CHD Awareness Post #2

I had planned to post a bit more during CHD Awareness week, but our internet has been iffy, so posting hasn't been possible. :-P Today I'm going to repost something I wrote when Jethro was just months old.

The thing about heart defects is they change everything. Everything that as parents we take for granted and don't really think much about...now you think about them...you wonder if they will be. When you have a child with a heart defect, it turns your world upside down...and it takes a while to get your bearings back and feel like you are on an even keel once again. Here are some thoughts I had as I was beginning this journey with Jethro.

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 babies...now, 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

CHD Awareness Week Begins

Today through the 14th is CHD Awareness week. If you are pregnant, I would suggest a couple of things. Sometime around 20 weeks or after, get a good, diagnostic ultrasound done. Ask specific questions about the heart. Don't just settle for knowing if you're having a boy or girl. Many CHDs can be caught at this point. Be aware that the perinatalogist will probably suggest further testing to see if you want to murder your baby. Whether or not you go for more testing, please let me encourage you to give your baby the gift of life. No matter how bleak things look. They held out almost no hope for Jethro ~ and we are about to celebrate his first birthday. But life, no matter how long it is has value. Yes, a CHD or something else may take your child's life. Just don't let it be at your hands. Enjoy that baby, no matter how long you are blessed with them.

The other thing I strongly encourage you to do is make sure that a pulse oximeter test is done on your newborn. This is a very simple, non-invasive test that measures your baby's oxygen levels. They should get a reading from the hand and foot. This alone will catch many undetected CHDs. Still, not all hospitals are doing them routinely ~ make sure your hospital/midwife does a pulse ox on your newborn! You are your baby's advocate, so advocate. :-)

Today's CHD fact:
Congenital Heart Defects DO NOT have a cure. Children born with a CHD undergo OPEN HEART surgery, usually multiple surgeries to "mend" the problem. But this is only pallative, never "fixed" CHD'ers have a lifetime full of medications, heart catheterizations, and numerous procedures. 1 in 100 births! Donate to CHD research and help us get one step closer to a CURE.

Picture by Jessica Goffard ~ thanks, Jess!

HOPE

"For I know the plans I have for you, declares the Lord, plans for wholeness and not for evil, to give you a future and a hope."
Jeremiah 29:11

"More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given us." Romans 5:3-5

"Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12

Hope has been my word for the year...and a half. :-) Late last fall when we found out about Jethro's heart, it was devastating. The prognosis was very grim; they didn't really expect him to make it to birth, and if he did make it that far, they said it was very likely that he would die within the first week or so. I can't even tell you how suffocating that appointment was. I was deeply panicked and grieved at the same time and I was quite honestly terrified of walking through the grief of losing another child. I knew that God is faithful, and I knew that He would carry me through whatever He had for us, but I just didn't want to go there again.

As I regained my bearings a bit and began to pray, I felt God impress me with the knowledge that He would not miraculously heal Jethro's heart. I prayed for it, but as I prayed, I just knew that this was a journey we were going to have to take. However, as I prayed, God also gave me a very sure feeling that everything was going to be okay. Now, I will admit to you, I didn't know what "okay" meant. I knew it could mean that Jethro would die, and we would once again find God faithful within that grief. I also knew it could mean that Jethro would live and we would find God faithful within that path. One thing I have learned over the last several years is that God's definitions and my definitions don't often mesh up, but God's are always right. So, although I didn't really know what okay meant, it did give me a great sense of peace because I knew that whatever God had in store for us He would be there to strenthen us and hold us steady.

