It is a little after noon on Saturday, and Noah hasn’t really woken up since his surgery.  Several times an hour he cries out, whimpers, or grimaces to indicate pain, but he hasn’t come up to alertness yet.  I have been staying right beside his crib because he will settle faster if I can put my hand on his cheek or stroke his hair.  You have all seen the pictures of Noah’s great smile – well, his sad face is just as effective and is completely heartbreaking!  I can’t bear to see him hurting like that and am thankful that he seems comforted by my touch even though he isn’t fully conscious.  I haven’t been able to hold him yet.  That is hard for me, but I know that it is best for Noah.  The level of snuggling I can do by leaning into his crib is enough to soothe him, and it would cause him a lot of pain if I picked him up. 

 Because he is so uncomfortable, his morphine has been increased to every 2 hours.  The morphine makes him itchy and he keeps scratching at himself in his sleep.  He has actually rubbed his little chin raw.  This morning the doctors added benadryl which seems to help the itchiness.

 When the medicine is really working and he is resting peacefully, he “nurses’ in his sleep.  His face gets so peaceful and his little mouth just doesn’t stop moving.  It is precious to see and I like to think that he is dreaming about snuggling with Mommy.  This will last 15 minutes or so at a time before he shows pain again.

 He spiked a very high fever last night which isn’t uncommon after major surgery.  It is lower today so we don’t think there is any infection.

 The surgeon said that Noah’s mesentery, which is the support system for his small intestine, had adapted to his unusual anatomy.  Now that things are moved around, that mesentery is going to have to stretch to accommodate things.  This will go on for a number of days and will be very painful.

 There is a bit of concern about Noah’s nutritional status.  When he was weighed before Wednesday’s surgery, he weighed less than he had a month ago.  He hasn’t had any food or nutrition since 4 AM Wednesday.  We discussed giving him TPN (total parentaral nutrition, given directly into the blood).  This would require placement of a PICC line.  This has to be done under sedation in the PICU (pediatric intensive care unit) by a PICC line certified PICU nurse.  Because PICC lines are usually scheduled in advance, there is no one here this weekend who can do one.  Right now the plan is to try a very slow drip of formula on Monday to see if he can tolerate it.  This is very early to start feeding, but since he can’t have a PICC line before Monday anyway, there is no harm in seeing if it will work.  If it does work, it is a les invasive procedure than getting TPN.  If it doesn’t, we will revisit the idea of a PICC line.  We just don’t want to see Noah get down to skin and bones again!!!

 I wanted to thank all of you who are cross-posting the blog updates on other lists.  I appreciate it so much.  I am also very thankful for the comments.  This is a lonely place and once every couple of hours I look forward to checking for comments.  Reading them makes me feel like my friends are right here with me!

 We are getting such wonderful care here.  His nurse has been guarding his rest like a hawk.  She won’t even let housekeeping come take out the trash – she waits until he is already restless then changes it herself!   I even got a little nap today by pulling my cot up alongside Noah’s crib so I could reach him right away if he was hurting.

 We don’t know yet if a replacement has been found for Jeff.  (Of course, NO ONE can replace Jeff, but you all know what I mean!)   We should know at some point today.  He has been doing an amazing job holding down the homefront.  He really is a great dad.

 Jeff actually just got here for a visit, so I am going to go spend some time with my sweetie.  I’ll update again today/tonight if there is big news.  If not, I’ll wait until tomorrow.

 Love,

Kate

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Posted by lilie

Hi is this your first comment for this post.

lilie

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Posted by MamaDole

Oh Kate~
I am so thankful that Noah came through his surgery okay, but I am so sorry that he is having to go through all this hurt. I wish I was close enough we could just sit down with a cup of tea (or Starbucks!), and talk and pray together ~ for Noah to recover well and quickly, for grace and mercy for his dr's and nurses, for comfort and peace for you and Jeff, and the children ~ what great lessons in faith they must be learning right alongside of you! God loves you all so dearly to be walking you along this path. I know that He is holding you close, picking you up when you can no longer walk on your own. I will be praying specifically today for Jeff to be able to stay at home this week.

