Monday, November 28, 2011

8 Months Old


8 Months Old -- 9 months old next week

Where has the time gone…Seton is almost 9 months old.  So much has happened since our last update.

First Weekend without Daddy 
Zane went on the Men’s Retreat at church so we had our first weekend without Daddy. Zane’s mom came in town to help me watch Seton at night. We are still not at the point where we feel comfortable leaving him alone in his room all night.

Baby Dedication
The next weekend, we had his baby dedication at church. That was a great day. Our entire family and many friends were with us on this big day. After church, all 40 of us went to eat lunch at Pescaraz Italian Restaurant. This was a big milestone in Seton’s life; he has not had many milestones that normal/ healthy babies hit. This was a day that in the back of my mind I was not sure would ever happen. Seton was on his best behavior in front of the entire church and slept through the sermon and all through lunch.
Here are some pictures from that day…




Halloween
Every year my parents church, Southwest Church of Christ, has a ‘Trunk or Treat’ around Halloween. It was nice outside this year so we dressed Seton up in his Sock Monkey costume and headed out for Seton’s first Halloween. We met my parents, my sister and her kids there. I think my parents really enjoyed having all their grandkids there. Seton of course can not have any treats, so I got a few for myself so that Seton could enjoy some sweet milk the next few days. J Seton got to meet several people that have been praying for him. Here are a few pictures of the cutest Sock Monkey in the WORLD!




First weekend without Mommy
I was able to take a trip with some dear friends of mine for the weekend. I set up for my parents and some of our home health nurses to be here more to help Zane watch Seton while I was gone. There was no way I would have gone if I was going to have to come back to an exhausted husband and baby. It was definitely hard for me to leave but I had a good time once we got out of town. The girls I traveled with put up with me and my need to pump every 4 hours, always being hungry and ready for our next meal, my driving, and not needing much sleep. Thanks Ladies for putting up with me! I had a great time but it will be a while before I will be able to leave my boys again. 

Doctor Appointment
Seton had an appointment with Dr. Habersang the week before Thanksgiving. He weighed 16lbs. 15.2 oz. and is 26.5 in tall. The best news we got that day was that Seton no longer needs his oxygen…during the day or at night!! He is gaining weight and growing so we also get to stop supplementing his breast milk with prosobee (a sensitive stomach formula to increase the calories of breast milk).  The appointment was full of good news.


We have so much to be thankful for…
Every Thanksgiving morning since I was little I have gotten up to watch Macy’s Thanksgiving Day Parade.  So last year when I was pregnant, we sat as a family, and watched it in our pajamas. So this year we did the same, Seton sat in my lap and we all sat on the couch to watch the parade then as soon as Santa came down the street we loaded up and headed to my parents’ house. We spent the rest of Thanksgiving Day with my parents’. We had a traditional Thanksgiving dinner with a big turkey and all the trimmings; watched Football all afternoon. Friday we did not get up with all the dedicated shoppers…we had Thanksgiving in Dumas at Zane’s aunt & uncle’s house, where we stuffed ourselves with Mexican food! This was Seton’s first trip to Dumas and he did great! I think he really enjoys being in the car and looking out the window (just like I did as a little girl). Then, Friday night we had dinner with Zane’s Dad and Sister, no one wanted to cook so we went out to eat steaks.

I can pout with the best of them...


He got tired of waiting on everyone to finish eating...so He took a nap

Knock on wood…Seton has started his own tradition… Sleeping. Through. The. Night! Maybe it is just the turkey, but I think that this will continue and all of our family will begin to get more sleep.

Looking forward to Christmas
We put the lights up outside (bright red bulbs, Seton’s favorite color) and decorated the inside of the house too. I love Christmas and decorating for it! Zane told me the theme for this year is moderation…So I only decorated the main living area and the guest bathroom. So far Seton loves sitting under the trees (I put up 3 small trees) and looking up at the lights.

He is getting so big and changing so much so I will leave you with a few current pictures… 

Daddy take my picture!! My hair is finally long enough for a faux hawk


 25"These things I have spoken to you while I am still with you. 26But the Helper, the Holy Spirit, whom the Father will send in my name, he will teach you all things and bring to your remembrance all that I have said to you. 27 Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. John 14:25-27 (ESV) 

Thursday, October 13, 2011

It has been too long…

It has been too long…

Five weeks to be exact since our last update. So here it is.


