The End of the Story

285 days. 285 days till the world stopped spinning. 287 days till the end of the ride. The end of our long, and heart-wrenching journey. 287 days with the love of our life in miniature form. It's the day we say goodbye. 

To keep a very sad and long story short, we redirected cares for our sweet Bear. ENT came and spoke with us on Monday. Putting all of the lymphatics aside, the pressure and oxygen she needs to stay alive are too much for a tracheostomy. She likely wouldn't survive surgery, but she would be even less likely to survive after. A trach collar would be needed to keep the trach in place, as Brigette has no neck real-estate. This would just put extra pressure on her lymphatics. So we made a very hard decision to let our sweet girl go. She fought a long, and hard fight. A true warrior inside. With people who loved her beside her every step of the way. 

After a long 287 days, on 2/5/2025, at 6:15pm, Brigette joined God and his army in Heaven. We are thankful for all the love, support and prayers we've received throughout. We're okay, we're surviving. We'll reach out when we can. Thank you for all the love. We will forever love and miss our little Brigette-Bear.

This day has come far too soon and far too fast. Brigette's condition has worsened over the last 10 days. She has gone from breath with high flow oxygen to needing to be intubated. Her lungs and heart are struggling to function properly. I, Grandma, am currently in route to Indianapolis to be with Isaiah and Jayme as they move Brigette to Palliative care or comfort care. This is not how we expected this week to go, but here we are. 

We believe that God is a God of Healing and Miracles. But we also believe that sometimes healing comes with God healing us in heaven. We haven't given up on a divine miracle but we trust that God will take her at the right time. And as prepared as we can be, the sadness is still overwhelming. 

Please pray for Brigette, that God will take her, at just the right moment, in His timing and will. Pray that Mom and Dad can have a little more time with her but that she will not suffer. Pray for Isaiah and Jayme, their hearts are broken. Pray that God will be with them through this most painful part of the journey. Pray that God gives them peace and healing over time, and that they allow themselves time to grieve. 

We thank all of you for being part of this extremely hard journey. We will post another update in the next 24 hours.

Dec. 10th 2024

Today marks 9 days that Little Baby Brigette has been off her ventilator and on high flow oxygen. A couple months ago, we didn't know if this day would ever come. But now Brigette is a pro at it. They are even able to lower her oxygen further as her lungs get stronger and she can breathe on her own. 

Brigette's swelling is down and she finally looks like a infant. Her eyes are open, and she loves looking at Mom and Dad. She is finding her voice, which wasn't possible before with all her tubes. She gets to do lots of baby things now, like swing and have tummy time and get lots of Mommy snuggles. Her life has changed drastically in the last 10 days. And she is proving that she is ready!

Thank you all who have prayed for Baby Brigette and her mom and dad. We are all so thankful for what God has done in Baby Bs life. We are still praying that she will be home for Christmas. In fact, Christmas Eve will be her 8 month birthday. What a miracle it would be for them to all be home together!!!

Please continue to pray for God's healing. There are a couple more steps and the high flow oxygen that still need to be weaned before Brigette could go home. Pray that there will be no complications in the next steps for Baby B. Pray that Mom and Dad can preserve through the fears and worries of further complications. Pray that the Drs will continue to have wisdom in her treatment. Lastly pray for this coming New Year, that it will be filled with lots of joy for the Schevola Family!

Please continue also to give. The expenses of further medical care for Brigette are unknown. This Christmas season, give a special gift, if you can, for Baby Brigette's first Christmas and celebrate with us!!!

Thank you everyone for being part of this story

A Huge Thank you to all who have given to help Isaiah, Jayme, and Baby Brigette. Thank you to all who have continued to pray, love, donate while Brigette is still in the hospital. 7+ months ago we didn't know how this would go.

Now, today I (grandma) feel scary anticipation, similar to the day Brigette was born. How exciting and scary it was waiting and praying for news of her successful birth. Today I sit, looking at our Christmas tree, praying for tomorrow, and remembering the year.

Tomorrow is a big day. They plan to extubated Brigette and move her to high flow oxygen. We don't know how successful it will be. A day, a week, a month, forever!? The possibility that she could be free from the tubes and start moving forward is exciting. The waiting stage might be over!? It's so exciting, that she might be able to breathe on her own. But scary at the same time. What if it fails? What's next? More waiting? A New Path? The disappointment and heartache for Isaiah and Jayme, would be almost too much. When we step out and take a chance, we have to know that there is a chance of failure. 