"He will tend His flock like a shepherd; He will gather the lambs in His arms; He will carry them in His bosom, and getnly lead those that are with young." Isaiah 40:11

Father God,
I just lift up Noah to You. I pray Father, that You would hold Noah near, and that he would feel Your presence. I ask that You would ease his pain, and cause his medications to be effective. I thank You for providing them with nurses who know and love Noah, and are so merciful toward him. Uphold Kate and Jeff, Father~ give them wisdom with any decisions that have to be made. I pray the way would be clear to them. I ask that You comfort them, and give them Your peace, which passes all our understanding. I praise You for Noah coming through surgery so well. I thank You that You have given surgeons the knowledge and skill they need to be able to help Noah. We stand in awe of Your grace and love and mercy. May Kate feel Your presence today, and know that You are ever near.

I ask this in the precious Name of Jesus, Amen.

Love,
Tracy, for the Dole clan

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Posted by Anonymous

Oh, Kate, I'm sooo sorry he's in so much pain. I'll be praying for him and for you.

Blessings,

Lisa in Jax

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Posted by MiikoGibson

Kate, my heart is breaking for you and for little Noah. He is in my thoughts and prayers as I go about doing what needs to be done here in the Gibson household. Also praying for Jeff's "replacement". Love, Miiko

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Posted by Courtney

We're praying for Noah and all of you. How difficult is this time in your lives. I loved how you said "God is good all the time" at the end of your other post. Yes. He IS good all the time-even during hardships. Praise God.
Courtney
www.homeschoolblogger.com/courtney

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Posted by lahbluebonnet

Reading about Noah's whimper due to pain then his nursing in his sleep reminds me of when my ds had surgeries. I continue keeping all of you in prayer.
Blessings,
Laurie from TLT

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Posted by Roni in So.Cal.

Though I know sometimes it's hard to feel all of us out here in cyberspace, try to remember we are right there with you, Kate! We are praying for you and your family and faithfully read all of your updates. All of you, and especially little Noah, have become such a part of our lives. Your grace and trust in our Father are an inspiration to me and have, on many occasions, kept me uplifted and positive in my own daily walk. We pray God's peace upon you. Remember to just keep your hand in His ... He is always faithful, even when we are not.

Blessings to all of you!
Roni <><

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Posted by SandBetweenMyToes

I am usually just a lurker here. I have Noah's updates sent to my email, so I can be sure to check in. I have been praying for you all for weeks. You are an amazing mom. I feel so sad for the pain Noah (and you) are experiencing, and I pray God's covering over you all.
Letitia

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Posted by Maleah

Hopefully they'll be able to get him more comfortable soon. My aches reading about how much pain the little guy is in.

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Posted by Joy Kinard

Kate,

You must know what a blessing it is to Noah to know that his Mama is right beside him. Be sure that you take care of "Mama" while he is sleeping. I know that your focus is on him, but he will need you even more when he wakes up. Take a few short breaks while he sleeps to eat and refresh yourself. I know Daddy won't mind a few minutes alone with his little buddy, either! I continue to pray thorughout my day for Noah, you, Jeff, and the children at home. Noah has very much been on my heart this week. Please call if you need something.

Joy

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Posted by DonnaC

I am so glad it appears you are getting first-rate care (LOVE that nurse of his!). I have fond memories amidst the pain when my Richard & I were in Cook's Children's Hospital here in Fort Worth. By and large, those who work in children's hospitals are wonderful people who care a lot and truly make a difference not only for the children, but for their care givers also.

