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.