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!