A Post From Dustin

This was my sweet baby girl this morning.

This was her this afternoon.

This is her this evening.

As you can see she has made a great deal of progress in what has really been twelve hours.  She is now off the ventilator, has had two of her large IV tubes removed, is on about half the medications and is eating better now than she did before she had surgery.  She eats one ounce every three hours.

This morning her face was extremely swollen and she was still heavily sedated.  You can't help but feel overwhelmed by the road ahead, but as the day progressed tubes, wires, medication pumps and IVs began to disappear, and my little girl started looking more like she did just a couple of days ago.  However, she is better than she was a couple of days ago.  She can eat on her own and she breathes some much better despite have had open heart surgery just a day ago.

The doctors are very happy with her recovery and how her heart is functioning.  The next few days we will learn more about just how successful the surgery was.  There could be leakage around the patches and other parts that were cut open to perform the surgery.  An echo cardiogram will be done in the next couple of days to make sure that there is not any or at least very little leakage.  Also she is on a temporary pacemaker at the moment and will be until the swelling in the heart goes down... hopefully. 

In a surgery like Harper's there is a chance that the conduction path can be damaged, which is part of the system that tells your heart how to beat in the proper sequence. If the conduction path has been damaged, Harper will need to have a permanent pacemaker for the rest of her life.  Of course this is something that we don't want for Harper, but if this is something we have to deal with it is much better than having a one chamber heart or having to go through multiple surgeries to get less than what we have now.  If a pacemaker is what the good Lord has given us than we will be happy with that because it could be so much worse.  The pacemaker will be inside Harper and will have to be changed out very five years or so.  She will be able to live a normal life, except she will not be able play full contact sports.  So I guess my dreams of my daughter being the first girl to make the All-State team in football have been crushed.  Oh well, you can't have everything.

We are definitely on the upward swing and I can see the light at the end of the tunnel.   After the surgery yesterday the surgeon pulled Amy and I aside along with our parents to tell us how the surgery went.  As he was telling us of all the difficulties they had and just how defected Harper's heart was it felt like a tidal wave hit me.  I understood everything he said but it was just overwhelming.  I found my self struggling to keep my self together.  It was strange, he assured us that the surgery was successful but I could help from feeling helpless.  I guess the months of waiting, preparing, anticipating, and dreading this very moment were all falling down around my weary soul.  As we came back into the waiting room which was filled with our family and friends, I tried to explain to everyone what the doctor just told us.  I got a few words out and broke down.  Thankfully Eddie was there to help explain to everyone what was said.  Why I'm telling all this I'm not sure, but maybe to say that you don't know how much stress you are under until your are not under anymore and that I think I understand Rom 8:26 a little bit better.

Thank you all for all that you done for us.  I want to thank everyone who sat with us during Harper's surgery and all those who have stopped by to visit.  Our prayers have been and still are being answered because our Father is merciful and full of compassion.  Praise Him!

Hospital Day 2

Things have calmed down quite a bit and Harper is doing really well. She was pretty heavily sedated all day yesterday and last night, but they stopped those drugs this morning to allow her to wake up a little and get off the ventilator. They came in about 30 minutes ago and took out the breathing tube, so Harper is breathing all on her own now. She is on a high-flow nasal cannula for a little extra help and they'll move her down to a low-flow when she's ready.

Harper is currently in heart block, meaning the natural rhythm of her heart hasn't returned. This is totally normal and expected right after surgery, but we just hope it comes back. It is a possibility that part of the electrical part of her heart was damaged during surgery...something that just couldn't be helped. They will give her some time (up to a week from what I understand) for her heart to start firing correctly, but if it doesn't come back, she will have a permanent pace-maker put in place. This won't effect too much, but it will be something that has to be maintained for the rest of her life. I will be happy to maintain a pace-maker if that is the only lasting consequence from all of this.

Side note: I try to understand/explain things the best I can, but I'm only a stressed out momma with no medical training, so most of what I say is probably flawed.

The next few days will be all about getting rid of things. The ventilator, IV lines, chest tubes, medications, pace-maker, catheter, etc... The more Harper's body can do on its own, the better.

Dustin and I are doing well. I can't exactly explain the relief it is to know this is behind us. We have just been so very, very blessed.

Pictures from yesterday were pretty graphic, but here's one today that's a little easier to handle:

Thank you for being part of the healing of Harper's heart through your constant prayers and encouragement to us. We don't even have a way to express just how thankful we are.

Praise God!

We are anxiously awaiting a nurse to come get us to take us to see Harper, but in the meantime...I'll give you the short story.

Harper's heart was much more deformed than we originally thought and in such a way that it didn't show up on the echo cardiograms. She was basically missing the middle part of her heart. But there was just enough tissue to patch the hole that we knew about and another hole that we didn't know was there. Dr. Harrell says of the thousands of VSD repairs that he's done in his career, this was one of the most difficult.

It didn't change anything...she still got exactly the surgery that she needed, but had we known the full extent of what was wrong, the outlook might not have been so great. I'm just glad I got this information on the other side of surgery after everything was fine.

