Sunday, November 18, 2007

No news

I wish I had some answers about Jack... believe me. But we don't really yet.

We came home Friday night from Philly, I missed the girls so much I couldn't stand it, I couldn't wait to get home and see them. As soon as we pulled in the driveway I wanted to cry because I missed Jack and felt so terrible, thinking about him all alone in Philadelphia. This is going to be my life for awhile I guess. No matter where I am, I have this horrible feeling I should be somewhere else.

We had a meeting with Jack's doctors Friday afternoon to discuss the test results they had so far. We were both a nervous wreck all day, waiting, praying.... they didn't see us until almost five o'clock and by that time I was really losing it (PJ was past losing it, he lost it about 12 hours earlier.....). And they pretty much told us, they still don't know what's wrong with him. His heart, brain and eyes all looked basically fine. But his lungs are really small and immature, and there are other little 'signs' that point to a bigger picture, possibly genetic. It just is not normal to be as old as he is and as big and still unable to breathe. There has to be more to it. So we wait for more tests to come back.

They did say, that instead of trying to wean him off the vent (like St. Barnabas was doing) they are going to crank it up, give him all the support he needs to get his lungs strong and healthy. That he NEEDS the vent right now, and there's no point in trying to get him off it until they get his lungs looking better. So, not good news but not terrible news either. The waiting is torture though. And the fact that he's going to be there who knows how much longer is not easy.

CHoP is amazing. I can't say enough about it. His doctor is so nice, everyone is so nice. It's just the most unbelievable place, I've never experienced anything like it. They try so hard to make it as easy as possible on you to be there.

I have so much more to say but need to go to bed. The girls are doing awesome, the grandparents took great care of them (I don't know what they were feeding them - they are little PORKERS). Katie is 6 lbs 10oz and little Charlotte is 5lbs 10oz. I couldn't believe how much they changed in just 3 days. They each gained almost a pound in a WEEK. I know to people with full term babies that still doesn't seem very big, but to us it seems huge. They are both almost double the size they were at birth!

I'm going to Philly for the day Sunday to see Jack and bring him some things, and my mom is going too. Then PJ is going for Monday and Tuesday... then, who knows. We'll take it a day at a time. I am so sad he won't be home for Thanksgiving. At this rate, he probably won't even be home for Christmas. My poor boy.

Please, keep all the prayers and good thoughts coming to him. He is such a sweet baby, and he needs all the help he can get. We ALL appreciate the amazing support we've gotten so much. I tell Jack all day, everyone loves you. So many people are praying for you and hoping you get better and come home!

See.... look at that face. Doesn't it just say, okay, Philly is nice and the helicopter ride was cool, but please, please, I just want to come home...

24 comments:

The Hyperfertile Infertile said...

Children's here in Seattle is amazing, too. It's been 7 years and I still donate to them every month. They make a terrible time in your life as good as it can be. I'm so glad Jack is there... even though it is further away, he (and you) will truly receive the best possible care.

I'll keep praying like crazy for little Jack and all of you. He's such a beautiful little guy, he looks just like his mommy.

Karen said...

Hi, you don't know me, but I was a knottie up until early last month, and have been lurking on thenest for a long time. There are no words that anyone could say to comfort you and your family, but I want you to know that you are all in a lot of peoples prayers. My prayer for you is that God be with Jack right now, to give him strength and health so that he can come home to his precious family. My thoughts and prayers are with you.
Karen...oconnortobe

Anonymous said...

I want you to know that your whole family has been in my prayers. You are an incredibly strong woman. You will get through this and your whole family will be together soon.
Jen
(jenjen813)

Liz said...

I'm glad that CHoP is a wonderful hospital & that everyone has been great there, but I am praying that Jack gets to come home soon. We are all thinking about you guys. I'm here if you need anything, anything at all.
Love and hugs,
Liz

Erica said...

Megan, I just want to let you know that I am as well as my father and his prayer group, are praying for little Jack and your family. I want you to know that I live in East Windsor, which is not too close to Philly, but a little closer then home, and if you ever want to stop by, take a shower, get a cup of (decaf) coffee or take a nap, you and PJ are both more the welcome in our home. my email is sweetpea2419@hotmail.com

May God continue to bless your family and keep all of you strong.

Love,

Erica (EricaD521)

Jessica said...

