Monday, October 27, 2008
Last night, the diamond fell out of my wedding ring. It's a small diamond, the ring's not extremely expensive but it's my WEDDING ring, people. We couldn't find it. (We didn't spend a bunch of time looking for it, it's small, I discovered it missing when I was in bed). So today I walked around with a naked ring finger. I used to think that I'd like a mother's ring (still do really) or an anniversary ring, but what I want right NOW is my wedding ring back. Funny, how that works, huh?
We've been informed (by more than one source) that the percent of marriages that fail after the death of a child (still living at home) is something like 80%. EIGHTY percent. That's 4 out of five marriages FAILING after a crisis like we're coming through. Leland and I have already made the decision to do whatever we can, and seek help when necessary, to make sure we don't wind up there. We have three other kids who need us and we can not let this tear our family apart.
So, in the middle of our grieving.. the diamond slips out of my ring. I admit, the timing sucks. Fortunately, I don't put much stock in this type of thing as an "omen" or whatever. Still, I was feeling sad, a little out of sorts, about everything and losing the diamond didn't help.. And towards the end of the day, I found a penny! If you haven't been reading long enough to understand the signifigance of that, read here.
I am so glad that pennies are plentiful, and God is patient.
Saturday, October 25, 2008
So, I haven't posted lately. (Duh). I'm struggling just a bit (Duh, again).
When I started this blog, I told my big kids (read: Sean & Cary) that "No, this would not be ALL about Seth." "Yes, this will be about our WHOLE family". Honestly, I intended for this to be a place that I could update people - friends, family, other interested parties - on how Seth was doing. We'd be able to share his milestones here, etc. Okay. So. Not so much.
I'm struggling to figure out where exactly I'm going with this whole blog now. Maybe I should just throw in the towel? I figure by now I've lost any readership I'd managed to attract (yup, all four of you).
And then I realized something.
I need to rethink ALL of it. Not just the blog. Everything. I'm the mom of four children with only three to actively parent. I don't know what that looks like. Sean has TWO younger brothers. Cary is the "luckiest" (as we tell him) because he has a big brother AND a little brother. Kayleigh is NOT the youngest member of our family. I just mentioned to a friend yesterday that I want Kayleigh to KNOW that she IS a big sister. I don't know what any of this looks like.
So, apparently, for now, this blog is a metaphor of my life. I guess that we'll figure it out together. God, my husband, I and the kids. And as best I can, we'll let you come along for the ride. Hang on! I don't know what's around the next bend!
Your own ears will hear him. Right behind you a voice will say, “This is the way you should go,” whether to the right or to the left. Isaiah 30:21
Saturday, October 18, 2008
Friday, October 17, 2008
Wednesday, October 15, 2008
It's dark outside. Our house is finally quiet. I should drag myself to bed. But in a very real way, tomorrow does not shine brightly for me at this point. Tomorrow is the day we bury our son. I honestly have no idea how I"ll get through the day. Except, of course, I have three other children who need me. They need me to be their mom and help them deal with their grief. And I need to figure out how to do that while dealing with mine.
And in spite of my fears & worries, the sun WILL rise tomorrow. (It may be behind cloud cover but it will be there). The world will go on. We'll get through saying good bye to Seth, again. And we WILL move forward in hope.
But I will call on God, and the Lord will rescue me. Morning, noon, and night I cry out in my distress, and the Lord hears my voice. (Psalm 55: 16-17). Thank you, Lord for being our strength morning, noon, and night. I praise you for hearing my cries and rescuing me.
Tuesday, October 14, 2008
Sunday, October 12, 2008
Wednesday, October 8, 2008
Seth is the same. He's on a very large amount of sedation but we do seem to have finally controlled the rigidity and posturing. He's such a sweet beautiful baby, looking at him it's hard to believe he's so broken inside...
We took a "field trip" yesterday and with our nurse and oxygen tank, took Seth out to the Healing Garden here on the SHMC campus. It was beautiful. Leland and I both cherish the time we spend right now, holding, loving on and praying for our sweet boy.
We appreciate all of you lifting us up and want you to know that we do feel those prayers and know we are surrounded by love.
Waiting on the Lord,
Spoiler alert: If you didn't see the season opener a week ago last Sunday, I'm about to ruin it foryou.
In the show, Jonas & Bob & the other guy who I can't remember (not Mac) are holed up in a cabin in the woods. They are trying to protect the vice president elect from terrorists who have already killed the President of the US and the President elect. All their efforts to thwart the enemy fail, they are out of ammunition and expecting the end to come any second. Jonas, who has been somewhat injured by shrapnel, with all the effort he can muster, pulls himself up to the big clawfoot tub where they have hidden the VP elect and lays across the tub. He expects that the very last thing he does will be this last ditch effort to protect this other man. (The calvary, Mac of course, shows up at the very last possible second. "What took you so long?").
