Jethro is 2!

We once again have a two year old in the house.

Sunday was Jethro's birthday.

This year was low-key. No large celebrations.

But, all the kids were here, plus a couple extra (girlfriends),

and we had a good afternoon of eating and visiting 

and cake and presents.

Although Jethro was not that interested in opening presents.

He was happy to play with his toy after it was open,

but if it hadn't been for helpful siblings, his presents would

still be wrapped.

He loves Lightning McQueen, so of course he had to have a cars cake.

Here's the birthday boy, rockin' his new Under Armour shirt.

Happy birthday to you, happy birthday to you!

He didn't get the whole, blowing out the candles idea. He just wanted to grab them. Daddy blew them out for him. =)

Playing with his new wheelies construction ramp...I think all the littles loved it.

Birthday parties are EXHAUSTING! =)

We are so thankful for 2 years with Jethro!

God has sustained him and caused him to flourish. 

He is doing so well right now, and if it weren't for his

scars, and the amount of sleep he needs, 

you wouldn't know that this baby was

DOA. 

Tobias

Just a couple weeks after Will and Andie got married, our family expanded again. My due date with this baby was the 3d of October. But, on the morning of September 6, I woke up to a gush of blood. I woke Mike and he called the ambulance. When the ambulance crew got here, they told him that they had already called for the life flight. I was pretty sure we had lost the baby, but Mike kept saying, "No, he's okay. He's fine."

But, I couldn't get him to move. When the EMT's got here, one of them listened to my belly with a stethescope and told me that the baby was fine. NOTE to EMTs...*that* is not reassuring to a Mama! Maybe, perhaps if it had been someone that I know is familiar with prenatal or birth situations...but it was not. He wanted to check me, to make sure baby wasn't crowning and I told him, "NO." After 10 babies, I think I know what labor is, and this was NOT labor!

When the helicopter got here, it was so small that Mike could not ride with me, so he had to follow on the ground. I had to ride shotgun to the pilot ~ oh, and I don't like heights or flying...so that was fun. :-P I was pretty certain that once we got to the hospital, they would just send me in for an emergency c-section. However, first the Dr. ordered an ultrasound to check on baby. And they got a doppler ~ what a *precious* sound that baby's heartbeat was! I was so relieved...although by then I knew he was alive, because as soon as we were in the air, he began to move. Ultrasound showed that baby looked good and was doing okay, despite the abruption. The Dr. really preferred to do a section, but agreed that as long as everything looked okay with baby and me, we could proceed with labor and a natural birth. I was so very thankful. The one time/place I was not expecting to get my VBA2C. So, knowing full well the risks involved with both a repeat c-section and with laboring...we proceeded with labor ~ and the hospital staff prepared for worse case scenario. Which meant big needles in my arm, that were hard to place, but I was good with that.

Labor had actually started by the time I got to the hospital, and all day and into the evening, I labored...not strong, hard contractions, but just enough to let me know that we were having a baby. Finally, late in the evening, I told the nurse that if the Dr. would break my water, we would most likely have a baby soon. He came in about midnight and broke my water. By 2 am, I was pushing and pushing and pushing. After 2 hours of pushing, we had a baby! I had such a hard time...and at one point decided I was done and would go ahead with a section, but the Dr. came in and said, "No." So, I pushed. Some time during labor, the baby had turned posterior (I know he didn't start that way, because I asked when they did the u/s), and after my last couple of births, I just had a very difficult time not fighting against the pain of the contractions. After being cut a couple times, those muscles just don't work the same either. :-/ But, we were so very thankful for a healthy, live baby, and I was thrilled with having a VBAC!

Tobias James was premature by 4 weeks, and still weighed in at a whopping 8lb 15oz. Nice little preemie, wasn't he? ;-) Needless to say, I am thankful he was premature! Had he gone to term, I'm not sure I could have done it. He could have been up to 4 pounds heavier at term.

I lost a lot of blood, so we were in the hospital for a few days following the birth so that they could give me transfusions and be sure that I was good to come home.

Sweet 'little' preemie! I was so relieved to finally hold him in my arms!

Tobias is such a joy to our family, and we feel so very blessed that the Lord chose us to be his family. He is a chunky baby, and such a happy disposition! Jethro adores being a big brother and loves to give his baby kisses. :-)

Baby in a basket. Daddy took some adorable pictures of Tobias once we got home.

And here he is at 5 months. Happy, healthy and almost always with a smile on that chubby little face. :-)

The Wedding

2011 brought some big changes and additions to our family. The biggest change was that in August, our oldest son, Will, got married. What an exciting time! It was thrilling to watch him go through a courtship, and move into this new season of life. His bride is from Iowa and they were introduced by a family member/friend. Andie had been a huge support throughout Jethro's first year, praying for him and encouraging me with her upbeat outlook. So, she had won our hearts long before we knew she would be our daughter in law.

