Thankful

I think Thanksgiving will be a little different this year. We are hosting Kate's entire family and my entire family tomorrow. This isn't our first time doing this. The tables are set up, the tvs are ready to show some football, and the turkey is brining as I write. But as I look around the rooms, I noticed something different this year. In the large family room there's a pack-n-play besides the table. In our bedroom there's a bassinet. In the garage there's an empty box where a stroller used to be. In the family room I'm sitting in now there are two swingy, rocky chair things(yes, that's the technical name for them) and a stack of diapers and burp cloths.

And upstairs in a bathtub getting washed up is a Haddie.

And for that, we are extremely thankful.

Because you and I both know it didn't have to turn out like this. At several points God could have done something else. But for some reason I'm not quite sure of, God let us keep our Haddie. God chose this path for us. And hard as it's been at points, it's all been worth it. She's here. She's home. And that is still hard to believe.

Haddie has been doing well after her last surgery (well, the 2 in 1 day that is). She has woken up more and her eyes seem to be tracking better. We are continuing to work with her to get her better at taking milk from the bottle.

Please specifically pray for that if you could. By the end of December our doctor wants Haddie taking 720 mls(24oz) by bottle a day. If she isn't there, he wants to put in a G-tube. This will require a surgery and a tube placed directly into her belly. Apparently this has less of a chance of infection as her NG feeding tube has now. We really want to avoid this if possible. But Haddie doesn't always cooperate. Please pray that she does!

God is good. We hope that you all have a very good Thanksgiving. I think we all have a lot to be thankful for.

Here's a video of Hadassah before bed the other night: https://www.facebook.com/photo.php?v=534997918832&l=2594890134536596

Surgery Thursday

We have gone almost 4 straight weeks at home and it's been a lot of fun. But we knew that there was a good chance Hadassah would need surgery again. We knew it could happen at any time and so we tried to enjoy every day at home with Haddie. Today's appointment revealed that Haddie's 4^th ventricle has sealed itself off again. We had thought that Haddie had been acting very sedated. We also noticed that her eyes barely opened and when they did open they were not together. We thought it was probably the seizure medication but today’s CT scan revealed what most likely is causing this.

They will go in on Thursday morning at 8:30am and attach another tube to her current shunt and run it to the 4^th ventricle. That should produce quick results and we will know if it’s the ventricle or the medication that’s causing Haddie to be out of it. Either way it will be good for her.

This surgery is not very invasive and recovery time could be about a day. Hoping that’s the case this time.

Kate will head up tomorrow night and her mom will be with her. I will be staying at home and getting ready for the Belpre Youth Rally.

Please say a prayer for us on Thursday. God is good. We are in good spirits and are hoping this surgery will give us back the wide-eyed, feisty, little girl we knew before this whole shunt issue came around. If not, we are still very blessed to have this sleepy little gal who is still a miracle. (As I wrote that last line she gave me a grunt…guess that means she knows she’s a miracle!)

3 Weeks

Tomorrow marks 3 weeks that we have had at home with our Hadassah...and what a joy they have been! We are thankful for every day that we have with her. You truly know the blessings of everyday life with your baby when you've spent 3/4 of her life in a hospital.

Haddie has been doing well. She has weekly doctors appointments both with Dr. T in Parkersburg and the neurology team and neurosurgeons in Akron. On Tuesday she weighed in at 10 lbs! Neorosurgeons are currently happy with her shunt but will take a CT scan on Tuesday just to make sure things are still okay.

Haddie has been doing awesome with her bottle. She still has the feeding tube and we feed her every 3 hours so she can gain weight. We always try using the bottle first and whatever is left we put in through her tube. Yesterday she crushed it. Her full feed is 75 MLs- 9AM she took 50mls; at noon she took 47 mls; and at 6PM she took the whole bottle; and then at 9PM she took 51 mls. Like I said, she crushed it. Which means we are moving closer to getting that tube out.

The only main concern we have is Haddies' alertness. She used to be able to track you with her eyes and was alert more of the time. We think her seizure meds have put her into a sleepy state. She does wake up some but isn't nearly as alert as she used to be. We plan on talking with neurology and seeing if we can lower the med levels. Haddie has been seizure free for 2 weeks now.

Help Me Grow has been here a couple of times and today one of the ladies hit the nail on the head regarding our biggest problem. She said it is very easy to just do custodial care for Haddie. Since Haddie doesn't respond much to us right now...she said it is tempting to just take care of her and not work with her on stimulation. That truly is a challenge. Kate and I are trying to "play" with Haddie more...but it is hard when she doesnt really play back. It's also hard because Haddie seems to have lost a little bit of the alertness she once had.

But we are going to do our best. We know she can do amazing things. She already has. We both think she will get back to where she was before the shunt infection and seizure meds...and she will go far beyond that. The key word for us is patience. You would think we would have learned that by now, haha! God is good and I'm glad He continues to teach us.

Enjoy some pics: Bathtime with naked Haddie

 Haddies first time with snow...she tried to lick a few flakes!

Record Breaker

Well we are breaking records left and right. We have had Haddie home for 11 days...and it's looking like we will get a few more! We took her to Akron for a checkup...and they didnt keep her!

We met with neurosurgery and they checked the shunt. They seemed to think everything was fine. Our 2 concerns was that she had a high heart rate last night and that when we pump her shunt 30 times every 3 hours it doesn't fill up well at the end. They were not concerned with the heart rate and said that we might only need to pump the shunt 10 times every 3 hours rather than 30. So they sent us home! We have to go back in a week for follow up. O and she gained weight...she's up from 8lbs 10oz last week to 9.3 this week!

God is good. He always has been. We are just thankful for every single day we have at home with her. She probably will have to have the shunt valve replaced at some point but for now we will just enjoy our Haddie. And keep breaking records...and expectations.

Rhythm

We are getting into the swing of everyday life with Haddie...and we are enjoying it. Haddie has been doing pretty well. We are working on her feeds trying to get her to take more. So far that's been a struggle. We are basically starting all over again. We are also back to the beginning with her physical therapy. Before the shunt infection Haddie was able to lift her head and move a bit better. So we have been doing exercises with her to get her back on track.We are enjoying that though. We are just happy that she is home. I am getting back in the swing of things at the church and Kate is getting used to staying at home with Haddie. We have been able to get out a few nights and have a little bit of a social life.

Hadassah's shunt seems to be working okay. It was supposed to last around 2 weeks and we are now a few days past that. Tuesday we will go back up to Akron to get it checked out. Kate and I both think there's a good chance it will need to be replaced. But this can be an outpatient surgery. Hopefully we are wrong though and this shunt will keep on working.

It's fun and challenging being a parent. We love that little girl and thank God for every day we have at home with her. Hope you all have a great weekend! God bless!

O and thanks to everyone who came out to the trivia night that was put on for us. We appreciate that!!!!!!