One week post op cleft lip and palate surgery report

Great is Thy faithfulness, O God my Father, There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not;

As Thou hast been, Thou forever wilt be.

Great is Thy faithfulness!  Great is Thy faithfulness!

Morning by morning new mercies I see;

All I have needed Thy hand hath provided, Great is Thy faithfulness!

Lord unto me!

William Runyan, 1923

My sister gave me a plaque with that song on it when Chris and I were going through a hard season of life.  We were trying to figure out how God wanted us to create our family.  It sits on our piano and I have often sat and read the words to renew my strength and give me encouragement in the reminder that God never changes, even when our circumstances and journeys in life do. 

It has been a very tough week on our little guy.

After three days in the hospital we headed home.  What we weren't expecting was that his face would continue to swell.  We should have known this because our surgeon told us it would peak at 2-3 days post-op.  This made eating and breathing especially difficult.

Eating: Upon discharge the doctors felt Jacob's intake was very good considering the amount of work he had done.  We have been feeding him a homemade infant formula with a syringe.  To the formula I have added two things suggested by the dietitian to help aid in healing: powdered vitamins and egg yolks for their protein content.  As long as I can get everything blended to liquid, Jacob is tolerating it.  We are also trying to do small feedings at the dinner table of pureed baby food mixed with water out of a spout less cup to slowly work him back toward his preoperative routine.  The nurse in the hospital gave us good advice that we needed to stay on top of his pain so this did not inhibit his food intake.  I think doing this has helped.  Some feedings are better than others.  Some he cries through and some he takes without any problems.  The plastics nurse told me post-op day five that his throat was likely very sore.  The feedings have been hard because as all adoptive parents know, food can be a powerful attachment tool.  Right now, it is not a positive experience but the risks of not eating at this point far outweigh the risks of slowing our attachment progression so we are trying to ride this wave with the proper perspective and not beat ourselves up. (sigh.)

Breathing:  This, by far, has been our biggest challenge.  Jacob's cleft was so large that before surgery, effort in this area was, well, "easier than breathing".  He has certainly never had to learn to open his mouth to breathe because the opening was already there.  Now he is closed.  On top of that add that he had a very extensive repair which means lots of swelling, and on top of that add that his nasal passages are clogged with "gunk", and on top of that add that he is congested.  I suppose it might feel a little like someone giving you a straw and saying, "Ok, now breathe through this."  He does fairly well when he is awake but as soon as sleep is required, it's all downhill from there.  We've tried everything.  Sleeping in the carseat.  Sleeping in a semi reclined position.  Sleeping with some neck extension (to pull the tongue away from the top of the palate which is where it is when in the resting position....did I mention I am a Physical Therapist?)  The latter seems to work the best but it is not perfect.  We achieve this by lying down and then leaning him backward across our stomachs.  On a typical night, Jacob will take 3-4 breaths and then he stops holding his mouth open.  He then has to open his mouth to start breathing again and this wakes him up.  This has created a lot of frustration for him (as you can imagine.)  My husband and I have been sharing nights sleeping with him and trying to help him find a good position.  He has the 9-3 shift and I have the 3-8.  We are hoping his breathing improves as his swelling lessens but the surgeon said Jacob also needs to "relearn" how to breathe.  This could take some time. 

Care of surgery site:  His incisions are healing but he has dried skin and blood all over the surgical site which we don't dare touch.  On a lighter note, we are affectionately calling him "dragon breath".  We are not yet able to clean his mouth and the pain meds he is on contain a lot of sugar.  Between that and the dried blood and surgical site, he emits an unpleasant odor.  The doctors have assured us this is normal and he does not seem to have a high temperature so at this point we are not worried about infection.  We try the best we can to keep his nasal passages clean with Q-tips soaked in saline.  There are lots of stitches in this area so the process is pretty delicate.