Jethro was born dead, and after extensive efforts on the Drs part, God allowed him to be resuscitated. By the time I woke up from surgery, my little boy was safely ensconced in the NICU, sedated, intubated, and hooked up to many monitors. That was a Friday. Over the weekend, he held his own, and talking with the various Drs, I got the impression that although they were cautious, they felt he was doing okay. Monday arrived, and so did Dr. Jensen. We had seen him during my pregnancy, and I was anxious to get his opinion on how Jethro was doing. He sat us down and talked to us about how serious a condition Jethro was in. When I asked him if he was at all hopeful over how well Jethro had done over the weekend his answer was a simple, "No". He explained 4 different surgery options and why each one was not an ideal plan ~ also explaining that the surgeon's might refuse to do surgery because of the condition of his heart...and then he suggested that we might want to consider 'comfort care'. Which is basically making baby comfortable while they die. I was hysterical ~ not in a loud, frantic way, but I began to cry, and I could not stop. I felt like I had lost my baby. I finally had to get up and leave. Poor Dr. Jensen. He was in a lose-lose situation, not only having to deliver hard news to a Mama and Daddy, but having to deliver that news to a post-partum, post-surgery hormonal Mama.

I had lost my bearings. I felt like I had either mis-understood God, or that I was having an epic fail of faith. I called my mom, and I called a friend who had had an Ebstein's baby the year we lost Tucker. I knew she had to have had the same conversation with their cardiologists. Mike finally came to my room and we talked about 'the options'. I also got in touch with a local heart mom, and bless her, she came right down to the hospital and talked with me for hours. I asked her about how they came to the decision to go the surgery route, and many, many other things. By that evening, I had calmed down much, and Mike and I had determined what has led us through all this time ~ if there is life, there is hope. We would fight tooth and nail if need be to get Jethro the care he needed to live.

Within the next day or two we talked with the surgeon, who came to us with a surgical plan (thank you, Lord!), and the die was cast. Jethro had the first of his surgeries at 10 days.

This has been a long, hard year. We've been through so much, and yet, we can honestly say that God has been more than faithful, and we are tremendously blessed. I wanted to share this because I think sometimes we really get down on ourselves when we lose sight of God's promises. But, I believe that's just a part of the human condition. It's how we react when we are in that spot. Am I going to turn my back on God because I think that suddenly He's not faithful, or I feel like He's turned His back? Or, am I going to stay the course, trust His word, even when it doesn't 'feel' true, and believe? If I falter, am I going to continue the fall, or am I going to catch myself and lift my heart heavenward once again?

If Jethro had died, would I be able to say these things? Yes. Yes, I would. And, six years after Tucker died, I can say that I am so thankful for that experience. Please don't misunderstand, I would *love* to be raising my sweet boy ~ there is a definite hole in our home where an active little 6 year old boy should be ~ but I am thankful to have had and lost Tucker, because I believe that part of God's purpose for Tucker was to prepare me to parent Jethro. To be able to walk through all this uncertainty and upheaval in trust and faith ~ and that is a true gift from God.

So, what does hope look like at our house right now? Let me share some pictures with you from Jethro's first Christmas...a Christmas we weren't sure we would have.

Opening his first present

Who took my picture!?!? ( I got this look *every* time I snapped a shot!)

This makes me laugh every time. Christmas is apparently a very surprising holiday.

Opening (or eating) presents at Pak and Grammie's house.

I am so very thankful that I serve a sovereign, faithful God. A God of hope.

How would you feel?

tal If your child had the #1 birth defect, and then you found out that not only there was not hardly any research going on, but there is very little funding for research? That the one organization you would assume is putting money toward research is only putting .01 of every dollar toward research of Congenital Heart Defects?

Everywhere I look, there is funding for childhood cancer ~ there is much awareness. **Please understand** I am NOT belittling what children with cancer go through ~ or their parents. I know it's bad. My point is awareness. Not "competition" of things wrong with our children.

More children die from Congenital Heart Defects (CHDs) than all childhood cancers combined. And there is little research happening. There is little being done besides playing defense and palliative care ~ and I am very thankful for the excellent Drs, surgeons, nurses and therapists that care for Jethro in this way.

1 in 85 babies born have a CHD. If 1 in 85 children were getting the flu, or the chicken pox or some other illness...it would be considered an epidemic.


