What A Year!

It's been a wild one! I remember thinking that 2012 was a doozy...little did I know what 2013 would turn out to be! Finding out about the SCT in March, going to Philly in April, coming back in August, going to Akron for most of September and October, and finally getting into the swing of things the past two months! Whew! We made it through and are enjoying Haddie every day. Praise God. Kate wrote a Facebook post that explains our doctors visit today:

Really good Doctors appointment this AM! No G-tube right now and we are allowed to remove the NG tube(feeding tube) from time to time at our discretion  Little Miss weighed 12 pounds 14 ounces and yesterday she took all feeds (except 3 AM) from the bottle. Biggest compliment from the Dr.... "You make fat babies, and that's what I like to see!" Yay! Haddie is finally chunky!!

So things are going very well. Haddie is growing and learning. We go to Akron on the 7th to get an EEG to see if she's still having sub-clinical (non visible) seizure activity. If not, we get to start playing with her seizure meds quickly. If so, we will start playing with her seizure meds at a slower pace.

We hope you all had a Merry Christmas and we wish you a Happy New Year. God bless!


Below is a picture of Haddie sleeping through the Browns/Steelers Game. She unfortunately lives in a house divided!

Seize-ure the Day

Like my creative yet stupid titles? Thanks. But hey, it gives you an idea of what this blog is about...seizures. The good news is that Haddie hasn't had any seizures for a long time! And the bad news is...well there really isn't any bad news. Praise God!

We took Hadassah to a Neurology visit on Wednesday in Akron and met her new and ongoing neurologist. To keep you straight because it can be confusing here's who we see:


Akron-
Neurosurgery- They deal with Haddie's shunt
Neurology- They deal with Haddie's seizures and medications
Palliative Care- Dont worry, it's not the same as elderly palliative care. They simply coordinate our visits and keep track of Haddie's ongoing progress

Parkersburg- Our Pediatrician
Help Me Grow- Works with us on Haddie's physical therapy and her speech therapy (aka feeding). They come into our home once or twice a month.

Marietta- Speech and PT
We go over once a month to get some extra tips and advice for feeding and physical therapy

So anyhow, we met with Neurology to talk about Haddie's seizure medications Haddie didnt really have seizures until the shunt infection. So we are not entirely sure that she still needs to be on the meds. Dr. Enlow, our new doctor, said that may be the case but he's not so sure. He would have expected the seizures to stop after the infection cleared but instead we had to up our dosage on the meds.

But he's willing to test this out. We come back on January 7th to do an EEG. They will take a look at Haddie's brain and see if she has any signs of seizure activity. If she does not we will go with the "aggressive" plan. That plan would be to take away one of her meds and see how she does and then take away another med in a month or two. If she shows signs of seizures then we will go with the "conservative" plan. This plan will be to slowly tweak her meds and see what is going to work best for her over the coarse of a few years.

Haddie is a lot more alert these days. Our concern is that Phenobarbital could slow down the speed of her development. So either way we will see if there is a better option out there for her.

The other cool news is that Dr. E tested Haddies reflexes. When he pressed on the bottom of feet her feet shook a bit. He said this was due to Cerebral Palsy. We knew that Haddie could have this from the get go. He said though that he would expect someone with CP to be a lot tighter in her hands, arms, and legs...and Haddie is very loose. That was encouraging to hear because every day Kate and I do stretches with Hadassah to keep her loose....so it must be working.

3 nights ago we moved Haddie out of our room and into hers. She seems to be doing pretty well. All in all she is doing great. She is taking most of her bottle and she weighs over 12 lbs now! We meet with our doctor on Dec 30th to determine whether or not she will be getting a G Tube or if she can eat on her own without any tubes. We are hoping for the 2nd option.

Thanks for your prayers and please keep them coming. Pray that Haddie continues to eat well and that they see no signs of seizure on the 7th. God is good no matter what. We hope you all have an excellent Christmas and a happy New Year!!!!

7 Months

Hard to believe it has been 7 months! Haddie is growing and learning every day. We had a good doctors visit last week with our pediatrician. Haddie was up to 11 lbs 2oz. The doctor said she was gaining weight well and was happy with the amount she was taking through her bottle. We will meet with him again on Dec 30th to see how she's doing and then decide on the G Tube. If she's doing good on the bottle she may not need the G Tube...which would be great.

It's really cool to see Haddie making little steps. She seems to be getting stronger neck muscles and can lift her head a little bit better now. She also is getting better at tracking objects with her eyes.

The best feeling is that Kate and I are finally getting into a routine. We feel settled. We are comfortable leaving Hadassah with family and friends on occasion. Last night Kate and I went out on a date to grab some dinner and watch a movie.  What a blessing. It was good to just be a husband and not worry about being a dad for a little bit. Kate and I will make that a monthly practice...and I encourage parents out there to do the same. It really was an enjoyable night.

We are very thankful for your continued prayers. Here's a cute video of Kate's family and Haddie on Sunday afternoon:

Snoozin

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!!!!!!

Haddie's 1st Sunday

Haddie's broken her last record! She's been home for 3 days now! And so far, so good. We have been working with her on her feeds and doing exercises for her. We have to go back for a follow up visit in Akron on Tuesday. Last night my grandparents came down for a visit.

And today we were able to sneak her into church. Half of our church was at the Envision service so we thought it would be a good day to get her in and out without much contact...and she fit into my sermon pretty well too.

Hopefully we can bring her back again soon...but I'd be lying if I said taking her out in public doesn't worry me. Haddie's still a bit fragile.

God is good. Very glad to enjoy this weekend with my family.

Waiting

Something isn't quite right with Haddie but we still aren't sure what. They keep checking to make sure that her shunt is okay. The doctor says it is okay. And the CT scan shows that it's okay. But her symptoms seem to point that it's a shunt problem. She's lethargic and still has the lower heart rate.

They have checked her for some type of respiratory virus and so far all of the cultures have came back negative for that. She definitely sounds like she has an upper respiratory problem though...very phlegmy.

So we can't put our finger on what the main problem is just yet. They are giving her antibiotics just in case.

So we will wait and see I guess. Not much more we can do. God is good.

Thanks so much for your prayers.  

Back in Akron, Another Surgery

Last night Around 4pm Haddie started having short seizures again. Her heart rate also was rather low. She normally has a heart rate around 130 and hers was in the 100s. Kate called Akron and they thought we should bring her in to get her checked out.

We got her around 10 and did some tests. We got admitted around 1. It was a rather stressful night. We had given her seizure meds at 9pm, she had a seizure lasting 3 minutes in the ER so they dosed her with Ativan, then after consulting neurosurgery they wanted to give her a 1 time extra dose of phenobarbital. We told them that wasn't our favorite idea but since we were tired and just wanted to get checked in we went with it. By the time we got admitted Haddie was having her heart rate dip into the 40s because of the sedation.

She did okay through the night. Neurosurgery looked at the CT scan and thinks Haddie's valve needs to be replaced. So they are going to do surgery at 10 this morning.

We would appreciate your prayers. Very rough night and we were frustrated that we let them do the extra dose of phenobarb. But she's okay now and hopefully this surgery will help her out. Have a great day!

Haddie's Home

Last night was a good one. About 9pm Kate and her mom rolled into the driveway with a Haddie in the back seat. She didnt have any more seizures after the one on Tuesday and seemed to be doing pretty good so they let her go.