They got married on a beautiful August evening, in the yard of some dear friends. It wasn't a big fancy, tens of thousands kind of wedding, but I think that made it all the more special. They had a pretty small budget to work with, and it was a very lovely wedding. God has placed some very talented and creative folks around us...and it was a little redneck-y too, which added to the charm!

Our last picture with Will as a single man. By my belly, you can tell what our other big change may have been last year. ;-)

Pak, Daddy and the boys. From left to right...in front, Ezra and Josiah (Daddy is holding Jethro). Back: Logan, Levi, Pak, Will, Daddy, and Garth. Aren't they a good looking bunch of guys? 

 

 

 

The kiss!

This was Will and Andie's *first kiss* How special is that, and how often do you see that? It was a very special moment...and long awaited! :-)

Mr and Mrs Charles William Dole

Wow. They have been married for just over 6 months now. I so look forward to seeing how God is going to bless their marriage. They are both very ministry minded, and Will is working on getting a Biblical education and gaining some maturity/wisdom so that eventually he can pastor.

CHD Awareness...A Double Portion

And the Lord restored the fortunes of Job, when he had prayed for his friends. And the Lord gave Job twice as much as he had before...And the Lord blessed the latter days of Job more than his beginning.

Job 42:10, 12a

As the Bible relates Job's story, we learn that everything is stripped from Job. His children die, he loses his belongings, he didn't have the support of his friends. Even his wife encouraged him to curse God and die. Yet though he does not understand, and even questions God, Job does remain faithful and teachable. When all is said and done, God blesses Job with a double portion of what he lost.

You may wonder why today I am sharing this. What could Job have to do with CHDs? Well...he's just kind of a backdrop for what I want to share. Seven and a half years ago, we lost a son at birth.  It was sudden and unexpected. I pleaded desperately with God to allow me to keep and raise my son. I was not strong enough to walk the path of a grieving parent. But, God said, "No." Tucker would not be restored to us. We would commit his spirit to the Lord and his body to the ground; and Mike and I would learn to walk in faithful trust even when we could not understand.

Fast forward five years and we learned that the baby I was carrying had a severe heart defect. We were told he likely would not live. And emotionally, I was thrown back to the morning that Tucker was born. I was terrified to walk through that kind of grief again. I knew that God would carry me if that was His will for us, but I just did not want to go there. As I prayed, God blessed me with such peace. Everything would be okay. I don't mean to say that I had a sense that Jethro would live, necessarily, but just that whatever was ahead of us, we *would* be okay.

I have told Jethro's birth story here more than once, so I won't repeat it now, but know that he had a very rough time of it in the beginning. He was pretty far behind developmentally because of his initial setbacks and subsequent hospitalizations. At 6 months, he could not even hold his head up. He was probably around 8 or 9 months before he rolled over, 10 months before he could sit without support, past his first birthday before he crawled and 19 months when he walked.

As we have watched Jethro grow and develop, especially over this last year, we have taken such joy in every accomplishment, whether it's moving up to an 8oz bottle from 4oz, crawling, teasing play, or running and keeping up with the other little boys. We always find joy in the milestones our children reach. Each one for each child is special. However for Jethro, each skill is a hard won victory. Nothing has come easily for this sweet boy. And yet even as little as he is, he gives it his all. He doesn't do anything in half-measures. Once he decides he's going to do something ~ watch out! Because he's going to do it fully. The day he decided he was going to try the stairs, he didn't go up just one or two ~ he went up 2 flights of stairs!

As we were marveling at some common thing he was doing one afternoon, and cheering him on, I looked over at Daddy and said, "I wonder if we had been allowed to raise Tucker if we would have been blessed with Jethro. He's just a double portion."

I don't know how to adequately describe what it is like to watch him do such ordinary toddler things and to see them as extraordinary and even miraculous. With each milestone to be reminded that it almost wasn't. Each day with Jethro brings such unspeakable joy, I feel like my heart could burst from it. What a contrast to the shattering grief it endured when Tucker died.

There is just something special about Jethro. I believe that all of our children have a special bond with him, and even strangers, who know nothing of him or what he has been through are drawn to him.

I would never have asked to be a heart mom. It is certainly a difficult path to walk, so much to learn, separation from family, watching your child suffer and have to endure painful treatment so that they can live ~ and not being able to 'fix' it. Entering into a new world of hurt and grief. And yet, I am so very thankful for the blessing of being Jethro's Mama. I am humbled that God chose Mike and I to love and cherish and raise this remarkable little boy. I am so very thankful for this double portion.

***This year, in my awareness posts, I hope that I have helped to not only raise your awareness of Congenital Heart Defects, but also to know that while we walk an uncertain road with our heart warriors, there is normalcy, although it looks different than it did before. I want to encourage you that there is hope, there is joy...even with, or maybe even because of a broken heart.***

What Congenital Heart Defects Have Meant to Our Family

What has CHD meant to our family?

It's meant a heart broken ~ beyond comprehension. Who could understand a heart so defective that it can't support life?

It's meant innumerable hours at the computer, researching, learning, writing down questions for the cardiologists.