The next few days are critical for Harper, but right now, she is stable and doing well. They just moved her to the Pediatric ICU and we'll be able to go see her very soon. I know it will be so very hard to see her like she is, but I can't wait to lay my eyes on that sweet, sweet baby. I've missed her so very much today.

I am so thankful. So relieved. So exhausted. So ready to sit with my baby and tell her how much we love her.

I expect to be a little more out-of-touch the next few days, but I promise to try to write a little something.

We praise God. His love and mercy is unending.

I've been dreading this day since late November when we found out we'd be here someday. This morning was really rough for me, but now that surgery is underway, I'm just looking forward to helping Harper recover and getting this all behind us. We've been in constant prayer this morning...praying for Harper's comfort and strength, praying for the doctors and nurses who are taking care of her, praying for no complications, and praying that the repair goes well so that we won't find ourselves back in this situation again. May God receive the glory for the care He has taken of Harper and our family.



We got to Lubbock yesterday evening and just spent the night staring at Harper. It was nice to have this time with no mouths to feed, no laundry to do, no more preparations to make, just time to sit with no distractions and enjoy our baby girl.

We've been here since 6:00 this morning and they took Harper back at 7:30. We just got a phone call at 9:00 saying that they've opened Harper up and that portion of the surgery went well. We won't hear anything for several hours, so we just continue to wait. 18 people are here who love us and Harper dearly and it is a huge encouragement and help. 

We thank you so much for the texts, comments, and emails letting us know you are thinking of us and praying for Harper today. I'll try to update as we hear more.

Change Of Plans

I just have a minute (actually, I really don't even have that), but I wanted to let you know that Harper's surgery has been changed to Monday morning. We have to be there at 6:00 a.m. and the surgery should start between 7:00 and 7:30. I've been busy packing for us all and getting things in order to be gone for the next two weeks. Although, I'm so hopelessly in love with this baby girl that I can hardly put her down to get anything done.

We are heading to Lubbock tomorrow and should have a little down-time once we get there, so I hope to write more then.

The closer it gets, the harder it is to hold back tears every time I think about it. I'm just trying to focus on the fact that it will all be over very soon and Harper will feel SO much better.

Our constant prayer is for God's protection of our sweet baby Harper.

Thank you for your prayers for our family.

F.A.Q.

Harper's appointment went really well today. She gained 3 ounces and now weighs 8 pounds, 4 ounces. After an EKG and Echo Cardiogram, Dr. Robinson determined that there have been no changes to her heart. We are scheduled for surgery next Tuesday. Dr. Robinson thinks she looks great and is very optimistic that the surgery will go well. We meet with Dr. Harrell, the surgeon, on Thursday.



When I get a chance to talk to people, most have a lot of questions about Harper and our life right now taking care of her. I thought I would answer some of the most frequent questions here in case any of you are wondering as well.

*What caused Harper's heart defect?
     -We don't know. Congenital heart defects are the most common type of major birth defect and in most cases, it is impossible to find out just exactly what went wrong.

* I've noticed that Harper doesn't have her tube in some pictures, do you take it out for every feeding?
     - No...we don't normally take the tube out between feedings. Occasionally, Harper will pull the tube out or we will remove it to give her a little break from it and switch it to the other side. I try to always take pictures when she doesn't have her tube in because I think she's extra beautiful without that thing.


* What if the tube comes out?
     -We put it back in. This was the one thing that scared me the most when we first left the hospital, but it really is no big deal now. It has come out more times than I can count and it no longer gives me any anxiety when having to replace it.

* How does Harper get her food?
     -I pump the milk, mix it with a high calorie formula called Human Milk Fortifier, we put the milk into a feeding bag that is attached to a pump, we set the rate we want the milk to go in at and the amount of milk we want her to receive, hook the pump tubing up to Harper's NG tube, and then hit the start button. We do this every three hours around the clock.

* When is Harper's surgery?
     - Harper will be having surgery the morning of Tuesday, June 14th.

* How long will the surgery last?
     -The surgery is expected to last between 4-6 hours. Harper will be on the heart/lung machine for two of those hours, which will be the riskiest and most critical part of the surgery.

* What are the risks of surgery?
     -Possible complications range from infection, brain damage, damage to any of her organs, death, and everything in between there. But...Dr. Robinson is very confident that everything will go well and says that 95% of kids do great with this surgery.

* How long will Harper be in the hospital?
     -If everything goes as expected, we should be in the hospital between 7-10 days.

* Will you be able to stay at the Ronald McDonald House again?
     -Yes, we hope so. We are currently on the waiting list for a room starting next Monday. However, Harper will have her own room at the hospital this time, so at least one of us will be there with her at all times.

Side note: if you feel so inclined, drop some change in the Ronald McDonald House box next time you drive through McDonalds. It really is SUCH a great work that they do.