That scene spoke so intensely to me. I kept thinking about it. I want to throw myself across Seth in that manner. I want to drape myself over him and with my last effort, everything I have, I want to protect that sweet boy. And as much as I want to do that, I can not. But all is not lost. God can. And does. GOD can throw Himself over that sweet baby I love so much AND our Saviour is the calvary coming at the last moment. At the cross, this has already been done for us. Furthermore, if I keep throwing myself over Seth, I make it a little harder for Jesus. At this point, it's just my job to get out of the way.
And because God works in mysterious ways, I"ve recently been reminded in more than one way & place of Psalm 18: 2. "The Lord is my Rock, my Fortress, and my Deliverer; my God, my keen and firm Strength in Whom I will trust and take refuge, my Shield, and the Horn of my salvation, my High Tower" Thank you, Lord.
Saturday, October 4, 2008
I'm having a hard time figuring out how to start this email..
Leland and I are staying at the hospital around the clock.
Our family is TRULY learning what it means to "let go and let God".
Someone sent me the following forward..
I can't remember having read it before (although I certainly may have). I took the liberty of deleting the stuff on the bottom (chain email stuff). Forward it on or not is up to you. But DO think about what it says....
You always hear the usual stories of pennies on the sidewalk being good luck, gifts from angels, etc. This is the first time I've ever heard this twist on the story. Gives you something to think about.
Several years ago, a friend of mine and her husband were invited to spend the weekend at the husband's employer's home. My friend, Arlene, was nervous about the weekend. The boss was very wealthy, with a fine home on the waterway, and cars costing more than her house. The first day and evening went well, and Arlene was delighted to have this rare glimpse into how the very wealthy live. The husband's employer was quite generous as a host, and took them to the finest restaurants. Arlene knew she would never have the opportunity to indulge in this kind of extravagance again, so was enjoying herself immensely. As the three of them were about to enter an exclusive restaurant that evening, the boss was walking slightly ahead of Arlene and her husband..
He stopped suddenly, looking down on the pavement for a long, silent moment. Arlene wondered if she was supposed to pass him. There was nothing on the ground except a single darkened penny that someone had dropped, and a few cigarette butts Still silent, the man reached down and picked up the penny. He held it up and smiled, then put it in his pocket as if he had found a great treasure. How absurd! What need did this man have for a single penny? Why would he even take the time to stop and pick it up? Throughout dinner, the entire scene nagged at her.
Finally, she could stand it no longer. She casually mentioned that her daughter once had a coin collection, and asked if the penny he had found had been of some value. A smile crept across the man's face as he reached into his pocket for the penny and held it out for her to see .She had seen many pennies before! What was the point of this?
'Look at it.' He said. 'Read what it says.'
She read the words ' United States of America '
'No, not that; read further.'
'No, keep reading.
'In God we Trust?'
'And if I trust in God, the name of God is holy, even on a coin. Whenever I find a coin I see that inscription. It is written on every single United States coin, but we never seem to notice it! God drops a message right in front of me telling me to trust Him? Who am I to pass it by? When I see a coin, I pray, I stop to see if my trust IS in God at that moment. I pick the coin up as a response to God; that I do trust in Him. For a short time, at least, I cherish it as if it were gold. I think it is God's way of starting a conversation with me. Lucky for me, God is patient and pennies are plentiful!
When I was out shopping today, I found a penny on the sidewalk. I stopped and picked it up, and realized that I had been worrying and fretting in my mind about things I cannot change. I read the words, 'In God We Trust,' and had to laugh. Yes, God, I get the message.
It seems that I have been finding an inordinate number of pennies in the last few months, but then, pennies are plentiful! And, God is patient.
That's the whole gospel message simply stated.
At this point, its between God & Seth. We are spending as much time with him as we can and LOVING on him like crazy. The doctors can't say if we'll have a few more days or weeks. I KNOW that our Saviour can give us years.. And we would happily take them but not at the expense of Seth's suffering.
If you're reading this, I"m asking you to continue praying for a miracle of healing for Seth. I know many of you have never stopped but I wanted you to hear from me that WE are still praying for and believing for that as well. We've just changed the circumstances under which we will let interventional medicine help! Thank you for loving & supporting our family.