I'm including a video done by an amazing young woman that I have had the priviledge of meeting. Jessi just turned 21 and she has HRHS ~ the right side of her heart didn't develop like it should have. She has had several surgeries, and has a heart full of love and compassion for her fellow CHDers. Jethro is in this video. It's long, but those shown in the video are just a miniscule fraction of the number of CHDers out there.

If you ever give money to the American Heart Association, would you consider earmarking it for the Zachary Brooks CHD Endowment? 100% of all monies donated to the Endowment go toward CHD research. The AHA also has the Legacy of Life Endowment , which provides funding for CHD research (thanks, Lisa!).

Make an on-line slide show at www.OneTrueMedia.com

If it were your child ~ how would you feel?

Jethro showing off his "zipper" and his "button".

Jethro's surgeries

I found a website that gives a pretty good, easy to understand explanation of the 3 surgeries that Jethro will go through. The surgery he had at 10 days was to place the BT Shunt ~ in addition to removing part of his right atrium, patching the tricuspid valve and a couple other things. The surgery that is scheduled for the end of the month is the Glenn procedure.

You can read about them here. Jethro is scheduled to be admitted to the hospital on the 19th. On the 20th they will do a heart cath to check out vein pressure, look at the pulmonary artery to see if it needs work, and they will also check out his lungs. Then, on Thursday the 22d, he will have the Glenn procedure, which will be open heart surgery.

We would appreciate prayer for the drs and surgeons that will be working on Jethro during those procedures. Also prayers for Jethro to tolerate the heart cath and surgery well, and that he would recover well.

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 babies...now, 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

Please Pray

Jethro had a long weekend. Friday they stopped the morphine and pulled his vent tube. Yay!! However, over the weekend it became apparent that Jethro was going through withdrawals. :-( He was awake, almost the entire weekend...including at night, and he looked uncomfortable almost continually. The only time he slept was when I was holding him.

Yesterday, he had some rhythm problems with his heart. His heart rate was over 200, his blood pressure was rising, and his oxygen sats were dropping. This is not totally unexpected. They not only cut into his heart, but took some of the tissue out, so the electrical system of the heart has been disrupted. Additionally, one of the symptoms of Ebstein's is also arrhythmia problems, because the right atrium is adversely affected and it is that part of your heart that regulates your heart rhythm. So, they ended up putting him on a medication to regulate his heart rhythm. They also decided to put him on methadone, to help him with the withdrawal symptoms.

He has also been periodically spitting up some greenish stuff. The nutritionist thought it was likely bile, because the feeding tube goes directly into his small intestine, so there is nothing in his stomach to throw up. But, this morning the cardiologist didn't think he was hearing much if any gut sounds...although there was evidence that his gut was working. However, the Dr. felt that it would be a good idea to have an x-ray and ultrasound of Jethro's gut. This evening, the peds intensivist told us that they saw air on Jethro's liver. This is not normal, and has them concerned that he is developing Necrotizing Enterocolitis or NEC. For a real explanation, click on the name of the disease. They will stop feeding him Mama's milk and start him on triple antibiotics and they will keep a close eye on his gut with x-rays.

So, our prayer requests are:

• That it is NOT NEC.
• If it is NEC, that it would respond well and quickly to the antibiotics.
• For Jethro to get through his withdrawals well. It is difficult to watch a baby go through this. :-(
• For his heart rhythm problems to settle down. The meds they have him on are not a long-term solution. They have side effects that make them undesirable for long term use.
• For God's healing touch on Jethro.
• We are likely looking at 2-3 weeks before we can go home. Our other children ~ especially the younger set ~ are missing and needing us as well. My Mama's heart is heavy with this separation, but driving back and forth is just not an option right now. Please pray that God would bring things together so that we can be together as a family again soon.