Then, midweek, the unthinkable happened.  Jacob fell face first into a planter.  I was immediately worried about the work done on his face.  When he turned to face me I could see nothing had opened and breathed a sigh of relief.  Just about the same time I was thinking that I began to see his mouth fill with blood and he began to cry.  Visions of a torn palate and ruined speech outcomes filled my brain.  "Why didn't I move that darn plant?" "Why wasn't I closer to him?"  "Why....." (the self blaming thoughts go on.)  We immediately called the "on call" plastic surgeon who told us not to go to the ER.  I told her there was a membrane hanging from Jacob's palate and she told me to call our regular surgeon in the morning.  We did and he said...."It's all right."  What?  Doesn't he know this is a frantic Mom thinking, "ruined speech, slowed progress in taking solid foods, a fissure (hole) in his new palate....I have ruined his life", and he says, "It's all right."????  So, now we wait until the 30th where we will have our post-op follow up and he will look inside his mouth and tell us what he sees.  Jacob did lose a stitch the next morning in some gunk I wiped out so we are hoping it was "not all that important."  (Insert nervous laugh here.)

So, how are we doing?  We are riding this wave and thanking the good Lord for seeing us through.  For being our Provider and our Rock. (²⁴ “Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. ²⁵ The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock. Mathew 7:24 & 25).  He has given us so many gifts along the way:

• Our dear friends and family that have sent emails to let me know they are praying for us and for Jacob.
• The packet I received in the mail with letters and artwork from Mrs. Peterson's elementary class saying they were praying for Jacob.
• The meals, letters, visits, and friendship given to us by a local church we visited only once.  Their love of us reminds me of the believers that supported each other in the book of Acts.  Their love has been freely given and has not been shown because of our church attendance, tithing, desire to bring another sheep into the flock (we are already committed believers), or what Spiritual gifts we have.  They are loving us as an outflowing of their love of Christ and the call to take care of each other in our need.  They have taught me so much about being one body, as Paul talks about in Ephesians 4:
  
  "As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. ² Be completely humble and gentle; be patient, bearing with one another in love. ³ Make every effort to keep the unity of the Spirit through the bond of peace. ⁴ There is one body and one Spirit, just as you were called to one hope when you were called; ⁵ one Lord, one faith, one baptism; ⁶ one God and Father of all, who is over all and through all and in all."

(Thank you Christ's Fellowship, for teaching me more about being a follower of Christ and His great love for us!)

Our parents and family has been relentless in their support.  They have called, been concerned, filled in the gaps and lended an ear.  You are the best!  What did we do to deserve such an incredible family?

For my friend that was the first to bring dinner. You, my dearest friend, have the gift of help, and you never fail to practice it on me.  (And you may continue to do so.)  I love you so much!

Let me not fail to mention my Lord and Savior.  You have given me everything when you gave me the cross.  As I look outside my window today, at the newly fallen snow, I am reminded that you take the ugliest parts of me and have made them new and white.  Your plan of redeeming your people is perfect and I am thankful that although I deserve no part in it, you have written my name in your book.  Someday, I will celebrate with you and thank you in person.  (And get to ask all my burning questions....like, what did Jonah do while in the belly of the whale for so long?  And, what did you write in the sand the day the adulterous woman was brought to you?)

In closing, let me tell you about the writer of the song above.  While William Runyan is credited for writing, "Great is Thy Faithfulness", it was actually one of his good friends, Thomas Obadiah Chisolm (1866-1960), that wrote the lyrics.  Thomas had a difficult early adult life. His health was so fragile that there were periods of time when he was confined to bed, unable to work. Between bouts of illness he would have to push himself to put in extra hours at various jobs in order to make ends meet.

After coming to Christ at age 27, Thomas found great comfort in the Scriptures, and in the fact that God was faithful to be his strength in time of illness and weakness, and to provide his needs. Lamentations 3:22-23 was one of his favorite scriptures: “It is of the Lord's mercies that we are not consumed, because His compassions fail not. They are new every morning: great is Thy faithfulness.” 

Amen and thank you, Thomas, for reminding us decade after decade of His faithfulness.  (Ok, and to the writer of the ever exciting book of Lamentations...whoever you are.)

Cleft lip/palate surgery....the last 24 hours.

My "kiss" face.



Night before surgery



I didn't know 24 hours could be so long.

