1/31/19
To my dearest son, Oz.
I have known this day would inevitably arrive since we first learned of your cleft lip nearly a half a year ago. I know that surgery means anesthesia, surgical tools, and probable physical pain and for these reasons alone, you can understand the unease that I've felt all of these days in the anticipation of today. What I want you to know is that far outweighing the givens, the most difficult part of today is having to say farewell to your beautiful, God-given face and smile as you will not return to my arms from the surgeon the same as when I hand you over. I have brainstormed both rational and irrational excuses to avoid today, to postpone it or perhaps bypass it entirely, but despite mental delay, here we are on the day you will receive your forever smile.
While you're much to young to realize it, today is a milestone in your life. [Your dad and I are fully aware of its importance in ours]. You may be the person in focus, but as your parents, please always know that we are forever throughly entwined in this journey with you. I believe God has equipped you with innate bravery, courage and strength to persevere through each step you take and while I self-doubt my levels of these desirable traits on most days or circumstances, when it comes to you, my son, I unwaveringly will stand with you and walk each step of this road by your side. There will be pain, blood and tears along the way, but I encourage you to look for the positives and purpose in God's plan as it is there and when focused on, will turn your perception of your cleft from a hinderance to a genuine blessing.
I have stared at your face for 78 days and it will forever imprinted in my heart and engraved in my mind, but I can't wait to see your first forever smile! How lucky am I to get two smiles from you to always have and hold in my heart? Jackpot lucky.
Love always,
Mom
1/31/19
Day #1
We arrived at the surgical tower promptly at 6:30am and while he hadn't ate for several hours, Oz was a CHAMP while we waited for surgery and had several pre-operative visits from various medical professionals. Ironically [or purposefully] our surgical nurse is a cleft mama herself! She and I had a good heart-to-heart that morning and I couldn't have asked for a better person to help me best prepare for that hour before surgery. I got in about a billion kisses before the last knock at the door came and it was time for me to hand him over. This was the moment that I had replayed in my mind countless times and I was prepared for the emotional turmoil and waterworks show and it played out just as I had always imagined it would. After a moment to catch my breath and stop the tears, Derek and I moved to the waiting area where we would anxiously wait the hour and half we were quoted for time in surgery. This time went remarkably quickly and before too long, we were whisked away in a consultation room to meet with Dr.Munson and be briefed on how it all went. Dr.Munson and his PA gave us a great report, surgery went awesome, and we returned to the waiting area for a short bit longer while they transported Oz to the recovery area where we would then get to reunite with him.
.....And here is where I was NOT prepared.
I could hear Oz's wails from a distance as we entered the recovery area and my eyes frantically bounced cubical to cubical, searching for which one he was located in. My heart beats were erratic and about bursting out of my chest in my frenzied search and desire to hold my baby once again. And then, there he was, screaming in the arms of a nurse attempting to console my distraught child. I desperately reached for him, embracing his tense little body in my arms. His tears of pain? confusion? fear? anger? hunger? whatever it may shot daggers in my heart and the instantaneous gushing of my tears came in replacement of blood. My heart ached liked it has never ached before and I silently begged and negotiated with God to transfer all of Oz's turmoil over to me for just a momentary hiatus from his current reality.
We were transferred to Oz's room at Sanford Children's Hospital where we spent the next 24 hours monitoring his vitals, managing his pain and attempting to master the craft of feeding after lip revision surgery (NOT an easy task). Derek and I have very different perceptions of how Day 1 went. I guess I base my conclusion off of Oz appearing swollen from the IV fluids running through his system, his frequent bouts of intense screaming that I believe were in response to pain from his surgery or anger at me for putting him through such a thing and very little sleep received by any of us. Derek thinks that because all of these are expected reactions to surgery, it was a good day. I know it was 'normal' but I would never describe that first day as a good day for any of us involved.
#Cleftstrong is a hashtag used frequently by many cleft mamas in my Facebook support group and up until today, I've solely enjoyed its positivity. Today, this experience, has brought a whole new understanding to #cleftstrong and its connotation to the physical and emotional strength it requires for these children and their families to face the years of medical intervention a cleft diagnosis entails. I've had an initial look at what's ahead and the #cleftstrong message is one of radiating encouragement that has brought me comfort in relating with other cleft families and pride in our ability to persevere through these difficult experiences. Laugh all you want, but I'm currently envisioning myself in warrior stance with my cape trailing my back, prepared to take this day and everyday forward head-on, conquering each adversity without hesitation. Yup, you can see it too, can't you? :)
2/1/19
Day #2
Gratefully, we were discharged from the hospital fairly early the next morning after Dr.Munson's PA stopped by and gave us the stamp of approval, walked through what to expect the next several days and gave the instructions on how to care for Oz's incisions. For the next 10 days, we are to continue to either use the special bottle given to us OR syringe feed (my preference), NO pacifier (Lord, help us), and use of no-nos at all times unless we're prepared to restrain his arms ourselves.
