Surgery update #3

Finallllly on bypass! Yay!  He had a lot of scar tissue they had to clean out first.  Not sure how long from here, but they said Liam is doing great.

Surgery Update #2

They just updated us —Liam is doing great, anesthesia is complete and the surgeon is working on getting through the scar tissue.  Everything is progressing normally—Praise God!

Surgery update #1

They just took Liam  back about 15 minutes ago. He is doing really well - we had some hard moments this morning but all in all our spirits are good!  We should get updates every hour or so, so Ill post as we hear updates.

Preop was great this morning, Liam got to choose a toy from the toy closet and chose a cool Nerf gun.  The nurse set up some targets on the window so he could play in the room, so he was having fun!

Pre-Op down...tomorrow is the big day

Liam had pre-op all day and it went well. He is all clear for surgery tomorrow.  He had labs drawn, chest x-ray and ekg then we took a tour and met with the surgeon.  It was a busy day to say the least!  Liam did so great, and handled everything like a champ.  I am exhausted, but glad we got a good feel for how things will go tomorrow and the days ahead.

Surgery will begin tomorrow morning at 7:30am and last about 6-8 hours.  They will be doing quite a bit of work under the hood...swapping out his RV-PA conduit from a 14mm to hopefully a 20/22mm, doing patches on his right and left pulmonary branch arteries to widen some narrowing, closing his ASD and repairing an aneurysm on his left pulmonary artery.  Whew!  Yall can google all that, lol!  Oh and they will repair his 2nd belly button from his g-tube also, so thats a bonus!  We will be at Childrens Medical Center in Dallas, where we had his heart cath done.  Best case is we should have just a 4-6 day stay after surgery.

The child life specialist was so encouraging and helpful today.  We never really utilized one in the past because Liam was a lot younger, but Im so thankful of that occupation!  It is helpful to have someone who is so  patient, understanding and knows how to communicate to a nervous child all this medical information and ultimately what they will be experiencing.

We are so thankful for you all!  Please keep us in your prayers tomorrow morning and this week and I will keep updates coming!  Love yall!

Packing and Prepping

Surgery day is right around the corner, so this weekend is pack and prep!  Liam is doing great, and staying positive as he always is, so I'm so thankful.  We are very open with him and have had a lot of good conversations about the surgery and recovery, so I'm hopeful he feels prepared too.  Spiritually, he is amazing - so expectant to see God work some miracles -- which is incredibly inspiring and he is really encouraging my own heart! 

I am doing pretty good, although this is a challenging trial for sure...It is just a very different dynamic than last time on all fronts, so God is definitely moving in new ways and I am really having to press in for His grace and mercy....But oh He is faithful!  There is a lot stirring inside me, so I am also expectant and anticipating the work of God through this season. 

Anyways, being in our bubble the last couple weeks at home has actually been pretty fun!  We had a nerf shooting contest, fancy tea party, couch forts, car ramps down the stairs, board games, play doh, cookie baking, painting, crafts...if we had it, we did it, lol.  Feels a little like summer vacation actually!

I was hoping to type up a post about what is in our hospital bags for this stay, but I think I'll save that for another day.  My hope is this blog can bring encouragement and helpful and practical advice for anyone going through similar journeys, so that is why I am looking at doing some more practical posts too.  I have my packing list already, but it's pretty long and I tend to overpack, so I may wait until after so we can really see what all we absolutely needed and used, and what might could have stayed at home.  The hospital is a good 45 min to an hour (or even almost 2 with traffic) away from home, so it will help to have necessities with us. 

Right now, pre-op is this Tuesday and then surgery is set for Wednesday - we will find out at pre-op what time and how long (among all the details) the surgery will be, so we will update then.  Besides that, we are just going to try to enjoy the next few days and be at peace that the Lord has got this!  I also just wanted to send a big hug and thank you to our family and friends for helping us with logistics, childcare and everything else that we may need....we are so appreciative of everyone and especially for all of the prayers for us during this time! 