Jacob had his surgery yesterday and came through it fine. It has been a long day for us.  Jacob's first surgery was for tubes to be placed in his ears  The surgeon stated there was a lot of fluid behind his eardrums so we are hopeful this is the reason for his "mild to moderate" hearing loss.  Next was plastics.  Dr. Billmire did an incredible job at reconstructing Jacob's mouth and nose.  God has blessed this man and we are thankful to be in Cincinnati and in his care.  Dr. Billmire said Jacob had a large cleft and due to his "older" age and the tissue being less pliable (compared to the normal 0-12 months old that receives these surgeries), it was a harder repair.  He indicated Jacob may need another surgery or appliances to help mold the shape of his palate.  Jacob is in restraints that prevent his hands from going to his mouth and he is to wear them for a week (that should be fun.)  The last surgeon to go was the urologist who performed Jacob's circumcision. 




Waiting to be called back.




Sportin my new look




Doing the sign for "Mommy"


The last 24 hours have been a blur of trying to control Jacob's pain, getting him to eat, and helping him to rest comfortably.  I can officially say that it is true that you don't go to a hospital to get rest.  We were up every hour of last night between Jacob being uncomfortable and the nurses doing "their thing." 

They tell me Jacob is doing very well and his oral intake is surprisingly good, although to me it seems so minimal.  They will be keeping us at least another night due to the extent of work done.  This morning, they cut a stitch that was holding his tongue forward in his mouth so tonight we will monitor his breathing while sleeping and making sure he has a good airway.  As long as intake, output, and breathing are holding steady, we should be released tomorrow. 




Getting Fed





Sleeping (like my arm bands?)

 


In recovery and still a little "anesthetized".


Thank you for all who have sent messages of love, for the Pastoral staff that sat with us through the surgeries, and for the kind things you are doing to sustain us through this time.  You have put hands and feet to the Gospel and it is wonderful to be on the receiving end of this very tangible display of God's love.  He is so good!

Loving that cleft smile!

• Stocked freezer with meals: Check!
• Children's surgical guide read: Check!
• Childcare plans made for bio son (and dog!): Check (thanks Mom!)
• Successfully weaned cleft lip/palate child off bottle: Check! Last bottle was last night :(
• Overnight bag packed for hospital stay: Check!
• Schedule cleared and hubby off work for surgery and recovery time: Check!
• Necessary paperwork together (pediatrician clearance, insurance, pharmacy info, co-pay): Check! 
• Mental preparedness for our son to have a new look to his marvelous face: ?? (No!!!)

Jacob's cleft lip and palate is not minor.  It is bilateral (meaning on both sides), large, and messy.  At the ripe old age of 22 months, he has never had a repair.  Unusual in the US during this time of modern medicine.  I remember the car ride back to our hotel in the first hours he was placed in our arms.  As he was sleeping, I took the opportunity to study his face.  I wondered if we'd ever get used to the staring, if we'd ever learn how to take care of him and feed him, and if we'd ever be able to look at him without "seeing" his cleft.  The answer is a grateful and resounding "yes".  We hardly bat an eye when he cleans out the side of his nose with his tongue.  Not only do we no longer see his cleft, but it has become such a beautiful part of our life that we can't imagine him without it.  We have accepted and embraced it.  This led to a "large" display of emotions over the weekend as I sat in my husband's lap sobbing for our little boy and his upcoming surgical transformation.   

As Jacob has come into our home, we have realized that it is not just a process of integrating him into our family but a process of creating our family into something new.  None of us is going through this unchanged.  We have all learned new meanings about sacrifice, commitment, love, forgiveness, and what it means to be a family.  We have learned to accept each other for who we are, where we are, and commit to helping each other through the difficult AND the good times.  In an odd way that maybe only cleft parents or adoptive families would understand (or perhaps I am just weird...which is entirely possible!), it feels like we are abandoning this unconditional acceptance by wheeling him into surgery.  In the face of his imminent surgery, I now see that having the procedure is not something I need for myself.  He is perfect just the way he is and we have fallen in love with him just the way he is.

I am once again brought to my knees in gratefulness for the lessons and love God has given me during this season of life.  He has allowed and is allowing our adoption process to bloom into fruition ever so slowly.  There were times I prayed things would move more quickly and nights I would tell him I want a "take back" because I couldn't do this anymore.  Even then, I could always hear him whisper, "Wait for it, I have something for you.  It will take all your time, and all your energy, and all your resources...and it will be wonderful."  God has given us time to cultivate the ground and plant the seed.  Now he is letting it grow.  Little by little, as we are learning more about Him and learning how to better take care of this garden, he is blooming and opening up a bounty of blessings into something more beautiful than we could have ever imagined.