This last Sunday, Seton turned 7 months old…7 months! Zane described it as the longest yet quickest 7 months of his life. Seton is doing great! Since our last update we have been to two post-op appointments, went on our FIRST family vacation, introduced Seton to several friends and family members, and passed his 6th and 7th month birthdays.

Two weeks after surgery, we went in for his post-op check up with Dr. Nirgiotis. Seton was healing well other than his g-tube leaking more than normal. Dr. Nirgiotis decided to take it out and put in his permanent g-button (4-6 weeks early). Changing the g-tube for the g-button was painful for Seton, but after we got home, he was much better. He has progressed everyday. He is healing nicely and is not in any pain from his surgery.

Later that week we went to see Dr. Habersang for a post-op and 6-month check up. He said Seton looks great and the surgery and recovery has gone so much better than he thought it would. Since Seton is doing so well, Dr. H does not want to see him again for 2 months. He also decreased his breathing treatments and discontinued 2 of his medications (iron supplement and zantac). Here are a couple of 6-month pictures

6 Months Old

Tired of taking pictures
Seton meets Colton (Born to be buds, since our Daddy's are best buds)

" Mom, I am trying to take a nap"

Our Family vacation was great! Seton did amazing in the mountains - he loves the cool, moist mountain air just like his momma! We had a weekend full of FIRSTS for Seton. First mountain, first waterfall, first rainbow, first restaurant, first dirty diaper in the car (man that was fun), first lake, first car show, first shopping trip, first wild animals (we actually had a chipmunk come into the cabin while we were in the living room), and you see my point. While we were shopping in Creede, CO we had a lady walk up to Seton and ask me if he was a real baby…hahaha. No I just like to push this massive stroller around with my baby doll.  Here are a few of our favorite pictures from the trip.
Famliy Road Trip Transportation
Looking out the window on the way to the mountians
In Front of the Waterfall
It was very cold by the lake

 
 
 
Seton now weighs 14lbs 4.5 oz. and is over 25 in. long. He is out growing all his clothes in the length, just like his daddy. He is in 6-9 month clothes for the length but some of his 0-3 onesies still fit…someone should make Small & Tall Baby Clothes. J



Just for comparison
 
1 month old
 
7 months old

 
 
7 Month Old Pictures 


Here are a few fall pictures with Seton and his cousins




Overall Seton is doing really well. We are working on feeding therapy with a speech therapist, and he also has an Occupational Therapist to help him with holding his head up and using his hands.  We go back to see Dr. H in November. We are looking towards our next steps with Seton and his progess.

~Shawna

You will not need to fight in this battle. Stand firm, hold your position, and see the salvation of the LORD on your behalf, O Judah and Jerusalem. “Do not be afraid and do not be dismayed. Tomorrow go out against them, and the LORD will be with you.”
2 Chronicles 20:17 ESV


Thought I would leave you with some toes!

Thursday, September 1, 2011

Success

Success

I am sorry for the lack of updates…we have been home for a week now.
The surgery was a success. He did so much better than the doctors expected…as always Seton proves his doctors wrong. I think he enjoys it. Seton was released from the hospital on Thursday (8/25/11) morning…3 days earlier than expected. He did not need any of his pain medicine after Tuesday evening. We are now 10 days after surgery. He was doing great last week. His main incision looks great and is healing well. He gained 5.5 oz. in the hospital after they expected him to lose weight. He currently weighs 11 lbs. 6.5oz.

The past few days he has been in a lot of pain. The spot where his tube enters his stomach is causing the pain. Every time we move him or change his diaper he screams, you hear a very loud heart breaking scream! The only pain medicine we can give him is Tylenol every 4 -6 hours, which does not seem to help him when he is really hurting. We will go back to see Dr. Nirgiotis and Dr. Habersang next week, and at that point I think we will know when they will place his permanent g button. When he gets his permanent button the pain he has now should not be a problem.  I was going to post pictures of his incisions but decided not everyone would want to see them.

So here is a picture of him before the surgery, in the waiting room.


