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Praying for you and your family!
Thoughts/prayers requested
- Thread starter Cobrabit
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A quick update, they were finally able to get a picc line in last night after trying several times. Mom and Dad were able to really hold Milo for the first time. Planning on a brain scan Monday to check for bleeding. Still a while in the ICU to come but being able to hold him has helped.
Thank you for all that has thought and prayed for Milo and his family, but there is still tough times ahead.
Thank you for all that has thought and prayed for Milo and his family, but there is still tough times ahead.
Prayers to Baby Milo and the entire family
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I will actually pray fer baby Milo
prayer is a strong thang and a request fer good
God is good and listens to his many
prayer is a strong thang and a request fer good
God is good and listens to his many
Milo is improving, but still in the NICU. Had a good visit with his parents last Sunday to provide some "parent care" gifts.
Current update on Friday 10/9:
"Soo.... room air trial begins today!!! Also, platelets were at 63. They are changing his fluids with lower amounts of sugar. Then they will do sugar tests like an hour after they change his fluids and he eats.
Also, the genetics test came back and he does have Down syndrome.
The cmv virus came back negative too"
He's gaining weight and appears to be on a path to eventually leave the hospital, but that may still be days/ weeks away.
Down syndrome is not a phrase any parent wants to hear, but knowing their strength/ faith and a strong support system, they will be a happy family.
Current update on Friday 10/9:
"Soo.... room air trial begins today!!! Also, platelets were at 63. They are changing his fluids with lower amounts of sugar. Then they will do sugar tests like an hour after they change his fluids and he eats.
Also, the genetics test came back and he does have Down syndrome.
The cmv virus came back negative too"
He's gaining weight and appears to be on a path to eventually leave the hospital, but that may still be days/ weeks away.
Down syndrome is not a phrase any parent wants to hear, but knowing their strength/ faith and a strong support system, they will be a happy family.
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What a handsome little man!
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No parent wants to hear that but those children are touched by God in a special way.....as long as he is healthy that's all that should matter. Glad to hear he is doing better.
First picture without the ventilation tubes, as they're seeing how he does without supplemental oxygen.
I will give a shout out to the Ronald McDonald house. While their facility is closed due to COVID, they've partnered with a local hotel (one of the best in the area) for reduced rates (essentially half price) . Room rates are typically $150+ , but with friends and family paying for a couple nights here or there, along with a gofundme page for expenses, the parents can focus on Milo without worrying.
Today's update for those that are following. Thank you again for any positive thoughts.
"Update from kids: 10/10
Milo has done really good on his room air trial.. they are bottle feeding him at care times now.. they will keep his feeding tube in his nose for now though in case he doesn't take enough at his feedings. His platelets came up last night but we aren't celebrating yet because he's done this before and then they went down again so they will check again tonight. Still weaning off fluids as his sugars were pretty good all night. There's an order for a new head scan Monday and they will probably do one more echo before discharge.. they are talking about moving his from C Pod to D or E which is a good thing.. closer to discharge."
"Update from kids: 10/10
Milo has done really good on his room air trial.. they are bottle feeding him at care times now.. they will keep his feeding tube in his nose for now though in case he doesn't take enough at his feedings. His platelets came up last night but we aren't celebrating yet because he's done this before and then they went down again so they will check again tonight. Still weaning off fluids as his sugars were pretty good all night. There's an order for a new head scan Monday and they will probably do one more echo before discharge.. they are talking about moving his from C Pod to D or E which is a good thing.. closer to discharge."
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No, it's certainly not. But I know two families well with Down's children and it was the best thing that ever happened for the family and the adult children couldn't possibly be happier people. They wouldn't change anything about it if they could.
I have no doubts that Milo came into this world with the perfect parents for him. They're both extremely active within their church, youth groups (father is the youth director), and have a strong support system of family and friends. Many have stepped up to provide financial assistance for their hotel/expenses while they're 1.5 hours away from home and I know my wife and I will provide additional financial assistance towards medical expenses so that they don't have that worry and can concentrate all of their attention towards Milo and themselves.
I couldn't imagine being in their position, being far from home, Covid restrictions not allowing visitors, with "touch and go" issues that may pop up, then refocusing on how your parenting plan will change with a child with Down's, let alone any lingering issues. At least we can take the financial worry off their shoulders for now and provide whatever support we can.
October 13 update. I do greatly appreciate the kind words and thoughts you have all provided here. Glad to know that although the world and politics are going insane, humanity can still exist, even on "anonymous" message boards.
From the father:
Update on baby Milo:
We want to thank everyone for your prayers and support. We have so much to be thankful for and have seen a lot of improvements and I wanted to share those with you! I ask that we lift up our thanksgiving to God for all of the improvements and strides that Milo has taken over the past couple of days!
Milo passed his room air test on Sunday, so he is no longer on the CPAP. The pulmonary hypertension in his lungs have slowly decreased. They did another echo and we are awaiting the results from that to see if it has completely disappeared or not. His last transfusion was last Tuesday, and his platelets have been stable and actually have slowly increased. So, they aren't going to do as frequent of lab work for his platelet count. His blood sugar has been more stable and they are hoping to remove his picc line tomorrow or Thursday. His second head ultrasound shows that the brain bleed has resolved itself. Milo started eating from the bottle on Saturday and is slowly getting the hang of it and eating more each time.