Surgery will be this Friday and we are as ready as we will ever be.  Between now and then, we will get as many sweet puckered up cleft lip kisses as time allows and try for as many smiles as he will give.   Jacob's face will soon be transformed just as my heart has been since the day he was put in our arms.  We covet your prayers.

The Lutz Family

China Adoption Pack List

I was so thankful to the parents in cyberspace who posted not only their packing lists but also follow ups upon their return home.  I wanted to do the same for others.  Below is our list.  We took two large suitcases, two carryons, and two personal bags.  We had no difficulty with weight limits in either the US or our in country China flights.  We traveled 11/1/12-11/15/12.  Hope this is helpful.  Blessings on your travels and this very special time.  You are loved and supported and thought of as you bring your children home.   

• God is our refuge and strength, a very present help in trouble. Therefore we will not fear, though the earth should change and though the mountains slip into the heart of the sea; though its waters roar and foam, though the mountains quake at its swelling pride. The LORD of hosts is with us; the God of Jacob is our stronghold. Psalm 46:1-3,7

Adoption Packlist:

Toiletries:

Q-tips (travel pack)-Yes

Wet Ones (individually packed)-Yes

Travel Shampoo (1)-No, all hotels had shampoo

Travel Conditioner (1)-No, all hotels had conditioner

Travel Face Wash (1)-Yes

Travel facial moisturizer (1)-Yes

Travel size soap (1)-No, all hotels had soap

Floss (1)-Yes

Travel Tissue packs (6) -Yes, handy for potties as they did not always have T.P., could have gotten away with 4 packs

Hair ties (4)-Yes

Travel size hand sanitizer (4)-Yes but could have gotten away with 2

Travel size toothpaste (2)-Yes, needed both, one would not have been enough for the two of us

Contacts- Pair in eyes plus extra set -Yes

Contact container -Yes

Travel size sunscreen –No, but had we been here in summer, would have used. 

Feminine products

Travel size contact solution (2)-I only needed one but if you use a lot, will need two.

Infant Toothbrush-Yes

Infant Toothpaste-No (toothpaste a little too much to add to our sensitive cleft child’s mouth, just wanted to introduce toothbrush.)

Travel size toothbrush (2)-Yes

Razors (2)-Yes, although one hotel provided them

Hand Cream -yes

Medical:

Proventil Inhaler-No

Alvesco Inhaler (2)-Yes

Doxycycline-No

Cipro (2 prescriptions)-Yes

Benadryl -No

Polysporin-No

Baby Natural chest rub-No

Azithromycin (antibitotic for baby)-Yes

Travel First Aid kit (basically bandaids, antiseptic wipe, and ointment)-yes, just a band aid.

Travel size electrolyte powder-No

Infant thermometer-No

Permethrin cream (2)-No

Zantac-Yes

Natural ear infection medication with bulb syringe-No

Infant Advil-No

Adult Advil -Yes

Melatonin –Yes, I used the first three nights to help me get used to time change.  Worked great!

Sinugular –Yes

Hydrocortisone cream-No

Metamucil caplets-Yes

Saline Spray-We actually did use this on a burb cloth to help wipe his nose to loosen muscus.  Got the idea from a Mom with “Boogie Wipes” which would have been better had I brought them. 

Lice Medication-No

Pepto Bismol -Yes

Infant syringes (2)-Yes

(There is a lot of pollution so if you have any lung issues, come ready!)

Paper work and supplies:

Pens (6)-Yes

Paperclips-No

File Folder for paperwork-Yes!  This was priceless for keeping all our paperwork organized and in one place. 