In his cute yellow hospital gown before surgery

After surgery resting in mommy’s arms


Hanging out in his bed Monday after surgery

Tuesday after surgery feeling much better

Getting ready to go home from the hospital on Thursday

Today, asleep and comfortable at the moment

And the last picture taken Sunday night before his surgery. 

As I sit here today watching my sweet boy sleep, I am reminded of the beginning of Seton’s journey into this world. The very scary days of our past, back in February when we found out something was wrong. The joyful days of last summer, letting our family know we were expecting baby. The happy and sad, comforted and frightened days of March after Seton, was born. Now the surgery he had last Monday, it was a large step in Seton’s journey. Only God knows the future steps he will take.

Today I am still unpacking and washing gifts from my baby shower, partly because he could not use them yet…others because I was afraid of the memories…if God was to take Seton home. Seton continues to progress and for that I am thankful.

I will try to post more often. I can not promise that I will post daily but I can try to post more pictures of his activities especially when he starts therapy again, and starts doing more.

Shawna

"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 1:11

"So we don't look at the troubles we can see right now, rather we look forward to what we have not yet seen. For the troubles we can see will soon be over, but the joys to come will last forever." 2 Corinthians 4:18

Wednesday, August 17, 2011

Last Tuesday we celebrated Seton's 5 month birthday.  It has been one incredible journey in that time, but we're very thankful for every day of it.  He is a blessing to us and a blessing to so many others.  Thank you for sharing in this time with us.

Seton's G-tube surgery is scheduled for Monday, August 22nd.  We are praying for a successful surgery with a quick and complete recovery.  We would appreciate your prayers also.  I will do my best to update you all when he's out of surgery and we get settled in for our hospital stay.

Zane

Thursday, August 4, 2011

I’ve dropped the ball again on our updates.  It isn’t unimportant to us, because we’re so glad to have you all involved and supporting us.  It’s just a matter of time and energy.  The blog is always on the list, but most days the list doesn’t get completed.  So there’s my ongoing apology.

Seton’s swallow study did not go as we hoped.  He was given glucose water with some barium in it, and delivery was attempted with several different types of nipples without success.  He just wasn’t very interested in “nursing” at that time.  They tried injecting some of the solution directly in his mouth, but he mainly played with it with his tongue and swallowed almost none of it.

That led us to Seton’s appointment with Dr. Habersang last Friday.  Seton has been having lots of irritation, and therefore lots of blood, associated with his tube recently.  If nothing else, it’s been challenging to watch.  The general consensus is that we have gone about as far as we’re able to with the NG feeding tube.  Dr. Habersang feels like Seton’s growth, progression, and size now merit the G-tube surgery.  Although it bears a considerable amount of risk with all factors, upon recovery it should improve his overall quality of life and make things simpler on everyone.  99% of our hospital/ER visits should be eliminated, and he will become much more mobile.  We hope the new ability for increased social interaction will aid in his development.

The surgery is a pretty big deal for us, and we are fairly apprehensive about it.  It will require us to be in the hospital for at least a week, and will also entail a 6+ week period of healing and recuperation afterward.  We’d really appreciate all of your thoughts and prayers toward a safe and successful surgery, as well as a quick and complete recovery.  I promise I will do a better job of updating with important details…the first being the surgery date, as soon as it’s scheduled.

Zane

 1 I lift up my eyes to the mountains, where does my help come from? 2 My help comes from the LORD, the Maker of heaven and earth. 3 He will not let your foot slip, he who watches over you will not slumber; 4 indeed, he who watches over Israel will neither slumber nor sleep. 5 The LORD watches over you, the LORD is your shade at your right hand; 6 the sun will not harm you by day, nor the moon by night. 7 The LORD will keep you from all harm, he will watch over your life; 8 the LORD will watch over your coming and going both now and forevermore. – Psalm 121

Wednesday, July 13, 2011

I know it’s been awfully quiet on our blog the last few weeks.  We’re sorry for leaving you all hanging without much in the way of updates.  We get questions and requests frequently, so we know it’s important and appreciated. We’ve been very tired and super busy in that time, and this is one area which suffered.  We’ll try to make up for it with some extra pictures J

Since I last wrote, we’ve had no lack of notables.  We’ll start with the good things today.

