3 Steps Back...

Our hopes are obviously that Haddie will get into a sprint and keep progressing daily. However, we know from what everyone has told us, and today's current events, that this is a marathon. It's a long journey that will have some hills. O how I hate hilly marathons.

Haddie had some respiratory problems this morning that started an in depth investigation into what is going on with her. Most things they chalk up to her being a premie. Some they think may be cause by the braini injury. Whatever the case we found out a few things that aren't gong right. She is having trouble with her breathing due to an opening in her heart. It's called a PDA. In the womb this is necessary to help give extra oxygen to the lungs. I could try and explain further but wiki will do a better job if you are interested http://en.wikipedia.org/wiki/Patent_ductus_arteriosus

Basically this needs to close now that she's born. They will try the medication indocin which can, but usually doesn't, close the valve. They try it because its less invasive. If it doesn't work, they will have to do a small incision on her chest and put in a small clamp that will close the PDA. In the mean time of trying the medication, Haddie has to be back on the CPAP tube to help her breathe, she's getting a blood transfusion, and she's being monitored like crazy.

As some of you know, I once ran a very hilly marathon in WestVirginia. I was looking for a challenge and since I hate to run, I felt running 26.2 miles of hills would give me a challenge. Dumb, I know. It started off shaky, I got my pace and went 13 miles without stopping. Then I "hit a wall". I had to walk for a while. But eventually I got a 2nd wind that carried me to mile 20. There I hit a major wall and had to walk the rest. I honestly wasn't sure if I would make it. I was out of gas. But then I got some help. A runner named Henry came along and ran with me. He wouldn't leave me and kept pushing me to jog. Then at mile 23 I had my family and friends meet me and challenge me to keep going. Somehow, I finished that race.

Haddie is in a marathon. She's gonna have good days and she's gone have tough ones. She needs you to come alongside her and pray. She needs her mom and I to be by her side. Last night we recorded a tape of us reading, singing, and praying for her to listen to when we aren't here. The finish line is no where in sight. We aren't sure yet how God is gonna have this go...but we pray and hope that we can take her home someday. Either way, she's a winner. God is good.

Tuesday Update

Hello! Hope you all had a great weekend. We spent it doing what we normally do...going to see Haddie! Hadassah has been progressing slowly but surely. She is up to 2lbs 8oz...so she hasn't grown too much just yet. She is being fed 21ml of milk that's been fortified every 3 hours. She's still breathing on her own but still has the high flow lung support in her nose.

All in all Haddie is doing good. They have some concern about her brain still. Apparently they measure her head circumference and it has grown. There is a some fluid in the brain that has to be drained at the base of the spine. As we understand it, there's a bit of a jam where it drains causing the excess fluids. This is something we knew probably would happen. They will continue to watch it and coordinate with the neurology department. If it grows to the point that it's considered a danger they will consider doing a surgery to put a shunt in that would alleviate the fluid build up. She would have it until she was 2 years old and then it may or may not need to be replaced. Of course they have to tell us that there are risks with the surgery...blah, blah, blah...everything Haddie experiences comes with a risk so we aren't too concerned. God can take care of that.

Please pray for that when you pray for Haddie. There's a chance that the fluid level could stay the same and she wouldn't need a shunt. Other than that Haddie is stable. She has a long ways to go but we just take it day by day.

Also, please pray for Haddie's new neighbor. Across the hall is Camila who was born last week at 34 weeks. I met her father who explained that she was born with only 1 layer of skin whereas 5 layers is normal. She has had a few scary moments since being born and we know her parents are having a tough time.

Below are a couple of videos we posted on Facebook earlier this week. Hope you all have a great week. God bless!  

Keep Praying

We have enjoyed the past week or so with Haddie. She has made good progress. However, in the back of our minds we can't help but think of her brain injury. Today we were reminded of that.

I was enjoying some kangaroo care with Hadassah when the nurse came in and said the teratoma surgeons were here and wanted to look at the wound on Haddie's rear. They feared that it may be getting infected which wouldn't be good. So I had to put her back and then a storm of people came in to take a look. The new doctor on call for this week took Kate and I to a conference room to discuss the EEG test they did yesterday on Haddie's brain.