Hey Megan,
I'm glad to hear that you're home and with the girls for a bit. They need it, you need it... I completely understand the feeling of needing to be in two places at once and not knowing which is more important. It's a heart and gut wrenching feeling. I've been checking the blog, what seems like constantly, since Jack arrived at CHOP. I'm so glad to see that you've settled in and that he's comfortable there, and that you're happy with his MD's. That's just so important. We too missed our first Thanksgiving home, and I was incredibly upset about it. This year however we are celebrating without abandon!! And as for Christmas, I truly believe that miracles do happen. Our sweet Noelle was sent home on Christmas Eve... Literally... We walked in the door at 7pm... It could not have been a more perfect Christmas. I have faith in Jack, I'm sending strength to you, and I'm praying SO hard to our heavenly father that your son will be home so soon... We are with you in this...You're not alone.
Be Well.

Anonymous said...

I am still praying for all 5 of you every day. Jack is in the best hospital and getting the best care. I'm so glad that you are comfortable with his drs, it's so important. Just take it one day at a time and before you know it Jack will be home with his sisters and life will be perfect! I will be in philly all next week visiting family, please let me know if there is anything you need! ncdanella@yahoo.com

Natalie042205

Anonymous said...

Well that sounds like a great idea giving the air he needs. I hope that gives the strength he needs. Its amazing how on this board you don't know everyone but feel compelled to want to help or send prayers or wonder how families are doing. And you guys are one of them. I wish there was something I could do to help....but you have all our prayers.

Christine76

Anonymous said...

Megan
I just wanted to tell you that Jack is in our prayers and thoughts everyday. I am glad that CHOP is doing a great job for you. We will keep your whole family in our prayers and that Jack is home soon and with his two little and cute sisters.

nicole (mikeandnicole05)

Anonymous said...

Megan - I habe been checking your blog for updates and want you to know that Jack and all of you are in my daily prayers.

He is at an excellent hospital. I know how hard it is not to have answers and the waiting is the worst. I am glad the girls are doing well.

Hang in there. I will continue to pray that you get some answers and Jack can be home soon.

Christine (krissi105)

melissa said...

Frank and I are praying every night for all of you. We're confident that CHOP will get Jack home by Christmas...he's a fighter!

Please call if you need anything...

melissa

Sommer said...
This comment has been removed by the author.
Sommer said...

You and PJ CAN do this! Jack has such strong parents.. im sure he is just as strong! I cant stress enough how my heart goes out to you,
As always.. i send you , PJ and Jack ALL my prayers!

Anonymous said...

Megan~you and your family are in my thoughts and prayers. Tons of healthy vibes to Jack and wishing that he can come home soon!
Ginny (Ginnydpe)

Anonymous said...

Megan~you and your family are in my thoughts and prayers. Tons of healthy vibes to Jack and wishing that he can come home soon!
Ginny (Ginnydpe)

Anonymous said...

I keeping all of you in my prayers. Don't forget we live so close to each other -- so don't hesitate to let me know if you need anything.

Sandy (sandykins)

Anonymous said...

I'm really glad CHoP has been so good to you guys. It really is a fantastic place. While it's hard for anyone to be in the hospital, it's especially hard for children and their parents. Everyone there understands that and tries to make you as comfortable as possible. If Jack does need to be there for the holidays they'll take extra special care of you guys.

I'm still keeping Jack in my thoughts. I hope you get some answers soon.

Sarah
oct11bride03

Laurie (njirish) said...

Keeping you and your family in my thoughts and prayers! I can only imagine how hard this is for you. I know it is hard, but during times like this it is important to count your blessings. I pray that your family can be home together very soon, and that you find the strength you need to get through this time apart!

Anonymous said...

I'm glad that Jack is receiving the best care and that you and PJ are happy with his doctors. You are all in my prayers every day. I hope that Jack comes home very soon. Stay strong, you will get through this. Remember how many people are thinking of your family and Jack! take care, Elizabeth (mrs.hj)

marree27 said...

Jack is sooo beautiful! His eyes are so deep what a lovely boy. My prayers are with you and your family and hopefully you'll have jack home in no time!

Anonymous said...

Aww Megan, thanks for the update. I'm so glad he's at CHoP and they are doing everything they can to figure him out! Best of luck with everything! Laura (penguingrrl)

Adrienne said...

I'm glad to hear the hospital is treating you guys so well. You all continue to be in my thoughts and prayers. I'm glad you got a chance to go home and see the girls, but can only imagine how difficult all of this must be for you. I pray that Jack gets better and is home soon.
MrsAdrienneT

Anonymous said...

Megan - Hi. I'm so glad that you are happy with Jack's care at CHoP! I pray that they can figure out what is going on with him and set it straight!
I can't believe how fast they all are growing and that it's been over a month already!
Hang in there and please let me know if I can be of any help!
- Kristin

Anonymous said...

I am thinking and praying for your family and for Jack especially.
(knittygrl)