As "alone" as you feel, know you've got a mighty cloud of witnesses about you, and your prayer covering is in place. {{{hugs & prayers}}}

In Him,
Donna C
http://donnac.com

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Posted by Stacy Blackwell

Dearest Kate, I have a baby the same age as your sweet Noah and can really feel your pain. I don't know you and you don't know me but I wanted you to know that I am praying for your sweet little guy and for you as a mom. It takes an incredible amount of strength to go through what you are going through and I just want to encourage you to keep the faith and hang in there. Here is a little quote I found recently that really helps me when I feel overwhelmed. "WHEN THERE IS NOT ENOUGH OF YOU, THERE IS ALWAYS MORE OF GOD." Hang in there sweetie. You all are doing great. In Him, Stacy Blackwell

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Posted by Anonymous

Kate,
I know how lonely it can be in the hospital. I am so thankful Jeff is there with you now. Remember, though, that your lonliness allows Noah that rest he need right now. So, if we can be your company via the web we will all try to do that for you. I will be praying that the feeding will go well and that the PICC line will be unnecesary. Through, if he does have a picc line that keeps him from having any more blood draws as they can get it from this line if they put enough hubs in. The Lord knows what he needs and I will pray for God's wisdom in this decision. Continuing to pray for a replacement for Jeff.
Hang in there. Love you and remember that the name of the Lord is a strong tower.
Gilda (TLT, SHS)

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Posted by Anonymous

Dear Kate & Jeff,
I went to sleep last night praying for a replaceplacment of some sort for Jeff. God is working on that one. We are all praying for the whole family as they are all waiting for Noah to heal quickly and come home. And I am praying for you Kate - as you are at the hospital "waiting" for him to heal! I will pray for peace and lots of strength!!!AND for the Drs. to know the right stuff for Noah!!!
Sleep when he sleeps!
Love from the Kiessling family in Fresno, Calif.

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Posted by netherfieldmom

Kate, have you read Little Pilgrim's Progress? Today's post made me think of it. It is so wonderful. I hope you and your kids have read it. You guys are trudging through some of those dark days, but you have faithful friends with you and you have each other and you are steadfastly making your way to the Celestial City! Won't it be great to watch Noah grow so quickly when his nourishment can become more normal--better get some bigger clothes! Seems like they could have found some of this situation out via CAT scan a lot earlier on in this process???
Anyway, it is what it is and he'll heal quickly and be growing like a weed!

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Posted by Anonymous

Kate,

You are in my prayers. I know how hard it is to watch a little one go through this, stuck in a hospital bed all "wired up". My youngest had surgery this last June and it was so hard to not be able to pick him up to comfort him.

Noah is in wonderful hands. The Lord is his comfort! And what a blessing to have his mommy right there by his side.

Make sure you get some break times. It sounds like the nurses are wonderful and love Noah. Try to get away for short walks or some fresh air, trusting the Lord and the nurses for Noah's care. I know it does the patient no good if Mommy doesn't take care of herself a little!!

Praying for Jeff and the other kiddos, too!

Sam in WA

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Posted by InfertilityMom

Sometimes I feel like a broken record for posting over and over the simple message that I'm praying, so I haven't even posted the last couple times. But you mentioned that you look forward to reading the comments, so humble as it may be, know that you are being held in prayer. {{{hugs}}}

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Posted by Anonymous

Kate,

I understand what you mean when you say the hospital is a lonely place. My son was born prematurely, stayed in NICU for 3 weeks, then was hospitalized again for a blood disorder when he was 2. Just being there is exhausting. Our prayers are with you, and I know from experience (as you do, too) that the knowledge of being surrounded by prayers is a very good feeling. God is good, and He'll continue to hold Noah and your family in the palm of His hand.

Blessings,
Karla in El Paso, TX

PS: Thank you for sharing the story of Noah "nursing" in his sleep. I do believe he's dreaming of snuggling with you. It's just precious.