It was a much better day today with Oz's swelling going down, his eyes open and more alert and even getting some babbling out of him. We are still trying to figure out the best way to go about feeding which can be a frustrating task for both Oz and us, but at least his appetite is returning! He still seems uncomfortable at times, struggling to relax for long stretches. His fuse can be pretty short and it doesn't take much for him to go from content to full-on rage in the matter of a second and at that point, can be pretty difficult to get him to calm down. We're religiously staying on top of pain medications so I'm guessing that these responses are more due to him being hungry and frustrated than pain (at least that's what I'm telling myself). Ultimately, we're making strides forward and I anticipate Day #3 bringing even more improvement.
A HUGE thank you to my parents for their efforts in helping us out the last couple of days - cooking, cleaning, laundry, playing with the twins, helping with Oz's care, etc., the extra hands to assist and support us has been AMAZING, I'm so appreciative! I'm also so touched by the outpouring of messages from friends and relatives, thinking of and praying for Oz and us throughout this whole ordeal. These gestures have brought great comfort to me and I'm thankful for the love and support from so many.
To my dearest son, Oz.
I have known this day would inevitably arrive since we first learned of your cleft lip nearly a half a year ago. I know that surgery means anesthesia, surgical tools, and probable physical pain and for these reasons alone, you can understand the unease that I've felt all of these days in the anticipation of today. What I want you to know is that far outweighing the givens, the most difficult part of today is having to say farewell to your beautiful, God-given face and smile as you will not return to my arms from the surgeon the same as when I hand you over. I have brainstormed both rational and irrational excuses to avoid today, to postpone it or perhaps bypass it entirely, but despite mental delay, here we are on the day you will receive your forever smile.
While you're much to young to realize it, today is a milestone in your life. [Your dad and I are fully aware of its importance in ours]. You may be the person in focus, but as your parents, please always know that we are forever throughly entwined in this journey with you. I believe God has equipped you with innate bravery, courage and strength to persevere through each step you take and while I self-doubt my levels of these desirable traits on most days or circumstances, when it comes to you, my son, I unwaveringly will stand with you and walk each step of this road by your side. There will be pain, blood and tears along the way, but I encourage you to look for the positives and purpose in God's plan as it is there and when focused on, will turn your perception of your cleft from a hinderance to a genuine blessing.
I have stared at your face for 78 days and it will forever imprinted in my heart and engraved in my mind, but I can't wait to see your first forever smile! How lucky am I to get two smiles from you to always have and hold in my heart? Jackpot lucky.
Love always,
Mom
1/31/19
Day #1
.....And here is where I was NOT prepared.
I could hear Oz's wails from a distance as we entered the recovery area and my eyes frantically bounced cubical to cubical, searching for which one he was located in. My heart beats were erratic and about bursting out of my chest in my frenzied search and desire to hold my baby once again. And then, there he was, screaming in the arms of a nurse attempting to console my distraught child. I desperately reached for him, embracing his tense little body in my arms. His tears of pain? confusion? fear? anger? hunger? whatever it may shot daggers in my heart and the instantaneous gushing of my tears came in replacement of blood. My heart ached liked it has never ached before and I silently begged and negotiated with God to transfer all of Oz's turmoil over to me for just a momentary hiatus from his current reality.
We were transferred to Oz's room at Sanford Children's Hospital where we spent the next 24 hours monitoring his vitals, managing his pain and attempting to master the craft of feeding after lip revision surgery (NOT an easy task). Derek and I have very different perceptions of how Day 1 went. I guess I base my conclusion off of Oz appearing swollen from the IV fluids running through his system, his frequent bouts of intense screaming that I believe were in response to pain from his surgery or anger at me for putting him through such a thing and very little sleep received by any of us. Derek thinks that because all of these are expected reactions to surgery, it was a good day. I know it was 'normal' but I would never describe that first day as a good day for any of us involved.
