Sunday, May 30, 2010

Confessions of a Heart Mom

Hi. My name is Tracy, and I'm a heart mom. I was thrown into the world of Congenital Heart Defects (CHD) in late October 2009, when an ultrasound revealed that there was a problem with our 10th child's heart. One of the most shocking things that I have learned is that CHDs are the #1 birth defect, affecting approximately 1 in every 100 babies. CHDs also kill more children than any other birth defect or cancer. I have been having babies for 20 years and I never knew that ~ until I had a baby with a CHD.

Some babies have CHDs that are "easy" to live with and some have CHDs that are incompatible with life, and some are somewhere inbetween, but they all change your life as a parent and as a family. Our son has an incompatible with life diagnosis. Only by the grace of God and the hands of skillful surgeons willing to take a risk is he alive today.

One of the many ways that a CHD changes things is in the hopes and dreams you have for your child. Now, instead of dreaming of the day when he grows up and marries, I think of tomorrow and pray he's well enough to stay home. My prayer is for him to survive and have a good life, and although I still certainly hope for a long life for him, I know the reality may be much different. Many babies born with CHDs do not live to see their first birthday. And that knowledge changes things. I cherish each day with him in a way I never did with the other children. Not because I love him any more, but because the reality that his life will be short is so very *real*.

Before, our lives were filled with the rhythms of home ~ cooking, cleaning, school, reading stories, caring for, they are filled with Dr appointments, hospital stays and charting and dosing out medicines every day.

Before, we raised our children, bandaging their owies and nursing their illnesses knowing they would once again be whole. Now we have entered the world of Palliative care, knowing that no matter what is done, this son will never be well, he will never be whole. There is no making this better.

And yet, I am thankful. I am thankful for the wonderful people who we have met on this journey: the ultrasound tech who did the majority of Jethro's ultrasounds, and likely saved his life, the outstanding, caring cardiologists who look after our son and his heart, the wonderful nurses who care for him and remember him from one hospital trip to the next, and the supportive, knowledgeable, passionate folks who make up the CHD family. I am thankful for my son, a warrior in a battle that is likely not winnable. I am thankful for the privilege of being his Mama and walking this path with him. To see how God has used this one, small life to touch so many and bring them together in a common cause. But mostly, I am thankful to my Heavenly Father, for loving us enough to walk us through this valley. For drawing us close to Him when we are afraid and hurting, and bringing us peace and comfort in the midst of it all.

"Even though I walk through the Valley of the Shadow of Death, I will fear no evil, for You are with me." Psalm 23:4

Jethro Storms Dole
February 2010
Born with Ebstein's Abnormality of the Tricuspid Valve and Pulmonary Atresia

Saturday, May 29, 2010

Home again, home again, jiggety jig...

We got to come home today! Only a week later than what we had hoped for...but, on the plus side, it's only a week later than what we had hoped for. ;-)

Jethro is doing well, although the little stinker threw up his medicine that helps to regulate his heart rhythm. So, after a couple of phone calls, we were somewhat back into the routine and rhythm of home life. We'll go back in Monday to get his INR checked and pick up some of his meds that weren't ready when we were leaving, and begin again the rounds of Dr. appts...a little later in the week.

Friday, May 28, 2010

Still in the Hospital ~

Ugh. As I was typing the title to this post, my computer let me know that I have used it before. :-P Oh well. We were really hoping to be discharged today. Now we're really hoping to be discharged tomorrow. :-/ I have a sneaking suspicion that if Dr. Jensen had been on today, we would be on our way home, but one of the other cardiologists was on today, so here we sit. Please do not misunderstand. They are all wonderful Dr.s and we are so appreciative of them and the care they give Jethro. However we have worked with one or two more than the rest, and so I believe they give a little more leeway when decision making, just because they know us a little better.

However, I am trusting that it's not this Dr or that Dr who is guiding this whole process, but God. And we are where we need to be. Whether it's so that when we do go home we know that Jethro is stable, or because he's going to have some more problems...I don't know, but I do know that when home is the best place for him to be, then we will be there.

So, why are we still here? Jethro was stable throughout yesterday and last night. His heart rhythm looks good for him. But, his INR (coumadin) level was on the high side and so, Dr. G felt more comfortable with us staying an extra day and having that level re-checked in the morning. The whole INR thing is a delicate dance, and definately not an exact science. We have to adjust his dosing pretty much every time he gets his levels checked, which varies from once to twice a week.

