10 Months Old

This past Monday, Seton turned 10 months old. We have not updated in a while because there really is not much to update. We are finally getting into the stride of our new life, what Zane calls “the new normal.” Seton has therapy appointments twice a week, with a speech therapist every week, occupational and physical therapist every other week. We only have to go see Dr. Habersang every other month, unless something goes wrong (like his mic-key button leaking, which happened this week).  

It was a year ago this week when we first found out something might be wrong with our baby boy. And our journey of seeing specialist doctor began. What a way to start out 2011… a year that I am very glad is OVER.

We took Seton to meet Santa at Santa Brunch at Amarillo Country Club this year. Seton got to meet Santa and Mrs. Claus. 

In Santa's Sleigh with Landon and Gracie

Meeting Santa with Landon and Gracie

Mrs. Claus & Seton

We had a very Merry Christmas. God decided to bless Seton with a white Christmas for his very first Christmas. It was perfect. We still loaded him and all his gear up and took him all over to different family gatherings, but Christmas Eve and Christmas morning we sat around in our pjs and just spent time together as a family of three. Having just the 3 of us happens so rarely in our house, and we really enjoyed it. Seton loved looking at the lights on the Christmas trees and garland around the house. I really hated to take it all down. Here are a few (or several) pictures…

Staring at the Christmas lights

My Little Santa

Hanging out with his giraffe Christmas Morning

Looking out at the White Christmas

Our Family

I hope you all don’t mind me sharing some of my thoughts…

When people ask me, “How is Seton doing?” I really have a hard time answering that question. Don’t get me wrong, I do not mind being asked. Sometimes I just have a hard time answering. If you ask when Zane is with me, I usually look to him to answer (I am not much of a talker). The other 10% the time I say, “He is good” or “He is okay,” without much more detail. Do you really want to know that I was up all night because he can’t get over this crud, or that he cried most of the night for unexplainable reasons that I chalk up to teething…even though he does not have any teeth yet? I cannot talk about my fear of him never walking, crawling, eating, playing, or even smiling.  Yes, it is a miracle that he is alive and gaining weight. Overall he is doing well. He made it through his first sinus infection/ flu.

Then people ask, “How are you doing?” I have a hard time answering that also because I do not talk about my pain or my troubles. No one needs to worry about me. No one needs to know the pain I struggle with daily. Do you really want to hear me talk about how I was up all night listening to the baby monitor to make sure Seton was still breathing, or that I saw an adult driving his wheelchair down 45^th street and had to pull over because couldn't quit crying because that is not the life I want for my son? There hasn’t been one day this week I have not cried while driving down the street. When I hear people talk about finally being out of diapers, I sit in silence because that may never happen for my family. I sit in silence a lot because I do not want other people to worry about me; I have always been “the fixer” not the one who needs “fixing.” I have a lot of negative thoughts in my head that I have to fight most days.

We had a calm New Years Eve; again just hanging out as a family…I think we were all in bed by 11:30pm. We are excited for the New Year and all God has planned for us. We might be the only family that had a baby last year that will not say it was not the best year of our life.  It was a difficult year, it had good times, and it changed our lives; but I am glad it is over. I can not believe how much we have changed and grown over the year. We made some really great friends this past year, and would not have made it without the help of our family and friends. 2012 is going to be a GREAT year for our family.

I don't know why God chose us to be Seton’s parents, but I am glad he did. I love that little boy so much. Do I wish things were different? Honestly, yes, sometimes I do, and then other times I could not imagine anything better.  We still expect a miracle of complete healing for Seton; and pray for it every minute of every day. I know God has a plan for us and that we are just in a difficult season right now. He has brought us this far and will continue to carry us through our journey as Seton’s parents, because we are not strong enough to do it without HIM.

This song is perfect for us. I have loved it since the first time I heard it last year.

 Matthew West - Strong Enough

 Here are a few more pictures of Seton. I have not taken any 10 month pictures yet, but I will post them when I do.

9 months old

I just love these toes! 

 ⁹ “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. ¹⁰ For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.”    Luke 11:9-10 (NLT)

Thank you for all your prayers and support!

~Shawna~

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) 

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 6^th and 7^th 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!

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

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

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