Missing you...

Another Christmas has come and gone and you weren't here to celebrate it with us. We missed you my sweet little girl. This year someone gave us this book called "Angel's Star". It's a beautiful book about a little girl named Angel who wants to find the perfect gift for Jesus on his birthday. She's very sick and spends all her time thinking about what to get him. Well she ends up being his gift. She becomes his new Angel- just like you! (Your name is Angel and you are an Angel)
The book is really hard to read without crying. 2 Christmases ago, you were still in my belly. I remember it like yesterday...

There's not a day that goes by that I don't think about you sweet girl. Your sister misses you dearly and still talks about you constantly!

I hope you had a wonderful Christmas in Heaven with the greatest gift God ever gave us!


It's hard to believe that soon will be 2 years since we lost our sweet girl. I still miss her dearly and still shed tears for her. I find it especially hard lately when I look at her brother and it makes me think of her and makes me wish even harder that we got the chance to raise her.



(For those of you who have asked, here is the link to Jared's blog- Steve does this blog- so I"m not sure what all he posts- I do check it out from time to time

my sweet baby

So its been awhile since I've posted anything. If you have been keeping up with Jareds blog we are currently driving to Durham to Duke for his cord blood infusion.

Its been a rollarcoaster to say the least. Jared has spent 4.5 weeks of his 6 weeks of life at Hershey Hospital. We were discharged from the NICU to find ourselves with a shunt infection that made him very ill and we ended up in the PICU. He's back home now and its off the Duke.

The NICU life was hard but the most difficult thing that hit me was seeing the 23 weekers in there. It brought flashbacks of holding my dear sweet little girl. I cried and got angry all over again. My brain couldn't wrap around the fact that she needed about 4.5 weeks to have been atleast given the chance of surviving. All I could think about is the unfairness of it all yet again... Why... Yet at the same time I'm in the NICU for my new son. Yet my heart still aches for my little girl. I've come to realize that no matter where I'm at in life- that ache will always be there.

While at the beach, I saw little girls around Angel's age and it would make me think of her and wonder what she'd be like. Then I turn to my other daughter who knows what I'm thinking and tells me Not to worry because Angel is having fun in heaven. For being so small she always has the right words for me. Though even now she still asks why Angel had to go to heaven and why Jared has to face these hardships- why does God do these things, she asks... Even as an adult I wonder these questions. With Angel it was something so simple as a blood clot causing me to lose her...with Jared a tiny piece of protein during development was left behind and caused a cyst in his head that caused all his problems... These simple little things cause such huge problems...noone ever said being pregnant was easy, but yet millions each day make it look that way. We do know God never gives more than we can handle and he must think we are very strong.

Taking each day as God gives it, living one day at a time...missing my sweet angel baby and looking at my new child as a miracle... I can't imagine that doctors wanted me to kill him. Unbelievable. Yes. The road ahead is long and people can't believe how well we are handling all of this... This pathway is easy compared to the path of losing our daughter... We will always miss her and she will always be apart of our life, but I'm so happy that we chose the gift of life for her brother so we could walk this new path- but we still cling to the memory of our sweet baby who never got the chance Jared has gotten.

Thank You...

For those who haven't yet made the leap over to JJ's new blog. Thank you to those who have sent donations! You know who you are. We bought JJ a cradle bed that works pretty well for him.



It has a lock that locks the bed in place, or it can be unlocked so you can rock him. It also has a pretty solid bottom to the bed that allows us to lay a series of towels under the mattress to elevate it for his shunt drainage to work properly. The trick is to elevate it not too much so that he slides down, and not too little to cause a backup of fluid along the shunt tract. He spends a lot of time during the day in it, and it has wheels so it can easily be rolled throughout the house. Our upstairs is 100% laminate flooring, so it rolls real nice. I knew there was another reason I put that type of flooring down when we bought our house! He doesn't sleep in it overnight yet though, he sleeps in our bed between us on another elevated blanket concoction. It's just easier that way if he gets to fussing. Hopefully soon he can sleep in his bed all night.

Thanks again to those who sent money for JJ!

Surprise! We are home!

It's been a hectic several days, and I have been unable to post many updates. JJ was discharged yesterday, and we have 2 appointments tomorrow, and two more in two weeks. We also have therapists coming to the house to work with him. With all the emails, calls, and paperwork involved in all of this, blogging isn't the top of the to-list for me right now. I have started a new blog site for JJ to separate his story from Angel's story. So please go there for further updates. It is http://jaredjoshuaorner.tumblr.com/

Steve

JJ is doing well, may be discharged soon!

Steve here again... Erica is doing well, and healing pretty nicely. She's finally able to make the walk from the main entrance of the hospital up to the NICU without a wheelchair. As for Mr. JJ, his blood tests they sent out came back normal, so that means he doesn't have any genetic or chromosomal abnormalities that caused his problems. He had an MRI Friday which came back with nothing abnormal besides extra fluid in his brain. JJ is still a mystery to the doctors, and a miracle to us. We've been trying to push for him to get off pain medicine, because he had one bad night a few nights ago and they upped his Fentanyl dosage. We weren't so happy about that. The on duty neonatologist talked to me yesterday and said they are trying to wean him off the pain meds, and then once that happens and they do another assessment, if all is well there's nothing more he needs to be there for and he can go home. I'm not sure what the exact timeframe is, but he said "very soon". He just gets really mad when he gets his diaper changed, but most babies do. We've been trying to be there for as many diaper changes as we can, and his weigh ins, because the two of us work much better and more carefully than the nurses do. The nurses try changing him themselves, and weighing him themselves. Those things are two or more people jobs right now. Braylynne helped change his diaper yesterday which she enjoyed. I finally got the camera to a computer so I can get pictures off, so here is a new picture of JJ. His head has been holding steady around 40cm.

Just a quick update...

This is Steve (Erica's husband) doing updates by the way... We were over to see JJ this morning and his nurse said he slept almost the entire night, and had poops at every diaper change. They've also increased his feedings to 50ml every 3 hours, and he's off the IV nutrients completely. They just have him on a fluid bag to keep his line available in case they need to hook anything back up. His head is down to 40cm as I said last night, but he did fail a hearing test yesterday. They're going to redo it at a later date. It's not totally alarming because we've heard about hydrocephalus babies having hearing issues, and even failing tests when they can hear fine. He may have been asleep when they were trying to do the test also. He sometimes sleeps with his eyes open and gives the illusion that he's awake. He seems to be able to hear because he will try to look in the direct of sounds sometimes, and seems to be soothed by hearing our voices. His eye test results arent back yet, but it appears he can see light at least, because bright lights make him squint. We're still waiting to hear back about his chromosomal and genetic tests. So far so good...

Jared Joshua Orner Update...

Erica is still in a lot of pain, and so is JJ. He's still dealing with pain from his legs and probably from his surgery also. He gets real worked up sometimes and his little heart races. The good news is he's been pooping pretty regularly and they keep upping his feedings, soon he'll be off IV food all together if he keeps progressing as he is. His head size has gone down from 42.5cm at birth to 40cm, which is great news. He has an MRI Friday to evaluate his brain. We've set up a paypal donate button because we've received requests from people for what they can do. It's on the left side of this page. We decided to set up a paypal account for him and to use any donated money toward things we'll need for him, because thats the best way people can help. Anything extra will be donated to the Ronald McDonald house of Hershey PA where we are staying. They have been great to us, and other NICU baby families we've met here. They are great. Here are some pictures of little JJ.


This picture is the day he had his surgery and was coming out of his anesthesia, he still had the respirator tube in.


This picture was from today, he's 5 days old now.