Rubber bands-Yes

Mini stapler-No

Tape-No

Household:

Travel size sewing kit-No

Travel size dish soap-Yes

Travel size laundry (2)-Yes

Paper towels (I tore 20 off the roll and put in a large ziplock bag)-No

Leatherman-Yes! (Mostly used the scissors to open packages and cut bottle nipples)

Plastic Bags: Plastic Grocery bags, Tall Kitchen bags, Snack size Ziploc, Small size Ziploc

Reusable shopping bag (purchased a small Chicco bag with clip)-Yes

Clothes pins (15)-Yes!  Wished I had brought closer to 20

2 collapsible cups-No

2 bowls-Yes

Spoons: 3 disposable, 2 adult reusable, and 3 infant reusable-Yes

1 plastic Rubbermaid bowl with lid-Yes

Small funnel –Yes, we would boil water in our room and then when it cooled, pour into our Nalgenes so we had water to drink

½ teaspoon -Yes

2 Nalgenes-Yes, when traveling, we stuffed our socks and underwear in it to save room.

Headlamp- No

Baby Clothes and items: Could take less clothes if you do laundry and make sure to bring non cotton quick drying ones.

4 pajama sets-Yes, probably could have gotten away with 3 since I did laundry

One sleepsack-Yes!  I love these because they can’t kick them off like a blanket. 

4 short sleeve onesies-Yes, could have gotten away with 2

6 pairs of pants-Yes, could have gotten away with 4-5.

8 pairs socks-Yes, could have brought only 5

1 sweater-Yes

1 sweatshirt -Yes

3 vests-Yes

3 long sleeve onesies-Yes

2 long sleeve shirts-Yes

1 romper-Yes

1 Patagonia Capliene set-No

2 winter hats and one pair gloves-Yes

1 patagonia snow bunting-Yes (they like to see the babies bundled…gloves, hat, the whole lot!)

1 Patagonia zip up fleece-Yes

2 pairs shoes (2 different sizes)-yes (but only one pair worked.  He also came in a pair that were acceptable.)

Ergo –Yes!!

Blanket -Yes

Diapers (62 total)-Yes.  This was just about the right amount for us but since we were eating mostly formula, we needed an overnight diaper, would have taken some overnight diapers in hindsight so we bought them in China but they were costly.)

Wipes (2 refill packs)-Yes

Bottle Brush-Yes

1 canister, 1.45 lbs formula-No, bought formula while there.

One Organickids 9 oz. Bottle (I also bought the spout that can convert it into a sippy.  This bottle also had a lid that could convert into a snack cup and could be used for a measuring cup.)-We used this bottle a lot.  Good size for a 20 month old on formula and traveled well.  We had to cut the nipple.

One Cleft lip and palate bottle-No

Disposable gloves (for changing diapers….recommendations from our Adoption Center Physician)-Yes

Travel formula cup (had three sections, could also put snacks in it.)-Yes!  This was very helpful if you have a baby on formula, especially when on the go at appointments.

Thermos for keeping water warm for making bottles while out-Yes!!

1 Bib made of silicone for easy cleaning-No.  This would have been great if I didn’t have a child strictly on formula.  We needed absorbent bibs so purchased when we were there (although they weren’t very good so bring your own.)

Toys (2 blow up toys, stacking cups, 2 ducks for bath, bubbles, three small balls, small car, rattle, two blocks, pom poms with plastic canister and lid to push them through, toy caterpillar with lots if sensory functions)-Yes!  But you could get away with much less.  We would put balls in the ice bucket and this was great fun! 

Books (5)-Yes!  He loved to look at books, especially one that we made with pictures of our family.  That was great at restaurants!  Liked the one that had a mirror.

2 winter hats and one sun hat-Yes on the winter hat, we weren’t in the sun long enough for a sun hat

One stuffed animal and one small bunny blanket-Only need one

Diaper Bag-Yes

5 burp cloths-Yes!  Wished I had brought a few more as our son had a lot of drool. Recommend absorbant ones.

Bulb syringe-No

Diaper rash cream-No

Infant nail clippers-No

Mommy clothes  (My theory is always success with layering for different looks and do laundry) If you plan to wash, bring items that dry quickly.  Jeans took forever and smelled like mildew from the humidity in Guangzhou.

3 pairs pants (jeans, pants, yoga pants)-Yes

2 Patagonia pullovers (will probably live in these!)-Yes

1 scarf-Yes (would have brought a second in hindsight because they give so much versatility.)  People are dressed nicely in the hotels. 

