Please help me pray for our Emmett

[solocam_aggie]

Day 39 update. As I walked into Emmett's room and peered into his isolette to say good morning, the first thing that crossed my mind was "wow he looks big!" I glanced up at his chart on the wall and seen he gained 50 grams. A quick conversion on the phone proved Emmett to have eclipsed 3 lbs! That breast milk is doing some good. The doctor ordered a blood gas and complete blood count (CBC). The blood gas report came back great, as did the CBC. It was looking to be another great day...

The neonatal doctor came in to talk to me about a discussion that was had amongst the infectious control doctors. There were differing opinions on the oral regiment of Emmett's medication. It was finally agreed upon that if they performed an MRI to double check the area of concern that showed up on the last MRI, they would all buy in to continuing the oral treatment. This completely blindsided us, as we thought the spot that showed up was nothing to be concerned with. So not only does Emmett have to be sedated for another MRI, he has to have another IV line put in AND has to be reintubated. This was really hard for me to come to terms with. There is so much stress and risk involved in this just to double check something. Plus, for one doctor to be completely ok with it then the next to have all these concerns made it difficult to understand. I hesitantly signed the consent.

The thought of putting our baby under sedation again scares us. Along with the general risks associated with doing such, I can't help but worry about what this could be doing to him from a developmental stand point. Maybe it's nothing, but mind goes there. The MRI has to be done on an empty stomach, so they will have to stop his feeds and start him back on TPN. I doubt I'll be able to watch them reintubate him again, as last time was one of the more difficult things I've watched.

If you have a second, please join us in prayer that tomorrow goes smoothly. We pray that Emmett tolerates the procedure well, and that no damage results from being reintubated or sedated. We pray the results come back clear as expected. Thank you.

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[solocam_aggie]

Day 40 update. Another worry filled night had passed. I'm in Emmett's room first thing in the morning discussing the plans for the MRI with his healthcare team. With the IV line already in, next up was intubation. Watching an intubation on your child is tough. I debated watching this one too, but ultimately decided I would have more anxiety not being there. The sedation will cause him to stop breathing, so they are forced to bag Emmett until the breathing tube is in place. Equally difficult is watching Emmett lying there motionless; his life squarely in the hands of the people in front of you. The doctor was able to guide the tube to its proper destination, and they hooked Emmett up to the ventilator. With the IV line in, intubated, and sedated, I kissed his little head as they took him away for the MRI.

After about 5 hours we learned the results had came in from the MRI, and the doctor would be coming to discuss them with us. Emmett tolerated the procedure without any incidents. They were also able to extubate him not long after the procedure. As the doctor entered, the all too familiar gut wrenching anxiety was prevalent once more. Wading through the doctor jargon, we were relieved to learn that nothing of concern was found with the MRI. The spot from last time showed signs of healing, but did not "light up" from the contrast indicating an active bleed or infection. Once more, our prayers were answered. God is good.

Emmett spent the rest of the day trying to recover from the procedure. Emmett continues to feel the effects of the sedation, as upon the last hour of the day he continues to struggle with breathing and O2 requirements. Having to withhold his milk feeds for so long, we'll likely have to re-celebrate the 3 lb mark. They did start his feeds back up, but only half of what he was originally receiving due to his struggles.

I was able to mask my concern and put on a smile for a picture with Emmett. The nurses are really hands on here, and recommend we get a picture. I'm glad they did. Thank you all for the thoughts and prayers again. It seems as if we made it though another bump in the road.

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[solocam_aggie]

Day 41 update. Overall, albeit some oxygen struggles, Emmett had a good day. He was placed back on full milk feeds come morning. Despite yesterday's events, Emmett somehow managed to put weight on, coming in at 3 lbs 2 oz. His growth has been so encouraging to us. Everyone is talking about how big he looks. You know you had micro preemie when 3 lbs looks big.

The infectious disease doctor came to further discuss the results of the MRI. She confirmed how pleased she was of the results, and felt confident that this infection is beat. We were reassured that although there can be no guarantees, the likelihood of there being permanent damage from the area of concern on his original MRI is slim. It seems disaster was averted here.

With the events of the past two days, I'm pretty worn down from lack of sleep. This update will be a little sparse in content, but I'll make it up in pictures! Today was a big day, as daddy was able to give Emmett his first official bath. Then mom was able to hold him in her arms. These both made for plenty of picture opportunities. A visit from Pastor Daniel of Bateman Baptist, a fews calls from some amazing people offering some extraordinary things, and Emmett doing well made the day a special one. Thank you all!

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[solocam_aggie]

Day 43 update. The day started with a conversation with the infectious disease doctor regarding yesterday's events. Her thought was that if Emmett had another spike in temperature, we would start him on antibiotics for precautionary measures. She also mentioned that because of the first MRI finding, she was extending his anti-fungal medication till October 17th. This was a little disappointing, as we were looking forward to him being off all medications. But we understand the risk far outweighs this.

So the day was spent anxiously awaiting each temp check. One after another, they all came back in range! Thank goodness. Additionally, his blood culture hasn't shown any growth thus far. If you recall from previous posts, we need 48 hours for it to be a true negative. Emmett's oxygen requirements were great again, as discussions have began about switching him to bubble CPAP from his vent assisted CPAP. We were also encouraged by some other bit of information. Emmett has impressed by his ability to pick his head up and turn it over. Plus he will push his booty up in the air by stiffening his legs. This apparently is a great neurological sign!