So we went to a room with him, an assistant doctor, and the social worker. He basically told us that the EEG showed that Haddie has some brain damage. A couple spots didnt show any activity. He asked us if we knew what that could mean for the future. Well this isn't new news to us. We told him it could a multitude of tough things for her. And then he asked "so what are your thoughts on this?"

It's tough sometimes to profess your faith to a doctor or group of doctors. It's their job to report the facts and the science. But I felt it was time to point out the spiritual. I told him that we are positive on this whole thing. We have 6000+ people praying for us and I know that holds some weight. We were told that she probably couldn't breathe and wouldnt make it out of the delivery room. But she did and is now breathing on her own. We will take her however we can get her. However, doctors have told us that they cannot predict how she will be in the future. So we hold out hope that she will be fine. I also told them that we choose to focus on the accomplishments that she has made: breathing on her own; bilirubin levels low; eating 21ml of milk every 3 hours and keeping it down; opening her eyes...

They agreed and told us that we were good parents. That was an odd response I thought but I just don't think they get that answer too often.

We, as Christians, have hope. Our God is able to do whatever He chooses. And whatever He chooses is good. Many of you have shared your stories of hope and I believe that helped me say what I wanted to say. God hears our prayers. He is using a 2lb 6oz little girl to show his glory. So we will love her like crazy and see what the Lord does.

Keep praying. Pray for Haddie to heal. Pray that the Spirit continues to guide us.

We went back to the room and found Hadassah on her stomach with her little butt in the air! No infection but they wanted to let it air out a bit. She's a cutie.

Love you all!

The Myrtle Tree

Myrtle Tree

Things are headed in the right direction for Haddie this week. I havent posted in a while because not a lot has happened. Her bilirubin levels have gradually came down and soon she won't have to be under the bright blue lights that help her jaundice. She is being fed 12ml of milk through her feeding tube every 3-4 hours and is holding that down. All in all she is progressing pretty good. The coolest thing that has happened in the past 3 days has been the "kangaroo care". Kate and I love holding that little girl. I've posted the videos at the bottom of this blog.

The question we get from many of the nurses is "what does Hadassah mean" and "is that a family name" and my favorite, "are you all Jewish". Many of you know where the name comes from. I'll explain how we landed on it in a bit more detail.

Hadassah is the Hebrew name of Esther, the queen who saved the Jews from annihilation in what is known as the Purim. If you have never read this story, I strongly encourage you to read the book of Esther. She was a young queen who dared to face the king without invitation and accuse his right hand man Haman of plotting against her people. She is beautiful...but she is also brave.

But it goes deeper for us. Kate and I liked the name originally but we wondered what it meant in Hebrew. We looked it up and were a bit confused. It means "myrtle tree". It seemed odd to us to name our daughter after a tree. Looking deeper though we found in Zechariah 1:8 it says "⁸ During the night I had a vision, and there before me was a man mounted on a red horse. He was standing among the myrtle trees in a ravine." It's talking about an angel here. The tree itself is very beautiful but also bitter. The Jewish writers said that was appropriate for Esther. She was beautiful to the king but bitter toward Haman. 

So basically the name means beautiful, fighter, brave, and chosen. We felt that very appropriate for our Haddie. Two other things sealed the deal. Kate and I both have great grandmas...mine with the name Myrtle and Kate's with the name Myrtie. And lastly, many myrtle trees can be found in Lebanon which is where my mother's family comes from. 

And so we chose Hadassah. And she has lived up to the name. Enjoy some pictures and videos from the past 3 days.

Bare Haddie and nurse Sharon

Kate holding Haddie 1





Kate holding Haddie 2




Travis holding Haddie

How To Help

 Been a quiet couple of days for Haddie which is good. She's stable and is doing pretty well. The jaundice levels have continued to go down and she's breathing good on her own. Soon we will be able to "kangaroo care" which Kate and I are pumped about. We will take naked little Haddie and get to hold her to our bare chest for some skin on skin bonding. This helps her stay calm and is proven to help her grow. For us, well we just want to hold her.