We both felt a lot better about this discharge than the last one. Haddie may end up in the hospital again...but she's doing good for right now and we will enjoy her as much as we can.

We had a regular doctors appointment this morning with Dr. Tomlinson, who is excellent by the way, and that went very well. Plan to increase her feeds so that she can grow a bit quicker. She's at 8lbs 8oz right now which is pretty much the same as where she has been for the past few weeks. Surgeries and having a big belly have slowed her down a bit.

She seems to be doing pretty well. She is a bit tired but not lethargic like before. We go back to Akron in 2 weeks to check the shunt and also revisit the seizure meds. We think that the phenobarb level is a bit high and that's what's causing her sleepiness.

That's about it. Our goal is to keep her home and enjoy time with her....and try and get into some sort of routine. God is good.

Haddie Update

As you know we were scheduled to come home on Monday but had a shunt valve replacement surgery done instead. They talked about discharging us yesterday but Kate and I were not big fans of that idea. Haddie follows a pattern after you mess with her head...she does okay right after surgery, then has a few seizures that don't last very long, goes a few hours without any seizures, and then has a long one that requires additional medication.

If we were sent home and she had a seizure lasting for more than 5 minutes, we would have to give her a rescue dose of medication, call 911, and take another helicopter ride. So we said we should probably wait a day.

And Haddie had a seizure. 24 hours after surgery. That lasted 6 minutes.

I'm glad we know our daughter so well...I just wish she would prove us wrong sometimes! They gave her some ativan which stopped the seizures and helped her out. Overnight she didnt have any more seizures or problems. The plan is for her to still come home today. Which we are okay with now.

We appreciate the continued prayers. Our hope is to get Haddie home sometime today and keep her at home for at least a couple of weeks. We obviously hope for longer than that but we know it's likely that she will have to have the valve replaced again. But God is able and can do miracles...we already are aware of that.

Have a great week!

Surgery Results

Haddie is out of surgery and we are waiting to go to her new room. Dr.Chen said everything went well. They took out the valve and went in with a camera to see what they could see. There are more dead bacteria cells in the tube that could present a problem down the road. She flushed the line to try and get some of the dead cells out. She replaced the valve with one that had bigger holes. The upside is that is will drain more fluid but the downside is that it could allow bigger junks of dead cells in which could clog.

Bottom line: Haddie is okay but most likely isn't done with shunt surgeries. We could go home within a couple of days. And hopefully we can stay home for more than two weeks. Once discharged we will come back every 2 weeks just to check the shunt and make sure no clogs are forming. We have the upper hand now since we know how Haddie acts when it's clogged and also know how her fontanel gets firmer.

Thanks for the prayers. Hope to have our Haddie home sooner than later this week. God bless.  

Another Day, Another Surgery

Haddie was on target to come home today. She was very alert and seemed to be doing better. However, yesterday and a little bit the day before Kate noticed that Haddie wasn't her alert and feisty self. She also seemed to throw up after most of her feeds...which are on a 30 minute pump. Kate felt her fontanel last night and it felt fuller to her...and then Haddie had a couple of little seizures. All signs pointed to a shunt problem...and we were right.

They took a CT scan and then this morning Dr. Chen came in and felt the shunt. She said that once a shunt gets infected it is not uncommon to have to replace the valve a few times because dead cells will clog it up. And she believes that the shunt is clogging up. So today around 2:30 they will go in and replace just the valve. They will take a look with a camera to make sure all the other components are functioning. So hopefully they won't have to mess with the line that goes to her belly.

I guess when you have been at this as long as we have, this type of thing doesn't hit you as hard as it used to. It's frustrating but we are just happy that Haddie is here and doing okay. We look forward to a day when we can bring her home and enjoy her but that day isn't today.

God is good. He's in control. And we love Him. He's been very good to me and my family and I know he'll help us through the surgery today.

Also, please pray for a man at the Belpre church named Wes Crum who is having a shunt put in today. I've heard adults don't have as much trouble as babies do with shunts so we'll pray that's the case with Wes. God bless and have a great week.

Quick Update

Been a few days so I thought I'd give a quick update. Haddie is doing well. Kate and the nurses have been working on feeds with her and so far that is going good. Kate came home tonight for a job interview. We head back up tomorrow to spend the weekend with her. They think discharge may be on Monday if everything goes well.

I've enjoyed a few days at home myself. Thanks for the prayers. Hope to have my little girl home for good next week.

Sucessful Surgery

Haddie ended up needing surgery today at 9:30am. The fluid on Haddie's brain is supposed to be connected by 4 ventricles. That makes it so the shunt can effectively drain any fluid from all of them. However a wall formed between the ventricles making it so the shunt wasn't draining all the areas it needed to. So they went in through her current shunt site and poked a hole in the cystic wall that had formed. The tube was inserted in that area to help drain it.

This whole procedure went very well. Haddie is crying and noisy...and that's a good thing. We had noticed that she wasn't herself the day we took her home. She wouldn't cry when you changed her or put her in the car seat...which she normally would do. She also is following you better with her eyes now.

So with the UTI gone, which was affecting her belly, and the brain problem fixed...it would seem that Haddie should be on the road to recovery now. They will do a CT scan of her brain later to make sure things are better. Her blood count is a little low so they will give her a blood transfusion too.

Thanks for your prayers. Praise be to the God who hears us and continues to let us love and care for our beautiful little fighter.

Possible Surgery Today...Please Read & Pray

They found out that Haddie has a UTI that was giving her problems. They started medications and that seemed to be clearing things up. Kate, however, felt the top of Haddie's head last night before she left and noticed that her fontanel was harder than before. The fontanel is the soft spot that if we feel it can tell us if theres any extra pressure in Haddies brain. 

The nurse practitioner noted it and said she would bring it up in rounds this morning. Over night Kate got a call that Haddie's heart had stopped for a few seconds again and then came back up. Her breathing stayed at 100% and so did her saturation level but her heart went to 0. Kate had also pointed out to the nurses that Haddie's heart rate was unusually low yesterday. 

This has prompted them to believe that there could be more pressure on the part of the brain that controls the heart. They just intubated Hadassah and the neurosurgeons are looking into it. It may require them to go in and place another shunt in the location of the ventricle that controls the heart. Or they may have to pull her current shunt again if they find anything wrong with it.

Either way, it's looking like we have another surgery at some point today. Please pray for us and Haddie. 

I really want to complain and whine right now and say this isn't fair for Haddie. But that would be pointless. The world stinks sometimes and that's not God's fault. There is a God. We asked Him and you asked Him to heal our little girl. And maybe this is His way to get that accomplished. We have no where else to turn but to Him...so we will suck it up and trust His plan...whatever it may be. God is good. 

I will update either this blog post or a make a new one later on today at some point. Love you all.  

Back In The Hospital

I know what some of you are thinking from looking at the title "wait...I didn't know they left?"  Well let me explain the past 24hrs.

Yesterday we were scheduled for discharge. The only thing holding us up was making sure there would be a home health nurse at our house when we got home to teach us how to administer the antibiotics. We got a call at 10 am letting us know that would be set up at 6pm. So we knew for sure that we were getting discharged.