We have been once again blown away by the generosity of everyone. A friend from Elgin, Randy, reached out to me wanting to host a fundraiser for Emmett. This was such an amazing gesture. In no time, Randy put a team together and got to work. Folks quickly jumped on board to help. I'm convinced we live in some of the greatest communities that can be found. There are so many awesome people out there who care for us and our Emmett. We're blessed to be able to call all of you friends and family. Thank you, thank you, thank you!!

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[solocam_aggie]

Day 44 update. Most of the day was spent rejoicing in Emmett's good health! The blood culture was officially negative at 2 pm. Good job little man! He gained another oz today, putting him at 3 lbs 3 oz. The doctor during rounds ordered Emmett's rate to 10, which is very little extra support in breathing. Barring no setbacks, the plan is to get Emmett back on bubble CPAP. This is a positive step towards getting off the CPAP completely. Emmett's last lung xray showed room for improvement, which is why they are delaying bubble CPAP to hopefully clear them up. Several folks have asked about Emmett's length, and were told he's 16" today. So he's growing nicely. We spoke to the neonatologist about setting up a meeting with the cardiologist and electrophysiologist to have an in depth discussion about the different conditions of Emmett's heart and what the plan is to address them down the road. We're looking forward to this discussion.

Mom was able to give Emmett his second bath today. Just like the first, he seemed to really enjoy it. I'm not sure who enjoyed it more, mom or Emmett. Krystal's smile was as wide as I've seen in a while.

As we were leaving Emmett's room, he did have a minor apnea and bradycardia event. This concerns us, as the last time he had one of these he had a terrible blood infection. We stopped by the chapel to say a quick prayer for Emmett. Thank you all for the continued thoughts and prayers.

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[solocam_aggie]

Day 47 update. A harsh reminder to cherish each good day, as things can abruptly change in the blink of an eye. Around lunchtime, my mom who was visiting and I headed out to grab a bite to eat. I gave Emmett's foot a slight squeeze, and told him I would be right back. In the roughly 1 hour that had lapsed since leaving, Emmett took a hard turn for the worse. He had two apnea and bradycardia spells, and turned very lethargic and pale. The doctor ordered a CBC (complete blood count) and blood gas, to which the blood gas came back with elevated C02. Next came the CBC, and like last time when Emmett came down with the infection, it came back with low platelet counts. A repeat blood gas was done that was more accurate, and this test came back with a dangerously high C02. This prompted a full mobilization of the healthcare team. The doctor warned us that changes were coming to Emmett's healthcare, starting with intubation and ventilator. It seemed like we were reliving the nightmare that we went through earlier this month.

The doctor ordered a complete panel on Emmett. They are checking for anything and everything. So with this came many blood draws, 2 IV lines, heel pricks every 30 mins to an hour. They swabbed his mouth for RSV, a respiratory virus. Blood cultures will give us an idea tomorrow afternoon of what we're dealing with. They started Emmett on a strong antibiotic regiment, to hopefully get the jump on any infection. The ID doctor ordered him back on the stronger medication for the fungal infection, incase it was rearing its ugly head again. After all of this, Emmett's blood pressure begin dropping due to the lack of blood. Then there was a blood transfusion for this. After maxing out the settings of the less evasive ventilator and still not bringing his C02 down, they had to bring out the high frequency ventilator.

This is indescribably disappointing and scary. The sound of this high frequency ventilator takes us back to when he was born; the long nights sitting fearfully by Emmett's bed praying. He hasn't been on this type of support since he was 4 days old. They completely erased his care board, as none of it applies anymore. We are basically starting back over, once again. Extremely high C02 can cause damage to organs, including the brain. With neurological development being a top concern for us, we feel deflated.

With a desperate plea, we are asking for revamped prayers for Emmett. Praying that whatever he has is nothing serious. Praying that he's able to get over this quickly. Praying God continues to give him the strength and fight to carry on. Our little miracle gathered just enough strength to open his eyes for a picture. Krystal and I mustered just enough strength to stave off a complete meltdown.

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[lovemylegacy]

Prayers continued.

I believe it wont be long and yall will be taking him home.

[bigmike585]

Sent

[Olympic Recurve]

More prayers up

[kdenhead]

Prayers for Emmett. May God comfort you.

[txheartshot]

I’m praying hard for Emmett tonight, as well as you and your wife.


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[Cazador]

Prayers continue for growth and strength for Emmit, and for peace, comfort, strength and understanding for mom and dad too. God bless y’all!

[porkrind]

Continued Prayers

[tradtiger]

Redoubled prayers for Emmett, y'all and the medical team.

[fbchunter]

You guys hang in there and remember we are here with y’all. God, we join together in asking for strength, comfort, and complete and supernatural healing that only you can provide for Emmett. We pray for Emmett’s mom and Dad, and all family to have strength, comfort, peace and courage. We pray for his doctors and all caregivers involved, that they may be guided by you in their decisions. Praying all this through our mighty Lord and Savior, Jesus Christ. Amen