We are also working on feeding issues. When you're 3 months old, and have never taken much, let alone the majority of your nutrition by mouth...this becomes something you have to learn. He does not have an oral aversion, which is a huge blessing, but he's not too sure about stuff coming out of a nipple and going down his throat. However, they did a swallow study this morning (very interesting to watch!), and he swallows well. So, we are just going to go very slowly with him. We are going to start with a bottle-less nipple and just use a syringe to add liquid to it. As he gets used to that and takes more milk that way, we will move him toward a bottle. Please pray that this process goes well.

So, that is where we are at the moment, and what we are doing. :-)

Track season is over. Levi ran the 110 and 300 meter hurdles at State. He did not make it out of the preliminaries for the 110, although he did take 4th in his heat. He took 7th overall in the 300 hurdles, just missing getting a medal by 1 place. He was disappointed, but his Dad and I are very proud of him. Lakeside does not have a track for these kids to practice on, and they only have 2 hurdles that they set up on the football field, when you then consider that Levi is built like a football player and not a hurdler...well, he did great!

Wednesday, May 26, 2010

Living on the Fly

I am not, by nature a very scheduled type of person. However, this is getting ridiculous! Monday evening, we moved back over to the step-down unit. We were there just over 24 hours, and now we are back in the PICU! Last night, about 6:30 or so, Jethro's heart started up it's hinky rhythms again. Not as bad rate wise, as it was Friday night, but not good.

Yesterday he was also apparently boycotting his cardiac meds, because he threw them up in the morning, and almost immediately after getting his evening dose of Amiodarone, he threw that up. So, Dr. Jensen decided that he needed to be in the PICU and receive at least a dose of meds via IV ~ which they don't do in the step-down.

So, I have absolutely no idea when we are going to get to head for home...not even sure where we'll be in the hospital come night shift time. :-P Jethro did have a good night, and he's been fine today, but they are going to shoot for some sort of stability before they discharge him. On the plus side, Dr. Jensen & Co., know that we are competent and capable, so that makes them a little more lenient in when we can go.

We are definitely learning to live moment by moment with this boy.

Monday, May 24, 2010

Back in the Step-Down

Well, Jethro and I are starting to feel like a couple of bouncing balls. :-) We are now back in the step-down unit. I missed the Dr. today, but it looks as though we will be here at least a couple more days. I am hoping that when Dr. Jensen has better news for us than that when we see him tomorrow, but we'll just have to wait and see.

Jethro is feeling better, although today he is feeling a little bit punky again. However, he's been cooing and talking and engaging, which means he is feeling more himself.

The pacing went well yesterday, but totally wore him out, and so he spent pretty much all day sleeping, but happy and talkative when he was awake.

Saturday, May 22, 2010

Please pray

Dr. Anderson (one of the cardiologists) was in this morning, and Jethro is in sustained atrial flutter. So, they were going to give him a couple of extra doses of his rhythm med and see if it will correct itself. If, in the morning, he is still in AF, then they will sedate him and run a probe down through his nose and try to pace his heart out of the flutter.

There is a 75% chance that it will work. :-) Just what a Mama wants to hear. Shocking his heart would do it, but he still has that clot and he's on Coumadin, so that is just not a real option at this point. The risk of dislodging the clot is too great.

Our #1 prayer request would be that the meds would work and he wouldn't need to be paced.
#2 would be that if he does need to be paced, that it would work, and that he would be safe under's always a little scary to turn your little over to a Dr to be sedated, and even more so when they have a heart condition.

Thank you.

Still in the Hospital...

and you know you've been there too long when the cafeteria staff starts asking if you're an employee.

I talked with Dr. Jensen yesterday. He was very pleased with how Jethro has handled this surgery and the stress it entailed. We were going home today...unless I felt like we needed another day or so. Shortly after talking with Dr. Jensen, Jethro's heart went into some very funky rhythms and he kept setting off alarms. His heart rate spiked, and at times was well over 200. So, we are now in the PICU.

They are not doing "ICU things", but they can keep a closer eye on him in the PICU than on the intermediate floor, and our wonderful Dr.s are just careful with Jethro...which makes his Mama happy. :-) One of the other cardiologists is on call starting today, and his "specialty" if you will, is heart rhythms, so it will be interesting to get his perspective on what is going on. Dr. Jensen thought it still likely that we will get to go home tomorrow. Please pray toward that end.

Jethro had a good night, and was sleeping when I got to his room this morning, so I am in the cafeteria finishing up breakfast and updating you all here.