So, how have we (mom,dad,family) prepared for today, for the best chance at success?

1. We have prayed. There is an amazing group of Christian from all over the country, praying that Brigette will be home by Christmas. And we know that God can make that happen. So please join us in praying for success for tomorrow and that Brigette makes it home by Christmas.

2. We have waited. Since June or July, I feel we have been in the waiting stage. We were waiting for Brigette to grow, for more information, for a second opinion, for the swelling to go down, for answers to all the questions. 

3. We have listened. Since before Brigette was born, we have been listening and learning. We were listening to the experts, learning the language of the NICU, listening to Drs who just don't know, and learning to advocate for Baby Brigette to keep everything on track. 

So please continue to pray, and wait, and listen with us. We will send out another update tomorrow, once we have heard the results.

Update from Jayme- Thanksgiving 2024

A year ago, when we found out I was pregnant, we never expected Thanksgiving 2024 to be like this. Spent in a hospital room watching our firstborn, lay in bed intubated where she's been for the past 200 some odd days. We never expected to meet so many amazing nurses, respiratory therapists, nurse practitioners, receptionists and security guards. But this is where we are; this is where and how we spend the holidays. 

A boring holiday week led to another wean of Brigette's pressure support. If all goes well with this wean, on Monday, she'll be extubated to high flow Oxygen. This would be a game changer. We can hold her without asking, we can sit her in a swing or chair. We can do tummy time. She can be as normal of a baby as she can. If Brigette can get extubated, and stay extubated, we can slowly wean and maybe avoid a tracheostomy. Everyone is nervous and excited, because we don't know if she can do it, but she's surprised us before. Please pray, or wish, or hope, for the best path to be shown to us! 

We're so thankful for our nurses, our primaries. I genuinely can't ever thank them enough. For sitting with Brigette unswaddled when we're away for lunch, for rocking her and getting carpal tunnel. For bringing us Thanksgiving dinner when we can't have our own. For making cards, and Thanksgiving attire to celebrate even when I dont want too... because Brigette deserves a good first Thanksgiving. For loving her like their own family, and for loving us like friends who can't be friends. They are truly such special people. I couldn't have done these 200 days without them. 

I'm thankful for the nurse practitioners who cry with me. Who laugh with me and joke about how spicy Brigette is. The nurse practitioners who would fight the neonatologists if they thought they weren't doing what Brigette needed. The ones who brought us gifts for her 100 days, my birthday, and Thanksgiving. I couldn't have fought these 200 days without them either. 

I'm thankful for the respiratory therapists who help my daughter breathe. Who "beat" her with love. I'm thankful for the receptionists and the security guards who see me everyday, and ask how I'm doing, how the weather is and what's new. Just small to keep things fresh. I'm thankful for the Ronald McDonald House and the volunteers, who selflessly do what needs done even if they sometimes put up with a lot of grossness just for people like me to have a place to stay every night. It's the little things I'm thankful for. 

I'm thankful for the family, friends and loved ones who continue to think about us, pray about us and send love our way. Those who haven't ever met my lil girl, some of whom haven't ever met us and still want the absolute best for our family. The "support staff" we really couldn't do without. We really couldn't have survived these 200 days without all of you. So thank you. I won't ever be able to show you all how truly appreciative we are. 

Finally, I'm thankful for my little family. My sweet firey daughter, and my wonderful husband. All of us who deal with our own problems to share the burden with each other. Having to be away and work, having to advocate and remember the little things, or having to be the guinea pig. None of us could do this alone. We love her, and she loves us. I'm thankful for the love we've had and continue to receive. It was a good Turkey day, even if it wasn't how we imagined it would be.

151 days on this journey. 114 days since I've been home. 21 weeks and 4 days, since my little 25+2 week baby was born... and we're still going. We are beyond ready to bring her home, to do normal baby things, to do normal first time parent things, but instead we are still on this medically complex roller-coaster ride. 