Thankful for the gift of time - Surgery rescheduled

As I mentioned in my last post, Liam has been under the weather for over a week, coughing and then running a fever this past weekend, so I made the call into the surgeons office per protocol this morning...Because of his respiratory issues, they do not want to risk anything, so surgery is postponed until the 16th.  Liam and I went downtown to the hospital to get a virus panel done on him, so they could know for sure how long to postpone.  Thankfully, all the results came back negative, so that's good news! Praise God!  Now we just have to be hermits another 2 weeks (which is fine by me!) and keep him healthy until then. Today wasn't exactly the plan we were hoping, but we trust God's timing...And honestly, I am a little relieved and thankful for the gift of more time.

Liam has been such a trooper!  He really has an amazing attitude, taking everything in stride.  Here is a picture of him before his nose swab, and during lol.  In case you need to explain to your child how this is done....dealing with an older child now, I know it's super helpful for me if I can find pictures or videos that show him what a certain procedure is. 

We enjoyed watching the "Trainscape" at the hospital, it really is quite the display of electric trains!  We didn't get a chance to stop by during his cath, so we visited today.  It was actually nice to get out of the house for a bit, even if just to go for a test. 

We hope everyone has a safe and happy New Year's Eve tonight!  You all bless us so much, and we thank you for all the prayers, texts and messages - really means a lot to us and Liam.

8 Years Later

We hope everyone has a wonderful Christmas!  We had a great time with all our family here--the kids had a blast and my house is a disaster, so I guess it was successful! 

As I am looking back over the years and gearing up for the start of 2019, I am reminded of just how FAR we have come.  Wow!  God is so so good, all the time.  He is so faithful!  Today is actually the "surgi-versary of Liam's 3rd open heart surgery, exactly 8 years ago....

It has been encouraging to read back through that last surgery and see how relatively smooth it went though!  I know it will be a tough road, but my heart is encouraged tonight.  I am so thankful I have our experience documented.  The Lord has been stirring many projects in my heart related to this journey of ours, so I am excited to see where that all leads as well. 

A couple weeks ago, we followed up with our ENT at Medical City, and saw this crazy bus outside, LOL.  Unfortunately, that was all we saw of the boys! They were visiting several local hospitals that day I heard. 

 

Liam is a little under the weather right now, which reallllly stinks =(  Please keep him in your prayers...I know God will direct our steps as we plan our way this week, and I trust His timing of everything.  Thanks for joining us on this journey!  We are thankful for you - many blessings for a wonderful New Year's Eve and Day this week!

Such a time as this...

So it's been awhile since I last posted, but I am due for an update post!  Most of you probably follow me on Facebook and know Liam recently had a heart cath procedure this past week.  This was due in response to his last cardiology visit which captured some higher pressures on his echo.  We were hopeful that these pressures were not consistent and that the heart cath might be able to balloon or stint some areas to relieve it.  However, the findings were that Liam's conduit and valve show severe calcification and stenosis, increasing the risk to any interventions by cath, and further indicating that now is the time to do his (hopefully) final heart surgery to get in a larger conduit to last into adulthood.

While obviously this news was hard to hear, we have been extremely blessed to have had virtually no interventions needed since his last surgery in December of 2010 - 8 years is a great sign to us that his next surgery can last even longer, and that any future interventions will be able to be made by cath and not surgery.  Huge praise!

Dr. V is looking over the cath results and meeting with the surgeon early next week to figure out the game plan and then scheduling will be calling us with dates after that.  So we should have a surgery date by next week! Eeek.  This is a whole new ball game with an older child (and now younger siblings at home), so I plan on doing some blog posts with how I am preparing our family and Liam for his upcoming surgery.  Just being in the hospital overnight for the cath was very different than our previous stays, because Liam is now much older and we also have our other children at home to care for as well.  God was so gracious during this recent cath, and has given Dustin and I much wisdom on how to proceed in preparing for surgery.

We appreciate your prayers for this upcoming surgery and will keep updates coming on here.  We love you all!

Weeds and Wildflowers

Back to my annual posting on the blog! LOL It has been way too long friends.  SO much and then not really a lot have been going on around here.  This past year has been a year of growth in all directions, steadily plodding forward day by day.  The kids are growing at rapid speed physically and emotionally which has me digging deep and looking up DAILY (sometimes every minute!) for strength!  It is a unique season of sowing seeds and harvesting all at the same time.