2 tanks tops-Yes

1 sweater-Yes

One white henley shirt-Yes

2 T shirts-yes

2 pairs PJ’s-yes

5 pairs underwear-yes

One pair Toms-yes.  These were great.  Packed so light and flexible.

One Pair tennis shoes-yes. Wore on plane.

8 Pairs socks-yes, but this was too many.  Probably could have done 5.

2 bras-yes

Raincoat-yes (but umbrellas were easy to come by for a few dollars.)

Down Coat-yes

Winter Hat-yes

Daddy Clothes  (yes on all Daddy clothes, he did a great job packing!)

3 pairs of pants (1 for working out)

1 pair workout shorts

2 short sleeve work out shirts

2 long sleeve work out shirts

1 pair sleeping pants

2 long sleeve shirts

2 T-shirts

1 white undershirt

8 pairs socks

7 pairs underwear

One pair dress shoes

One pair tennis shoes

Raincoat

Down coat

Ballcap

Miscellaneous

PAPERWORK and Money-Yes!!

Neck Travel Wallet-Only used on travel days

Waist security wallet- Yes!  Hubby wore.  

Small Notebook for taking notes-Yes

Playing cards-No

Gum-Yes

Simple Language Chinese for Adoptive families book-Didn’t use much but we had a good time with it on the plane there!

International Adoption Travel Journal-Yes

What Character Is That? (Book)-No

2 Books (for pleasure reading)-Yes, could have just brought one. 

Compact Bible-Yes

Ipods (2)-Yes

Bubble wrap to wrap breakables if needed for trip home-Yes

Toddler backpack for carryon bag for trip home (we had a seat for our son for the trip home)-Yes, I ended up using this halfway through our trip for a diaper bag.  Much easier to carry a backpack around. 

Earplugs-No

2 Thermarest Pillows-Yes, on flights

2 Chinese Children’s music CD’s and one DVD-Didn’t need, we had put them on our Ipod’s so played on computer.

1 Case of Enfamil Cleft Lip/Palate bottles to donate to orphanage-Yea!!

Food

3, 3 oz. cans chicken-Yes

2, 5 oz. cans chicken-Yes

4 packages instant soup mix-Yes!  We would have brought more had we know.  It was easy to add the canned chicken to these for a meal when we had a busy schedule. 

12 individual packets rice cereal-No

1 box instant mashed potatoes-No

1 sucker for return home for child’s ears-No, he couldn’t eat it.

2 packages happy veggie puffs-No, as our son couldn’t eat them but another family was happy to take them. 

5 single serve pouches of granola-yes

2 boxes of nurturme dried fruit and veggie pouches (36 servings)-Yes!  We supplemented his formula with these.

4 almond butter squeeze packets-Yes

1 Jif packet-Yes

18 instant coffee packets (Vias)-Everywhere we stayed had coffee at the breakfast.  I would still bring a few but much less if you need coffee during the day. 

8 Senna tea packets for constipation (of baby or adult)-Should have used! J

6 packets tazo tea-No

4 travel packets flax seed-No

4 individual packages yogurt bites-Yes, but it was my husband and I that ate them as our son could not. 

1 package yogurt melts-Yes

8 packages instant oatmeal-Had a couple of these but could have brought less. 

6 pouches prune baby food-Yes!  We actually added these to a few bottles and shared with another family to help keep our kids regular. 

6 pouches miscellaneous veggie/fruit baby food-Yes, added to formula

1 canister powdered superfood drink mix-Yes

15 Granola bars-Could have gotten away with 10

1 ziplock bag cheerios-No, son couldn’t eat

6 packs of gum-Too much for us but used for flights

Gifts: Used all gifts and brought a couple extra.

2 Men’s scarves with 2 Deodorants

3 Willow Tree Ornaments with 3 Women’s Razors

3 small purses with gifts inside for aunties

A red envelope to put an American half dollar and Susan B Anthony dollar

6 pieces tissue paper

6 thank you cards

6 gift bags

(We packed all the gifts tightly in a box to keep them nice and to have a box for breakables for the trip home)

This post is dedicated to my soon to be traveling Weinan Mamas and Papas!  Soon dear ones, very soon!  Let me know when the reunion will be!