As soon as we get over the pneumatosis and tummy issues, getting Brigette back on track for growing, we're once again hit backwards. On Thursday night into Friday, the staff was hanging new meds for Brigette's sedation and at some point a leak was created. This wasn't caught right away, but they started seeing signs in Brigette not being her normal self. She was pressure limiting on the vent, not getting enough Oxygen, so they changed vent settings which made her head blow up like a balloon. They thought this would help her. She had to be bagged twice, and paralyzed twice to try and give her a hard reset. It wasn't until 10am during rounds that the leak in her sedation was discovered. So, all of her sedation went up, and she received extra sedation every hour for 4 hours. After that, she recieved every extra sedation she could have as soon as they were available to have. 

We're still seeing the after affects of Friday night, today. Her Xrays and blood gases have been worse. Her oxygen support needs have gone up. Her agitation and general uncomfortablity have gone up. Her vent settings have changed all over the place to try and help her get back to "her normal". Her sedations have changed to try and help get her comfortable, as the staff was hoping switching her to a dairy free, broken down formula would help her agitation and her head. She's back on breast milk as there was no change in her agitation or head size until the vent changes were made. Originally the staff tried to help her by increasing her pressure support which lead to her head doubling in size. 

Everything these past two weeks has been a "fingers crossed, we're hoping this works" but no real answers or solutions.

I want to be home with my dogs, my cats, my husband, and most importantly my baby. I want to watch her learn to roll over, to play with toys and be curious. I want to hear her cry and wake me up in the middle of the night because she's hungry or hear her coo because she's awake and happy. I want to see her eyes. I want the things others take for granted. We have completely different milestones, medical milestones she'll have to accomplish on top of her normal baby milestones. 

It's day 122 in the NICU, and it feels like it's been forever since we started this journey. This past week has felt exceptionally long, and we still have a long way to go. 

On Friday last week, Brigette became a legend around the NICU. She somehow pulled out her sutured in central line in her leg, with her toes. She used her toes to rip out a suture, and have the other half twisted upside down, with the whole line that goes to her heart, in the bed next to her. Needless to say, someone wasn't happy that she was cut off from her sedation cold turkey. It took hours to get a new line placed, so she was a grumpy gal. She ended up settling and being a happy baby the rest of the weekend into the week. 

Tuesday came around, and the BPD team discussed what to do with her lungs. They decided she needed to go up on her vent pressures because "that's when her lungs looked best". We were pretty confused, as we thought everything was stable with her lungs. No one had mentioned anything about them getting worse and needing to make drastic changes. 

Of course these changes hit B hard. She was super agitated Tuesday night and Wednesday. Who can blame her? Her head was a bowling ball, and now she can't even open her eyes a crack because they're so puffy. She was so agitated that we had to increase her sedation... something we hadn't touched since 7/31. We even had to add another source of sedation to help with her agitation. This hurt us both, watching Brigette struggle and cry to get comfortable with no relief and with no answers as to why this all had to happen. 

Finally a senior doctor who decided the change was necessary came to talk to us on Friday, to explain why we needed to up her pressures. This took far too long to happen, a change made on Tuesday wasn't properly explained until Friday. It's something her lungs need to keep them open and allow her to properly exhale. They believe that eventually her head swelling should come down as her lungs remove stale air. 

This whole process has been exhausting. Watching our lil girl struggle and fight for 122 days is truly an awful torture method... and it's just going to get worse before it gets better. We have a long, long way to go. We need thoughts, prayers, and all the love we can to keep going. For Brigette's lungs to continue to heal and grow, for her to be comfortable. For us to continue to be here and advocate for her, away from our home, our pets, and our friends. Parenthood is all about sacrifice and we are trying our best to keep going for her, because she deserves it. Brigette's a great kid and is so loved in the NICU. There's a plan for her and for us, and we just have to push on through.

On Tues Lil B turned 2 months old. As of today, she has been at the NICU 64 days. She currently is weighting in at 3lbs 11oz. She is still at Riley Children's Hospital, 4 weeks tomorrow. And it looks like where she is staying for now. 

Progress has been 3 steps forward and 2 steps back. This week in particular has been very difficult for Everyone Involved, Lil B, Isaiah, Jayme, and the Drs. She has had to be sedated to help calm her down. She gets very upset and tries to fight the machines. This increases her need for oxygen and her heartrate. They are not able to take her off of oxygen until they can solve these issues. Its been very heartbreaking and frustrating for mom and dad to watch her be so upset. 