This morning I was reading in Hosea about God's faithfulness.  The contrast between His constant desire and love for us to look to Him alone for all of our needs, and our human waywardness to desire wordly ways to fill those needs is a constant source of struggle for the Israelites, and I find it also true in my own life.  God remains the same: longsuffering with us, faithful, true, holy, redemptive and above all, loving.  Even in our transgressions against Him and His character, He chooses to offer us reconciliation. 

These weeds of our flesh can become a beautiful bouquet when we let the Master pick us, prune us and re-plant us in His beauty and set us apart into a display of His splendor and glory.  I am ever so thankful He does this when I call out to Him.  This idea of turning chaos into beauty and order is His specialty.  I took this picture of the the bouquet my kids picked for me...we like to call it our wildflower bouquet - illustrating again that weeds can be beautiful in the right setting and in the right hands!

Just some tidbits of thoughts and ponderings today.  God has been leading me into a new season of work.  One which does satisfy my longings to create my art, but in a way that I am a bit unfamiliar with.  It also involve some financial risk, so I am trying to trust Him and follow, but it is difficult!  Trusting in who God is and who I am in Him is critical for me to be able to step forward. 

And since it's been sooo long - here are some brief updates for our family!

• Momma's got a new ride!  Yes, that's right, we squeezed 3 kiddos into the back of a Camry for a long time, but as they get bigger, we needed to adjust our transportation method!  SO I am now in the #minivanclub.  I actually LOVE it and not sure why there is stigma around such awesomeness!  It's the greatest thing in my world since Mac n cheese! Ha!
• Liam is doing great health wise, and all other wise.  He just got braces last week...Where is my little boy....gosh he is growing up fast!  We had his biannual cardio check up a couple weeks ago and there remains no change on the echocardiogram, wooohooo!  This is good news for us.  I believe his pressure remain in the 40/50 range, which is stable for him.  We do however, need to go get him a MRI of the heart as a baseline for future visits, to be sure the right side of the heart looks good and is not growing (meaning overworking or enlarging).  They are unable to accurately see this aspect of his heart on the echo.  We have this scheduled for May 7th.  He will be doing this unsedated, which we think will be fine, but challenging for him to be calm and still.  We would covet your prayers for him for this test! 
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• Noah is doing great as well.  He is FULL of life and energy, headstrong, confident and detail oriented (a.k.a. takes everything apart and curious about EVERY.THING).  I call him my "passionate" child!  He is a joy, and growing into such a smart and funny young boy.  Parenting him seems to still be a bit of a challenge at this age, but he is teaching me to grow in that.  It's never a dull day around here!  
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• Adeline is just the sweetest, but can get a little bossy with her brothers!  And they let her! Haha.  She is very motherly and loving with them, already showing empathy towards her brothers's meltdowns and frustrations by patting them on the back and trying to hug them during those moments.  She is STILL napping 2x a day which is a WIN in my book!  She is generally content and happy as long as she has something to munch on....definitely my best eater so far! Ha!  She is also in 94% for height, so she is growing quickly!  She is pure sweetness at 16 months old.
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•  Dustin and I are doing well also, still plugging along on our fixer upper home, doing various projects here and there.  Maybe someday I'll post some before and afters! Other than that, we are not growing like weeds, and have turned into fabulous adults, LOL! Just kidding, we are just not as exciting as the kids.

Hopefully I'll be able to update more frequently here!  Thanks for stopping by!

When you just don't know how to parent THAT child

It's me again.  I aspire to blog more, but life has me in the thick trenches of parenting right now and I just can’t quite seem to get it together enough to type out cohesive thoughts to make a post lately, ha!

I had a conversation with my hubby over the past week and I confessed to him and said “I just do not know how to parent this child!”  Our lil 2 year old (as seen above in a fitting picture) is a completely unique, strong willed little boy...well, probably more of a typical toddler, but my oldest spoiled me in his toddler years being dubbed as the easy one now, ha! I find myself in this season waving the white flag of surrender on an hourly basis.  I have become quite the Jekyll and Hyde momma, either harshly yelling at him to just STOP! or standing there is disarray not knowing what to do or say feeling like "I give up!"  I am at my total weakness with him.  The Lord has shown me His strength and wisdom through this time and I am so grateful He cares for us even in the details of life.  His compassion and mercy never fail to amaze me.  And bless my little ones heart, he can be the sweetest boy imaginable....but this parenting deal….it’s tough!

