for our rainbow groups catch up Xx

[lilesMom]

I never answered u Jess sorry
Not much to do during seizures.
Keep him comfy, in a safe place, usually cuddling in lap
Record time and length and description.
He doesn'thve dropdown seizures or trouble,with breathing or swallow during them thank God

He still sleeps cuddled into me
He has cot now attached to bed, either one side missing
So it's like extending the bed.
He is about 50 50 between the two

Hope ur feeling better
Xxx
u couldo sensory work with Sophia at home.
Lots of ideas for sensory play and massage on internet
Just go slowly, introduce things gently so as not to increase het fear
U would be surprised how fast simple things like playing with coloured rice makes a difference
While ur waiting yo hve it looked into
Xx

Love to all Xx

 

[aaronswoman79]

Thx Laura. I started looking through therapies. I don't know if I mentioned but Natalie has sensory disorder, and Sophia even has more issues than Natalie. I wonder if there is a hereditary factor to this. Simon sounds so cuddly. I yearn to cuddle Sophie so much. I take advantage in the morning hours when she is half asleep and curls next to me. As for having a baby in the NICU, I really think every woman reacts differently. Me and dh were on top of everything. But, I don't trust the docs (have trust issues) and it was my 4th delivery and I think after dealing with so many docs in the past it kind of makes it easier to deal with them. Sophie wasnt my first baby in the NICU, so was Aly and she almost died there.

 

[aaronswoman79]

Angel, I hope David is thriving. I understand your frustration. Its the love that u have for little David that makes so concerned and at the same time frustrated. Its just so hard at times when u have to put so much trust into the docs. They are only human so I understand your uneasiness. I'm hoping they are doing all they can for David and he eventually comes out a healthy little boy. I know its a process to start repairing his heart, correct? Your brother and sil must be hurting a lot for their son.

 

[xoxo4angel]

Angel, I hope David is thriving. I understand your frustration. Its the love that u have for little David that makes so concerned and at the same time frustrated. Its just so hard at times when u have to put so much trust into the docs. They are only human so I understand your uneasiness. I'm hoping they are doing all they can for David and he eventually comes out a healthy little boy. I know its a process to start repairing his heart, correct? Your brother and sil must be hurting a lot for their son.

Hypoplatic Left Heart Syndrome:

It's just hard when the Cradiologist told us before he was born that time was of the essence and here we are waiting. There is a small opening between the left and right side of the heart that closes within the first few days of life. David is on meds to prevent this from closing to buy time. His aortic valve is grossly underdeveloped, the tricuspid and mitral valve are both leaky. They have to tie off these valves (procedure 1) and reroute the entire function of his heart in a procedure called the Norwood (procedure 2). Originally the Dr's thought he would have the first surgery on Friday, well, somehow they took "too much" blood while drawing blood gases so he required a blood transfusion. Now they had to wait for him to stabilize post transfusion this pushing his surgery. He will then have to have a second surgery at 4-6 months, and his 3rd between 3-5yo. Just 20 years ago there weren't surgeries for his condition. These surgeries aren't a cure, they're palliative care. The cure is a heart transplant, which we hope he isn't faced with until he is in his 20's---if ever. I went back to our original thread and this is what Jen lost her sweet baby Liam to at 19w in utero.

 

[aaronswoman79]

I thought about Jen's baby but I didn't want to mention it because of the fact that she lost her son. I am very aware of David's heart defect/s. I totally and completely understand your frustration. David needs his mama and family fighting for him. I don't like the fact that they already made a mistake and took to much blood, making him need a blood transfusion. Time is of the essence. His mother and father really really needs to find support, possibly with other parents who have or are going through this and also have a baby with HLHS.

 

[xoxo4angel]

Nice suggestion for the support group, I've found a few that I've sent on to my SIL. I know she is meeting families at the Ronald McDonald House, but their children are there for various reasons I spent the morning with my brother. I know it's hot out, but I made a huge pot of my Granny's veg soup and sent it with him. It always cheers me up, so I hope it does the same for him My BFF has her baby boy tomorrow, it's her second child. Her daughter is 6 1/2 so he will have 2 Mommy's...nothing like a big sister

Hope you've all had a great weekend. Any quick tips on how to drop 15lbs in less than 3 weeks? Ha! Ok, off to get the paper out of the drive...Pierce gets its daily and is growing impatient (yes, it's been out there all day!).