When we came in though, Haddie seemed to be a little lethargic and her belly was a little big. We had been concerned the day before about her puking after bottle feeding...something entirely new for her. Then yesterday we see she is not exactly herself but the doctors didn't say anything about it. So they gave us some papers and told us we were free to go. Kate was pretty nervous leaving the parking garage because she felt something wasn't quite right with Haddie. I felt it too but we both chalked it up to us being paranoid first time parents.

Hadassah's heart rate and breathing were ok. We still have the monitor and had her hooked up. Her breathing looked good on the monitor but after feeding her it sounded liquidy (new word I just made up). Her belly also seemed to be getting bigger. We already had a doctors appointment scheduled in Parkersburg this morning so we decided to wait it out and see what he said.

Dr. Tomlinson, our regular pediatrician, had her get labs and an X-ray. Results showed that Haddie's stomach was a bit frozen up. He called the doctors at Akron and they decided it best that we go back there rather than going to Camden Clark. Camden doesn't know her and last time we took her there they freaked out and we took a $37,000 helicopter ride (thank the Lord for insurance).

So we are back in the hospital again. We should have trusted our gut yesterday but sometimes it's hard to figure everything out. Haddie is doing well really. She's a bit lethargic and her belly is big...but they are working on that. Not sure on timeline but we think it may be a couple of days until they get things back to normal. Kate is probably going to stay the weekend at her parents and as long as things are good tomorrow I will be headed back to Belpre to get some much needed work accomplished.

Thanks for praying for us and loving us. We hope you can meet Haddie real soon. God has a plan and we will keep rolling as always. We actually feel better being back here because we knew something wasn't right...and now they can figure it out so the next time we go home...we can smile about it.

3 Good Days

We've been rolling the past 3 days. On Friday the doctors decided to extubate Haddie as I wrote about. She did great with that. So much so that they decided to let her go to room air last night. And she has been doing great with that. She's breathing all on her own.

Then today they started feeding her by bottle again. She took 8 mls this morning and took 18 with us a little bit ago. She's making quick progress to get back to where she was before we came here.

She also has been seizure free since Wednesday night...and that seizure was probably surgery related. She's on seizure meds currently but we might see if they can wean those down over the next couple of days.

So it seems we are on track to get out of here by Friday as long as there aren't not any other problems.

Kate says thanks to everyone who came to the shower yesterday. We both just want to thank everyone who has helped us and are continuing to help us out. We are very blessed to have friends and family like you. Hope you have a great week. God is good.

Quick Extubate Update

Haddie has done well the past few days so they tried to take out her breathing tube today...and so far she is doing great. They have her on Vapotherm again. Basically it's just a nasal cannula that also gives her some moisture as well. She has tolerated it pretty well all day. So that is exciting and we are happy about that.

We had a little battle with the neurologist tonight that has us frustrated but hopefully it all works out. Haddie hasn't had a seizure since the night of her surgery 2 days ago...and that seizure could have been brought on by the surgery itself. Before that she hadn't had a seizure for 4 days. We pushed them a couple weeks ago to ease up on the Phenobarb, the seizure medication that knocks Haddie out. They eased up and she woke up and has been doing good. The new neurologist on call thinks her levels of phenobarb are low so he is going to raise them just to be cautious. We are afraid that will cause Haddie to be knocked out again and in turn will hurt her respiratory progress. Plus she really hasn't had seizures for a while and we think she can get off of the meds entirely after a bit. We voiced our concerns but he think it won't hurt her breathing and will also prevent seizures. We aren't very confident in his decision but we are going with it. They start to raise the level of the phenobarb tonight at 9. We will give this new neuro doc a chance. If he's right, cool. If not, we will let him know about it...in a Christian way of course :)

It's challenging at times to be our daughter's advocates. We want to trust the doctors since they went to school forever to make these decisions. But we also want to trust our 4 months of observation as well and make sure they get the decisions right. Sometimes we just gotta trust God and see what happens.

All that said, it's a good day. Haddie has that breathing tube out and is looking good. We just want it to stay that way. Thanks for the prayers. Have a blessed weekend!

Double Success!

Surgery to replace the shunt was postponed til 9:30 this morning. They took Haddie back at 10AM and around 11 they were done. They replaced the shunt and drain line and that went off without a hitch. Haddie came back to the room and they attempted to get a PICC line in...again.

The PICC line is important because her central line is getting old and soon will have to be replaced. They could replace it with another central line but she can't come home with  a central line in. She needs to be on antibiotics for the next 2 weeks. They have attempted 4 times before but couldn't get the PICC line in due to Haddie's small and tricky veins. If they couldnt get the PICC in they would have to consider a broviac...a port in her chest with external tubes sticking out that requires surgery to put in...obviously not what we want.

They tried the PICC again because anesthetic from the shunt surgery tends to enlarge veins. And it worked!!!! They got the PICC line in her arm!

She's doing good thus far. Hopefully by Friday she can be extubated. Then hopefully next week she can get back down to room air, start her feeds, and we can be discharged by Friday...if Haddie cooperates.

Praise God today that the surgery went great and they got that line in! Good news!

Surgery Tomorrow-Quick Update

Turns out that Haddie will need the shunt put back in. Kate and I were planning on this although we obviously hoped that it could stay out. Dr. Chen looked at how much fluid drained from her external line and determined it best to have a new shunt put back in. Surgery is tomorrow morning at 8AM.

The on call doctor, Dr. Forbes, hopes that he can take out the breathing tube on Friday, get her transferred out of the ICU room to a regular room by Monday, and get us home by the end of next week. We think that is an excellent plan. I am about to leave Belpre and head toward Akron to see my wife and daughter. When I see Haddie I'm going to give her a little pep talk and make sure she gets the plan.

So pray for the plan. God says that He knows the plans He has for us...and we will trust Him whatever comes our way...but we are hoping God, Dr. Forbes, and Haddie are all in the same page. If not, we will do what we've been doing. We will roll with it. God is good.

I will update tomorrow after surgery sometime to let you know how it went. We love and appreciate you all. God bless!

What's Happenin Haddie?

Haddie has been doing better and better over the past couple of days or so. She is back down to her normal size and seems to feel a bit better. We had a family meeting on Wednesday and made a few decisions on how to go about things. We made a plan with the doctors regarding Haddie's little seizures. If she has eye twitches or little arm/ feet shakes (indicators of a real seizure) 5 times in an hour OR if she has a seizure lasting more than 5 minutes then they will give her an extra dose of the seizure medication. Yesterday she had to have an extra dose...today she has not. And yesterday and today she has been more awake.

They are trying to get Haddie off of the breathing tube. They had 2 trials today and she passed the 1st and failed the 2nd. So they are going to wait until tomorrow to try again. At CHOP they just took it out and put her on CPAP. Here they leave the tube in, turn it off, and see how she does. Hopefully tomorrow she can pass all 3 tests throughout the day.

The interesting news today is that they MIGHT not have to put the shunt back in. Dr Chen, the surgeon that took it out, said that Haddie's head is smaller and theres a chance she may no longer need the shunt. They will test her on that over the weekend. I won't go into all of the details of how they will test her, cause it's hard to understand if you aren't here, but basically by next Tuesday we should know if she needs the shunt or not. They said to plan on it going back in just so we won't be disappointed. If she does have to have it put back in, surgery will be on Wednesday.