Not the News We Were Hoping/Praying For

Yesterday we met with both the OB and the Cardiologist. I am now just about 4 1/2 weeks away from delivery. So, from this point on we will be going in every week.

We didn't have a lot of time at the Cardiologist's office because Mike had some mandatory training yesterday afternoon, but they did an u/s of Jethro's heart, and the Cardiologist told us that she is seeing some fluid beginning to accumulate around his heart. This was not there a month ago when we had the last u/s done. She wanted to know if the OB was keeping an eye on the rest of his growth, etc., with u/s and we told her, "no". It has been about a month and a half since our last general u/s.

The concern with the fluid starting to build around his heart, is that there is also fluid build-up in other areas of his body, so next week when we go back, we'll have 2 u/s. A general one to check up on how he's doing overall, and another heart u/s to see what is happening with his little heart.

She was encouraged that there is blood flow going through the Pulmonary Valve ~ even though it's going the wrong way. The hope is that once he's born and the lung tissue is relaxed then that lower chamber will be able to pump effectively enough for the blood to go the correct way. She also said that she is seeing lung tissue which is a good sign ~ often babies with Ebstein's because of the enlargement of the upper chamber of the heart, their lungs don't develop properly. (REALLY badly structured sentence!! Sorry!)

Ultimately what it all comes down to is that if it looks like he is beginning to not do very well, we'll have to evaluate whether or not to take on the increased risk of rupture and induce for early delivery or whether he might need to be born via c-sec.

It would also appear that the little stinker was transverse yesterday...the u/s tech couldn't say for sure because she is just used to looking at the heart, but I was pretty sure he had changed position, and it did feel like he was lying sideways. :-/

Here are our prayer requests for this week:

• Wisdom. There are so many variables. The Drs. would all like for us to be in Spokane for a week to 10 days before the delivery. The fact that we live an hour out has them all very nervous. I feel the need to be at home for the other children until Jethro is born. The little ones especially, need some level of normalcy for as long as I can provide it.
• That the fluid around Jethro's heart would disappear.
• That his overall health would be good and obvious with the u/s next week.
• For a natural delivery. My c-sec was one of the most horrific experiences in my life, and I have no desire to repeat it. If anything, having had one has made me even more scared of having one that when it was a complete unknown.
• That Jethro would be a good baby and turn head down once again.
• For God's will. This is truly the desire of our hearts ~ even knowing that it could be deep, difficult waters to get through. Please also pray that we would have the faith, grace and strength to keep our eyes on our Heavenly Father whatever His will is. Our desire is to glorify Him, no matter the path He places our feet upon.

I wanted to close this with a praise. Mike has been at his new job for a little over 2 weeks. It was beginning to get a little discouraging for him, because he hadn't had any sales. Over the weekend, he sold 3 1/2 rigs! The 1/2 is he made initial contact and then another salesman closed the deal ~ but he still makes some commission off of it. I thank God for a husband who always gets out and does his best. He is such a blessing to me. He was able to take yesterday off and be at the dr appts with me, and he reminded me that even if he doesn't say much, he has my six. :-)

The Latest

Yesterday we had appointments with the cardiologist and the OB. The cardiologist had also arranged for us to meet with one of the neonatalogists that will be caring for Jethro. We like the neonatalogist, he was very open in answering our questions, and seemed to be very upfront about what will be happening with the baby if things continue the way they are. I was asking him about Jethro being able to wear his own booties, hats, etc. And he was saying, yes, he could have his own things, and they encourage blankies from home, favorite toys (do newborns have favorite toys?), etc. He made mention of a favorite stuffed animal. I said, "A pistol?" He answered with, "Well, as long as it doesn't have live ammunition, we could probably do that." That may seem like a rather random toy to ask about, but those of you who know us, know that our little boys are almost always armed. :-) And, there is a story behind the question...

