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.)