It would be awesome if we can avoid putting it back in. If the shunt goes back in, then it can become infected again...which would put us right back in the hospital for an extended stay.

So the plan is to wait until next week and then we will know the plan. Haddie has to be on antibiotics for 2-3 weeks. We think that they will let us go home with an IV pump so we don't have to stay.

It's a blessing to be close to home...yes...2 hours is close especially when you've been in Philly all summer! I will be coming home this weekend and staying until Tuesday night. Time for me to get back to work and get some things done at the Belpre Church. It's a wonderful place to be and I am excited to do some "church work" next week.

Hope you all have a great weekend! Please pray that she can get the breathing tube out and that she doesn't need the shunt put back in. God bless!

Haddie's Progress

Had an excellent and relaxing weekend at home. Kate really enjoyed the baby shower at Belpre. Thanks to everyone who helped and was there!

We got back to the hospital yesterday to find a much smaller Haddie. She no longer looks like a sumo wrestler...she's still a little chubby from her belly but the swelling has gone down in her face, arms, and legs. And yes I know I'm not supposed to call a girl chubby but I'm also not supposed to lie. :)

She remains infection free in her brain and has 8 days until they will reinsert the shunt. She was cold yesterday and the day before so they checked her just to make sure no other infections were anywhere else in her body. So far, she's clear of any other infections.

Since my last blog we have talked with the doctors about Haddie's seizures. These seem to be different than her normal twitches. They aren't full on body convulsions. Its usually just one hand, foot, or maybe her eye. But they do not seem to be hurting her and the doctors agree. The seizures aren't the kind that would further damage her brain either. They have Hadassah on 2 seizure medicines and 1 of the medicines, Phenobarb, really seems to knock her out a bit. We originally asked that they take her off all the seizure meds but since we have seen visual signs of her seizures, we are going to talk with them today about trying a 3rd medication to replace the Phenobarb. We aren't too worried about this but would like to work it out before we go home. It would be awesome if the seizures just stopped completely and we went back to the normal twitches.

So she is improving. She's looking better and is on track. Thanks for your prayers. Hope you all have a great week and if you have time, say a prayer for the family in the link below...they are trying to adopt and it looks like God may be saying yes to that prayer!

Be Our Baby Blog

Better Today

Our prayers have been answered today. Haddie is doing better for the most part. She hasn't had any more heart episodes. Last night she started passing gas and pooping some. Her belly is definitely softer today. They started her on 2ml of breastmilk every hour just to get things moving in her tummy.  And to help rid her of the water and swelling they gave her a dose of Lasiks.

So all in all she seems to be a bit more stable today. They will check the infection tonight to make sure it is getting better.

The only matter of concern is that Haddie appears to be having seizure activity. Haddie has always had little tremors or ticks where her body would shake for a bit. They checked her 3 times at CHOP and all 3 times it came back negative for seizures. Her tremors just come and go and probably are brain related but not a real problem. She had some tremors here and they decided to do a video EEG just to check. Infections can often cause seizures. At first the results came back negative but today they say that they came back positive. To us they pretty much look the same as her tremors. But the neurologist has decided to continually monitor her through video EEG and she also put her on seizure medication.

I'm not a doctor. But I don't really consider these "seizures" a problem. I'm not fully convinced that they are real seizures just yet. The nurse told us that often seizures are accompanied with heart rate drop and desats...Haddie has done neither while the neurologist witnessed what she called a seizure. Haddie honestly doesnt seem affected by any of the tremors that she has. So we will just wait this out and see what the continuous EEG reveals. It is possible that when the infection goes away, so will the seizures. Or maybe they won't. The only side effect to the seizure medication is that it can cause problems with breathing. That isn't a problem currently because she has a breathing tube in. Once they extubate her we will have to see how the side effects mess with her. Hopefully they don't.

I guess I'm not too concerned because for 4 months now I've heard how the doctors think Haddie's brain will affect her. Most of them have been off a bit. Neurologist said she probably couldn't breathe, eat, or move when she was born...which she has done and done pretty well. So if she has seizures, we will deal with it and keep rolling. If she doesn't, we will keep rolling. I could be wrong on that but for now I will remain optimistic that these seizures won't be a major problem.

Thanks for your prayers. They are working. Pray specifically that the infection goes away, Haddie gets her swelling down, and that the seizure activity doesn't become a problem. God bless!

Prayers Please

After writing this the results came back from the CT of her belly...no infection! So that's good. It's just gas that she has to pass. So it's serious but atleast it's not an infection. Praise God for that. 

I ask for your prayers knowing they havent ever stopped. God has always been in control of this and I know He is loving and cares for us. But the Bible says to call on His name and to send up prayers and petitions asking in faith. So I ask you to do that for Haddie now.

Haddie's infection is a doozy. It is still contained to her head which is a good thing. The infection is slowly getting better but it's still there and causing problems. They are treating it with antibiotics.

Haddie's belly is huge right now. They are checking as I write for what's causing the blockage. It could be air or it could be an infected abscess. Either way they will find out and try to lower her belly size. Her belly is putting pressure on her lungs which is making it harder for her to breathe. She is getting some fluid on them. So in short this has caused her "reserve" to be taken up. By that I mean it has made her fragile.

Last night at 4 am they went to suction her lungs and it didnt go well. Her heart stopped. They had to do chest compressions and within a short amount of time she recovered. They think her heart stopped because of all the stress on her lungs plus the infection on her brain.

She was stable for the most part until we came in at 12:30 and now they have her in CT to look at the belly blockage problem.

The dr. came in and told us this could go either way. She is slowly getting better and she may continue. They could find the reason for the big belly and fix that and she'd be doing a lot better. Or the infection could take its toll and get worse. And if that happens there's nothing more they can do really. Also, since she is fragile, at any point her heart could stop again. We have asked them to do chest compressions and help her if that happens. We think she's a fighter and we are going to give her every chance we can to survive.

50% doesnt scare me. The word fragile doesnt scare me. Are we concerned...absolutely. But I will not fear. God has proven again and again and again that He is in charge. He gets to decide how this plays out. So we ask you to talk to Him about our Haddie. We love her so much and 1 week at home with her was a blessing...but it's a blessing we want more of. We will trust Him and wait. That's all we can do.

And dang it, if any of you that are reading this don't have a relationship with God I encourage you pray about that. Talk to somebody about that. Our daughter is innocent and if God decides against what we want...I know she will be okay. But I know I'm not innocent and I know neither are you. I deserved death and eternity in hell and so do you. 1 sin separates us from God. He is too holy to be around sin. But thanks be to Christ, I am innocent in God's eyes now. The question is: are you? I don't mean to preach at you but I honestly don't know how you live without knowing for sure where you will go when you die....which could happen at any moment. Being a good person isnt good enough. You need to accept Christ and be baptized into His name to be sure. Christ saves us; baptism is how we call on his name. So if you haven't done that and you are reading this...please consider that. I want you to know the joy, peace, and hope that we have. Despite us going through this crazy storm...we have peace and assurance. Do you?

Thanks for your prayers and may the Lord bless you.

Infection Update

As I said before, they determined the problem Haddie was having was an infection in her shunt. They extracted some fluid from that shunt and decided it needed to come out. There currently is an external line coming out of her head that has 2 functions. 1. It continues to drain the excess fluid on her head. 2. It allows them to test the fluid for the bacteria.