My first Father’s Day - it’s still somewhat of a foreign concept to me.  I’m not really sure why, but I haven’t felt like a “father” yet.  Nonetheless, here are a few things I’ve gathered about fatherhood in my short time as such.  It is hard.  Man, is it hard.  Being a father tries to bring worry, struggle, anxiety, and fear.  On the other hand, it gives a love not known before, grace and patience not understood before, and perseverance not attainable before.  I’m blessed to be a father, and I’m blessed to have a wonderful wife and a wonderful son who take me as I am, knowing I’m a work in progress.  Here’s a picture of Seton and me on Father’s Day:



As Shawna mentioned in our last post, Heather Ladd took some pictures for Seton’s 3-month birthday.  They (of course) turned out wonderfully.  Here are a couple of our favorites:





Shawna will start the recap of where our new adventure began:

The past weeks have been exhausting for all 3 of us and our family. Sunday night (June 26th) is when it all started. Seton did not want to sleep at night or take naps during the day. Wednesday afternoon (June 29th), after several days of no sleep, he began having some “episodes.” I was alone with him for the first one and really did not think much about it. It was nothing like the seizures you see in movies. I picked him up from his swing in the living room and his right arm went completely stiff, after realizing that he did not seem to be in control I noticed he was not breathing and his lips were blue. The entire episode only lasted about 20 – 30 seconds. He screamed and returned to normal. Almost an hour and a half later it happened again. This time our nurse was the only one watching him. I was about to leave and take Zane some ice cream at work when I heard Seton scream and our nurse yell “Shawna” from the living room. I ran to the living room and picked up my phone and call Dr. Habersang’s office. Then I called Zane, I told him he would not be getting any ice cream and told him what happened. While waiting on the nurse to call me back I went to hold Seton. He had another episode while I was on the phone with Dr. Habersang’s nurse, so I passed him off to our nurse and got further instructions. Dr. Habersang told us we needed to go to the hospital, and he would send over orders to have Seton admitted and checked for dehydration. I quickly packed Seton’s diaper bag and all the things we might need at the hospital. Seton had two more episodes before we left for the hospital. Being a nervous and worried mother, I did not listen to the instructions on where to go when we get to the hospital…admitting or ER? We have been to both so many times. So I chose admitting first and she made a couple quick phone calls to see where we needed to be. She sent us to the ER and let them know we were coming in. When we got in the ER, they took us straight to a room where several people were all doing something different. I really did not watch them or answer any questions I just stood there staring at my baby boy, waiting for the next one to occur…which did not happen. Dr. Habersang came in shortly after we arrived and he took us straight up to Pedi ICU where he had another team of nurses waiting for us. That is when the next and last episode occurred. There were 2 nurses in his room with Zane and me at the time. This was the first one Zane had seen, and of course Dr. Habersang had just left.  I will let Zane pick it up from here and continue with his eloquent writing.  ~Shawna

Once the nurses got Seton’s IV started and got us all situated, they called for an EEG to monitor Seton’s brain activity to determine and verify his seizure activity.  The process took about an hour, and it gave us a mildly entertaining picture in an otherwise stressful situation.



As we were winding down in our quaint PICU room, Shawna walked down the hallway to change for bed, and Seton’s nose needed some suction attention.  I took care of things with the suction monster (as we call it now), and noticed it was much easier than usual.  Well, that’s because I looked down to see his feeding tube slithering around at my feet, like a tiny snake, spurting milk from the end.  I’ve learned this is not a great start to a night where I’d like to sleep.  Little did we know that over our two and a half days in PICU Seton would get 4 new feeding tubes and another two times in which they came out partially and had to be pushed back.  It was beyond horrible.  There was no clear reason for how and why the tubes were coming out so frequently and so easily.  His tape and everything else was still intact and in place.  Maybe it *is* time to consider some Gorilla Glue or even a stapler.

Our hospital stay allowed his doctor to determine his seizures were “normal” seizures instead of atypical seizures, so Seton is now taking Phenobarbital to limit and control future seizure activity.  They monitored him for about 24-hours before sending him home, and to this day, so-far-so-good.