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Posted by Anonymous

My heart aches for you as a parent and for little Noah from my Mama heart. I will continue to pray for you and ask that God lifts Noah through the pain of his recovery and that the surgery helps to the best of it's ability. And for you and your family thorugh these struggles. God is such a comforter I pray that you feel his presence especilly in your most lonely trying moments.
A Mama

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Posted by keeperathome44

Praying for baby Noah . Dear Lord, great physician and healer, touch this precious baby of Yours. May his family also know Your peace and rest at this time. Heal Lord, Provide Lord, Guide Lord and reveal Yourself.
God Bless you all,

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Posted by Lynn in FL

Hi. I don't even know if I've left a comment yet. But, I have been following you all for so long. Even my family knows who you all are. We still laugh about Jeff and his love for his automobiles. We are keeping little Noah in our prayers each and everyday. We're also lifting you all up in prayer. We're praying for a replacement for Jeff, understanding for your kids, strength for you, and guidance for the doctors. You and your family are such an inspiration to us in our own trials that there's not a day that goes by that we don't think of you.

In Christ,
Lynn

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Posted by Anonymous

We continue to pray for sweet Noah & your entire family! We're praying the meds work their magic without the side effects & that the comfort measures your using (stroking, etc...)are effective. Also, that you are able to rest in between to maintain your strength as Noah & your family need you healthy. Mom's are the glue! Your sweetie as well & the other children are prayed for, that they may hold tight & continue with the courage & faith they have shown throughout your ordeal. God is with you all & your prayer warriors are standing in force! Love. The Ressler's - Texas

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Posted by Anonymous

Kate & Jeff, I am so sorry that you are having to deal with this kind of pain. I am praying for healing for little Noah and for his comfort.
Father God please give him rest and comfort as his little tiny body adjusts to all the things that just happened. Lord we also pray that his nutritional needs would be met. Father we know You are in control of this situation and although we don't even begin to understand it, we leave it in Your capable hands with complete trust. Lord I also pray you would bring peace and comfort to Jeff, Kate and the rest of the family. Give them the rest they need and Lord help Kate and her momma's heart to know that You are holding Noah in your arms when it is too painful for her to physically hold him in hers. Father help them to be strong for Noah and the other children. We as human beings are completely incapable of that kind of strength so please provide it for them. Lord I pray they would continue to be a testimony to Your love and strength as they have been to so many people already. Bless them Father!!
In Jesus Precious Name, AMEN!!!

I am sure you have probably read the story called "Heaven Scent" but I wanted to remind you about it, especially right now when you can't hold Noah. This is just a portion but I will put a link to the entire story at the bottom also.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Danae was sitting in her mother's lap in the bleachers of a local ballpark where her brother Dustin's baseball team was practicing. As always, Danae was chattering non-stop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, Danae asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Danae closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet, it smells like rain. Still caught in the moment, Danae shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest." Tears blurred Diana's eyes as Danae then happily hopped down to play with the other children.

Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Danae on His chest and it is His loving scent that she remembers so well. You now have 1 of 2 choices...you can either pass this on and let other people catch the chills like you did, or you can delete this and act like it didn't touch your heart like it did mine.
http://www.truthorfiction.com/rumors/s/smellofrain.htm

Shelley

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Posted by Anonymous

I have been thinking of, and praying for, you, your family, and Noah for weeks. I have shared your story with many people and I believe they are praying for you also. I hope this time in the hospital passes quickly and Noah returns to his cheerful self, but improved by this major operation. God be with you.

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Posted by Anonymous

from Massachusetts. Having had 2 sick babies at different points myself, I know a little about the hurt of seeing your little one in pain.
Know that tonight, another person will be praying for you and your precious little guy.

Lori

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Posted by Krista N.

Hi Kate!
Have you ever heard of the story of the boy who accidently fell through the ice and had to hang on while his dog went for help? He repeated to himself over and over an old Norse proverb, while he struggled to survive the fridgid temperature and wait for his rescuers to arrive. The proverb was, "Heroism consists in hanging on one minute longer." He was whispering it deliriously to himself for the hundredth time when they arrived...this proverb came to mind after I read your last blog! It sounds like you're doing an awesome job, Kate! Hang in there! And God bless you with the strength to hang on "one minute longer", until you and baby Noah are happily on the other side of this trying ordeal! Love & prayers,
Krista, for the Nissleys

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Posted by Anonymous

That's all I can say, I';m praying your you and my heart goes out to you most emphatically. May God bless and guide your hands and hearts.