They tested the bacteria and it is a staff infection. This is a very common infection. The doctors say that most likely she contracted the infection either from the initial shunt placement surgery or from her own body. This type of bacteria is all over hospitals and she could have had it in the shunt when it was placed. Or the bacteria in her body could have found the shunt and decided to grow there. It was not contracted by people seeing her and touching her. If a shunt gets infected within the first month of it being placed it almost always is due to the placement or the body. After a month, they will assume it was contracted from outside sources such as people.

So if you saw her or touched her, don't freak out and think you caused this...we don't think you did. We were careful with people and doubt she picked up any bugs that way.

Now we wait. Once the fluid is tested and comes back negative of any infection, they will count 10 days just to be safe. Then they will place a new shunt. Recovery time is a day or two for that. They most likely will continue antibiotics at home.

The good news is that Haddie is already showing signs of improvement. Her heart rate is in the 150s, her eyes seem to lock on to you more, and she's back to her feisty, beat up the nurses attitude. She's very chubby due to the IV fluid she is on. Its tough to see her so swelled up but thats part of the recovery process.

We are staying up at Kate's parents house which is an hour away. We appreciate the offers to stay in the Akron/Canton area...we just feel at home here and the drive isnt that bad. We are allowed visitors and we are happy to see people. Please just call before you come so we can make sure Haddies not in a procedure and there's not already people visiting. We can only have 4 people in the room at a time. We are usually there from 12-6.

Also, we will be coming back to Belpre Sunday for the baby shower. Haddie is stable and we feel comfortable leaving her with the nurses for a day.

Thanks for your prayers. We are positive. God has brought us this far and we trust he will see us home again. Hope you all have a great 9/11. May God bless His church, our country, our communities, and our families.

Updated Post Op-Good News/ Sigh News

Rather than write a whole new blog I decided just to give a quick update. Surgery to remove shunt went successful. She has an external tube now that will drain any fluid. Hopefully will see infection gone and recognizable improvements in. The next couple of days. We will keep you posted.

Good news: we know what the problem is and we have a plan to fix it.
Sigh news: we will be at Akron Children's for 10-14 days.


They tapped Haddie's shunt and took a sample of the fluid inside. It came back positive for bacteria. That explains her high heart rate and her wondering eyes and everything else. In order to fix this they must remove the shunt until the infection clears. They replace the shunt with an external one that will drain any fluid. They will also put in a Pic line in order to give her antibiotics to fight the infection. Once the fluid that drains comes back clear of infection and bacteria, they will wait a few days to reinsert the shunt.

All of this will take up to 2 weeks.

Honestly, we are just relieved that we know what the problem is and that they can fix it. Not knowing the problem was awful. We haven't determined if this infection has or will cause any more brain trouble for Hadassah. We will ask the doc in a bit. We do know that she is acting better today and that's a good sign since they started the antibiotics last night.

They are about to start the surgery to remove the shunt. We will keep you updated. We are positive. We know the problem. We are in Ohio and can stay at Kate's parents house an hour away. We are at a good hospital. And we have a God that is in control. God is good.

Say a prayer or two today for her please. Love you all!

Back In The Hospital :(

The last post was great...this one not so much. I'm typing this on an iPod so I will be short. Last night Haddies monitor kept going off because of a high heart rate. This is common if she is mad...it will hit 200 and will set off the alarm. Last night though it was hitting 210 and she didn't seem mad. She also had wheezy breath that sounded different. So we took her to Camden Clark ER.

They run some tests and discovered a bit of phnemonia in her lungs. They started her on antibiotics. They told us they were not equipped to handle Haddie and all of her conditions. They wanted to send us back to CHOP but we plainly protested and requested to go to Akron Children's Hospital since that's where our follow up is. They agreed and an hour later I was in a helicopter with Haddie headed to Akron. Kate and her mom drove up to her moms house to spend the night.

Haddies eyes are a bit different right now too. She isn't locking on to us very well and she's looking down a lot. Kind of a sign of shunt malfunction. They are doing tests to check that out. Her heart rate has dropped into the 190s and she seems to be breathing great.

So we got another storm to sail our boat through. The good news is I'm not the captain of the boat. The better news is that I know who that Captain is. And the best news is that I know that He cares for Haddie and no storm is big to Him. Prayers are obviously appreciated. God bless.

Haddie's A Rollin!

It's been a week and 2 days since we got back to Belpre. Life has been crazy but good. We are learning the ins and outs of parenting...it seems that Haddie has a lot of outs..or at least in her diaper it seems! All joking aside she is doing great!

She had an eye exam yesterday at Akron Children's Hospital. She passed with flying colors and doesnt have to have another eye exam for 6 months! So good to check that off the list...praise God. Then today we had our weekly visit with Dr. Tomlinson in Parkersburg...and that went good too. Haddie weighs 7lbs 12 oz and is gaining weight daily. She got some vaccine shots today....not her favorite thing.

Her two major accomplishments have happened in the past 24 hours. Last night she slept the whole night. We woke her up at 3 to feed her and she went right back to sleep! It kind of freaked us out a bit...thought she might be sick. I think she is adjusting...or at least I hope she is. It felt great to sleep that long! And then today Kate's mom came down and fed her through the bottle...60mls...yup...thats everything! And as I write this, across the room Barb is feeding her and its looking like she will take 60 again! Couldnt be prouder!

We have our first baby shower in Woodsfield tomorrow. Haddie will make a quick in and out appearance and then return to the protective bubble we have around her! It's tough...we really want to show her off...but we really dont want her to catch something either. We will keep referring to Dr. Tomlinson as to when he thinks its safe and she is big enough to go out in public. It could be a while.  

Thanks for all of the prayers and support. Haddie is a miracle and a blessing. Watching her grow and accomplish goals is truly amazing. God has blessed us tremendously.

Hope you all have a great weekend!

Home On The Range

Life is good. We have a Haddie at home! She is adjusting pretty well. The first couple of nights were pretty restless but last night she did better. She really enjoys bottle feeding and sleeping in her swing. We also gave her a bath yesterday which she somewhat enjoyed. All in all we are having a good time learning how to be parents.

Today we met with our pediatrician, Dr Tomlinson. We really liked him and had a good visit. His main goal for Hadassah is to get her off her NG feeding tube so she can gain weight better. We will be meeting with a speech therapist next month to work more on her feeding and hopefully by then she will have made some progress. He also said our main priority is to keep her infection free. he said that we really need to avoid crowds at all cost. If Haddie were to contract RSV or some other illness it would really set her back. So we won't be taking her out very much the first month at home. Visitors will be welcome but will need to wash before holding her and probably no kid visits just yet either.

Sometimes it's hard to believe that we are actually home. We are very blessed. Please keep praying for Haddie. And we hope you can meet her soon.

The Post I've been Wanting To Write

I have been waiting to write this post for a long time. I thought about this post back in April. There were several points along the journey when I wasn't even sure Id be able to write it at all. Back in June and July I was convinced that I could write this post but had no idea when. The past 2 weeks we have been itching to write this post but it kept being delayed. So today, in Gods due timing, I am going to write it.

We. Are. Coming. Home!!!!