Saturday, July 9th, was Seton’s 4-month birthday.  He had a nice and quiet day…and then Sunday came.  Early Sunday morning, Seton began spitting up blood again.  This is thanks to the plethora of feeding tubes gorging his insides as they come in and out.  By 10 am, he had spit up nearly 100 cc of blood (which is a lot), and the on-call doctor suggested we pay a visit to our home away from home, the ER.  After our usual 6-hour stint in the ER, he was again admitted to Pediatrics.  They were concerned about his hemoglobin levels from the volume of blood that was lost and wanted to monitor him and recheck his lab work periodically.  After another overnight stay at Le Chateau BSA and the most-comfortable wooden recliner bed, they had enough blood work to be comfortable releasing us.  Dr. Habersang said Seton’s iron levels were a little bit low, so they are doing some supplementation.  He also ordered the swallow study which is now scheduled for July 20th in hopes to get this tube out of Seton and alleviate a significant portion of his (and our) problem.  Please pray very specifically for us here.  We need Seton to be able to swallow and feed normally.  This would eliminate 99% of our current hospital visits and the pain/trauma associated with them.

Here's a 4th of July picture just for good measure:



There are many days that Shawna and I are simply beside ourselves with this situation.  We’ve continued to improve in our day-to-day routines and have some semblance of our previous life, but when these snafus hit us, it shakes us to our core again and again.  I postulate that fact might not change.  Irregardless ( J ), we are going to make it.  I don’t understand how sometimes, but I know it to be the truth.  One foot in front of the other.  Lather, rinse, repeat.

Zane

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is work within us."  Ephesians 3:20

Saturday, June 18, 2011

Seton is now 14 weeks old. As for an update…not much has changed. Seton started wearing Size 1 diapers this week. His current feeding tube has been in for 13 days and we are hoping to break the current record of 21 days.

We had an appointment with Dr. Habersang today. Seton now weighs 8lbs 13oz. and is 22.5in long. Seton is doing really well with swallowing, so Dr. Habersang’s office is going to schedule a swallow study within the next 30 days.
   
We have been working on a sleep schedule for Seton. This is a challenge! It has been a struggle for all of us not to hold him all night. We hope by getting him to sleep for longer periods of time in his bed so we won’t need as much help from our family, who graciously comes over night after night to watch our sweet boy – allowing us to get some rest. Our nurses are helping us out also by allowing Seton to get mad at them when they keep him up throughout the day.

Heather Ladd (http://heatherladdphotography.com) came over this week to take 3 month pictures of Seton. Heather truly is an amazing photographer, and we are very excited to see the outcome. We will definitely share them with all of you. Heather also took our maternity pictures that we posted earlier. She did a wonderful job with those, and I know Seton’s pictures will be great also.

Seton’s hands are starting to open up a little bit, and he seems to have a little bit more control of his fingers. He will have his first visit from an Occupational Therapist next week to start working on his hands and fine motor skills. He continues to see his Speech Therapist every week and is making progress in that department also.  We take each small step in healing as it comes and believe for a miracle.

Thank you all for your support and prayers. It means so much to be surrounded by so many wonderful people that are willing to help.

- Shawna

I have set the LORD always before me. Because he is at my right hand, I will not be shaken. Psalm 16:8

Wednesday, June 8, 2011

Seton – when we both wake tomorrow morning, you will be 3 months old.  I wasn’t sure this day would come, but it is upon us, and I’m incredibly grateful.  You fill a new place in my heart everyday.  I get excited about walking in the door each morning and each afternoon to see you and rub your little head.  It’s such a joy.  Such a strong boy and such an awesome buddy.  Your mom joked this week about not knowing anyone else who gets to celebrate a birthday each passing week.  I love that we get to share that with you.  I can’t wait for next month to write you again.  We love you.


Seton has not had a doctor’s appointment in a few weeks now, so there hasn’t been too much to report.  He’s gotten over his congestion and crud the lovely Amarillo weather brings us all in the spring.  His breathing and swallowing are both improved and much more manageable for him and us.  As long as things continue, we’ll look forward to his swallow study at some point next month.  By our crude home methods, he is weighing about 8 pounds 10 ounces, and his little legs, arms, and chin are getting chunkier by the week.

After 12 days of his feeding tube being in, we had a little mishap last Friday and made our all-too-familiar pilgrimage to BSA Radiology to visit our friends for a new tube.  While we were there, Shawna and I realized our visits may not be so inadvertent.  Seton has those nice ladies wrapped around his tiny, crooked fingers and is quite the flirt with them.  We like to start ‘em young in the Oliver clan.