The problem with her lungs at this point, is that her right lung doesnt want to open and her left lung opens up too much. The Drs are starting a 3rd and final round of steroids.

For the GOOD NEWS... The eye Dr checked Lil Bs eyes again. The ROP that was a concern, has regressed, and her eye vessel growth looks normal.

Please Pray... for Isaiah and Jayme. As the days now turn to weeks and month in the NICU, at times they feel hopeless and tired. Pray for continued strength to support eachother and Lil B. Continue to pray that Lil Bs lungs would heal and mature, and that she would have no long term effects from treatment. Pray that Lil B can have peace during this time and that if there are other underlying issues, they would be easily discovered. 

Please Give.... We are still about $1000 short of our goal of $2000 for June. This money is to help cover the expenses of travel to and from Riley Children's Hospital, which is about an hour and 15 min drive away from their home. Our hopes were that Lil B would be back at Ball Memorial but thats not happening anytime soon. Please GIVE for the month of June, if your able. We want money to be the last worry on their mind as the continue fighting for Lil B.

Please share.... Share this families story with others. Together we can make a real impact in the life of a Baby and her parents.

Several Answers to Prayer:

1. Yesterday, Sunday, Isaiah and Jayme checked into Ronald McDonald House. What a blessing. No more hotel costs.

2. Jayme's 6 week follow up appt went well this week. She is healing with no issues.

3. Baby B is growing stronger every day. See the notes from Isaiah below:

B has been fairly stable the past couple days. She ended her steroid course and as expected, she went up about 10% on her O2 support, and they had to adjust the vent to cycle gasses better. They had a proactive safety meeting today for how they can limit the chances of it happening again and included Jayme at rounds this morning. Otherwise it's been good, their increasing her food, and she pooped and peed on Jayme during a diaper change!

She's also getting better with coordination. When I was holding her, on Sunday, she pushed up, picked up her head a bit, and tried to turn on the other cheek. I think it's a good neurological sign.

Continue to PRAY for healing and strength for Baby B. PRAY that she can get transferred back to Ball Memorial by the end of the month. PRAY for continued perseverance for Isaiah and Jayme.

Continue to GIVE. Thank you to everyone who have been able to give. Please continue to help us reach our JUNE GOAL of $2000. We are 25% of the way to the goal. This month the money will be used to pay for travel expenses going to and from RILEY CHILDREN HOSPITAL. These expenses have already exceeded $1000 in the first 2 weeks. Every donation is so helpful to Isaiah and Jayme.

PLEASE CONSIDER DONATING MONTHLY 

Continue to SHARE. Please ask others to get involved. Together we can make an impact in the life of Baby B!!

Praise GOD! 

The surgery for Baby B went well. It was completed on Thurs with no complications.

Notes from Dad are below:

Thursday: B is back from surgery. It was a little tight. Her PDA was almost too big for the occluder to be anchored, but it tapered down on one end, small enough to fit. They're gonna monitor her closely over the next 24 hours for post PDA syndrome. As her body adjusts to the new bloodflow pathways, she may have some issues with low blood pressure and O2 support needs. They will take an echo tomorrow and in a week to make sure everything is staying where it's supposed to be.

Saturday: Steroids and lasiks are working for Baby B. She's been weaned on some Jet settings and her lungs look so much better than yesterday. They're pushing X-rays to every other day, and checking gases to every 12hours to let her rest and grow. They're gonna give her a suppository today to make sure she's not pooping because she hasn't had anything to poop, and then small food tomorrow. Its likely she'll have bronchopulmonary dysplasia, and may go home on Oxygen, but she's got plenty of time and she's got time for her lungs to heal eventually. 

Thank you everyone who has prayed or given. For the month of JUNE, we are asking everyone to give again, if you can. The goal is $2,000 which will help cover the expenses (hotels, gas, and food) during Brigette's stay at Riley Children's Hospital. 

Please continue to pray for Brigette's health and recovery. That she will be able to tolerate food, breathe better, and grow stronger daily. Also pray that Isaiah + Jayme get accepted to the Ronald McDonald House for the duration of Brigette's stay at Riley.