Tomorrow.

Hadassah has been such a fighter and she has progressed enough that the doctors think she is ready. We have to check about 3 more things off our list today and she should be ready for discharge tomorrow afternoon. Then we will make the 8 hour trip back home and begin the next phase...which is being full time parents of sweet Haddie!

She is coming home with a feeding tube and an apnea monitor. She gets fed 60 mls of breast milk every 3 hours. Currently she is up to 19 mls through her bottle. The rest comes through her feeding tube. We will have to work with her to get better at that. The apnea monitor is just precautionary and we can hook it up when we want to...it doesn't have to be 24/7. Once we are sure she's not holding her breath during feeds and such we can send it back.

Last week Kate and I decided it best that she quit her current job as an accountant. It was a tough decision but we feel its best for our family right now. Haddie will have doctor appointments and we aren't sure of all of her needs just yet. We just know that Kate working 50 hours a week come January  wasn't going to be a good option for us. She is currently looking for other options that could work better for us. Thanks to Dave Ramsey, our savings, and your generous gifts we can do just fine for a while on my salary alone.

Many of you have asked what we need. We aren't really sure since this is our first time doing this! But we have registered at Baby's R Us and at Target. We have most of the basics: car seat, crib, and a swing. The rest is on the registry. We have 3 showers already scheduled: Sept 7th- Woodsfield; Sept 15th - Belpre; Sept 28th- Amherst. Also, the Belpre church and our small group have graciously taken the initiative to stock our fridge, pantry, and freezer with food for when we get home. We love these people!!!!

And so, now we begin the next part of the journey. We cannot tell you how much we appreciate your prayers, cards, and gifts. We have remained positive for the most part due to your stories and the support we have from friends and family. We are truly blessed. Don't worry, we plan to keep this blog up for a while.

Haddie still has a journey in front of her when we get home. We are excited to get started on that. We can't wait for you all to meet her. Just know that we are probably gong to be those crazy overprotective parents that makes you put on hand sanitizer and get a flu shot before you can hold her...just be prepared. It will be a few weeks before we can take her to church. So scheduled visits would probably be good at first.

We love you all and thank you for caring about our Haddie.  God is good. We thank Him for bringing us through the storm. We are pumped to get started on the next part of the journey. We will keep you updated. God bless.

Ps. That felt as good to write if not better than I thought it would!

Saturday Update

Hello! Hope you all are having a great weekend. I apologize for not posting on here after Haddie's surgery. Most of you know that it went very well. The surgery lasted less than an hour and Haddie came back to her room without a breathing tube.

Since Wednesday they have just been watching her recover. She's up to her full feeds and we've started trying to bottle feed again. Her incisions from the surgery look great. She currently weighs 8lbs! So she is doing pretty good. We met with the doctor yesterday to see what was holding us up. I think this doctor just likes to be cautious and I'm okay with that. Haddie has a swallow study and a hearing exam scheduled for Monday. The doctor says that we should be cleared for discharge no later than Wednesday. We hope so! We understand that it's all about God's timing. The hardest part has been thinking we were about to go home and then something would happen. But we know it's all been part of the plan.

This might be our last weekend in Philly...and we are okay with that! Kate and I both said it's weird to see Facebook statuses about kids going back to school...they were still in school when we got here! Summer has flown by!

Hope that my next blog title is :We are coming home!

Have a great weekend!

Another Bump in the Road

So I was hoping to write that Haddie was good to go and could come home on Wednesday. But that unfortunately isn't the case. Sigh.

We had a great weekend at home and surprised people with a visit. We told them Haddie most likely would be coming home this week. The doctor for the past 2 weeks has told us that they would decide today on Haddie being able to go home. As long as she didn't have any Bradys or major problems...she should be good to go. But we were a bit nervous because we knew that today we would get a new attending doctor because they rotate drs every 2 weeks. So we wondered if this doc would be on the same page. She wasn't.

If you can't tell from pictures, Haddie has a big head. No, she's not arrogant...she actually has a big head. That's due to there being fluid on her brain from the brain bleed. Every week they monitor her head circumference to see how much her head is growing. The doctor for the past 2 weeks didnt seem to think it was growing and it wasn't an issue. Today's doctor thinks it is growing and ordered a head ultrasound. The neurosurgeon who looked at the head ultrasound agreed with todays doctor and scheduled us for a shunt surgery on Wednesday.

We knew the shunt could be a possibility but nobody for the past month has mentioned it and didn't think it was needed. But apparently the doctors today saw it differently. The shunt will be put in her head and it will drain any excess fluid so there isn't pressure on her brain. It's a quick surgery and they say its a quick recovery...between 2-5 days.

We are very, very frustrated. We are frustrated that the doctors for the past 2 weeks either didnt catch this or that the doctor today is wrong. We were really hoping and planning to be home on Wednesday. But it seems that God has other plans for us. I guess it is better safe than sorry on something like this. We really hope she does well and we can come home soon. This is life in the NICU...you have smooth sailing for a while and then you hit a bump. This is just another bump. But at this point in the ride...it's a very annoying and pesky bump. We just have to ride it out.

Thanks for the love and prayers. Please keep bugging God for us. The persistent widow eventually got what she wanted and God is more caring than that widow's judge. He hears us. Please pray for a successful surgery and a quick recovery.

We love and miss you all. God bless.

Tube Is Out!

Haddie has been doing pretty well the past couple of days. She's been a bit feisty and we think that was due to the breathing tube...she really didn't seem too fond of it and tried to pull it out a couple of times. The doctors checked her out this morning and decided she was ready to have the tube taken out.

It's been about a half hour since they extubated her and so far she is doing great. They put her on RAM oxygen and plan on weaning that over the next couple of days. The goal is to get her back to breathing without any support. And once we get there, we should be close to going home...maybe with 2 weeks?

We shall see. Thanks for the prayers. They are working. We know we have just a little ways to go...but man are we excited that we could be going home soon!

Quick Update

As you know, Haddie had a successful surgery on Friday. Recovery, however, has been a little slow. They moved Haddie to the NICU West side after surgery because that's where babies normally go after a surgery. Kate and I have not been big fans of this decision. The West side is all open; no doors and no privacy. But worse than that, they don't really know our daughter there. Everyone has been real nice but we feel a few of their decisions have slowed down her recovery and those decisions were made because they don't know Haddie's quirks and personality.

Up until yesterday Haddie was pretty much out of it. That is due to them giving her morphine every time she would get feisty.  They assumed her being feisty meant that she was uncomfortable...but we know that's just how Hadassah is. Yesterday we advocated for her and asked they reduce the morphine. She's not in pain and if she is going to breathe on her own and get off the breathing tube, she probably shouldn't be asleep all the time. They agreed with that.

Then we got a call late last night from a nurse asking us if it was normal that Haddie was having little ticks or tremors. We know, and so does our regular team, that Haddie has those little shakes sometimes. We aren't sure exactly what causes them but they aren't seizures. The nurse last night freaked out a bit had her checked for seizures. Sigh.

They are going to move us back to the Northeast NICU soon they say. We aren't sure what exactly they are waiting for. The NE side can do exactly what the West side is currently doing plus they personally know our Haddie.