Pain is an interesting emotion – capable of withering every good thing set before a person.  The minority in number but the majority in control.  When we stir each morning, it stands at the foot of our bed stalking us.  I’ve let it occupy far too much of my life recently.  It is an overpowering thought and emotion most of the time, but I think we have finally come to point in our expedition where we truly want God’s will for our situation.  It means that we have faced, acknowledged and discussed if Seton does not continue life with us, it is for the good of us all.

There isn’t a week that goes by without an unknown person stopping me to ask if I’m Seton’s daddy; always proceeded by the story of how they found us and how they’re praying for us.  It would be nearly impossible for us to say that someone isn’t guiding our way and our surroundings as we move down the path.  Although many days are deeply difficult, we continue to be blessed and uplifted by so many.  Thank you and bless you.

We’re standing – believing that God is capable and sovereign, and taking every drop of grace and mercy to wait as patiently as we know how.

Zane

“I remain confident of this; I will see the goodness of the Lord in the land of the living.  Wait for the Lord, be strong and take heart, and wait for the Lord.” Psalm 27:13-14

Wednesday, May 25, 2011

We’ll keep things pretty brief tonight.  Seton is 11 weeks old today.  Thank you, Lord.

We were supposed to visit Dr. Habersang on Monday, but toward the end of last week, Seton’s congestion really seemed to be bothering him.  He was pretty fussy and appeared uncomfortable, so we paid a “sick” visit last Friday instead.  Other than sharing the same crud Shawna and I have had twice this month, his visit went pretty well.  He weighed 7 pounds 7.3 ounces and measured 22 inches.  His progress there is good, and we are continuing to increase his food intake slowly to accommodate the growth.  Even with the congestion, Seton’s oxygen saturation levels were good, and he is off his oxygen machine during the day.  Everyone breathes a little shallower at night, so it goes back on during that time.  His swallowing has slowed down a bit the past week or two with the added congestion, so Dr. Habersang is tentatively projecting July for the swallow study.  We were hoping for an opportunity sooner than that, but like nearly everything else in life, we aren’t in control, so we’ll put a smile on our faces and wait for July J

Monday morning Seton had a sneezing fit and out came his tube.  That is a record time of 21 days (even though it clogged three times during).  We sure won’t complain about that and hope the new one stays even longer.

There’s no real update for Shawna and me.  It’s been an extra tough week or two, and I’m really blessed to have a couple of good friends hear me out and go the extra way to encourage me.  So blessed.  We are doing our best to take each day as it comes and remember our hopes.  We’d appreciate your prayers for physical and emotional rest and for a renewed grace to face the difficult days.  Seton would appreciate your prayers for development, strength, and health.

Zane

(I need two this week)

“It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

“See, I am the Lord, the God of all flesh; is anything too hard for me?” Jeremiah 32:27

Wednesday, May 18, 2011

Today eclipses the ten-week mark for Seton Blaine.  For the past couple of weeks, Seton has made marked improvements in his growth and swallowing.  Late last week he decided to take a step backward.  He became fairly congested, and his breathing became more labored.  Some days this week he has done better and some worse, so we will continue to monitor until we meet with Dr. Habersang again next week. Using a borrowed scale, Shawna has roughly measured his weight at 7 pounds 11 ounces, and he is more than 22 inches tall.  Does anyone else find irony in referring to someone who has yet to stand as “tall?”  I ponder.

We received a call this week about Seton’s application for the Medically Dependent Children’s Program (MDCP), and he has been approved for assistance.  This will help greatly with his home health care needs and medical situation.  We are sincerely thankful for this, especially considering his coverage under private insurance ended last week.  It is one more burden removed from us.  In order to complete this process, a nursing home stay is required to further assess his level of necessary care.  The only facility we were able to use for this is in Hereford, so we loaded up all his equipment and things and made the voyage last night.  The stay requires two days, so we checked in at 10:30 pm and left about 12:30 am.  Yay, for red tape.  Our first family vacation on the books.  We commemorated the event by purchasing Blizzards from Dairy Queen.  What can I say?  I like to travel in style.