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Posted by Anonymous

Dear Jeff and Kate,
You do not know me, but I continue to pray for your little Noah. Due to my own personal health struggles, I learned as a young woman that God will give you the grace you need when you need it. I know this is such a difficult time for you all, but I sense a peacefulness in your comments that only comes from God. I give him praise for your testimony and fervently seek his healing for your little son. I pray Noah's pain decreases and his weight increases. I pray for your strength and peace. I pray for your other children as they are probably very much missing their mom and baby brother. All my love and prayers, Lara.

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Posted by NCLighthouseKeeper

I haven't been able to check in lately, so I am just now catching up on the posts about Noah's recent surgeries. Kate, I have never gone through anything like this with my 5 children! The closest was when my 2-y-o little girl ate a whole bottle of children's Tylenol, and had to go be treated in the ER ~ her cries for "mommy" ( as Dr, and nurses held her down to get a tube in her nose ) broke my heart, but the whole thing was over in a relatively short period of time, and she was fine. She is now 19 yrs old and away at college. I pray that this surgery WAS successful and will make a great difference in Noah's ability to take nourishment and gain weight. I pray that this would be a great first step in improvement, and that answers for his other issues would be coming as well. If Jeff does have to go on this trip, I pray for the right people to step up to help you and your family, and for great understanding and cooperation by your other children. God bless you all.
<><
Beth in Wake Forest, NC

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Posted by Anonymous

Kate and Jeff,

We are continuing to lift up Noah in prayer, as well as his Mommy and Daddy. Sweet little guy, my heart is so sad that he is in pain. Praying everything was a success and he heals quickly and without complication.

Ginger in LA from SHS

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Posted by Heartathome

Just now had a chance to check back and am sorry to read that Noah is in such pain. I will continue to pray for a quick recovery for him and that the feeding will work without adding the additional tube.

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Posted by Anonymous

Kate,
I don't have anything great to say (as usual). I want so much to have something comforting or inspiring to say, but it's just not there. The only prayerful thought I have to share with you is this - I love you. You are a very dear sister in Christ and love is the best thing I have to offer you. I'm reminded of the verse that basically says we love because He first loved us. Kate you are so dearly loved by this great homeschooling community & we all admire you for your ability to stay the course through it all. Mostly though, I admire you because of who you point me to each time I come to read your updates - Christ. You share the love of Christ with us all. God has given Noah such a great "calling" through all of these physical trials and pain that He allows him to endure and you & Jeff see to it that God continues to receive glory. It's truly remarkable. We'll continue to pray and will continue to pass on the need for widespread prayer.

Love,
Debra

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Posted by Anonymous

Kate,

We continue to pray for you and your family and especially baby Noah. I'm so glad to hear he came through the surgery fine and am praying for all these issues with recovery and nutrition.

De'Etta

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Posted by RDFLEMING

Kate and family,
Just wanted to let you know, that because of all you are going through, the rest of us, watching, crying out to God, and cheering, are also holding our children closer. When we were going back and forth to the NICU for 5 long months, riding the roller coaster of 'good news--bad news', I remember saying, "God I can't 'do' this day!" To which HE always replied with something from HIS word, such as, "I can do ALL things through Christ who strengthens me" or "My grace is sufficient for thee", or "I will NEVER leave thee nor forsake thee." I was then able to say, "O.K., I can 'do' THIS day, Thank you Father!" Drink deeply of HIS word and remember to praise HIM--actually, you put me to shame, seeing how well you are doing that one! Thank you for your updates, they help us know how to pray more effectively for all of you. Lean back on HIS everlasting arms!
Grace and Peace,
The Fleming Family

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Posted by Anonymous

I just wanted to let you know that we are praying for you all. I will also let my in-laws know and they are great prayer warriors. Christine in Mexico.

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Posted by Anonymous

I can only imagine what you are going through. I am so sorry your baby and your heart are hurting. I will pray that God wraps you in His arms.
Sending up prayers on your behalf.