Many of you have asked how you can help us. First off, we want to say thank you to those of you who have been praying for us, those of you who have shared your inspiring stories with us (many people that we don't even know), those of you who have helped take care of things for us back in Belpre, and those of you who have helped us financially. We can't express how much that means to us as we continue this journey. Yet we know some of you still want to help so here's what you can do:

1. Pray for Hadassah, Kate, and I. We can't tell you how much we have felt those prayers and the miracles that are working in our daughter's life. We appreciate everything people do for us...but we know that people talking to the Lord on our behalf is the best thing you can do for us. So keep that up!

2. We love to get cards and messages. Mail is always fun to open. We plan on living at Kate's uncle Tim's house until we can take Haddie home. So send any mail to 415 Grape St Hammonton, NJ 08037.

3. Financially. We have already received help from a lot of people and we really appreciate that. We have good insurance that is going to cover a lot but there will still be a good amount for us to handle. I'm glad we started Dave Ramsey a while back so that we are prepared! However, we know that the costs will continue and the day to day travel and living away from home could be something we could use help with. Honestly, we don't really know how much this whole deal will cost us. So we will accept anything people wish to send us. There has been a fund set up for us that you can send checks or cash to if you want to. You may send your checks to any 5/3 Bank and mark it to go to the Haddie Ziegler Williams Fund. The bank where it was started has the following address- 5/3 Bank 161 E Herrick Ave. Wellington, Ohio 44090.

Once again we just want to say thanks. God has blessed us with a lot of support and encouragement during this time. I feel for the people who do not have a church home, friends, and the family that we do.God is teaching us and blessing us. God is good.

Hope you all have a great weekend! God bless!

Back to New Jersey

Been awhile since I've updated and I realize several of you don't look at our quick Facebook updates. So here's what's been going on. Haddie has been rolling along. 2 nights ago she had to have an exchange transfusion. She has Jaundice which is not a good thing. Basically the bilirubin in her bloodstream attacks her red blood cells. They keep that blue light on her to help her out. If the levels get too high it can cause brain damage...which is something Haddie definitely doesn't need. Her levels got a bit too high so they had to do the transfusion. There's a lot of risks for the transfusion but the reward outweighs the risks. It went well and so far her bilirubin levels have stayed low.

Our favorite time of the day has been going down and giving Haddie "mouth care". Kate pumps some milk and then we take it down to the NICU where Hadassah lives. We take a little Q-tip and dip it in the milk and let Haddie suck on it. She seems to like this.

Everyone asks how she is doing. Haddie is doing okay. She really has a long way to go and we don't know how everything will turn out. Today they once again explained the severity of her brain damage she suffered sometime after the fetal surgery. Level 4 on both sides of the brain they say. Might not be able to eat, breathe, or manage her heart on her own they say. It's not good they say. But they honestly have no idea how this will all play out. They don't know what complications she will have. Kate and I know she will have some. But we hope, pray, trust, and believe that we will bring her home some day. God brought us here for a reason. And if it's Kate and I's job is to raise a little girl with "complications"...well bring it on. It's a miracle that she is still alive. It's a miracle that she has proved that she can breathe on her own. She's a miracle...bottom line. And we love her no matter what.

Kate was able to be discharged this afternoon and now we are back at her aunt and uncle's in Hammonton, New Jersey. She's a bit sore and it will take a few weeks for her to get back on her feet. Our plan is to drive into Philadelphia once a day and spend a few hours with Haddie. We will also call the NICU at CHOP and they will give us updates as well. As far as timeline, we aren't sure how long she will be in there. She is premature, has a brain injury, and still has a surgery to remove what's left on the teratoma. So we know we will be doing this routine for a while. We know for sure that we will be here until her original due date which is August 8th. We just have to take it day by day and see what Haddie and the Lord decide. God is good.

We appreciate your continued prayers and support. Many of you have asked how you can help us. We are currently looking into that and will let you know. We appreciate all of the ways you all have reached out to us. Your prayers are what we covet most.

 Here's a video of Kate standing up and taking a good look at our daughter today.