It is pretty safe to say we are out of crisis mode and into living the reality of our life.  It’s really a big thought.  Somehow I fooled myself into thinking it would be better or easier than it is most days.  How many days can you put that smile on your face and say all the positive things others like hearing?  It’s assuredly finite.  Then I realize how much of this circumstance I’m trying to carry on my own.  I’m frustrated with myself because I keep fighting for control of a situation that is absolutely uncontrollable – a glaring character flaw.  I’m stricken with guilt and selfishness for ignoring so many positive accomplishments and milestones; waking only to focus on the difficulty and struggles.

I know God’s got it.  From beginning to end, He’s got it.  I’m reminding myself through this right now that all I have to do is trust and believe in Him and renew my mind and my strength with His promises.  Promises of good and not evil.  Promises of a hope and future.  Our family and friends still rally around us, even though the “excitement” has worn thin and time moves on.  Thanks to you all.  Please continue prayers for Seton’s brain to fully develop and for the patience and grace we need as we wait and walk.

Zane

“Let us hold unswervingly to the hope we profess, for he who promised is faithful.”  Hebrews 10:23

Friday, May 13, 2011

I will start by saying I am not the gifted writer that Zane is, and I am not funny either. I have not written on our blog since the first post, exactly 3 months ago! Three months ago we started what seemed to be a terrifying journey. No one knew what God had in store for us. This precious gift that He gave us has blessed us in so many indescribable ways.

Seton Blaine Oliver- Monday was your 2 months birthday and today you are 9 weeks old! We have been through two months of dirty diapers, two months of late night cuddling, two months of life with a newborn, and two months of proving your doctors wrong! I love every minute of your life, and I am so blessed to be known as your momma! We love you very much and can not wait to watch you progress even more.

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These last two months have been wonderful. We have had eventful days - very eventful days - and even some slow days. Every day Seton shows progress that was never expected by our doctors. We do not go back to Dr. Habersang until May 23rd so we are not sure how much he has grown...although I have considered getting out the Wii fit to see what he weighs. We are slowly adjusting to being a family of 3; some days we are a family of 12 (with all our extra help). It truly takes a village to raise this child! Thank you so much to all our family that has spent many sleepless nights so Zane and I can get some sleep...we would not make it without your help. Even with the progress Seton has made, we still need 24 hour care.

This last weekend was very eventful in a good way. No hospital trips! We celebrated my first mother’s day this weekend which was great! My Aunt Krista and Uncle Jim came to town from Lousiana to meet Seton. We took Seton to church for the first time Saturday night. He did so well. He did not cry at all and the loud music did not bother him. Saturday after church we had a big cookout at my parents’ house with our family to celebrate Mother's Day. It was nice to get Seton out of the house to see some different scenery and introduce him to friends and family that have been praying for him, even before he was born.

On Sunday with the help of Zane's mom, sister, Gran, Aunt Dianne, my parents, and my Aunt Krista, we were able to cancel our nurse so she could spend Mother's Day with her family. We hung out and were lazy all day and Zane and I got a full night sleep! Like I said before it takes a village to raise this child!

Tonight, Seton’s feeding tube got clogged and we made another trip to BSA Radiology. They were successful in unclogging his tube this time, so we were thankful that he did not have to go through getting a new tube again. We decided to take him up to the NICU to say hello to the wonderful nurses that took care of us.  As we stood their talking with the nurses in the NICU we watched several parents scrubbing in to visit their baby. We saw a few parents that were there while we were, still hopeful to take their baby home. We are truly blessed to have only spent 2 weeks in the NICU; some of those parents have been there for 4 months.

FYI... His current (newly unclogged) feeding tube has been in for 10 days.


"Thanks be to God for his indescribable gift!" 2 Corinthians 9:15 

Wednesday, May 4, 2011

Hello, again.  Today marks eight weeks of life for Seton.  It has been the roller coaster of a lifetime which words can’t accurately describe.  We have experienced the array from devastation to God-designed miracle.  From tears of utter despair and misery to moments of unmerited bliss and heaven, we’ve walked it.  Do we wish things were different sometimes?  Yes.  Is God’s plan and power still in full control?  Yes.

Seton continues to grow and improve each week, and there are no major updates to speak of right now.  His tube did clog again this week, but at least we got a solid 10 days from this one.  We’re now pursuing an aggressive flushing schedule to keep that thing clear!

