is an early bird, which I like. Following the same procedure as usual, he began his exam after Emmett's eyes were dilated. It didn't take me long to realize things had changed, as he was spending more time than usual on each eye. The report confirmed this. Disheartened, I listened as the doctor described his current condition and plan of action.

The ROP progressed significantly, and prompted the doctor to schedule treatment at the next available time, which will be tomorrow morning. As mentioned yesterday, they will begin with injections in Emmett's eye that will cause the blood vessels to stop growing. This in turn will keep the ROP from getting any worse. This is an OR procedure, done with a mild sedative and eye drops that numb the eye. After treatment, they will continue to monitor the ROP to ensure the treatment successfully stopped the abnormal blood vessel growth. As he grows and matures, he will more than likely need laser treatment down the road to permanently stop the growth of those blood vessels. Krystal and I are so worried about his long term vision from all of this. There are no treatment options to fix any damage resulting from this. If there is vision loss, Emmett will have glasses from an early age.

We have the upmost faith in the Ophthalmologist, Dr. Harper. It was obvious from day one that he was very knowledgeable and took pride in his work. We'll pray for good results, and trust in God. Thank you all for your continued thoughts and prayers.

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Old 10-31-2018, 10:27 AM   #1078
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Day 81 update. Pretty rough day. Watching the eye procedure was difficult, but I opted to just for comfort of knowing everything went smooth. Emmett was wide awake this morning, and in good spirits. Standing beside his bed playing with him, I couldn't help but feel terrible knowing his day was about to turn difficult. I reported incorrectly yesterday, as they were able to do the procedure at his bedside. After dilating his eyes, the doctor brought a camera out that would take pictures of his eye. The doctor invited me over to the screen so I could see, and explained everything in detail. You could definitely see the blood vessels that were distorted and causing concern. A mild sedative was administered, and the nurses paired up to help hold Emmett still. The doctor administered the injections in both eyes, and flushed them with iodine several times. Seeing Emmett crying in distress with iodine running down his face was one of the more difficult things I've witnessed. It was a cry I've never heard before. As soon as I could, I scooped him up and held him tight. This was able to quell his crying. Between myself, Krystal, and the nurses, Emmett was held most of the day, as he would cry whenever he was laid down. There will be a follow up eye exam Friday to ensure the injection did indeed stop the blood vessel growth.

Somehow, through all the stress and discomfort that today brought, our tough little guy actually came down on his oxygen requirements. He was weaned down to the low 30% range. The doctor said they would likely reduce his rate tomorrow back down to four if he continues to do well. He's still gaining weight well, as he's now at 5lb 11oz!

Thank you all for the extra prayers that were said for Emmett. Thank you also for all of the Facebook posts. We appreciate the support more than words can describe. Below is a picture of Emmett in his pre-halloween outfit!

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Old 10-31-2018, 10:46 AM   #1079
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Been out of town and away from the GS a while... though there were moments of concern in your reports, it is very good to see how well our little super hero is progressing!! He's one tough little boy!! Colton/Krystal, you guys are solid rocks as role models to so many!! Thank you both so very much for taking the time to keep us all informed with your updates... some of us old fogies don't do the book of faces so we really appreciate your efforts to keep us included. For me personally, it is very uplifting to be able to pray for this little man and see the almost immediate results that come from our petitions to the Lord. What an awesome God we serve and what an awesome job He is doing with Emmett!
Thanks again,
Charlie

Lord God, Thank You for this precious little boy and the miracle You are working daily through Emmett. Thank You for giving him supernatural strength to endure the healing and growing process he is going through. Thank You for his spirit of strength and fighting! Please Lord continue this good work to fulfill You plan for this sweet, sweet baby. May he grow into a strong man that is a sign and a warrior for You and Your glory! Lord specifically at this time, we ask you go clear his eyes that he may see clearly each day as it comes. Give him strong sight and strong insight into just what You have done in him and through him. Continue to guide all Emmett's care-givers to right actions to accomplish Your plan for Emmett. Lord we know You have such a strong place in Your boundless heart for the little ones, and we know that among the little ones, this one, Emmett is front and center in Your heart and You have great plans for him. Thank You Lord for being Our GOD and hearing our prayers and petitions for Emmett. Strengthen his mom and dad that they too may endure to the end of this struggle to grow Emmett into a strong young man. Give them peace knowing that You Lord are in charge and holding both of them yes all of them in Your Hand. Thank You Lord for Your Son who You gave up for us. It is in His name, Jesus Christ our Savior and our Advocate we ask and pray, Amen.
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Old 10-31-2018, 11:03 AM   #1080
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Thanks for the report Colton. Happy Halloween Emmett!
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Old 10-31-2018, 11:09 AM   #1081
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First thread I find each day! Hate to hear that about his eyes but he is one tough little guy. Continued prayers for y’all!!
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Old 10-31-2018, 11:30 AM   #1082
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Keeping little Emmett in our prayers!!
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Old 10-31-2018, 11:43 AM   #1083
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More prayers for that precious baby. Keep fighting Emmett!
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Old 10-31-2018, 11:59 AM   #1084
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Keep on fighting little buddy! Happy Halloween!
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Old 10-31-2018, 12:52 PM   #1085
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Prayers for all.
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Old 10-31-2018, 12:58 PM   #1086
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Keep it up Emmett! You got this! Happy Halloween little bro!