We are constantly praying that we are kind and loving to the people on the West NICU. It's very challenging because we are tired, we want her to recover quickly, and we want to get home in a few weeks. But it's all good. We know God's in control and soon Haddie will start to make quicker progress. She's made some improvements this morning they said.

So that's our life right now. Thanks for the prayers!

*** Got a call shortly after I wrote this that we will be moving back to the NE NICU today!***

Surgery Sucess

Yesterday day went well. Haddie went back for surgery at 11am and was done by 2pm. They removed all of the teratoma and took her tailbone so the tumor would not grow back. They also made Haddie's booty look a little more like a booty. She has a crack now! Maybe that's more than you needed to know.

She was moved to a recovery area and they are slowly transitioning her off of the breathing tube. They also started feeds back up this morning. So she's doing well so far on recovery. We are glad to be past that step. God is good. Hoping she continues to recover quickly and then we should be Ohio bound!

Reflections Thus Far

Holy cow, it's August! Time flies when you are having...well maybe it just flies. April 22nd is when we came to Philadelphia just to have a consultation. Little did we know the crazy events that would follow. We came just to make sure that we could do Fetal Surgery just in case it was needed. On April 26th it was needed.

It's hard to process everything that has happened so far. Kate and I still talk about how this is so surreal. This happens to those people on "A Baby Story" on TLC. It doesn't happen to us..well apparently it does. For some reason God chose us to be in this situation in this moment in time. Here's a few of my observations on the whole process.

#1  God is good. And He is not just good because He answered our prayers. I know that it is obviously easier for me to say "God is good" considering we still have a healthy and happy Haddie in room 94 of CHOP. But I would like to think that I could still say that "God is good" even if He chose to take our daughter. Because it is true. I know that He doesn't want death and destruction and disease. He never wanted that. But man chose to sin and this world got screwed up. Death, pain, and teratomas came into the picture. But He has still brought good things into the world and He chooses to intervene sometimes. Sometimes, for whatever reason, He does not. So we thank Him for doing it this time for us because He didn't have to.

#2 We aren't really that strong or special. People tell us often that they don't know how we do it or how we have kept such a positive attitude. We don't really feel that special. We really didnt have any options in all of this. Haddie had to have the surgery. So we dealt with it. She had to be born premature. So we dealt with it. We had to live away from home for a few months. So we've dealt with it. We may look like we are strong but I assure you that we are not. We both have broken down, gotten depressed, and became angry many times. Some moments we just hung on. We have relied on prayers, cards, and friends during all of this.

The only thing that would make us special is Christ. We are Christians and have hope of eternity. So we knew no matter what, Haddie would be okay. I have no idea how people without hope of heaven can make it through this. We have a peace that I don't think some of the people at CHOP have. And I'd like to take credit for that...but I can't. It's from God and God alone.

#3 God uses little things for His glory. I know that some of you that read this may not be Christians or may not pray a lot. But you have talked to God on behalf of a little girl...and God has received glory. Some doctors and nurses have seen our faith, doubted that little girls chances, and have seen God's glory. And in my own heart I've had my own doubts and worries...yet I've just tried my best to trust Him. And every day I see that precious child, I see His glory. God has used a 2lb 7oz little girl to change some lives for His glory. And that just pumps me up.

So that's just a few of the things I've been thinking about. We ask that you continue to pray...especially tomorrow as Haddie has surgery to remove what's left of the teratoma. We are so ready to go home. Apparently the Lord thinks I need to learn some more patience :)    Hope you all have a great weekend and thanks for joining us on this crazy journey called life.

O, and if you aren't a Christian and don't know about the hope we have, please feel free to ask us about it. We would love to tell you an awesome story about a man named Jesus.

Surgery Date Set

Met with the surgeons yesterday. Haddie has been gaining weight and is up to 5lbs 2 oz. They believe she is big enough for the surgery which will remove what's left of the teratoma. So a week from today, August 2nd, Haddie will have the surgery.

They will have to intubate her again in order to give her the anesthesia. They will go in and remove all of the teratoma and also take the tail bone. Apparently the tailbone is where the tumor could grow back some day and since you don't have to have a tailbone, they are taking it.  They will also do a little reconstructive work to make her little butt look more like a little butt.

Recovery time is anywhere from 1 week to 3 weeks. She will have to come off the breathing tube again which hopefully she will do quickly. Then as long as she doesnt have a ton of bradys...we should be headed home!

We are excited about knowing the date and knowing that we are almost able to come home! We aren't so excited that our little one has to be intubated and go through the surgery process....but it's what she needs.

God has truly blessed us. Please keep Hadassah in your prayers this upcoming week and especially on Friday. We appreciate you all! Have a great weekend!

Weekend Update

Well it's be over a week since I've updated. There really hasn't been too much going on. Haddie has been making progress slowly but surely. She currently weighs 4lbs 14oz and is gaining a little every day. Kate and I have noticed that she is definitely becoming a baby. Yes, I know she's always been a baby but she was a premie baby. She squeaked, enjoyed being in her box, and loved containment. Now she cries (quite frequently), likes being in her vibrating chair, and looks and acts like a normal baby. That is a good thing.

Kate's mom and dad are here this weekend and then on Sunday Nathan and Carley are coming back out for a few days.

Still no definite answer on when exactly we will go home. Haddie still has bradys and she needs to grow out of that. She need to be 5.5lbs before they will do the surgery. I'm pretty sure that her eligibility to go home and her size for the surgery will match up and that she will have the surgery here. So our guess is sometime next month depending on how Haddie does.

Kate's work has been more than generous to us. However, they have asked that Kate be back by September 1st. We have our medical insurance through her company. We are pretty sure about August so hopefully that will all work out. Kate obviously isn't leaving Haddie if she is still here. We could ask for a transfer to Children's Hospital in Columbus if time starts winding down on us. Please keep that in your prayers. We trust that God will help us in our transition back home.

Below is a link of the video of when we walked in one day and saw Haddie in her vibrating chair...she really likes it! Thanks for your continued prayers. We are in good spirits but we are very ready to come on home. God bless!

She Likes It

Movin On Up

Another great day! Hadassah has been making steady progress. She weighs 4lbs 3oz. She has attempted breastfeeding the past 2 days and seems to be warming up to it. They still feed her by her feeding tube primarily. The doctor came in today and talked to us about the steps for us to go home...we are getting closer. She just needs keep gaining weight, maintain her temperature, and have less and less bradys. She may come home with the feeding tube if she hasn't switched over to breastfeeding yet. We might be able to go home and then do the follow up surgery at Ohio State. The doc is checking with surgery to see if they are okay with that. If not we might have to come back to CHOP or they may do it before we leave.

The other great news is that Haddie was moved out of her isolet and into a crib today! They lowered the temperature in her box over the past few weeks and she has adjusted pretty well to it. The video below is her first time going into the crib. She looks so small in it!

We are very excited with all the progress she is making. Keep the prayers a coming. I think we are getting there!

Suck-cess

We have been having a pretty sweet week thus far! Man it's been crazy! Haddie has been doing great breathing all on her own. She is also maintaining her own temperature on her own. They keep lowering the temperature in the box and it's getting close to room temperature. That means that pretty soon she will be ready for a crib!