* Will Harper have to have more surgeries later on in life?
     -If everything goes well, this should be the only surgery she will ever have to have. Her heart will be "fixed" and she will be able to lead a completely normal and active life.

*Will y'all be having more babies?
     -I'm not sure when a family's reproduction decisions became open for discussion, but surprisingly enough, we have been asked this A LOT. So for the sake of full disclosure and at the risk of embarrassing our families...I'll answer it.

Quite simply...we don't know. Obviously we are not planning on adding to our family any time in the forseeable (or even unforseeable) future. Immediately after giving birth and right in the middle of major health issues isn't exactly the time to be deciding on things of this nature. Dustin and I both LOVE babies...especially ours. I would love to have a big family, but my last two pregnancies leave me hesitant to say the least (terrified is more like it). My doctors feel, with much confidence, that the problems with my two pregnancies were not at all related and they would not discourage us from future pregnancies. (I'm just wondering if they look at me as job security...ha)

We are extremely thankful for the three children we have been blessed with and for now, I feel like our family is just perfect. We'll see what the (far off) future holds for us.


* How do you do it?
     -I get this question a lot and I'm not exactly sure how to answer it. You just do what you have to do when it comes to your kids and really...it's no big deal. Maybe Harper requires a little extra care than most babies, but it's certainly not a burden. We have a lot of people that love us and have been a tremendous help to us. My kids watch more t.v. than I would like, they eat more processed foods than I would like, I get less sleep than I would like, my house is not as clean as I would like, I drink more coke than I should, I can't remember the last real conversation I had with Dustin, Harper spends more time in her swing than I would like, Eli and Landon get less attention that I would like to give them. But we're all home together and I'm extremely grateful for that!

*What can we do to help?
     -We appreciate so much all of the offers to help. Members of the church here have been a tremendous help by going with me to doctor appointments, keeping Eli and Landon, cooking us outstanding meals every week, and helping us financially. We are so truly blessed to be a part of this congregation. Our physical needs have been very well met. So, we just ask that you continue to pray for Harper over the next few weeks. We won't make it through this time without the love, mercy, strength, and peace that only God can provide.


What are some other questions you have?

Two Weeks

We went for our weekly checkup with Dr. Robinson yesterday. Just like every other week, Harper has gotten worse. Her oxygen saturation levels were spending more time in the 80's than the 90's. We have to lower the limits on her monitor almost every night just so we can get a little sleep. She breathes so hard at times that her head bobs up and down with each breath. You can even hear her breathing from across the room at times. She has begun to spit up a little more indicating that she isn't tolerating her feedings as well. She is more pale and grayish looking.

Not all the time though. She has times when she does really well and times that she doesn't do so hot. Dr. Robinson said that pretty soon, she won't bounce back...she'll just constantly struggle.

The good news is that she's done great so far. She is eight weeks old and still going strong (well...kind of). She had great weight gain this week and now weighs 8 pounds, 1 ounce. We didn't think we'd make it to the eight pound mark, but here we are. The other great news is that once Harper makes it to ten weeks of age, the risk of surgery in and of itself decreases drastically. At that point in time, there isn't an advantage to waiting, so Dr. Robinson went ahead and put us on the schedule for two weeks from now. We meet with the surgeon next Thursday and he'll give us an exact date. Considering the fact that he does surgeries on Tuesdays, I expect it to be Tuesday, June 14th.

I thought I would be a wreck when it came time for this, but more than anything, I feel a sense of relief. I'm relieved that sweet Harper is finally going to get her heart fixed. I'm relieved that all of the open-ended waiting is over and we have a plan. And I'm relieved that we are going into surgery under the best possible circumstances. God is so, so good.

Dr. Robinson says that if everything goes well, we can expect 7-10 days in the hospital. Harper has a great advantage because she is being fed through an NG tube. Most other "heart babies" are too weak to eat when it gets close to surgery, so they go into the situation weak and malnourished. Harper is getting all the calories she needs (and then some) and she doesn't even have to work for it.

Two weeks certainly isn't long and I'm thankful that we don't have to anticipate her surgery for months like so many do.



Two weeks to worry.
Two weeks to freak out.

Two weeks to pray.

Two more weeks of monitors going off all night.
Two more weeks of tube feeding.

Two weeks to pray.

Two weeks to prepare.
Two weeks to hold my baby as much as possible before I have to go days without.
Two weeks until Harper gets a lifelong scar.

Two weeks to pray.

Two weeks to explain to Eli and Landon why we're going away again.
Two weeks to pack everyone in our family enough to be away from home for 10 days (at least).

Two weeks to pray.

Two weeks of anxiety.
Two weeks of fear.

Two weeks to pray.

I can get a lot of praying in over the course of two weeks. Prayers of thanksgiving. Prayers of praise and adoration. Prayers for strength and comfort. Prayers for Harper. Prayers for her doctors. Prayers in times of weakness and doubt. Prayers for faith and peace.

 Prayer works and it's the best thing we can do for Harper right now.

Thank you for your prayers. God hears them and He has answered them in the way He has watched over us.