Welcome to my New Granddaughter

[Carol H]

My daughter had a BABY GIRL!! Her name is Sydney Ann she was a couple weeks early but mom and baby doing great!! She was 6lbs and 9 oz she seems so little!! Been a while since we have had a newborn! I feel so blessed she is perfect! Connor is my grandson he is 7 years old he has CF and he could not be happier!! He loves to hold her, rock her and sings to her. But he does not want us to hear so he sings very softly it just melts my heart! (L) pics on my profile!

Connor had a very rough year last year but now he is doing great!! Back to school in 2nd grade and very happy, smart little guy!
because of the rough year Connor had a really bad fear of labs, iv's well almost everything. I couldn't blame him, but we had to find a way to get him over this. I asked for Pen Pals since Connor believed he was the only one with CF.. I got a great response and it meant so much to Connor to know... there are other kids with CF and have a lot of the same treatments and issues. It also opened up Connor to talk more about CF my daughter and I, her husband oh and Papa too would talk about CF more and what it means for Connor. I cannot tell you what a difference this has made to Connor!! He tells the docs and nurses about his Pen Pals and how they all have so much in common and they all have CF! I took him to see a new doc a allergist last month and he asked all the questions... you know history and all that.. He asked me is anyone else in the family had CF .. Connor stopped me, said " I got this one" he said No, but I do have pen pal friends they do have CF and they are boys!!
He did also get a break from being sick!! Last time he was in the hospital was May.. he did have tonsils and bronch over the summer but he got to go home the same day!! Connor began to get more comfortable again with cultures, labs, iv's (well kind of) He is doing SO much better than he was, does not freak out and try to leave He did not have a anxiety attack when he was in short stay surgery in fact he was pretty relaxed but the nurses worked with my daughter and agreed not to do IV till he was out. Connor was happy about that!!
First week of school he was having tummy issues so we had to do labs.. the first one he was upset but held still and cried just a little.. the guy that took his lab was awesome.. the second lab same week to recheck his levels he did not cry!! did not freak out and did great!!
I was so proud of him!! He is the bravest person I know.. I always tell him that... but this time he said you know what Grandma I think your right!!
SO I want to thank you all for this forum and everyone that is on here!! It is not easy for kids and adults with CF go through so much!!
but so do the families and the Parents! I pray for you all everyday!

I am a Grandma and I feel so blessed, we may not have all good days but this Month we have had more that I can count!! I have all grandsons so you know I am going to spoil my granddaughter!! Think Pink!!
The sweetest thing that made me and my daughter cry.. Connor asked if Sydney has CF (U) he said I do not want her to have it because it can hurt sometimes all the labs and iv's would really make a baby cry. My daughter told him No.. she does not have CF he was so happy and then he said well he will still make sure she does not get hurt!!

Thank you all!!! from one
Proud Grandma!

 

[MyBabyCeline]

Oh Carol I'm so happy for you and for Connor! I'm glad he's doing much better now, he's a brave little guy and you have every right to be proud of him. Our little CFers are so strong and they go through so much. My girl will be 5 in december. She still doesn't know about CF but she just recently started asking questions and I feel that we might have to explain everything to her soon. I'm not looking forward to that but I know I can't just leave her hanging there having all these questions not answered. She knows she's different than her friends with all the treatments she has to do. She was only hospitalized once and was really scared of the IV's. She also gets really anxious when she hears anyone talking about labs or tests. I guess what I'm trying to say is that all kids go through that and I'm glad Connor was able to overcome his fears.

And congratulations on your baby granddaughter!! I'm glad she and her mother are doing great. Baby girls are so much fun especially after having so many boys around. Now you get to play dress up with a little baby doll of your own lol! Enjoy every moment.

 

[Rebjane]

Carol, Connor sounds like a wonderful,sweet little boy. So happy for you and your beautiful grandchildren. They are blessed to have you in their life...

 

[TreasureGoddess]

So very, very happy for you! Also a note for Connor as well as other parents with young ones getting stressed (and teens too)....please ask if you have care life specialists, music therapists or anyone on staff to help reduce anxiety. These are often available at children's hospitals and also adult hospitals that have pediatric departments. These people are TRAINED at finding ways to help kids and young adults deal with the stress of being stuck with IV's, going under for surgeries, etc. They have experience at talking to kids about things and helping the kids (and parents) find ways to make things less intense.

Another point that Connor's mom already found out.... ask if they're going to be put under if the IV or extra sticks can be done once the child is under. Sometimes that's not available and they can at least give the "happy" meds to help relax the patient.

 

[Carol H]

Hi.. Thank you that was so sweet!! Yes I am so excited to have a granddaughter!! My daughters husband is already telling us to back of the pink and the cutest headbands ever!! I know it can be hard to explain CF to our little ones. Connor really started with all the questions when he turned 6 years old
there is a great Video that is Connors favorite that does a great job explaining CF for kids.
Getting Nosey about CF with Oli and Nush!! it is on YouTube. I wish you best of luck with both of your little ones!!

 

[Carol H]

HI.. yes Connor has a great team at Children's Hospital. He loves the girls in Child Life and they have done some amazing things with him to help him over his fears! but last year was too much for him... he had a terrible reaction to antibiotics that resulted in Steven Johnsons syndrome last Oct. it was terrible and extremely painful for him. So that where the fears and anxiety came from. Now that is has been almost a year then he was in the hospital 3 more times so it was just hard. But now he is better he knows he will still need labs and iv's, pic lines ect.. and we talk about CF more and treatments.
We know how blessed we are each day the good days for us and all the kids dealing with CF are so much sweeter!! And I know little our Super Heroes
can do it!!!

 

[liveinhope]

Hi carol,
You sound just like me. My grandson has just turned 7 with DDF508 also. He has been admitted into the hospital about 3 times since birth, so we think we are very lucky that he seems to be doing okay the moment. He doesn't really ask any questions. Just wonders why he has to do his vest everyday. Tomorrow is a great day for him as he gets his new afflovest. We are all so happy that he will be so much happier doing his treatments now. He has had the Hillrom vest for 6 years, but hates it.
Did your daughter do the IVF/PGD to make sure your granddaughter didn't get cf? My daughter in law has been trying for another baby for a few years now.
From Carol H

 

[Carol H]

Hi.. My daughter and her husband have been trying for a few years too, with no luck they went to a fertility doctor but due to my son in laws medical issue the dr told them did not think it would be possible to have more kids, but then it just happened!! they could not afford IVF so we were all surprised and I feel like she is a little miracle. They also saw a genetic specialist because not only CF but we have other genetic issues in our family, the genetic doctor told my daughter that my granddaughter did not have CF. I think my daughter cried all day, but also she felt pains of feeling so happy one does not have CF and the other does you almost feel guilty for being so happy.. this can be really hard to deal with. But we all know to count our blessings each day! (L)