Noah’s surgery went well.  The doctor took biopsies from his esophagus, stomach, and small intestine.  It should take about a week to get the results.  When the doctor tried to move the scope through Noah’s pylorus (the opening from the stomach to the small intestine), he found that it was very tight.  He had to work quite a bit even to get the scope to fit.  He feels that this could be a big factor in Noah’s inability to handle his feedings.  The doctor said that the pylorus is probably stretched out a bit now and that may help with the feeding problems.  The surgical nurse said that if this didn’t work, Noah might end up having another surgical procedure to open the pylorus more. 

Many of you may have heard of a similar condition call pyloric stenosis.  The doctor said that this is not what Noah has.  He did say that it looked like Noah’s pylorus “had never fully opened.”  He was in a hurry and I couldn’t seem to get him to slow down and talk to me more, so I am not exactly sure what that means – is this a congenital defect present from birth or was something supposed to happen with the pylorus at some point in infancy and it hasn’t happened yet??  We will have a follow-up appointment with this doctor in a couple of weeks and I fully intend to try and pin him down and get more information at that point.  Most of the doctors we have seen have been wonderful about giving me all of the information I want.  This particular doctor and one other doctor are VERY hard to pin down about anything.  I wonder if many of their patients’ mothers aren’t really interested in details and if they are brief and vague as a result, or if it is their personalities.  An example – the doctor breezed by and handed me a sheet of photos taken inside Noah’s digestive tract (now THERE is something for the baby book LOL) and I had to chase after him to ask him what the pictures actually were.  He seemed surprised that Jeff and I would want to know what each picture showed.  To us it just seemed obvious that we would be curious about the photos.  They don’t do us much good if we don’t know what they are!

Noah had a pretty hard time in recovery.  He was very, very hard to console, and when he became a bit more alert he was highly offended by the oxygen, I.V., monitors, etc.  He wanted to nurse but his throat hurt so that upset him as well.  He finally just collapsed in my arms and fell asleep so we stayed until he woke up.  As soon as his eyes opened back up it was like someone flipped a switch and he was right back to his happy little self.  The nurse couldn’t believe it!  He has had some fussiness this afternoon and has been throwing up (I would too after all that!) but is doing better than I expected overall.  Since Noah's weight gain has been so tremendous, we asked the doctor if we could slow down the rate on his feedings.  A few less calories obviously wouldn't hurt this guy and might make him feel a lot better, but the doctor wasn't willing to change anything until the follow up visit in a couple of weeks.  I told him honestly that since Noah is gaining 2-4 ounces per day, we have started turning off his pump for an hour or two when he gets really uncomfortable.  He was fine with that.  It would make more sense to me to just slow down the rate, but this is an OK solution for now.

  Today was filled with so many blessings and surprises, including:

 1.  Laurie Latour of Future Christian Homemakers sent me a precious note AND a Starbucks gift card!  We live in a small South Carolina town – we don’t have a Target, or a Sam’s Club . . . but we are getting a Starbucks less than 2 miles from our house.  (YAY!)  For years it was just a rumor, but they have almost finished building it.   There are also Starbucks’ all over Greenville so I can use my card to get a treat during all of my trips for Noah’s doctor appointments.

2.  A precious lady who I have never met, who heard of Noah through a friend of a friend, knit me a prayer shawl.  This absolutely blew me away.  My oldest daughter Hannah and my mom and I all love to knit, and we participate in a Prayer Shawl Ministry.  Every Monday night we meet with several other knitters and we knit shawls for women who are going through difficult times.  We all pray over every shawl every week and we each pray while we knit.  I have been knitting a shawl for a very special friend for months.  I had finally finished it when I realized that I had made a very obvious mistake right near the beginning of the shawl.  I didn’t have peace about giving it to her that way so I took a deep breath and started all over.  It was clear to me that God knew that she still needed extra prayers as she has had additional difficult circumstances while I have been knitting this second shawl.  I have made a point of taking the shawl with me every time Noah has been hospitalized.  First of all, I have more free time to knit without my usual responsibilities.  Second, I have been able to witness a little when people ask me what I am knitting.  Third, and most important, it helps me keep my thoughts and heart in line to pray for someone else instead of indulging in a pity party.

          I have to say that I have been so blessed by my participation in this ministry, and I never in my wildest dreams thought that God would put it on someone’s heart to knit a shawl for ME.  This shawl came all of the way from New York and was a true labor of love.  Every time I wear it I will be reminded of how much God loves me – it is like getting a hug.  This makes me more eager than ever to finally finish the shawl I am knitting so that my special friend will have the same sort of happy surprise.

