Some of the NICU nurses took us on a field trip to the MRI Dept. Creg helped.
The waiting room was full but evidently a NICU baby gets to go first because we went right in.
A team of neurologists (8 to be exact) came in to see us and gave us their preliminary findings. They said that there are cysts on the brain which caused parts of the brain not to form during development. Other parts formed abnormally. There are also seizures which are very active and the Doctors will need to keep monitoring the dosage of medicine.
This was difficult to hear.
They also mentioned a certain syndrome that they thought this might be and that the ophthamologists would be able to prove if they are correct with this being that syndrome.
The Ophthamologist was supposed to come at 1pm but didn't show up until 4. We spent that time researching the syndrome that they were suspecting it to be. If it were that syndrome, then there would be small lesions in the eye. Fortunately, both Ophthamologists saw nothing wrong with the eyes. This was the best news we have heard in a long time.
So now the neurologists have to come up with another answer after they study the MRIs. We are also waiting for the genetic tests results to come back. Hopefully tomorrow will bring us some results from the hundreds of tests that have been done. Whether they are good results or bad results, we are ready to know what the answer is.
It is now 10:00 pm and Jamie is exhausted. NICU allows parents to stay 24 hours a day. Jamie would too if I didn't pull her out of there every night.
A good friend of ours has given us his house to use which is only 10 minutes away. We have had atleast 5 other housing offers as well. We truly are fortunate to have such great friends. You don't realize or appreciate it until you find yourself in a circumstance like this. When what is supposed to be the happiest day of your life turns into a nightmare, your friends and family really do get you through it and we both thank all of you very much.
OK, time to drag Jamie out of here and get some sleep.
OK, time to drag Jamie out of here and get some sleep.
Good Night!
21 comments:
Jamie & Creg,
Thinking of & praying for you & the little one.
Love,
Kim & Garrett
"Challenges are what make life interesting; Overcoming them is what makes life meaningful."
-Joshua J. Marine
Your family is in my prayers Creg!
still with you. keep on keepin' on. we're all with you craig.
h+m
We're praying hard..........along with the rest of Kent & Queen Anne's counties, love to you all,
Libby and Peter
I haven't stoped thinking or praying for all of you. Love Marybeth, Ed and all the gang in Elkton.
Hello!
Just want to let you know we're thinking of you! You two are the strongest and I know that baby is too! Soon enough you'll be able to come home....we miss you! Have a great day and stay stong!
Shan and Justin
If you need me to use any of my resources at AI to look up any additional information, don't hesitate to let me know! You are in our thoughts and prayers. We love you!
-Jenn & Ryan
Miracles happen every day. We are certainly praying for one now. You should know that people you don't even know...friends of ours...are praying for you all. Hang in there. Kiss that beautiful baby for us. Love, Susie and Thom
everything happens for a reason.. even though we may not know what that reason may be. and miracles happen- we have all seen them. we are praying for you every second and cant stop thinking about you and your family. hang in there and stay strong- we love you both!!!!!!
Love, Jon & Marcia
Your baby is just gorgeous! I'm sure you can't wait to get him home. You and your family will pull through this together. Take care of yourself. Thinking of you.
Thinking of you and praying that you guys stay strong!! Kyle and Erik
Baby Fleets is beautiful! You all have been in our constant thoughts and prayers.....hope to see you soon.
Love,
Deana and Ed
Thinking of you and your new beautiful family constantly. My prayers are with you.
All my love,
Erin
You are in the best of care. Braden was at hopkins when he was 3 months old for a very serious surgery. They did an excellent job with all of us. Hang in there, Faith will pull you through this. Can't wait to have all of you home!
Love,
Angela
Creg, Jamie & Baby Fleets
May it be a source of some comfort to know that many thoughts and prayers are with you all.
Love,
Shirley
I'm praying for a miracle to happen. Sometimes we are dealt with a challenge but with the love and support of family and friends, we can overcome all obstacles. You have my love and support and I can't wait to hold Baby Fleets.
Great Grandmother Charlotte
One can only imagine the range of emotions you guys are going through now. Just be there for baby Fleets and be there for each other. Don't be afraid to give in to the feelings of sorrow from time to time, but also remember to embrace and cherish the moments of joy. Use your support system to help get through the day, and never worry about asking for something... you never know how much people really are willing to give. Please include us in your support system as we are more than willing to help with whatever we can do.
Keeping you in our thoughts and prayers,
Jeff and Tammy Goodman
I'm Thinking of you and your family everyday hoping that everything will be okay. Stay strong you have alot of friends that care and are behind you and support you in difficult times. You are all in my thoughts. If you need anything at all just let me know. Theresa Nottingham
Love baby fleet's real name!!!!
Jetty is a fortunate baby to be born into such a loving and strong family. good things come of everything.... you have a beautiful baby to love! we are constantly praying for all of you.
xoxo the griebs
Hi Creg and Jamie- Please know that we are thinking of you and praying for Jetty every day.
Love,
Beth and Chip
Hi Jamie and Creg,
Just to let you know our thoughts and prayers are with you ... Jetty is a beautiful baby!
Chief and Mrs. H.
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