See new notes at top of the page about Brigette's surgery scheduled for Thursday 

FUNDRAISING UPDATE FOR END OF MAY

Fundraising breakdown is as follows:

1st month goal: $4,000/ 100% Completed Covers the cost of missed work for Isaiah and Jayme over the next couple months

2nd month goal: $8250/ 36% Completed Covers the families out of pocket costs for their medical insurance for the year

3rd month goal(June): $2,000 Starts Sat. Covers travel expenses during Brigette's stay at Riley Children's Hospital

THANK YOU SO MUCH TO ALL THAT HAVE CONTRIBUTED. YOUR GENEROSITY HAS MADE SUCH A DIFFERENCE IN THE LIFE OF THIS FAMILY.

Jayme's notes on the last week

Brigette's been through many IV pokes, xrays, blood gas checks, and different meds. Her dilated loop in her belly improved, so they started her foods again on Tuesday. 

On Wednesday, we were asked what we wanted to do with Brigette. Do we try another course of Tylenol and hope her PDA closes? Or do we transfer her to Riley Children's Hospital for heart surgery. Afrer a thorough discussion, we decided to try another course of Tylenol. Her O2 support needs continued to rise despite the vent changes the staff was trying to make. 

On Friday, Brigette's O2 support needs were nearing the max amount they could give. She also had a head ultrasound that showed she had brain damage, Periventricular leukomalacia, or PVL. This brain damage is a softening of the white matter due to blood and oxygen deprivation that will eventually lead to the white matter dying. This brain damage can cause neurological and developmental delays, motor control issues and put her at a higher risk of cerebral palsy. 

On Saturday, Brigette had another echo to check her heart murmur. Her PDA showed to be moderate to large and was causing pulmonary hypertension. We gave permission to treat her pulmonary hypertension with Nitric Oxide. This is a vasodilator that will hopefully help open the blood vessels to provide more effective blood flow and oxygen movement around her lungs. While Nitric Oxide has been given to preemies before, it's efficacy hasn't been thoroughly studied. It was, however, our best option to help lower her O2 support and help her lungs. The decision had also been made to transfer her to Riley Children's Hospital for heart surgery. 

We came in this Sunday morning to our nurses letting us know they had switched her to a conventional ventilator again. The Nitric Oxide was working for our little Bear! Her O2 needs had come down to 50 on the high frequency ventilator, and was continuing to come down. She seemed much more content and happy than she had been this past week. She'll be transferred to Riley Children's Hospital tomorrow to prepare her for surgery. She'll also be seen by a big person cardiologist because the nitric oxide. Isaiah and I will be joining her on her journey, where I will find another home away from home until we can transfer her back to Ball. 

It's been a hard week, but we are hopeful her PDA closure will lead to more efficient lungs and progess on her O2 needs. Please keep us in your thoughts and prayers as our little girl makes a big journey.

See update #11 for full update!!

PRAYER REQUESTS:

1. THAT BRIGETTE'S PDA (HEART ISSUE) WILL BE RESOLVED WITHOUT SURGERY AND HOSPITAL TRANSFER.

2. HER LUNGES WILL STABLIZE AND SHE WILL BE ABLE TO BREATH ON HER OWN.

3. ANY INFECTION WILL BE HEALED AND SHE WILL CONTINUE TO GROW STRONGER EVERYDAY. 

This week has been quite the ride. Through it all God has given us the strength to see each day through and see his blessings everywhere we can.

  On Monday, Brigette was trialed on the CPAP. She was breathing on her own with O2 and minimal pressure support for about 7 hours before her lungs needed a break and she was reintubated and put back on a conventional Ventilator. This was expected and otherwise she was doing well. 

While her lungs had stabilized for the time being, attention was once again called to her heart. Her PDA had reopened and was in the "Moderate to severe" category. They started a course of acetaminophen to help it close. While Acetaminophen is less effective for treating PDA than Ibuprofen, it doesn't interact with the steroids she was on so there was less risk of complication. 

On Wednesday, Isaiah got to hold brigette for the first time. They both got very warm, but it was a great experience. They also gave brigette a round of Albuterol, a bronchodilator to try and help her lungs open up more. The immediate result was an elevated heart rate, compounded by the PDA. The care team decided that until the PDA is treated, they will likely not be using albuterol again. 