Hadassah Marie is Here!

O. My. Goodness. What a day! Kate and I woke up expectant parents...but we didnt expect the little one would come today!

We woke up at Uncle Tim's and had a good breakfast. Kate's parents were here and we enjoyed an evening with them last night. Kate was feeling some pains in her hips and lower belly. I just figured it was due to yesterdays movements and coming back to New Jersey. But the pains kept coming...and started to have a bit of a pattern. They just werent normal contractions. But we gave CHOP a call anyways and they told us to come in and get checked out.

We came in and Kate was definitely in more pain. They put the contraction machine on her but at first it didnt register any contractions. Kate would have one though and the baby's heart rate would drop from 150 to 80 all of a sudden...so we knew it was something. Dr. Kambin came in and said that what we were having sounded like contractions but just not the normal kind. She measure and Kate was 1cm dilated. She told us that she was pretty sure that Kate was in the early stages of labor which wasn't good and she would check again in an hour. It's not good for a number of reasons. 1. Kate has fetal surgery and contractions on her healing body was not a good thing at all. 2. Frogger is only 27 weeks and has had some major issues in the past 2 weeks. She came back in a bit later and measured again...2cm. It was go time. They got Kate ready and told me to stand by. They sent in the baby doctor and she asked us the hard questions about saving the baby if things didnt work out. She seemed very convinced that the baby wouldnt be able to breathe on her own. We told them our wishes. They gave me the gown and hot and told me they would come and get me. They took Kate out and I waited for what seemed to be an eternity. Eventually they took me in and had me sit by Kate and hold her hand. We were both very scared. Haddie wasn't supposed to be coming yet. Not for another 5 weeks. But she was coming whether we wanted her to or not. So we just prayed.
After about 15 minutes they said "get ready dad, okay...now". I stood up and saw this very little girl being taken out of the delivery room. Beautiful...little slimy...but beautiful.

We didnt know how she was doing. They came and told us she was trying to breathe on her own! And then they came back and said she was breathing on her own! God is good! Then they came and got me and took me back. She was so tiny. Yet so wonderful. I took this video. She has a tube in her nose just to help her out some and an eye covering to keep the light out of her eyes which she is too young to open yet. I said her name...and she reached up to grab my finger. My heart stopped....check it out.

This is a pic of how tiny she is.

She was born at 4:11pm and weighed 2lbs 7oz. They took her to a room but not before Kate got to look up at her little hand.

She is currently doing good. And so is Kate. She has a long road to go. But she's here. She's alive. She's breathing. And that's more than anyone expected. God is so amazing. Please keep asking Him to help her grow, stay stable, and that Kate can recover. Thanks!

Bad News

Today has not turned out the way that we wanted it to. Yesterday Kate had an MRI to check to see if Frogger had any bleeding on the brain. This morning they revealed to us that it was not good. Both ventricles in the brain had significant bleeding and there looks to be serious brain damage in most parts of the brain and possibly in the brainstem too.

They aren't really sure what caused it. The baby was stable in surgery; the baby was stable during Kate's heart palpitation...their best guess is that its an adjustment issue. Frogger had a giant tumor that she was used to supplying blood to. It was removed and trying to figure out how to respond put a strain on her. And that may have cause the bleeding.

There's nothing they can do to fix this. They have told us what our options are. We can:

1. Have the baby early. There is barely any chance that she would be able to breathe on her own. So we could hold her and let her go. Or hook her to a machine and try and keep her alive.

2. Wait a few more weeks to have the baby. By waiting, the baby might be able to breathe, eat, and manage her heart. The chances are slim there but they are better than having the baby early. Even if she could do all those things though, they have no idea what the brain damage has or hasn't caused. It seems very significant and likely that she won't have much function...but they won't know until then.

I can't describe to you how tough this day has been. Kate and I have currently decided to go with option 2. We want to give her a chance to do it on her own. If she can't...then we will let her go. If she can, we will deal with any brain challenges that come our way. We want her to be able to function without tubes and machines.

We are kinda numb right now. It's very tough to pray for something so hard for this long and make it this far...to have this result. But...God is still good. And He can still perform a miracle if He wants. And if He doesn't...He obviously has a plan.