I was on the phone with Mom the other night, and Josiah ran up and put a pistol on my very pregnant belly. I said, "Oh, is this for me?" He just looked at me and said, "It's Jethro's." LOL It's one of the reasons I like to know ahead of time if we are having a boy or girl. We can give them their name, and it just helps make that baby a little more "real" to the other children before they are actually a presence in our home.

So, after meeting with the neonatalogist, we had another echo done on Jethro's heart. We met with a different cardiologist than we have been, and it was "nice" to get a little different perspective. Besides having Ebstein's, Jethro has what they are referring to as "functioning" Pulmonary Atresia. From the reading I have done, it is common for there to be problems with the pulmonary valve when Ebstein's is present. What this means for Jethro is that the Pulmonary Valve is not functioning, but it is allowing blood flow in the wrong direction. Which tells us that the lower right chamber of his heart is not pumping hard enough to push the blood through in the right direction. The Pulmonary Atresia really complicates things. That valve can be replaced, but it is a short term fix at best. There apparently really is no "real" fix for Pulmonary Atresia.

We were at the cardiologist's office for over 2 hours ~ much of which was spent on my back, while they did the echo on his heart. So then we were late for my OB appt. When we got there, we found out that I didn't "pass" the glucose test I had to take last time. Now they want me to do the 3-hour glucose test ~ and do it right away so if there's a problem, we can do something about it. :-/ Only it wasn't so urgent they couldn't wait 2 weeks to let me know that I didn't do so well. Have I mentioned how frustrated I am with seeing an OB? Once again I will say that the care is just sub-standard to what I am accustomed to receiving. Midwives may not be able to offer the "high-tech" care, but they offer much more than that! I am so tired of feeling like I am nothing more than a chart and a paycheck.

One bright spot is that Jethro is once again head-down! What a good baby. :-)

Prayer Requests:

• That Mike and I would have wisdom. We are dealing with several different doctors ~ not all of whom are very communicative with us ~ and there are lots of things to consider and make decisions about. In most cases, we know what the dr.s want, and we know what we want ~ but we need wisdom from the One who *knows* what is best for Jethro and me.
• For the Pulmonary Atresia. Please pray specifically that God will heal Jethro's Pulmonary Valve. We are asking for a miracle. It's pretty well documented that the valve is not working. It is not something that will "heal" or "fix" on it's own. The Ebstein's is serious enough in and of itself, but the Pulmonary Atresia truly complicates things. It would simplify them greatly if God would choose to take that out of the picture.
• For my emotional well-being. I manage to keep my eyes uplifted most of the time. I do trust my Heavenly Father and I am walking in faith. However, it feels like every time I turn around in this pregnancy, something else is going wrong. I know that God doesn't owe me anything ~ He has already blessed me beyond measure, but at the moment I am struggling with all the "little" things that aren't "right". I know that when I am weak, He is strong...I'm just having a real hard time dealing with the weakness right now.
• A job for Mike. My darling husband has been out of work for almost a year now. He has not sat idle for the past year, but there has been no "job". He did have an interview last week, and we are still waiting to hear back from them. It is hard for a man not to be able to put his hand to the plow and provide for his family. I am specifically praying for a job with good benefits, so that as soon as Jethro is born, we can get him on insurance.

Christmas Letter 2009

Greetings, Loved Ones ~
I cannot believe that once again it is time for a Christmas letter! I had one all typed out and printed last year, and then time got away from me and only a few of them got sent. It has been another busy year, and a year full of testing our faith and watching God’s faithfulness.

In January, Mike was laid off. This started a journey of faith for us that has been incredible. We have seen God provide month after month ~ sometimes through odd jobs, sometimes through short-term employment, and often through generous gifts from unknown folks. In July, there was no money for our house payment. I began to pray, “Lord, I know that you can provide the funds we need. I don’t know how You’re going to do it, but I know you can.” One morning at church, our pastor approached Mike and told him that he needed our mortgage payment information. Someone wanted to make our house payment for us! What an incredible answer to prayer! Although it has definitely been a stretch, and we are more than ready for Mike to have regular employment, this past year has been such a blessing as we have watched God meet our every need. We have always known that it is God who provides, but when all pretense of self-reliance is taken away, then you know that it is God who provides!

