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.