Well today was my last appointment with the most amazing set of doctors I could ask for to help me with my little guy. Today's appointment went kinda like I thought it would, nothing too exciting (well besides I got to see my little guy) , He now weighs 5 lbs 14 oz, he has gained 14 oz... I figure he will weigh about 6lbs 5oz when he is born, not to bad considering he is going to be 3 weeks early. We got some good pics of his face again I believe he is ready to show the world how cute he is :) Other then that they just went over what to expect on the BIG DAY.
I try to tell myself I am ready for all of this to happen so we can start the road to recovery and bring him home, but there is just so much unknown on how things will play out when he gets here it makes it hard to be "ready" or even "excited". I was told today that it will be a couple of hours after I have him before I can see him before they take me by ambulance to the other hospital. I always dreamed of the day I would have him and get to cuddle with him but instead I have to see him and leave him, I don't know how I am gonna do it just thinking about it kills me. I know it is for the best and he will have family by his side but it don't make it any easier to accept it .
So far the amazing response to my prayer request has helped Parker stay put until they come to get him :)
Lets continue to pray that
* He stays in there for 1 more week
* He has the strength to avoid ECMO
* He beats the odds and is able to come home to his mommy and daddy <3
Thank you again , I can not say it enough to everyone that is praying so hard for my little guy, For those that are apart of "Prayers for Parker" I will be keeping you all updated through this site until he is home safe and sound with us. Yes I will post pics of his cute little face too :)
My Prayers are with you guys I am a Mother of twins and I can see what you are going through I had then 3 weks early and they had to stay in the hospital but it was a good thing as long as I knew they were in good hands it mad things better. God bless.
ReplyDeleteHi, I could'nt even imagine what is going on in your head right now with your emotions.. I really do feel for you .. I see how you are holding it all together with the trust in god. GOD BLESS. can't wait to see pictures! - Alisha from fb.
ReplyDeleteHi Julia,
ReplyDeleteI just wanted to tell you how brave and strong you are! I know this for a fact because I too gave birth to a baby boy (Robbie Rue) who was also born with a Diaphramatic Hernia on the right side, which aloud his liver, gallbladder, and intestines to invade the right chest cavity! Allowing no room for a right lung to grow. Robbie also had a completly seperate birth defect, a single ventrical heart, which combined all the chambers in his heart allowing blood to overflow with only lung and cause extreme pulmonary hypertension.
Robbie wasn't born at Cardinal Glennon but 5 years ago they didn't do that, instead he was born at St. Mary's then when stable enough for transport he went to Cardinal Glennon NICU. I don't want to discourage you in any way by telling you that our stay was 7 months long in the NICU but I have my little boy here today with me. Cardinal Glennon is still a huge part of our lives! Dr. Sadiq in the NICU along with all of Robbie's primary nurses, they truely made it a home for us and I couldn't have asked for better care. The footprints program was just amazing, the socail workers, and ofcourse our home then The Ronald McDonald House. on July 22nd 2006 my miracle baby was born and I enjoy every second that I have with him.
I am and will continue to say prayers for you and your family! Keep Strong and Always Believe!! Remain Positive at all times!!
Robbie was 3 weeks old when he had his frist surgery, we did not opt to do ECMO. He was 4 weeks old when he became trached, Robbie had been vent dependent since birth, he currently is still trached but only requires the ventilator @ nite and O2 throughout the day. He is a playful little guy and lives his life to the fullest!
I would love to answer any questions that you may have as becoming a mother to a child as Parker or if you just need someone to talk to!! Please email me @ sitwme@gmail.com any time you need too.
I know how you are feeling! I know how my heart ached with fear and the not knowing! I know that today my pregnancy with Robbie still affects me in a very emotional way. Please remain positive, that is the only thing that kept me going day to day....I didn't let the negative news keep me down....I was always ready for the next step and where we go from there!
Lots of Love,
Angie Ingrassia
and my hero Robbie Rue
Hi Julia, I am participating in Praying for Parker! When my son Levi was 3 weeks old he was rushed by ambulance to Cardinal Glennon hospital where we learned he had Group B Strep Bacterial Meningitis. He was in a drug induced coma for 2 weeks, and spent a total of one month in the hospital. He was critically ill, and I thank God every day for healing our boy and giving him back to us! Our full story is at www.prayforlevi.com if you'd like to check it out. I would just like to encourage you not to be afraid to speak out in faith. I know it's scary, and you don't know what the future holds, but God is so much bigger than anything we can comprehend! I'm believing with you that Parker is going to be just fine! I know a woman whose daughter is currently in the NICU. Last week they took the baby off the ECMO machine, and she wasn't expected to make it. But the Lord had a different plan for her! Today she is getting stronger every day, and yesterday her breathing tube was removed! I feel like I'm rambling, but I really just want to encourage you with things that I have personally experienced. I know how it feels to go through something so devastating, and I'm here for you if you want to talk to someone who has been there. You can add me on facebook if you like. My name is Lynn Henderson McDonald. My entire family is praying for Parker, and for you and your husband!
ReplyDeleteJulia-
ReplyDeleteMy family and I will be thinking of you! There is no doubt that God is good and will hear everyone's prayers. You will be covered that day! My little niece had open heart surgery at 4 months old. She is now 1 and 1/2 months post surgery and thriving. You can read more about her here, (http://housethatjadebuilt.blogspot.com/) and I hope the experiences of my family gives you strenght and piece of mind!
Abbie
Julia,
ReplyDeleteParker is headed to the right place. The NICU staff will take great care of him until you can get over there! I promise!
julia, i,ll be praying for little parker everyday until i know he,s home safe with his parents,i believe god will watch over him and help him pull throw this.please keep us updated,i would like to know how this little guy is doing and you and your husband too.
ReplyDeleteDear Julia,
ReplyDeleteMy son is a CDH suvivor! He was in the nicu in Philadelphia for 2 months and has very little complications. He had a LCDH with stomach and bowels up. He is 17 months old and doing great. Miracles do happen. Think positive thoughts. Our babies need nothing but positive energy!
Many Prayer,
Megan
Julia, my prayers are with you and baby Parker. I wish you and your husband all the love and strength in the world. There truly is a reason we are chosen to be CDH parents! If you would like a blog to read, www.rileycoombs.blogspot.com. I see you have been through so much already and admire your strength and outlook.
ReplyDelete