Please continue to pray for my friends Kathryn and Leland and their six-month old son, Seth. They got very bad news today that the neurologist doesn't feel Seth is going to be able to live on his own and the family has decided to let him go without extraordinary measures. His health is failing and know one knows for sure how long he will live. It's such a devastating situation for this family and all who know them. Please continue to pray for them as they go through this terribly painful process of giving their baby back to God.
I apologize for not sending out an update after yesterday's neuro consult.. I'm feeling rather drained today and so I"m doing tonight's update in bullet format just to get it done.
- Tuesday, the neurologist said that he's not seeing further signs of damage to Seth's brain. While he still states we're looking at moderate to severe, he believes that we can say Seth has "stabilized" neurologically.
- Tuesday Seth was taken off c-pap and put on a nasal cannula (little prongs in his nose, oxygen tubing around his little sweet face).
- Today, Seth's last chest tube was pulled.
- Because the chest tube was out, I GOT TO HOLD SETH!! YIPPEE, YAY!!
- Seth is still showing "clonus" (stiffening of and tremors in his limbs). The neurologists are starting him on a medication to try and control that.
- Seth continues to run a fever intermittently. No apparent sign of infection. May be "neurologically induced".
- Seth occasionally has a "bradycardia" (sp??) this means that periodically his heart rate dips very low. (should be 120 - 140, sometimes runs in the 90s with dips as low as the 70s). The cardiologist thinks this is "vegal nerve stimulation" and it is "self-limiting".
- Physical therapy & occupational therapy have been working with Seth. He's tolerating it well.
- Feeds are being re-introduced (on portagen due to a possible chyle thorax, AGAIN (leaking of the lymphatic system)). (through Seth's g-tube)
- Seth is coughing better (still weak but coughing) but still not showing gag reflex. Currently on an IV med to reduce oral and lung secretions.
We have another care conference on Thursday. I have no idea when we might be bringing him home.The big kids are all holding their own.. as are Leland and I. I know that's a lot of specifics..
Like I said earlier, these emails help me process info as well as share it and sometimes I just need to spew it all out there and look at it for a bit myself..
And, with those specifics, you can offer up specific prayers!
As of our last check in (via phone), Seth's heart rate was in the 120s (he was sleeping so that's where it should be) and he seemed comfortable. The neuro should be doing a clinical assessment again tomorrow so we'll see how things go from here.
We continue to put one foot in front of the other with the help of our Lord, often seen through the support of all of you!!
Seth is still intubated and being kept fairly sedated. The nurses made it a priority to let me hold him today (around all his tubes, it was quite an adventure!). He's still fighting a fever that comes & goes (no known signs of infection otherwise). As a bright spot to our day, the neurologist did apparently say (I was out of the room) that he thought Seth was a bit more reactive today. (Not that his parents can tell!).
We have a "care conference" tomorrow which is basically ameeting just to make sure we're all the same page. I'll probably send out a "newsy" update after that even if it's just re-capping (honestly, these updates help ME process things as much as keeping all of you informed!). Thank you so much for your continued prayers and support.
"So we keep our eyes on God until He shows us his mercy" (from Psalm 123:2)
Okay, the suck-y part is I don't feel like we REALLY know anymore than we did earlier today (and I'll get to the details in a moment). The overwhelming POSITIVE part? Our God is SO big and he doesn't need "wiggle" room but really, the neurologists leave a GREAT BIG HOLE open for our Saviour to walk through with a miracle! That's what we're praying for and asking you to join us in.
Seth's 2nd MRI did show more "damage" then the first MRI. The neurologist seems to feel that at this point Seth would fall somewhere in the Moderate to Severe disability range (Severe being needing TOTAL assistance). He is seeing some clinical signs that could indicate brain stem damage but nothing definitive on MRI (although he states that the brain stem is a hard area to image). At this point we are in a "wait & see" mode (again.. some more.. still). Seth's brain could continue to deteriorate over the next week or so. Without a new incident, we would need 1- 2 weeks to know that he's stabilized as far as progression of possible brain damage. (The code was last Wed so we're a week out.. One more week).
We DO know that the brain is a miraculous amazing thing created by our Lord. HE can heal it even if the doctors don't believe that can happen. Please pray for no further progression and even for improvement, only the Lord can do THAT!
When Seth was dedicated at our church a few weeks ago, our lead pastor read a verse for him. From 1 Timothy 1:12, "I thank Christ Jesus our Lord, who has given me strength, that he considered me faithful, appointing me to his service." This side of Heaven, we can't know how many lives Seth has already touched but he's only 6 months old. I would imagine God has a lot more in mind for Seth's service to Him! I'm anxious to see that unfold.