And if you haven't noticed yet from my writing...we are having a girl. We accidentally found out through an MRI report we read back when we were at OSU. We kept it secret from everyone until today. Her name is Hadassah Marie. Hadassah, if you remember, is the young queen who stands up to a king who is about to destroy the Jews. You might know her better by her other name, Esther. Our Haddie has most certainly been courageous.

We ask for your prayers. We know this is not looking good for us. We know God can do amazing things if He so wants to. Hadassah is in a win/win situation. It's amazing to me how much you can love someone you've only seen tiny pictures of. She's perfect. She's beautiful. And all we want to do is meet her and take her home.

They most likely will let us go back to New Jersey for the next 5 weeks and we will see what happens. God bless and we love you all.

Monday Update

It's been a rough couple of days. Kate and I were getting adjusted to hospital life and awaiting the ultrasound today. Friday night the flu found me. I got the chills and got sick at 1am. I obvioulsy didnt want to give that to Kate and neither did the nurses. In fact they kicked me out! I didnt want to go to the ER so I headed back to Tim and Melody's. It has been a major blessing to have them the past 3 days as they have gone to the hospital and stayed with Kate. I am feeling better and hope to make it back tomorrow if I wake up 100%.

Today Kate had an in depth ultrasound which revealed some good news. Her fluid level is up to 6.1. The heart is also looking very good. The not so good news is that the MCA level is high. They measure the MCA during the ultrasound...it is an artery in the brain and by measuring the blood flow they can detect any strain on Frogger. It has always measured a bit high but today it was higher which is of conern. It could mean that there might be bleeding on the brain. They aren't really sure though. So tomorrow they will do an MRI to check everything out. This could be nothing. It could be very serious.

Once again we ask for your prayers. We ask knowing that the prayers haven't stopped. We are nervous about this but know that God is in control. Love you all. Thanls for your prayers and support!

A Few More Days...

Hello everyone!

Not much has changed in two days. We had an echocardiogram yesterday that showed that the baby's heart is good and is stable. Then this morning we had an ultrasound to check the fluid level. We went from 5 to 5.2. The good news is that it didnt go down much. The bad news is that it needs to be at 10 or so before they would let us go. So we are probably going to be at CHOP for another 3-5 days or so. Good food, great service...so we won't complain. God is good.

We spend our time watching tv, ordering room services meals (which are fantastic!), playing games, getting Kate up to go to the bathroom, doing crosswords and word searches, playing on the Ipad, and ordering more room service meals. So we are occupied for the most part. We have had a few visitors which we enjoy seeing from time to time. Kate's aunt and uncle came to see us last night and then today we were visited by the minister, elder and his wife from the Pittman Rd Church of Christ.

Many of you have asked how you can help us. We aren't really sure how to answer that. We are doing pretty good for the most part. We have things to do and watch; there are a few things people have in the works to support us financially and we really appreciate that; people back in Belpre have been mowing my grass and water the plants and whatnot; we have a place to stay once we get out of CHOP. So the Lord has met most of if not all of our needs.  We covet your prayers and we know that they haven't stopped. We are very humbled by the many ways you all have reached out. Kate wants to say thanks for all of the cards, balloons, and cookies she got for her birthday.

God has blessed us. Dr. Flake, by my request, gave me 4 pictures of the surgery on the teratoma. It was huge! The smoothness of that surgery goes to show the power of prayer. And my baby has very cute legs from what I could see!

They said they won't do another ultrasound until Monday so I may not update until then. Hope you have a marvelous weekend!

Fluid Up-Date

 Good news! Just had the ultrasound and the fluid level is up. Our prayers for pee are being answered! Kate was at a level 2 yesterday morning and today she is up to 5. Baby is still looking healthy and doing well.

We aren't packing our bags just yet...they are going to be doing ultrasounds to keep checking for at least the next two days. Kate's enjoying her birthday. We are about to dive into some birthday ice cream cake!

Thanks again for your prayers and love. We miss you guys. Hope all is well back in Belpre!