I'm digging the Halloween onesy!
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Old 10-31-2018, 03:29 PM   #1087
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He's growing like a weed. Almost 6lbs, wow. Hang in there little buddy.

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Old 10-31-2018, 03:52 PM   #1088
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Keepin the prayers going for y'all

That is an awesome onesie
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Old 10-31-2018, 10:16 PM   #1089
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He is a tough little man!
Continued prayers.
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Old 10-31-2018, 10:42 PM   #1090
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Still praying.

I need one of those Halloween shirts...


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Old 10-31-2018, 10:54 PM   #1091
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Prayers sent
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Old 10-31-2018, 11:00 PM   #1092
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Continued prayer for ya'll.
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Old 11-01-2018, 12:15 AM   #1093
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More prayers up for Emmett!!!!

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Old 11-01-2018, 12:23 AM   #1094
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Prayers continue!
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Old 11-01-2018, 06:16 AM   #1095
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Emmett and y’all are still in our prayers. Thank you Lord for Emmett’s progress and we ask for complete healing and good health for him. All this through our mighty Lord and Savior, Jesus Christ. Amen
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Old 11-05-2018, 06:01 PM   #1096
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Prayers up little dude!!! Stay strong!
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Old 11-05-2018, 06:23 PM   #1097
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Day 83 update. The morning started off on the right foot. Emmett's 02 was at 27%, so he was tolerating the rate of 4 really well! During rounds, the doctor boldly brought up bringing his rate down again to 3. The impeding eye exam axed that thought however, as she didn't realize it was so soon. She did say they would monitor it and see how he reacted to the exam. The eye exam gave us excellent results, as the injections were doing exactly as they should.

The cardiologist arrived at Emmett's room to discuss the results of the echo. Cardiology is far and away the most difficult to understand. With every new cardiologist that comes on we get something new to worry about. What one doctor will worry about the other won't even mention it. So the latest today from a new cardiologist is that he feels there could be a tissue build up near the aortic valve that could be imposing on that valve to make it seem smaller than it really is. One thing that seems consistent is the sense we get that heart surgery is a very likely outcome of all this. The good news is that the PDA was smaller in size, and the cardiologist was actually unable to hear it in his stethoscope.

As Krystal and I arrived back at the hospital this afternoon, the nurse was talking to us about Emmett as we were picking him up to hold him. Nonchalantly, she says "oh, and we moved his rate down to three." Krystal and I blurted out "what!?" at the same time. He was doing great on the rate, with his 02 at 31%. As we said good night to Emmett and left, he was already down to 27%. Rather abruptly, he's doing amazing on his respiratory needs now.

In other news, mom and dad may be spending their last night in the Ronald McDonald house. We were notified that as a long term occupant, we were required to leave for a week before being eligible to come back. We understand, and know there are parents out there with much more critical kids than us at the moment. We'll see how driving back and forth every day, coupled with being back at home feels, and decide from there if we want to submit another request to stay. Thank you all for your continued thoughts and prayers. As you can see in the pics, Emmett was a happy baby tonight!

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Last edited by solocam_aggie; 11-05-2018 at 06:29 PM.
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Old 11-05-2018, 06:27 PM   #1098
DUKFVR
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Prayers Continuing!
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Old 11-05-2018, 06:30 PM   #1099
solocam_aggie
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Day 84 update. Little did we know as we awoke this morning that we would be in for a complete shock today. We had no idea there was a chance this could even happen.

We still haven't officially hit the 6lb mark. I think the weight a few days ago was taken with a full bowel! He's still close though. The doctor brought us a growth chart showing where Emmett is compared to his gestational age. He's right in the 50th percentile, which is pretty good considering how early he was born and what all he's gone through. I think I've mentioned before, but while in the womb he was always in the 90th percentile.

So what was this shocking news we received today (you know I had leave you all on the edge of your seat a little )? They lowered his rate down to two! We thought there was no way they would consider moving that fast. But that's only half of it. After tolerating the new rate perfectly, the doctor came back with a "how about we try him on his first bottle?" We couldn't believe what she was saying. This was something we figured was weeks away! If you would have told us at the start of this week that we would go from a rate of five all the way down to two, and bottle feed by Friday, we would never have believed it. With a mixture of excitement and anxiety, the nurse placed the nipple near Emmett's mouth. Little man quickly latched on, and went straight to town on it! It was a top 3 most heart warming sight to see him working that bottle so well. They decided to ease him into it with 6 ml to see how he did. He sucked down that 6 ml in record speed! Everyone was so impressed with how he did.

We're unbelievably proud of our Emmett. Not only has he shocked his parents, he's shocked his whole healthcare team. We went from baby steps to giant leaps. God is so good. Thank you all for your continued thoughts and prayers!!

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Old 11-05-2018, 07:56 PM   #1100
Muskles
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Great news! Keep it up little man!

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