On Thursday and Friday things were mostly the same. Brigette's heart rate cane back down to a safer level and her lungs looked good. Jayme got to hold brigette for about an hour, sometimes more on both days. 

On Saturday morning, Brigette had a major event. According to the Dr. It was most likely a bronchospasm. Her lungs reacted to the suction pass adversely and clamped down, she stopped breathing for a few seconds and It was very scary. We sat by and prayed, and she recovered, albeit with a need for elevated O2 support. Saturday evening Isaiah got to hold Brigette again. 

Sunday was the roughest day on our journey so far. When we came into her room that morning she was back on the Oscillator vent. The right lung had collapsed and she was having difficulty cycling CO2 and other blood gases. The Care team sent in multiple fluids for culture and started antibiotics. Later in the day her left side had also started to collapse but the right side was marginally better. They also saw a dilated loop in her bowels that could have been an early indicator of something worse. They had to stop her feeding for a couple days to help it return to normal. It was certainly a difficult day for Mom and Dad. The continued bad news was a strain on our outlook, but we persevered. With the Monday sunrise, hope was once again on the horizon. 

Monday morning was good news. Her lungs had improved, still not great, but heading in the right direction. The Cultures had, in the short term, come up negative, but the Dr. maintained the antibiotic course because another test indicated an infection. Throughout the day she continued to improve. Her most recent Echo showed that the PDA had gotten smaller, but still not closed completely. After such a difficult day, this news was a major blessing. 

This evening they will restart Brigette's feeding, the dilated loop is returning to normal. If she's tolerating her food again they will start another round of Acetaminophen.

Please PRAY for this round to close off the PDA. Should it not be enough, the Care team will be discussing whether Brigette will have to be moved to Riley Children's hospital for surgery, or if she will be given another round of steroids to strengthen her lungs first. Regardless, she will most likely need another round of steroids, but we are praying that she won't be needing the heart surgery. 

Thank you all for your continued prayers and Support. We are extremely thankful for the strength that God has given us and Brigette, along with the wisdom of the NICU Care team.

Thank you everyone for your continued prayers and Support. This week has been a long fight for Brigette, but we have seen some great progress. We are asking for prayers that she continues to make progress in the right direction. In the picture for this update is Isaiah getting to lay a hand on Brigette.

On Monday, Brigette's Doctors started her on steroids, to help her lungs develop and relax so that they could expand properly. The steroids take some time to start having an effect. Over the next few days there was slow progress in her imaging. The nursing team had to regularly adjust how she was laying, but were able to get her lungs to open up more. From Wednesday to Friday, they weaned her down on the Oscillator settings.

On Friday around midday the medical team decided it was time to challenge Brigette and switch her to a conventional Ventilator. When we visited in the evening, she was tolerating it fine and they were even working her her O2 support down a few points.

This is where our Prayers come in. There is a possibility that in a few more days, after the steroids start to wear off that her lungs could backtrack. Continued doses of the steroids would help, but could cause developmental issues with her brain. God is good, and I have faith that he will keep Brigette strong as he has done so far.

His blessings have continued to show throughout this week. We have noticed Brigette getting more responsive. She is now able to open her eyes, she likes to look around at her nurses when they are doing care. She really likes to look at us when we stand and talk to her. She has also gotten to a point where we are able to touch her. Earlier this week Jayme was also able to hold Lil' B for the first time as the medical team switched her Isolette for a new, fresh one. As long as her lungs continue to trend upwards, we should be able to do more kangaroo care this next week.

While this week has been tough, we continue to see God's blessing in little ways every day. Every little improvement and progression is a reason to smile. We are very thankful to everyone who has lent their support, whether financial, physical, or spiritual.

PRAY! PRAY! PRAY!

Though Brigette has been stable over the past 11 days her lungs have still been struggling. We are asking for supernatural healing for her lungs, that they will improve without the needed for medical interventions.

