Prayers and Best Wishes needed for Mary and her Family

[gadgetman]

Mary,

Although I hadn't had a chance to post, I've been following and praying since the start. I will continue to pray for Charlie and your entire family. I will also keep Bob's Mom in our prayers.

May God Bless,

Danny

 

[Curtsmum]

Sending extra prayers and big hugs to Charlie.

 

[Cooker]

Prayers from the heart....

 

[Mary]

Please say extra prayers for baby Charlie. Today was not a good day. His O2 dropped down into the 80's, he's on a feeding tube, Iv's, and oxygen. They don't have the report back from the pediatric cardiologist yet.

Last night didn't go well either. They're still trying to pinpoint the source of the breathing difficulty, and he is struggling.
We all had major meltdowns, mom, dad, grandparents, and I lost my temper completely with a NICU nurse.
I am posting a link to the hospital and its email patient service in the event anyone wants to send Bridgid an email of support. She's met some VR.com members, and I think she would appreciate a message.
http://www.sfmc.net/display/emailapatient.nws
Patient name is Bridgid Sample.
Thanks for your continued thoughts and prayers.

 

[Phyllis]

Done, and I hope today brings some improvement. Love you all, Mary!

 

[Cooker]

My knees are getting sore but I'm not stopping!!....Hugs

 

[Wise]

Our thoughts and hearts are with you today. Praying for the best outcome.

 

[Freddie]

Message sent.
((((hugs)))) & prayers to all of you.

 

[Phyllis]

I received an email from Mary before she left for the hospital today. Charlie seems to be holding his own. Bob reported this morning that Charlie's respirations have slowed a little. There is fluid in the upper right quadrant, but no good answer as to why. Bob thinks that because it is in the upper lung, there is less reason to suspect the heart as being the culprit as heart related fluid goes to the bottom of the lung and fills upward. There is still no word as to whether the valve has closed either and possibly another echo will be performed today.
As we all know, Charlie can have no better advocates then Mary and Bob as grandparents. Please keep the prayers and best wishes coming .

 

[Emma]

Mary,
Came here to check if Charlie had arrived as had been looking on facebook but coudn't see anything.
So so sorry to hear he's having problems. As you know, Chloe was born with AV and breathing issues so I empathise completely - as a mum with a new baby as well as a heart baby. I have emailed Bridgid at the link you gave.

Sending you all love and positive thoughts
Emma
xxx

 

[Jan]

Hi Mary

I have been away for a few days so emailed Ross for news, he forwarded the link to me,

I am sending prayers and hug's to you all.

sorry I have no words of wisdom, but sending love and positive thoughts

your friend

Jan

XXX

 

[Karlynn]

I've been out of touch the last few days and was very upset to come on and find that little Charlie is having difficulties. I'm praying for him non-stop.

 

[Mary]

Imagine my surprise when I walked in the hospital room, and there was a STACK of email messages! Thank you all so much!

Somehow I managed to be with little Charlie in ICU when the echo tech came in to run the ultrasound (coincidence . . . I think not!). I got her to tell us that the PDA had closed but not the PFO. I hope one of the heart moms or someone else will chime in and explain the significance of that and what the odds are it will close by itself.
And he does have a bicuspid aortic valve.

That's all I know. He's breathing a little slower, but he also quits breathing at times. It's very disconcerting.

 

[Phyllis]

Not at all surprised to hear you were present for the echo! Here's a link about the PFO that might be useful if you still have some stamina:
http://my.clevelandclinic.org/disorders/patent_foramen_ovale_pfo/hic_patent_foramen_ovale_pfo.aspx
Hugs and prayers still coming.
Phyllis

 

[Cris N]

Hi Mary,
First of all I want you to know that you and your family ? and especially baby Charlie ? are in my thoughts and prayers.

Secondly, I became a first-time grandma last April when my daughter delivered a lovely pair of twin girls. Since she was going through a very high risk pregnancy she was hospitalized at 26 weeks with the plan to deliver her girls by c-section at 32 weeks (common time for her complication). Instead, one of the babies went into distress and she had an emergency c-section at 27 weeks 5 days (3 months premature).

The girls (Grace and Hope) were 2 lbs and 2lbs 5.5 oz. They went through all sorts of issues in the NICU ? Grace had a PDA that just wouldn?t close at all and finally underwent surgery to close it (surgery only lasted about 10 minutes) They both went through breathing issues, feeding issues (including some intense digestion problems for a bit), jaundice, temperature regulation, not making red blood cells ? the list goes on. They were ultimately released from the hospital after 68 & 74 days. They were both on Apnea monitors for a while at home.

When you stop to think about it, there?s so much for a newborn to learn, sometimes they do forget to breathe ? they get so involved in other things going on. Both girls were on & off the ventilator several times, graduated to CPAP, and finally just a bit of forced room air until they really got the hang of breathing.

Today they are very healthy, happy babies eagerly exploring their surroundings.

While they were in the NICU everyone learned to take it one hour at a time. It?s often described as a roller coaster ride ? big ups and big downs...

I don?t really know much about the PFO (incidentally the P stands for Patent ? which means ?open? in medical terminology. I was going to give you a link but I see Phyllis posted it before me.

I am hopeful that Charlie?s issues will turn out to be very manageable and he stabilizes quickly.

Keep up the good work grandma and, oh yeah, Congratulations!

 

[Karlynn]

Thank you for the update Mary. I'm sure Charlie will have many good things in common with Grandma, and am sorry you have to share the BAV too.

Keeping the little soldier in my prayers.

 

[Glenda]

Mary, I feel awful. I don't know how I missed this post. I've been so tied up with my own problems here lately and they are nothing compared to this. I'm so sorry. You've always been so suportive and I dearly love your posts. Hugs & prayers are coming your way for you and your precious family and especially for Charlie. May God wrap His arms around him and keep him safe. Love ya.

 

[Emma]

Hi Mary,
So very pleased Charlie is holding his own and you got some time with him.

Also glad the PDA closed. It normally closes within 24 hours of birth in most babies - some it just takes that little bit longer and others need it stays open, causing either no problems or being closed by a minimally invasive surgery later on.

Pretty much the same with PFO from what I understand and have heard from other heart mums. In most cases it can be left alone and I've heard of many babies who had one that closed over alone. It's a hole between the atria I think and is normally closed by caridac cathetar and balloon if anything is done at all about it so although not something you want them to go through, I've not heard of open heart being used for it at all.

Looking forward to hearing about Charlie getting stronger and stronger!!
Love Emma
xxx

 

[Nancy]

May God keep all in the palm of His hand and keep everyone safe.

 

[Ross]

Still checking from time to time. This little guy is really proving he's tough.