At this point the neurologist is very concerned about deep brain damage, possible brain stem involvement. Seth had a repeat MRI done but we haven't heard results yet.
PLEASE keep praying. I'll update later.. Also, if you attempt to call, please do not be offended if we don't answer. We're doing what we can here. Thank you!
All in all, *I* feel pretty optimistic! We were warned that neurology would paint a "bleak" picture and while, as I told Leland, it wasn't all "sunshine & rainbows" none of what the neurologist told us was much different than what we'd already been told by other drs. AND God is so much bigger than the neuro and these MRI results. It it TOTALLY in Seth's favor that' he's young as he is and we'll just pray him through this and do what we can to help!
He's still on Cpap and right now that's our biggest hurdle, getting him breathing on his own. And he's been fighting a fever over today with a bit of an accelerated heart rate.. Those things could be specifically prayed for as well. Thank you for holding us up!
Today was an "easier" day than yesterday and then I expected and I KNOW that's due to God's faithfulness and love, and His love as shown through all of you to us!!!!
The doctors are VERY concerned about Seth's neurological condition. The neurologist examined him this morning (Leland & I were not there because we were all at church). They ordered an EEG which they are letting run a LONG time (basically, until the leads start falling off his head).
It's all very confusing to Leland and I as Seth seems to be exhibiting withdrawal like symptoms but the nurses and doc think he might be having seizures, etc. One of the ped icu docs today was NOT very encouraging (at all).
Today is Leland's birthday. As we didn't go shopping, Cary cobbled together a present for his dad from stuff he owns. One of the items was a "prayer box" that he made several years ago at a VBS. Leland handed it to me and said "read the bottom".
"Be joyful in hope, patient in affliction, faithful in prayer" (i think it's Romans 12:12). Our God is so faithful to encourage us with that now and we're clinging to that and praying for Seth.
Thank you for holding us up in this difficult time. (I"ll send an update tomorrow and hope to have better news.. or at least EEG results).
He also had a brain MRI. That did show some damage from lack of oxygen, most likely occurred during the events of Wed. night. He also is not quite himself. Leland & I had assumed that was due to the sedation he's still on but the ped intensivist seems to think that's indicative of neurological function. We're told it will just take time to see what exactly is going on.. We KNOW that time & PRAYERS can take care of all of it.
We're feeling very blessed today as he really is doing MUCH better! (What a difference a mere 36 hrs can make.) We're praising God for keeping Seth in His care!
Seth recovered quickly from last night's code... much quicker than his parents apparently!
It was a calm day, as of 9:30pm, Seth was doing well with the decreased vent settings.
I want to say how appreciative I am of the prayers, words of support, etc that we've recieved over the last while but especially the last 24 hours. From church family to hospital staff, everyone has been extremely supportive and we are grateful!
Today was a rough day in that there was some miscommunication regarding iv/pic lines, Seth had a line placed (in a spot that he should not have had one, due to his recent surgery, but no damage done) and it blew.
But all that was nothing compared to tonight when he coded. Apparently, he had a blockage in his breathing tube and it caused his sats to drop, heart rate plummeted, etc. The staff at PICU performed CPR, called Leland & I, etc. As I mentioned above, he's currently stable.
The next "hurdle" is gaining a decent line for iv access (he currently has a couple of small iv lines). He's a pretty sick boy right now.
We're praying for rapid improvement. Thank YOU to all of you who have been praying with us so faithfully.
So when we last left you.. they were trying to get a new PIC line in Seth so they could remove his central line in his neck (they do NOT want a clot in one of those upper extremity areas, that blood needs to be able to travel to his lungs). That was unsuccessful. The end decision was to put him on heparin to avoid a blood clot in that central line. They were hoping to avoid peripheral lines (regular ivs) due to the amount of meds, etc he's taking in and the shape of his veins.
So I called up this am to see how his night went. Overall, it went well. However, that central line they were trying to get out yesterday and ended up leaving in? Yeah, it started to leak. Now, according to his nurse Jake he's "an IV junkyard". Seth has an IV in both hands and feet. Please pray for those to hold up and do the job. For Seth's lungs & respiration to be well enough for him to get off the ventilator SOON (today would be good!). For his doctors & nurses and peace for our family.
Thanks again for all your support. We couldn't do it without God and those of you loving us in His name sure help us to feel His presence! Thanks SO much!
Everyone at our house seems to be feeling better (Praise, GOD!). Sean & Cary went to school today. Kayleigh informed me "I no spit up today mom". I feel better. So we're on the upswing there.