Here is Isaiah's latest 2 updates:

5/3/2024

Brigette's lungs continue to struggle. Overnight, they had to bump her O2 support all the way up to 90% for a bit, and they've been able to bring it back down, but it is still high. Just in the hour weve been here today, her O2 sats have kept dipping below the acceptable threshold and theyve had to marginally increase her O2 support. The Dr. Is looking at potentially using steroids to try to help reduce inflammation in the lungs, which can help relax her lungs so that they can change ventilator settings to reduce long-term damage from the ventilator support. Before moving that direction, they are trying to rule out anything else they can treat for, but he is only planning to go that route as the last resort. It can cause some developmental delays and possibly some vision issues, but she is at a higher risk for those anyway with her lungs in the condition they are. The rest of her body is functioning well, she also gained 50g again since yesterday.

5/4/2024

Brigette had a slightly better night. They did a total blood test last night that showed she may have an infection, so they've started antibiotics. The morning test looked slightly better so they're waiting on confirmation via blood cultures. They will be holding off on the steroids until they confirm infection. Upon examination later this morning, they found a heart murmur so they are going to do another echo to check for Patent ductus arteriosus again. PDA is another explanation for why her lungs took a turn, as it causes her heart to send too much blood to the lungs. Her other tests still looked good, but they're working to confirm and treat these other possibilities before they do the steroid.

Praise God Brigette has made it through the 1st week of her little life. She is fairly stable but the Drs are looking at a couple specific things that could affect Brigette long term. There are several concerns for both her heart and lungs that need prayers for healing over the next couple of weeks. Below are Isaiahs last updates from the Drs to help direct your prayers.

Good news and challenges today, 7 day head ultrasound showed no bleeds. She had a rough morning after I left. Her O2 had to be turned way up to keep her O2 sats stabilized and they had to do an echo, they think there's something going on with extra fluids in her chest cavity that is causing the 02 saturation issue. X ray showed that one of the lobes of her right lung is collapsing, so they're adjusting her position to help fluids drain to hopefully get it opening back up. Theyve also given her some medication to help the body purge those extra fluids. They may need to do a procedure to help drain excess fluid from her chest cavity. Besides her lungs, she's looking pretty good. The Dr. said she has a long way to go before they can wean her off a ventilator, but time will tell.

So we learned the results of her heart echo. They were looking for patent ductus arteriosus, which is problem with the blood vessel connecting her pulmonary artery to her aorta. Found nothing wrong there. They did find lil holes in her septum, whether a patent foramen ovale or an atrial septal defect, they don't know which. She also has a ventricular septal defect. All of which may require surgery or medicine to correct. But they may also fix themselves and could have been present in utero. As such, I did some research. Long story short, these are all things that are fairly normal in utero, small holes can close on their own and don't require surgery. So this really becomes a PRAY and wait situation.

He also said she was headed toward chronic lung disease, which was just where they need a lot of oxygen support. So we're hoping that she clears up and doesn't have that issue as she develops further. If it doesn't, It will result in a lot of outpatient care for at least a few years, but tends to become less severe as she gets older.

Please continue to pray, share and give to help Lil Bs conditions to improve. Thank you for all your support for Isaiah and Jayme. They are truly thankful for you all being part of their story.

This months goal is $8250. This is the out of pocket expenses for one year of insurance for the family. Help us hit this goal by making a donation, big or small, it all helps if we work together. 

Photo: The nurse made this for Jayme for Mother's Day.

Lil B is all wrapped up warm and snug but she has her fingers crossed. What could she be wishing for? Good eyes to see mommy and daddy? Maybe for warm weather so she can come out and play? Perhaps for chocolate milk with lunch? What do you think she's wishing for? 

Today's update is good. We are so thankful for how stable Lil B has been. Last night mom and dad got a call to get consent for Lil B to get a blood transfusion. The Drs reassured that Lil B was alright however a transfusion would be helpful so that her little body didn't have to work so hard. This morning the xray of her lungs looked the best it's looked since she was born. That is an answer to yesterday's prayers. 

Today Isaiah went back to work. His work is in between the house and the hospital so he's not far away. He's been keeping updated through video chats with Jayme. Jayme's mom also came down to help Jayme out for a couple of days. She got to go with Jayme on rounds and see Lil B. Her grandma heart is full today!!

Photo titled "Fingers Crossed" was from Sunday. 

THANK YOU AGAIN FOR ALL YOUR PRAYERS AND SUPPORT. WE ARE SO CLOSE TO OUR APRIL GOAL, 90% COMPLETE.