Also, for those who haven't heard already, they did a genetics test and Milo does have Down's Syndrome. The medical staff told us that the things Milo had to overcome and the issues he had could be a result of the Down's and that is why it has taken so long for his body to develop in these areas that he struggled with. So, we got a lot of answers with that test. We will meet with the geneticist on Thursday afternoon to go over that test result and be able to ask more questions.
We don't have a date or timetable for discharge just yet. But, please continue to pray for Milo. In your prayers let's give thanks to God for all that He has done and the progress we have seen in Milo. Also, continue to pray for the pending test results, that they can remove the Picc line soon and Milo's blood sugar continues to stay stable, and that Milo continues to learn to eat from the bottle!
Again, we thank you so much for all of the support and prayers! We have felt so supported and loved during this time. Grateful, thankful and loved do not even begin to express how we feel right now! We have been able to witness firsthand your prayers working in and through Milo. We know God has big plans for this little man and have already seen him unify and connect so many people through prayer.
We love you all!
From the father:
Update on baby Milo:
We want to thank everyone for your prayers and support. We have so much to be thankful for and have seen a lot of improvements and I wanted to share those with you! I ask that we lift up our thanksgiving to God for all of the improvements and strides that Milo has taken over the past couple of days!
Milo passed his room air test on Sunday, so he is no longer on the CPAP. The pulmonary hypertension in his lungs have slowly decreased. They did another echo and we are awaiting the results from that to see if it has completely disappeared or not. His last transfusion was last Tuesday, and his platelets have been stable and actually have slowly increased. So, they aren't going to do as frequent of lab work for his platelet count. His blood sugar has been more stable and they are hoping to remove his picc line tomorrow or Thursday. His second head ultrasound shows that the brain bleed has resolved itself. Milo started eating from the bottle on Saturday and is slowly getting the hang of it and eating more each time.
Also, for those who haven't heard already, they did a genetics test and Milo does have Down's Syndrome. The medical staff told us that the things Milo had to overcome and the issues he had could be a result of the Down's and that is why it has taken so long for his body to develop in these areas that he struggled with. So, we got a lot of answers with that test. We will meet with the geneticist on Thursday afternoon to go over that test result and be able to ask more questions.
We don't have a date or timetable for discharge just yet. But, please continue to pray for Milo. In your prayers let's give thanks to God for all that He has done and the progress we have seen in Milo. Also, continue to pray for the pending test results, that they can remove the Picc line soon and Milo's blood sugar continues to stay stable, and that Milo continues to learn to eat from the bottle!
Again, we thank you so much for all of the support and prayers! We have felt so supported and loved during this time. Grateful, thankful and loved do not even begin to express how we feel right now! We have been able to witness firsthand your prayers working in and through Milo. We know God has big plans for this little man and have already seen him unify and connect so many people through prayer.
We love you all!
fordman84
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I'm not familiar with setting the gofundme stuff up, but if possible I think you could get some good help if you posted the info here.
My mom worked with special needs kids as a diagnostician for years. the level of care and therapy even public schools can provide is night and day better than even a decade ago. keep the updates coming, prayers out for baby Milo.
I'm hesitant in sharing that link because it includes more identifiable information for the family (last names specifically) and while most would be well intentioned, it isn't something I would feel comfortable sharing without explicit affirmation from them.
It was set up primarily to cover the food/lodging costs of the parents while being 1.5+ hours away from home. With the partnership of the Ronald McDonald house, the cost per night is around $75. Family and friends have been paying for 2-3 nights at a time for the parents and my family brought some items for the parents and cash so they didn't have to make a 40 minute trip to find an ATM for their bank.
While medical bills associated with his birth and care until discharge will be large, my wife and I have already discussed that we'll cover anything not covered under insurance or through the current gofundme fundraiser. As they're in a hospital out of state, their local hospital tried 2 other hospitals in their state and they didn't have room, so hopefully they'll be able to fight billing to an in-network rate for our of pocket max.
We don't want the parents to have to worry about bills right now and I know we'll continue to support them as needed.
No parent should have to worry about money when faced with these challenges for the birth of their child. there's already so much worry about the health of the child, physical and mental health of the parents, and subsequent modifications they'll have to make to raise a child with health concerns, that if there's at least one thing we can do to help alleviate some of that stress/worry, we're going to do it.
We can't wait to finally hold Baby Milo ourselves, but we'll embrace the parents whenever we can.
Update 10/17
"Picc line is out.. platelets were like 130.. Circ will be done at his next care time.. fingers crossed we’ll be going home tomorrow..oh and he passed his car seat test!!"
If he's able to go home this weekend, that will be amazing! Hoping to be able to hold him on Thanksgiving, but a lot depends on his health and my own family's exposure to COVID being teachers.
@fordman84 I was given the go ahead to provide the gofundme page should anyone wish to take a look.
gf.me
"Picc line is out.. platelets were like 130.. Circ will be done at his next care time.. fingers crossed we’ll be going home tomorrow..oh and he passed his car seat test!!"
If he's able to go home this weekend, that will be amazing! Hoping to be able to hold him on Thanksgiving, but a lot depends on his health and my own family's exposure to COVID being teachers.
@fordman84 I was given the go ahead to provide the gofundme page should anyone wish to take a look.
Medical Support for Baby Milo, Brandon & BJ Roland, organized by Lindsay Price
BJ & Brandon Roland welcomed their sweet bundle of joy into this worl… Lindsay Price needs your support for Medical Support for Baby Milo, Brandon & BJ Roland
gf.me
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Who do you think you are? Sharkonbicycle? Thats his schtick.
Worst place to be, is a parent being helpless to a child in distress. Hoping for the best for all involved.
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Done