Seth is still taking things slowly. They worked on weaning a bit last night but didn't get very far. This am, they tried to pull chest tubes and put in bulb syringes. They couldn't get one to seal and in the process he developed some pleural effusions and one of his lungs collapsed a bit (the left I think).. they ended up putting the chest tubes back in. Currently, they want to pull the central line in his neck as it comes close to a suture line internally. They're trying to put in a pic line, we've been here since 11 am and have barely had a chance to even see Seth..
The cardiologist says he feels like Seth is doing well so we're just following Seths' lead on his getting better..
Thank you for your prayers and support!
They got him on cpap today (on the vent but he was doing most of the work) and after a bit his blood gases were bad and they had to increase vent settings..
I didn't make it to the hospital today at all due to being sick but am hoping tomorrow is a better day all the way around.
Thank you for lifting up our family!
When they shut off the breathing tube to see how he'd do, his sats dropped, etc. The plan was to wean vent. settings down overnight for extubation. However, he had lots of secretions and junk in his lungs. That was suctioned out, sent for culture, they put him on a couple antibiotics. He slept fairly restfully according to his nurse and today we'll try again!
Please keep praying for his healing and for the doctors.
On the homefront, Cary is better and mom's still gargling with salt water (says she feels more or less the same).
Currently, they've changed him to a short acting sedative while they turn off the others,remove his breathing tube and wake him up. They have his arms in restraints so he can't pull out, well, anything (and he has lots of options!) Please keep praying for his healing. I hate the idea of him coming out of this sedative and being uncomfortable and in lots of pain, he's so little...
ALso, Cary was throwing up all night (from about 3:45 am till after 8am). and my mom feels a cold coming on. Please pray for health at our household. thanks!
Sean & Cary (esp Cary) are having a hard time today, it was a special lunch at school and I went to lunch with them. Cary did NOT want me to leave. Please continue to lift up our family as you feel led. We are SO grateful for your prayers and support.
Apparently, when they closed after the first surgery earlier today, a sternum wire nicked an artery. This artery was also directly above the right chest tube so it wasn't clotting because the chest tube was irritating it. He's back in his room. Stable. Sats are in the 77-82 range (good) and he looks even better than he did post op the first time. Leland & I will head home in a little while (as it's already after 10 and we've been here since just after 6 this am!).
Tomorrow's a new day and another step on Seth's road to recovery!!
They're doing some blood work and watching him for an hour but it's sounding like the surgeon may have to take him back downstairs.. Please keep praying.
This is the 2nd of the 3 staged surgeries for his heart defect. Surgery went well. We haven't seen him yet but he IS in his room in the PICU. We have a nurse we're familiar with (and like) from our first stay.
His sats have been up & down and apparently he's running a fever. Please pray for his recovery. We would like to see his sats stabilize and we expect to see some swelling but would like it if that dissipated quickly. PLease pray his heart/lungs/body adjust well to the new blood flow and pressures created during this surgery!
Since I started to type this, Seth has been moved to his room (310 PICU SHMC). He's doing pretty good, running a bit of a fever. Has had some bleeding from his chest tubes and they're closely watching it to be sure they don't have to take him back down to surgery to search for a clot..
My mom is staying at our house (THANKS MOM) with our big kids. Thanks to all of you for your prayers.
We do have a sat monitor. It's just a little hand held one. We actually took it up to the hospital yesterday and had him on both ours & theirs for awhile.. That increased my confidence in bringing him home! He's satting higher on the o2 (like high 80s) but still seems pretty fatigued..
His second surgery WAS moved up. Originally we had been told August and he was doing so well, they bumped us to Sept. We had tentatively scheduled for 9/23 but that's been changed to Sept. 11. We'll be pre-admitted on 9/10. Recovery is expected to be 7-10 days.
Thank you all for your prayers for our family!
He had a rough day today. Coming off the sedation was hard for little Seth, he wasn't really himself and his O2 sats have been much lower than usual. Currently he's on a nasal cannula with a "whiff" of oxygen. We're praying for GREAT improvement by tomorrow. If he continues to struggle with his sats, his next surgery will be moved up...
I'll post tomorrow as I hear more.
Seth is doing amazingly well. He's now on Nutramigen (the plus about infrequent updates is you all missed the whole no breastmilk saga, lucky you guys!
Today he's having a heart cath done. He was pre admitted last night and they're doing the procedure right now. So far we know he has "coarctation of the aorta" (narrowing) and the cardiologist is going to attempt to balloon and dilate that.
We're praying & confident it wll go well. We hope to be home later today or tomorrow.Thank you SO much for continuing tolift up our family in prayer.