Earlier this week I was watching a video on the Weather Channel about an eagle.  The video showed rare footage of an eagle swimming in a bay.  Its wings flailing to stroke the water, meanwhile his head always remained just above the water.  He really actually looked like he was hurt because that was not his element, but the commentary stated that eagles sometimes do this when they catch a fish that is too large and heavy to pull out of the water.

Isn’t that what parenting is like sometimes?  Our children are such an immense blessing and treasure, however we can feel like we are just struggling to keep our head above water, plus it feels like SO MUCH WORK sometimes!  Not to mention it APPEARS as if we are just treading water!  But we know the reward we carry for hanging in there, even if we or others can’t see the fruit because it’s hidden under water.

The Lord spoke so powerfully to me in that video – many other things as well.  He has indeed equipped me for the task but it is a daily journey with Him.  Here are a few lessons He has shown me lately:

Prayer – I have cried out for the Lord to help me more in this season of my life than I can remember for a really long time.  I am in constant prayer asking for forgiveness, that the Lord would take the reins, that He would give me wisdom on what and how to parent and that He would make known to me His peace, that it really will be OK.   

Perspective – Just like the eagle knew the huge blessing he was carrying under the water, I need to remember that my children are a blessing from the Lord, a GIFT from Him.  Even though I may struggle and feel like I am drowning at times, when I focus on who God is and who I AM in Him, then His peace enters in and I can partner with Him as He guides me and sustains me.  The grace of the gospel reassures me and places my feet on a firm path.

Picking my battles – This has been really big for me because I struggle with allowing other’s expectations to guide the way I parent.  Recently I have decided to stop battling at mealtime…It has been a constant source of frustration and trouble for me since our firstborn started eating.  Eating has never really come easily for my children, but I feel like meal time is a really important relational time for young kids, and I don’t want a huge focus on food anymore.  I feel like this is a place that Joy has been stolen from me and I want to reclaim that.  This is new territory for me, because I think other’s expectations of how that time should look really influences me in in how I parent through that, and I want to let go of that ideal.  

Perseverance – The book of James and Hebrews tells us that God promises a crown of life to those who persevere under trial and that this work must be completed so that we may be “mature and complete, not lacking anything” (James 1:4).  Joyful perseverance, I believe, is how God uses us to testify to His love, strength, power and glory.   I am using this time to lean into Him and to practice faith in believing that He is completing some a LOT of things in me in the process.   Just like my toddler, I am a work in progress with my heavenly Father.  Parenting in and of itself is a pursuit in perseverance, raising children into adults.  Praise Him for the grace he freely offers! 

Peer pressure – In a good way!  I find myself very needy in regards to surrounding myself with encouraging friends and family during this time.  They press me onwards to focus on Christ and encourage me that I never walk alone, nor do my children.  Even when I am a complete mess of a parent, God is always with my children.  I faithfully believe He can also redeem our greatest fears and worries for them.  I have a great group of godly women who pour into me constantly and I am so blessed and thankful for them!

Practicing grace – I am seeking the Lord continuously in this area.  I still do not know for sure what this should fully look like as it relates to parenting my children, but I do know the Lord is showing me ways to live simply and root myself in His gospel of grace.  The gospel of grace IS simple – Because Jesus Christ died for ALL our sins, past, present and future, in Christ we are a new creation, forgiven and accepted, adopted as God’s children and heirs to His kingdom.  All that is required of us is that we BELIEVE and accept this gift of GRACE and this truth.  Our children need lots of grace (as do we all!), so it gives us a chance to reflect on the grace offered to us through Christ’s sacrifice as well as model that for our children. 

Press in – More of Him and less of me.  Period.

Plainly said, I don’t have all the answers and that is OK!  With Christ, he promises I can do ALL things because of Him who GIVES me strength - it is a gift from Him, He delights in me!  In this weakness, I can lean into Him to make me strong.   I am turning my cry into thankfulness for the gentle way He is leading me and the truths He is speaking to me.  Even though on the outside, it may only look like I’m a sinking ship, or a swimming eagle =)