It's meant a steep learning curve. Medical terminology, equipment, and skills I never dreamed I'd need to know.

It's meant more time than can be measured spent in prayer. Asking for healing, for wisdom for the doctors, for clarity in decision making, for peace, for comfort, for joy in the journey.

It's meant more Dr.s visits than I can count. 3 different doctors before he was born, and close monitoring by the cardiologists after.

It's meant hospital stays.  Some long, some short. Each one bringing separation from the other children, and filled with uncertainties, setbacks, complications, and finally...improvement.

It's meant lots of new folks in our lives. Doctors, surgeons, nurses, ultrasound and echo techs, therapists, and nutritionists. All coming together for the good of our son.

It's meant struggles. Watching our son, machines breathing for him. Wires and tubes, needles and probes. Not being able to hold and comfort him. Feeding difficulties and developmental delays.

But most importantly ~
It has meant our faith has grown. As we have watched God answer prayer after prayer. As we have watched a precious, fragile little boy strengthen and grow.

It has meant we have a new-found appreciation for the little things, the things we often take for granted. Things like holding a baby and rocking them. Things like rolling over, sitting up, crawling, and walking.

It has meant joy. Every step of the way God has been by our side ~ often He has carried us. No matter what we have faced with Jethro, we have been thankful and there has been joy.

It has meant daily experiencing the grace and faithfulness of God. Seeing our older children step up to the plate and care for their younger siblings...to love them and hold things together when it's all falling apart. To watch Jethro make each milestone...each victory hard won. To see him happy and 'normal'.

I wouldn't have missed it for the world.

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

Congenital Heart Defect Awareness Week

So much has happened since I last posted. Including both my computers dieing, which is one reason I haven't posted. :-/ However, an update will wait for another day. Today through the 14th is CHD Awareness Week, and so I will be sharing facts and possibly other blog posts about CHDs this week.

Here is the proclamation signed by Gov. Otter proclaiming Feb 7-14 CHD Awareness Week in the state of Idaho!

I was very excited to get a proclamation from the Governor for our state this year. Our local paper, The St. Maries Gazette, also did a really nice article on Jethro and CHDs.

All across the country, there are moms who are advocating for legislature to add Pulse Oximetry Screening for Newborns. I began to do this for Idaho, but after talking with my representative, decided that the way to attack this was to contact the individual hospitals and ask them to do the right thing and add Pulse Ox Screening to part of their standard newborn care. I have gotten mixed reactions from the hospitals that I have contacted, but most seem willing and anxious to get started.

You may wonder why this is important. 1 in 100 babies are born with one or more CHDs. That's about 40,000 babies a year in the US alone. Only about 25% of those babies will be diagnosed prenatally. That equals a lot of babies who go home from the hospital with parents who believe their baby is healthy. Some of those babies die in their parents arms a week later...sometimes sooner, sometimes longer...some of those babies end up at the Dr.s office in critical condition ~ crashing, we call it. For those babies, a simple, non-invasive test performed at 24 hours after birth could save their lives. Pulse Oximetry measures the oxygen saturation in the blood.

Have you ever gone to the Dr.s office or ER and they put a clip on your finger? Yeah. That's pulse ox. Didn't hurt did it? The actual screening process for a newborn is a bit more complicated than that, but not by much. Pulse Ox screening will not catch every heart defect, but it will catch those that are fatal. They are referred to as Critical Congenital Heart Defects. They affect the oxygen levels in the blood.

If you are going to have a baby, ask for a pulse ox to be performed at 24 hours. Before that, they aren't so accurate because the baby is still adjusting to life outside the womb. The screening needs to be done on the right hand, and on one of the feet. Baby should have saturation levels of 95% or better and no more than 3% variance between the hand and foot. If baby fails the first screening, it should be done again in about an hour. Our hospital also will do a third screening if the second one is failed. This is just a fail-safe against false positives. If baby does not pass, then an echo on their heart should probably be done...definitely someone more specialized, like a pediatric cardiologist should be consulted. This is especially important if you live in a more rural area where your baby will have to be transported if there is a problem. Time is of the essence for these kiddos.

Most hospitals are not yet doing this routinely. YOU WILL HAVE TO ASK. This is your baby, so don't take no for an answer. Chances are, your baby has a healthy heart. But if not, wouldn't you rather find out about it before you leave the hospital? No parent should find out about their baby's CHD from the coroner.

If you get home without a pulse ox, here are some signs and symptoms of CHDs. Not all CHDs will show these signs. Some defects are not as complex, and you can get to be an adult before you ever find out you have one. These are signs that *May* be evidence of a CHD. If your baby shows some or all of these signs, don't panic, but do make an appointment ASAP with your Dr. It's better to be safe than sorry.

From Mended Little Hearts. Signs and Symptoms

• Blue coloring
• Breathing difficulties
• Fast breathing
• Poor weight gain
• Feeding difficulties
• Tiring easily during feeding

Be aware of the signs, be proactive for your newborn. Blessings to you.

***I am not a medical professional. So, do your homework... ;-) ***