But today we got a surprise. We called to check on Hadassah this morning and the nurse told us that they were going to try and feed her by bottle! Up to this point she has received all her milk through a feeding tube. When we first found out about Haddie's brain injury the doctors sat us down and explained that she would most likely never be able to breath on her own (which she is doing), maintain her temperature (which she is doing), and suck and swallow (o just wait for it!). So when we got there we swaddled Haddie, Kate held her, and they gave us the bottle.

The video of what happened is below. Before watching we have to say this. The doctors and nurses at CHOP deserve some respect. They do an excellent job and they are very talented. So please understand that I don't fault them for telling us straight up what the results SHOULD be for Hadassah. But we serve a God who is bigger than what should happen. He has blessed us with a miracle that is causing many to praise Him. And we give him all the praise for the amazing things He is doing through our little girl. The doctors tell us what they think the science says. We put our hope in the One who made science. And with that...take a look at another miracle:

Suck-cess

 

Awesome News!

Awesome day thus far! First off, the Belpre youth group is here and we are having a blast! They did a service project for CHOP and they are currently out in Philly exploring. We head to Ocean City tonight! It's very cool and refreshing having them all here.

But that's not all...today we came into CHOP to find that Haddie is off any oxygen support! That's right, she is straight up breathing on her own.

O but wait. There's more! Our nurse told us that she was old enough and had met the requirements to be dressed! Obviously Kate was pumped...and I have to admit it...so was I. She is adorable. Hopefully you can see the pic below...if not I will fix it when I get home tonight.

What a great day The Lord has blessed us with. Thank you for the prayers...keep them coming and please thank the Lord along with us today!

Independence Update

Happy 4th of July! Well actually it's still the 3rd but I figure saying happy 3rd of July isnt the same...anyways...

Hadassah is doing pretty good. She currently weighs 4lbs, she is on low flow oxygen, she's eating 35mls every 3 hours, and is on her last week of antibiotics for her infection. She had an MRI of her lower back yesterday to see what the status of the teratoma is. It has a little bit of growth but nothing too significant. We are waiting to hear from Dr.Flake and the surgeons as to when they will do her surgery. We already know that she has to be 6.5 lbs for it so it will be a little while before that happens.

Haddie has had a few visitors the past week or so including my mom and dad, Kate's mom, and her grandparents. All of them have been allowed to hold Haddie....and they all have enjoyed that! Tomorrow night the Belpre youth group will be here. They will do a service project for CHOP Friday morning and then we will head to the beach. Looking forward to that!!! Then on Saturday the Browns  from Belpre will be stopping in. We really enjoy showing off our little girl!

All in all things are going well. We definitely get home sick and we definitely get frustrated sometimes but that's just the way it goes. Most days are good and Haddie is making progress so we are happy with that. Probably the hardest part is being our daughter's advocate. By that I mean that there is a lot said and done with her on a daily basis among the nurses and doctors. They have several teams that work with her and they are on a rotation. We think the lines of communication sometimes get challenging. One team suggests an idea to us...a few days later we realize it was never tried...we bring it up...and it's a new team who hasn't heard of what we are talking about. They do a great job here, they really do. But we feel its our job, since we are here everyday, to make sure they are all on the same page. Some of them appreciate that...and some of them don't.

That's what's going on. We are thankful for a couple of weeks in the right direction. Thanks for all of the cards and prayers....sorry if we missed thanking anyone. We appreciate you all. Hopefully soon we can post a picture of our Haddie in a crib and without any oxygen support! Then she will have her independence!!! See what I did there?!

Love you all!

Haddie Update 6-28-13

Been a few days since I have updated so we thought we would bring you up to speed. Haddie has been making some progress! Figure it might be easier to do this in categories:

Breathing- They extubated her last week and she was put on RAM...which is a type of high flow oxygen. She did great on that and so yesterday they bumped her down to just plain high flow. So far, so good.

Infection- They are continuing the antibiotics for the infection Haddie had. She seems to be doing better. They noticed that she was a little pale that past few days so on Wednesday they gave her a blood transfusion to help her out. That went well.

Food- She is up to 32mls of feed! So hopefully that will help her gain some weight a little more quickly. She currently weighs 3lbs 9oz.

Brady's- She did well while on RAM and had very few Brady's and Desats. Yesterday she had a few brady's. She was very agitated yesterday for some reason. But she's doing better today. Hopefully she can have less of them. Our goal- no bradys for 5 days/5 days of consistent weight gain. That equals her getting out into open air.

Future Surgery- Hadassah will, at some point, have to have a surgery to remove what's left of the teratoma. We had no clue as to when that would be. We called Dr. Flake and he said it would depend on her weight and an MRI of the area. She has to be 3kg before he would do the surgery. That's 6.6 lbs. So we know it will be a little while. However, Haddie may be able to go home before the surgery and then come back. Say she gets out of her box, breathes and feeds well on her own...but she's only 5 lbs or so...he said he wouldn't keep us in the NICU just to wait for weight gain. But ideally it would be good for her to gain the weight and get the surgery so we could go home and not have to come back. The MRI will reveal if the teratoma is growing or going to cause any other problems.

Visitors!!!!   We had the Tewangers and Metz last weekend. Kate's mom and grandparents got here Monday and are staying until the 5th. My parents are coming out Monday and Tuesday for their 30th anniversary. The Belpre youth group is coming out to do a service project and visit Haddie the 4-6th...then on the 6th the Brown's from Belpre are stopping in on their way to New York. Whew!!! We are excited to see all these people! It keeps us busy and we love to show off our cute little girl.

All in all, we are doing pretty good. We get homesick from time to time but that's normal I guess. We keep rolling and praying Haddie keeps making progress. We are really hoping we can make it back home in August. Thanks for all the prayers and support. God is good.

Have a great weekend!!!!!!!!

Preemie Sneezy Update

Things are going well. Haddie is still on antibiotics  and will be for the next two weeks for the infection. I posted a picture a few days ago with Haddie without a mask...I need to clarify that. Haddie is not in open air just yet. They had taken out her breathing tube and taken off all the tape. Then they put her on RAM...a type of high flow oxygen. What was cool was that she was without any breathing assistance for 2-3 minutes and she did great. She needs to gain weight for 5 days and not have a Brady for 5 days in order to be in "open air". Open air means she will be out of the box regulating her own temperature and it also means we can dress her. She may or may not still be on oxygen at that point.

Enough of my writing. I lured you into this blog with the promises of a cute sneezing baby....enjoy!

Link in case video doesn't play:

Preemie Sneezy

Video Update

Had a good day. 1pm we met with the 98.1 radio station to do an interview. They do a radio fundraiser for CHOP in September and they share a bunch of stories. We got to share Haddie's incredible journey. They will edit it down and give us a copy when they are done. It was very cool.

Kate had a good time at scrapbooking after that. Each Thursday she goes in and works on a baby book for Haddie. I do not attend...not because I'm above scrapbooking but because...well I dont want to. We did a video update of our meeting with the doctors at 3 and the PICC line they were trying to insert today.

Here's the link for anyone who cant see the video: http://www.youtube.com/watch?v=nzwtlCbqR14

She's got a ways to. But we will just keep taking it one day at a time. We are very excited to see Nathan, Carley, Lucas, Aimee, and Bella tomorrow night and spend the weekend with them. Then Kate's mom and grandparents are coming on Monday and staying a week or so.

Love you all! Have a great weekend!