IF YOU CAN GIVE, PLEASE GIVE!! EVERYTHING HELPS!!

IF YOU CAN SHARE, PLEASE SHARE!! EVERYONE MATTERS

AND ALWAYS PRAY!! OUR GOD IS GOOD

God is good. His Mercy endures forever.

Thank you to all that have been praying. We have good news to report. Jayme is home and resting tonight. Her new meds are working (and the prayers) and her BP is down.

Lil B is doing good today. They moved her back to the original ventilator and they will be monitoring her progress. One of her belly button IVs got blood into it and clotted. So they put in a central line (PICC line). Here's what daddy said about it.

"Brigette tolerated the central line procedure just fine, gave the NP a hard time with it apparently. There is some concern with her gas test, but they just told us they were gonna do another X-ray, so I'm guessing we'll hear more about that later."

She is a fighter already. She might be little but she doesn't like to be poked!!!

THANK YOU TO ALL THAT HAVE BE ABLE TO GIVE. YOU HAVE CHANGED A LIFE AND A FAMILY FOREVER. AND EVERY LITTLE BIT MATTERS. 

Isaiah has not been watching the donations and did not know our goal for April would be help to pay his bills for May. When I shared this with him, he said,

"Wow, I have not been watching it. That is amazing. Truly a blessing. Every single thing that happens shows me more and more how much God will provide and take care of us and Brigette." 

THANK YOU AGAIN FOR BEING PART OF THIS JOURNEY WITH THEM! 

Isaiah sent out 2 updates today, and a couple super cute photos. Below is my abbreviated version. 

Brigette is becoming more stable everyday. They have brought down her Blood Sugar, and her gas check has been good. They were finally able to slightly increased feeding. Her BP has been stable and the Drs and Nurses are happy with her progress. Jayme and Isaiah are learning a lot and are looking forward to when they will be able to hold her in their arms.

A note directly from Isaiah:

We have passed our first milestone. Brigette had her Day 3 head ultrasound done today and there was no bleeding. God bless! Jayme and my hearts are full with joy. She also gained another OZ today, the NP thinks they may have had a slightly inaccurate birth weight, but oh well, she is gaining weight!! Now 1 pound and 5oz.

PRAY FOR JAYME

Jayme is still struggling to maintain a lower BP. The Drs are still adjusting and watching her progress. She is spending another night in the hospital. 

Photo: All wrap up like being in Mama's belly

Today has been somewhat uneventful, which is great considering the circumstances. The photo is Jayme touching Lil Bs foot.

Lil B has gained 4.5oz since birth. Her oxygen has become stablized as of this evening. Here are Isaiah's notes from today

Lil B is doing better today than she was yesterday, there was a slight struggle with oxygen this morning, but they were able to stabilize and they brought it back down. She is still on elevated oxygen levels, but it's expected with her being so small. She's also a little dehydrated, and her sugar is a bit high, so they may need to give her some insulin and they're giving her more fluids.

Overall she's doing as expected and she's in a good spot. When we were watching her today she was actively trying to remove her Beanie and "goggles" it was very cute to watch.

Jayme is spending at least one more night in the hospital. She is up and walking around. However, her BP has not lowered enough and stabilized, so they are adjusting things and hoping to allow her to be discharged tomorrow. 

Continue to pray for Jayme's recovery and Lil B's health and growth!!

Thanks be to God for his Mercy and Love.

Lil B and Mama are both doing well. Jayme was allowed of of bed rest today. This is the last update from Isaiah. 

They put Lil B on a different style Ventilator, they were able to help keep her lungs open more on the regular one, but she wasn't getting enough CO2 out, so they switched her to a "micro breath" one, which has really helped her O2 saturation. But we did get to feed her a bit, and got to touch her lil hand

Out of her bag and wrapped in blankets, Lil B is ready to sleep

Baby Brigette was born at 1:10pm EST on Wed 4-24-24. She weighed a total of 1 pound and measured 11 inchs long. She did well from the offset, HR and breathing right off the bat. They had to turn up her O2 a lot, but that's understandable with how tiny and underdeveloped her lungs are! Mom is doing well and recovering also.

Please continue to pray for Baby Brigette's health and growth. Pray that God will protect her from any complications and heal any long term effects of the preterm labor.