The speech therapist came for her first therapy session this morning and was at a loss for what she could do to help him improve on his swallowing. He was already swallowing all by himself this morning, so she sat and watched him move his head and swallow his saliva when he needed. He has also begun to take his pacifier for a few minutes at a time, which will only improve his ability to feed when we are able to do the swallow study. 

I committed a major blunder last week and forgot to let you all be a part of Seton’s first Easter.  He got to make his first trip to Coco and Papa’s house to enjoy family time.  So here are a few pictures from his inaugural Easter and maiden voyage out of the house (non-hospital related).  It was a complete coincedence that we found nearly-identical shirts :)






Zane

"A righteous man may have many troubles, but the Lord delivers him from them all"  Proverbs 34:19

Thursday, April 28, 2011

Seton – seven weeks ago, you inhaled your first breath in this world.  In this short time, you’ve blessed, challenged, and changed countless hearts.  We look at your strength to find what we sometimes lack.  You are inspirational, and I know without doubt your impact will echo in fathoms.  We love you.
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Well, I jinxed it.  Not even twelve hours after posting last week, Seton’s tube clogged once again.  We took the all too familiar stroll down the road to our favorite hospital and had his life-supporting plastic appendage reinserted past his pylorus and into his small bowel where it should reside.  Home again, home again.  It was our quickest visit yet, and the tube has now been in for a week again.

We visited Dr. Habersang’s office on Monday.  It took our little boy six weeks to return to his birth weight, but within the previous ten days between doctor visits, he managed to pack on an additional 9 ounces.  Heh…amazing what happens when the feeding tube stays in long enough to…feed.  Seton was given a glowing report overall from his doctor.  He did increase Seton’s baclofen to compensate for his growth, and it has seemed to help.  His oxygen levels are doing quite well.  Our hope is by the next visit we might be able to take him off the oxygen machine.  Instead of weekly visits, our next appointment is a month out.  He has had a fair amount of congestion and secretion from his nose this week, but that from his mouth has become very infrequent.  Shawna and I continue to take all of these pieces as progressive movement and rejoice.

I’ve learned that dads make mistakes.  What was my mistake this week?  I watched my son’s circumcision – a vision I can’t erase.  I literally tasted blood as I sympathized with his screams.  Now I understand why it’s done as an infant.  Someone would have to put me in a straight jacket to perform that procedure on me today.

Beyond that, I don’t have much to write this week for the sake of not becoming a broken record.  We are still thankful for each day and each blessing.  We are still extremely tired.  We are still praying and believing for healing and wholeness in Seton’s body and life.

Zane

“Be strong and take heart, all you who hope in the Lord.”  Psalm 31:24

Wednesday, April 20, 2011

Seton’s sixth week of life with us was overall quiet and uneventful, and we are so grateful.  His feeding tube has stayed in for an entire week now, so thank God and thank each one of you for your prayers for that.  We hope with all we have the streak continues well into his future.  We did not meet with Dr. Habersang this week, so there are no major updates in that regard.  We have reduced his oxygen from one liter to one-quarter liter, and he continues to require less suction and swallows on his own more and more.  He has appeared slightly more spastic in the last several days, which we are guessing might be related to his growth and the need to increase his Baclofen dosage.  We will discuss this with the doctor on Monday.

As promised last week, here are some pictures from Seton’s one month photo session:
































I’ve really struggled with what to write tonight.  Sometimes I feel like we’re living life through a bipolar perspective.  We can’t even attempt to count the times and ways we’ve been loved and blessed.  It really is uplifting and encouraging.  As the days continue to accumulate, we mark each a victory, but the weight of walking through this circumstance becomes cumbersome at times.  Physical and mental exhaustion try to root deeper, and I find myself less able to contest it.  Our well is running dry.

It would be quite easy for us to slip in our efforts or even to give up.  Believe me; I’ve entertained the notion on more than one occasion, but my heart and my spirit refuse.  Our God is bigger than anything we face, and we will not walk alone.  We have to believe it, we have to know it, and we have to carry it out.

Zane

"I consider that our present sufferings are not worth comparing to the glory that will be revealed to us." Romans 8:18