Nancy White
homeschooler in MS

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Posted by berrypatch

Hugs are coming your way along with a whole lot of prayers! I pray that Noah is getting some good healing going on with little pain. I pray that you, Kate, are getting enough sleep to be able to care for him. I also pray that Jeff is able to find someone to take over for him so he can be home with everyone.

Hugs from Maine!

Lisa

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Posted by Anonymous

Kate;
Our internet has been down for about 2 weeks...and I have thought and prayed for you often. I've longed for news and even had others "check on Noah for me!: My daughter said our unreliable internet was up, and asked her to check on you. I want you to know, even if our 'net goes back down, my thoughts and prayers are with you.
I'm sad it took them so long to think of benydryl. But I'm glad they did. I'd been wondering if the Picc line would be a good option. It sounds like they are getting going.
My heart and prayers are with you.

Z has a swallow study and cranial-facial appt tomorrow. He's doing fantastic in alot of ways...but I'm praying for tons of accurate information tomorrow.

Are you in Greenville or Atlanta?

Love
Monique

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Posted by Liz in OK

Kate, I'm continuing to pray for you & Noah & all your family -- argh, what a difficult normal it is to spend days in the hospital! I hope you have some music there to encourage you. We never went through a hospital stay without bringing a cd player to listen to encouraging music & we kept a folder with pages colorfully printed out verses & tape to stick them on the walls too.
One cd that I listened to a lot was Mark Shultz singing "I am" (over & over & over again) & "I have been there." Do you know those? Youtube's got them:
http://www.youtube.com/watch?v=4b_AP57jptk
http://www.youtube.com/watch?v=B04XZ4gTtXA
Music has always been a great help to me (that's why I collected & posted so many songs on my website - I need reminders, upbeat reminders, of God's great grace & care & concern otherwise I become a quivering mess of what ifs & what nexts).
Praying for blessing upon you all this evening -- He has been there & He's standing with you now!

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Posted by Celticmuse

I will keep praying for you all. I know it is hard, I have two close friends that have gone through having sick babies in the last two years.

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Posted by Savmom

This is my first post, but I have been following your family for quite some time.

We are praying for a speedy recovery for little Noah and peace for you as you watch over him while he does.

My ds was 13 when he had emergency surgery on his hip (he had a life-threatening infection in the joint) and when he came out of surgery what broke my heart was when he reached up and touched my face and cried out "Mommy." He might be big in size but little in spirit. :(

It is hard for us moms to watch our children suffer, no matter how old they are.

I wish I could help you in some manner to ease your stress & worries.

Just know that one more family has added you to their prayers.

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Posted by Joyliz

Dear Kate:

My family and I just got back from a two day trip to Phoenix, AZ. The absolute first thing we did was run downstairs and fire up the computer to check on how Baby Noah was doing. Needless to say, Noah and his recent struggles have become a major focus to my family. We pray for little Noah, you, Jeff, and your other children now several times a day. In fact, last night, my 3 year old dd and 4 year old ds prayed for Noah before bed without being reminded!

It seems as though you have folks literally around the entire country praying for you and your dear sweet Noah. Just know a family here in Northern Arizona is holding you all in prayer.

Sincerely, Joy in Flagstaff

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Posted by spitfire

Kate,
Here's another Texas family praying for you and Noah. I also have had my kids at church praying for ya'll. They ask every week how Noah is doing...and my little 4-9 yo sweeties are becoming awesome prayer warriors! We'll all keep praying for your entire family...and especially Noah. Take care of yourself Sweetie, all the kids will need lots of your attention after this is over! Blessings and Shalom to you all....spitfire in Texas

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Posted by Anonymous

I have been reading your post for a little over a month now and want to say again, you are an amazing family !! I have children with medical issues as well, nothing as serious as your's. But as we prepare for a hospitalization with my 6 year old son who has been having seizures since he was 2 1/2 years (missed diagnosed until now) I gain much strength from your family !! Please know that there are MANY people out here who are praying for you and have love in their hearts for your family !! God Bless !! Jessica from Florida

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