On another note, Levi made it to the State Track Meet in the 110 and 300m hurdles! Yesterday were the prelims and he took 4th in his heat of the 110, although that was not good enough to get him to the finals; and he took 4th in his heat of the 300 ~ which WAS good enough to get him to the finals! I believe that 1st and 2nd place automatically advance, and then they go by times. If you are reading this early enough in the day, and have high speed internet, you can go to and they are live-streaming the track meet. I am so thankful that even though Jethro and I are in Spokane, in the hospital, I am able to watch Levi compete and cheer him on...even though he can't hear me. :-) Technology can be such a wonderful blessing! The 300 hurdles will run about noonish Mountain time.

Wednesday, May 19, 2010

Post Op Report

Jethro had surgery to place an open G-tube this morning. Dr. Chan said that it would take about an hour, but I think it was closer to 30 to 45 minutes. When we were taken back to recovery, he had already been extubated.

Dr. Jensen wanted him to go to PICU from recovery just because he is a fragile baby, and they wanted to watch what his heart and his O2 sats were going to do. We like Dr. J ~ he's got Jethro's six. :-) He did so well, that we were back in the intermediate unit by 2 this afternoon.

To just about everyone's surprise, they are already feeding him ~ although we're going slowly. He needs to be at about 31mL an hour before we can go home. And I need to be comfortable with wound care ~ which I will be, and his INR needs to be somewhat stable.

His nurse just came in and increased his feeds again. So, hopefully by the weekend we will be on our way home. Home Care Solutions is coming in the morning to instruct me on the wound care, then we just have to get his INR levels where they need to be!

We are so thankful for the wonderful Doctors we have been blessed with! Everyone here at the hospital is quick to tell me how great Jethro looks. While my preference would obviously be to not have to spend time in the hospital, I am thankful that it is a "home-ish" place to be. Everyone remembers you, and they all dote on the baby. God has blessed us all around ~ Jethro with life, excellent Dr.s and nurses, a wonderful hospital, and a super support network ~ both our family and friends who are close and involved in our daily lives, and the heart community that He has provided via the internet. We are truly thankful.

Thursday, May 13, 2010

Surgery Next Week

Yesterday, Jethro had an appointment with Dr. Jensen. They did a follow-up echo and things are looking pretty good. His body is slowly working on absorbing the clot in his heart, and the shunt is functioning as it should. Jethro is now 11 pounds (by my scale, their office scale doesn't have him at quite that much), but they would really like to see him gain weight better than he is.

So, it's time to "pull the trigger" as Dr. Jensen refers to it, and move ahead with a G-tube. So, instead of having a feeding tube running through his nose and into his stomach, there will be direct access to his stomach, through his tummy. We have heard good and bad stories about G-tubes, but more moms have told me what a blessing the g-tube was for their child. I am trusting that it will be for us as well. Dr. J also told me that it thought it would simply things following Jethro's next heart surgery, because we won't have to deal with feeding issues to be able to come home. He'll have his g-tube, I'll already be comfortable using it, so feeding will be a non-issue.

We'll go in on Monday afternoon. I think the cardiologists have some stuff they're going to do...tests and such, the feeding team with be working with us (we are NOT going to stop working towards oral feeds!), and then Wednesday morning he'll have surgery to place the G-tube. While not overly anxious, I am not looking forward to sending Jethro into another surgery. It's just not an easy thing for a Mama to do, even when you know that it will ultimately help them ~ or be their only's still difficult. But, I know that I can trust God to watch over him while I cannot, and I have no doubt that God will be right there in the OR, guiding the Dr.'s hands.

Please pray for:
  • wisdom for the feeding team. Jethro has a body-wide rash. The GP we see thought that it was just eczema, but it doesn't look like it to me. The speech therapist that we saw yesterday was concerned about it as well. We think it's likely an allergic rash. So, we need wisdom to figure out what exactly is going on.
  • guidance for the surgeon's hands. His name is Dr. Chan, and we would appreciate prayers for steady hands on Wednesday morning.
  • Mike and the other children. I'm not sure how things are going to work at home quite yet. Ezra is sticks pretty close to me ever since Jethro was discharged last month, so I expect this will be difficult for him.
  • for plans for the kids and where they will be/who will take care of them to come together.
  • that I would figure out the new feeding stuff quickly, and that Jethro will heal well and there would be no complications ~ so we can get home that much sooner.
Also, we have gotten a settlement from the insurance company! Thank you, Lord!! We are now beginning the process of figuring out what we want to do for a house ~ stick frame, post and beam, modular, etc., and looking at house plans. We would appreciate prayers for wisdom in this process.

I'm off to fry some chicken and boil potatoes for salad. We leave for Kamiah tomorrow. Levi and Garth are both competing at the regional track meet, so we will be going down to cheer them on.