 

[xoxo4angel]

So my best friend had her baby boy today, 9lbs 5oz. He is so beautiful, thick head of dark brown hair. I am so thrilled for her

Here is one of those moments Amy that you speak of...a moment where you are genuinely happy for someone else at the same time so in mourning for yourself. I am thrilled for my BFF, but am reminded of my loss(es)...ugh, emotions are a bitch!

 

[A1983]

You are so strong and beautiful Angel, Pierce is a very lucky boy. Sorry to hear so much pain, stress and heartache on this thread - you all need a blo*dy good dose of good luck! I donated some money yesterday to a little girl who was diagnosed with C (hate the word) just after her second birthday. Treatment is maintainance for as long as possible and not a cure, so unbelievably cruel and sad...but unfortunately she is not the only one. Let's hold our babies and fall in love with them over and over, they are so precious xx

 

[mommylov]

Wow.. first off big hugs to everyone!!!

Laura, Im THRILLED to hear that Simon is doing better and hope that the second increase doesnt hit him as hard and does the trick. This really made me smile to know that he is feeling better.

Angel, Im so sorry to hear all the frustrations regarding your SIL and little David. I agree with Laura.. Im sure my brain would be mush and from what you were saying about your SIL on a normal day, this definitely makes things a lot worse. I would think its a HUGE help to have you ask the questions that you do and maybe that might help her ask the dr's more questions as well. Your support could make her feel empowered and stronger during this tough tough time. You sound like such a sweet sister and SIL and they are lucky to have your support. I didnt realize this was the exact same thing that Jen lost Liam to. Its gotta speak volumes that David is surviving right now and continues to fight. He sounds like a tough little guy and Im sending tons of good thoughts to David and hope that he can get his first surgery done here soon. I wish it didn't have to be painful when something wonderful happens to someone you care about. I know that its something that will never go away but with each day I try and think of my angels and the short time that I had with each one of them and just love them wholeheartedly. I know they say that time heals all wounds but our babies will be with us forever in our hearts.

Jess, I think the suggestions Laura made regarding the sensory issue you mentioned sounds great. I know you are on top of things and always great about researching and being involved with your girls. Did you ever meet with the Sophia's dr regarding this? Lots of hugs to you!

Bethany, Always thinking of you and hope you are doing well.

Leslie, love to you and your girls!

Love to my girls!!

 

[xoxo4angel]

Finally good news! Baby David made it through surgery today I was able to talk to his nurse and social worker, so my Type A/controlling appetite has been fed. Just so thrilled for this little fella! I'm looking into flights for a trip up there this weekend

 

[A1983]

Fantastic news!

 

[mommylov]

thats great Angel!!!

 

[mommylov]

BTW Laura... I was thinking about this the other day and I'm really glad you set up this thread for our little original group to keep in touch. The past 3 years with you girls has helped DH and I get to where we are and I love hearing how everyone and their LO's are doing so I'm really glad we decided to create this group

 

[aaronswoman79]

Wonderful news Angel!! Can't wait until you get to meet David.

 

[aaronswoman79]

Amy, hearing about issues and things we have gone through with our los will come in handy for u too. When your los are born and they have any issues say with teething or other things u will think back to us and hopefully will remember how we dealt with issues. I was just thinking about this. You have heard us talking about reflux, colic, breast feeding, formula, teething, tantrums etc. You will be so ready for your los!!

 

[lilesMom]

Angel that's brilliant :-D
Hurray for David.Xx

Thanks Amy xxx
Love u lots Xx
Transfer just around the corner now
Whoop xxx

 

[mommylov]

Amy, hearing about issues and things we have gone through with our los will come in handy for u too. When your los are born and they have any issues say with teething or other things u will think back to us and hopefully will remember how we dealt with issues. I was just thinking about this. You have heard us talking about reflux, colic, breast feeding, formula, teething, tantrums etc. You will be so ready for your los!!

I feel the exact same way! Although Im sure I will still come to you ladies and ask "what do I do?!?!?" lol

Laura, I was thinking about your mom this morning... how is she?

 

[lilesMom]

Mom is ok thanks,Amy
Her heart goes too fast sometimes,and she has to go to hosp to bemonitored
But she has good days too
Xx

 

[mommylov]

Im glad to hear

 

[xoxo4angel]

Sweet baby David is such a fighter! His recovery will have its hiccups, but hope is strong! Thanks for cheering him on!

Laura ~ Glad your Mom is alright.

:wave: Hope you all have a great Memorial Day weekend.

Amy

PS Anyone watching Game of Thrones? And how about that season finale of Big Bang Theory? Eek!