We graduated Will from our home school this year, and he moved out. He has been working at the local post office for a little over a year, and is now thinking about Bible school next fall. At this point, he believes that the Lord is leading him to become a pastor. We have stood in awe at what God is doing in his life. He is blessed with a unique ability to share ~ both in writing and speech ~ what God is teaching him. Last summer, the youth did a “local” mission trip, reaching out to 5 local communities. Will did the gospel presentation at least once in each community, and it was very powerful to listen to. I am so thankful for the call that God has put on his life.

Levi is a senior, and seriously considering going on to college next fall. He had another great football season, and one of the coaches is really encouraging him to go on and play college ball. He is a really good running back, and it’s exciting to see him prepare to go on to the next level. He is a really good big brother, taking lots of time to play with the little boys ~ often he can be found in the middle of a gun fight with them, or sitting on the couch reading (“Just this one. Okay, one more.”), or with two little boys attached to his legs as he drags them around the house. He is also quite the cook! Well, as long as it involves meat. ;-)

Garth is now 15, and chomping at the bit to drive! He is currently saving his money so that he can take driver’s ed. Garth had a really good football season, starting in almost all the games. He even got to play starting QB against Mullan! He did a really good job. We have seen a lot of growth ~ physical and spiritual in Garth this year. He also went on the mission trip, and then to Creation in July. He is now heading up the “games” section of the youth worship service, along with a friend. It’s exciting to see the enthusiasm for participating in worship.

Logan turned 13 this summer. He spent a week at Camp Elohim in July, and really enjoyed himself. He is starting to attend youth group, and is involved with the drama team. More and more I see glimpses of the young man he is becoming and less of the boy. Logan has a great capacity for being loving and considerate, but does need to exercise that “muscle” a bit more.

Kathleen and Laura are now 9 and 7. They are a constant source of chatter around here. This summer they got to go to Yellowstone with Grammie and Pak ~ and we had a weekend of QUIET! It was very exciting for all involved. ;-) They are very enthusiastic about learning to cook and bake, and are learning to be more and more helpful around the house.

Josiah and Ezra (3 and 19 mo) are a source of joy and laughter in our home. These two little boys keep us on our toes! I don’t remember the older boys being so busy when they were little. We can’t decide if these two are really that much more of a challenge, or if it’s just that we’re that much older! :-D They love to play football, and will spend inordinate amounts of time kicking, throwing and running the ball ~ especially if there is a big brother to play with them!

The Lord has chosen to bless us once again ~ this time with a Valentine! This pregnancy has been a challenge; I have been fighting high blood pressure, and that along with my “advanced maternal age” has made this a high risk pregnancy. I spent some time in the hospital in October, and at that time we found out that our son has a congenital heart defect. Known as Ebstein’s Abnormality, it only occurs in 1 in every 210,000 births. The pediatric cardiologist believes that he will be severely affected by it, as his heart is already enlarged. There is a possibility he won’t make it to birth, and if he does, he will likely be a very sick baby and immediately take up residence in the NICU. We would greatly appreciate prayers for baby Jethro’s heart. I want to share how thankful we are to have found out about his heart ahead of time. We can make preparations for an NICU stay after the birth, we were able to change what hospital we are delivering at, so I won’t be in a different hospital from the baby, and we can prepare the children ahead of time as well. God is FAITHFUL and we know that He will carry us through this, whatever His will is.

We pray that this finds you healthy and joyful, rejoicing in the ultimate gift of a Savior. Merry Christmas!