3.  I have wanted to buy Noah a couple of “big boy” toys.  Because he can’t sit up, he has been limited to rattles and similar small toys, but now that Jeff is making him a little table to go with his Bumbo I thought he would enjoy some toys that are more age appropriate.   Several days ago the wiring on his bouncy seat shorted out, and today I found out that the manufacturer decided to send us a check for the price of the seat.  Thanks to some sales at Wal-Mart, I was able to use that money to get him a new bouncy seat AND some foot rattles (to encourage him to stretch and grab at his feet) AND two very fun age-appropriate toys.  One of them is musical and every time he gets the music going he starts bobbing his head and “dancing.”  Too cute!! 

4.  I am thankful for my husband.  I couldn’t ask for a better man.  He is my best friend.

5.  I am SO thankful that the doctors agreed to put in Noah’s IV after he went to sleep.  It ended up taking them three tries and I am just incredibly thankful that he was spared that bit of pain and misery.  He still has three ugly little bruises, but at least he didn’t have to suffer through the poking and the sticking!

Love,

Kate, Jeff, and the children

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Posted by Anonymous

glad to read the updates.
still praying
Monique

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Posted by StephG

My darling dears...We are praying for you all. I love getting the updates, and really enjoyed hearing that 'our' precious little one is gaining weight. You are all a wonderful inspiration to me, and seeing your praises at the end of each posting makes me realize that in the toughest of times, God is always there for us. It's easier to understand for me seeing all that you do and you still have time for us internet friends. Keep knitting darling...it does wonders for the soul! And you are doing something wonderful with your knitting as well. I could go on, but just know that I hold you all dear to my heart, and deeply in my prayers. Even my hubby asks how the little one is doing now and again... God bless.

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Posted by berrypatch

Just wanted to let you all know that Noah & the family are still in my prayers. BTW, my oldest brother had pyloric stenosis. He was very ill, lost a lot of weight, & ended up having surgery (amazing WITHOUT anesthesia - 40+ years ago). He's fine now. My aunt also had this so we think it might be herditary. Thankfully this generation of children has been spared so far. A stenosis is a tightening of an opening. If his pylorus is tight, I would think it might be pyloric stenosis. Hopefully the tube did stretch it enough. Anyway, just wanted to share that info.

Lisa in ME (SHS)

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Posted by Anonymous

Kate - my goodness! What a series of trials you all have been through. We are praying for little Noah. It's lovely to hear how people are ministering to you and blessing your walk.

The prayer shawl is wonderful! My neice knits - I need to see if this is something she would be interested in.

Hooray for Starbucks!! :)

Kathy in WA (SHS)

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Posted by Anonymous

Hanging with you in prayer for your whole family. God, please let this procedure get little Noah what he needs to get better. Give his doctors wisdom to do what is best for him every step of the way!

As for the constriction, yes that would affect his ability to feed in a big way. My husband's troubles included strictures & he was always better for awhile after each balloon expansion procedure. Once they fixed the underlying problem, the procedure was able to finish opening his tract so he could eat normally. If there is nothing acting externally to overly tighten the stomach opening, today's work may be a bigger blessing to little Noah than expected! I sure hope so!

Hadn't heard of this prayer shawl ministry, just the head huggers for chemotherapy patients. Wonderful that you are getting this personal support, even as God opens the doors to cover yours & Noah's formula needs & other things. Praise God!

Susan in Va (SHS)
http://shushan37.blogspot.com/

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Posted by Anonymous

I just "discovered" this blog tonight and read over many of the recent entries and my heart goes out to you all! (I had actually tried to come here a number of other times when it had been linked from the Christian Self-Publishing group, but everytime I came, it was a blank page - not sure what the problem was.)

Anyway, just wanted to let you know I will be praying for you all and following along here now that I'm able to access the page so I can know better how to pray.

Crystal Paine
http://www.BiblicalWomanhood.com

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Posted by Shannon in Florida (shs)

Dear Kate and family,
I just want to let you know that I continue to pray for you all and check back often to see how Noah is doing. I also want to share a little something about my dealings with doctors like the one that did Noah's procedure. I have a 7yo with severe cerebral palsy. We've been through countless surgeries and I've had my fair share of dealings with doctors. Please remember this- God gave YOU this child. I know in so many ways, you are at the mercy of the doctor's guidance, but please remember that you always have the last say. I'm speaking specifically about your request to lower his feedings. I have had to literally tell a doctor, "Listen, you have many patients, but I have just one. We are going to take him off of this medication, period." In that case, I felt that a new med was making his seizures worse and the doctor disagreed. I won and I was right. I tell you all of that, to say this- please ask God what he would have you do about these feedings and then follow that course. Just because the doctor wants to wait a couple weeks, doesn't mean that you should. Doctors are not the end all- Parents are. Be strong and trust that you know your own child and have the right (God given!) to go against medical advice. This doctor won't be comforting Noah between now and his next appointment, you will.

I hope I didn't get carried away there. I think I've gone nose to nose with doctors one too many times :-)

Much Love and Blessings,

Shannon

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