Update

Monday I had an appt with the OB and yesterday I had perinatalogist and cardiologist appts. A couple of long days made worse by my fall on Sunday. :-(

Everything looks pretty good. I have cut back on my BP meds, and my BP is still lower, so that is wonderful. I am not nearly so totally wiped out at the lower dosage which has been great. I don't know what it is, but our boys do not like being listened to, and Monday, when the dr. tried to listen to Jethro's heart, he pitched a fit. It was really kind of amusing, he was all over the place, kicking and throwing his arms ~ he absolutely did not want to be listened to.

I am finding myself more and more frustrated with not having a homebirth. Obviously, that is just not a possibility this time around, but midwives are just so much better than OBs! Every single appt, I have to ask, "What am I measuring?" "What is the baby's heart rate?" There's not even any point in asking anything about the baby ~ because drs don't know how to do anything ~ like palpate a baby.

So, yesterday, we get to Deaconess for the appt with the perinatalogist. Which means an ultrasound. I was not looking forward to it. My tailbone is extremely sore, and the thought of two long u/s on hard tables was not my idea of a good time. Well, we ended up in one of the post-partum rooms and it had a wonderful, soft bed! I was very comfortable during the u/s ~ it was one of those things that I like to call a "God hug". :-) Just a little thing that let me know that God knows I'm hurting and cares. Then the u/s tech wanted to know if this baby has been breech. I said, "No. Is he breech now?" Yes, he is. Very frustrating. I told Mike, if I had had an appt with my midwife instead of an OB on Monday, we would have already known that the baby was breech. Right now, he's apparently 2 weeks ahead in growth, but I don't really pay a lot of attention to that kind of thing, because babies in utero have growth spurts just like they do after they're born. And we don't tend to have "little" babies anyway. After the u/s was done, they couldn't locate the dr., so they sent us on our way with instructions to call the drs secretary today. Baby looks good enough that we are done with the perinatalogist! So that was definitely good news.

After lunch we went over to the cardiologist's office. They were running about an hour behind, so we were able to get a tour of Sacred Heart's L&D, post-partum, NICU and PICU. Even though it was just a walk-through, it still provides a little familiarity for when Jethro is born. The co-ordinator that gave us the tour made sure that we knew we can call anytime with questions, and she will get back to us ASAP with answers. I was thankful to find out that vaccinations are not going to be an issue as far as the younger children being able to visit the baby, and especially if it looks like he won't make it, they will do everything within their power to make sure we have time together as a family. I don't think I have the words to express what a comfort that is to my Mama heart. It is definitely something that has been weighing pretty heavily on my heart.

After our tour, we went back up to the Center for Congenital Heart Defects and had another ultrasound. These u/s are totally centered on his heart ~ they don't really look at anything else. The cardiologist was encouraged that the growth of his heart is not over and above his overall growth. She is still very cautious, thinking that he will be severely affected by this defect. We are also likely dealing with Pulmonary Stenosis along with the Ebstein's. Although we probably won't know for sure until he is born. Once he is born, they will do an echo on his heart to have a better idea what exactly we're dealing with.

The cardiologist would really like to see labor induced at about 38 weeks, so everything can be "controlled". She is very concerned that we live an hour away from the hospital. I tried to tell her that after giving birth as many times as I have, the likelihood of labor catching me by surprise, and us not making it to the hospital probably isn't real likely. She suggested that we might want to stay in Spokane the week I'm due, but I know I will be gone from the children after Jethro is born, so I just can't be gone ahead of time as well.

This is something we would really appreciate prayer about. I do not want to be induced as it will increase my chances of a uterine rupture, it increases the chances for another c-sec., it means that they would have to constantly monitor the baby, so I would be tied to the bed instead of being able to move around. There are just many reasons why I would much rather go into labor on my own. We obviously want to do what is best for this baby, but within that, I want things done as naturally as possible. I hate being messed with during labor; and pretty much nothing has gone right in this pregnancy, so the thought of them "managing" or "controlling" labor makes me very leery ~ I just don't think we would have a very good outcome. So, this is something that Mike and I will be praying about quite a bit, seeking wisdom.