#Cleftstrong is a hashtag used frequently by many cleft mamas in my Facebook support group and up until today, I've solely enjoyed its positivity. Today, this experience, has brought a whole new understanding to #cleftstrong and its connotation to the physical and emotional strength it requires for these children and their families to face the years of medical intervention a cleft diagnosis entails. I've had an initial look at what's ahead and the #cleftstrong message is one of radiating encouragement that has brought me comfort in relating with other cleft families and pride in our ability to persevere through these difficult experiences. Laugh all you want, but I'm currently envisioning myself in warrior stance with my cape trailing my back, prepared to take this day and everyday forward head-on, conquering each adversity without hesitation. Yup, you can see it too, can't you? :)
2/1/19
Day #2
Gratefully, we were discharged from the hospital fairly early the next morning after Dr.Munson's PA stopped by and gave us the stamp of approval, walked through what to expect the next several days and gave the instructions on how to care for Oz's incisions. For the next 10 days, we are to continue to either use the special bottle given to us OR syringe feed (my preference), NO pacifier (Lord, help us), and use of no-nos at all times unless we're prepared to restrain his arms ourselves.
It was a much better day today with Oz's swelling going down, his eyes open and more alert and even getting some babbling out of him. We are still trying to figure out the best way to go about feeding which can be a frustrating task for both Oz and us, but at least his appetite is returning! He still seems uncomfortable at times, struggling to relax for long stretches. His fuse can be pretty short and it doesn't take much for him to go from content to full-on rage in the matter of a second and at that point, can be pretty difficult to get him to calm down. We're religiously staying on top of pain medications so I'm guessing that these responses are more due to him being hungry and frustrated than pain (at least that's what I'm telling myself). Ultimately, we're making strides forward and I anticipate Day #3 bringing even more improvement.
A HUGE thank you to my parents for their efforts in helping us out the last couple of days - cooking, cleaning, laundry, playing with the twins, helping with Oz's care, etc., the extra hands to assist and support us has been AMAZING, I'm so appreciative! I'm also so touched by the outpouring of messages from friends and relatives, thinking of and praying for Oz and us throughout this whole ordeal. These gestures have brought great comfort to me and I'm thankful for the love and support from so many.
Days 2-4
Honestly, days 2-4 were very comparable with little variation.
Days 5-6
THE WORST! I had expected that each day would bring improvement, even if it was just a slight movement forward, so when Monday was miserable due to ALL DAY fussiness (mostly screaming) and very little sleep for any of us, I was frustrated. I didn't know if his screaming was because he was in pain, was overly tired, was possibly teething, etc., no idea and no soothing attempts worked. I put a message into our doctor on Monday afternoon, begging for feedback and/or suggestions of what we could try. Unfortunately, I didn't hear a response that day and Monday ended the way it started, a terrible, awful, no good, very bad day.
Tuesday didn't bring any relief and with my mom leaving for home that morning, I was presented the solo challenge of tending to Oz. When I still hadn't heard from the doctor by that afternoon, I made a pleading phone call to his office for some sort of response before the end of the day. While they preferred that we not return to normal bottles until day 8, they said to go ahead and try feeding with a normal bottle instead of the syringe and see if that would help any. HALLELUJAH! Oz ate nearly around the clock for the next couple of days and I felt like a total neglectful mother as he was clearly STARVING before, poor thing. So, this was a huge improvement to forego the frustrating syringe feeding, but it sadly wasn't the ticket of relief for sleepless nights and regular, but manageable fussiness.
Days 7-9
While we had reduced the Tylenol doses and greatly improved feeding quality and quantities, caring for Oz around the clock was exhausting. You can't cuddle him due to the location of his wounds so there are only a few positions to hold and burp him. You can't leave him unattended, ever, as he will surely flail his arms and smoke himself in the lip/nose which will result in understandable screaming and because you can't cuddle him, the screaming will last just that much longer. We are supposed to have the no-nos (arm restraints) on 24/7 until our post-op appointment, but because they keep him from bending his elbows they 1) make him even more frustrated 2) make him use more force to flail his arms up which make the blows to the face even harder. So, basically not helpful at all and Derek and I have mutually agreed to ditch the no-nos and just do our best to watch and control Oz's arms.
Prior to surgery, Oz was sleeping good 4 hour stretches at night. Post surgery resulted in him waking every 2 hours. Did I mention I was exhausted?
Day 10
I don't even want to type this in the chance I jinx the goodness that has come our way, but I think we are FINALLY normalizing! Oz had a great day with minimal fussy spells and a far more restful sleep than compared to the last 9 days. It was AMAZING and I'm praying we have a repeat day today.
Day 11
Oz got his stitches and nose stint out today! We will begin special ointment application next week and a gentle scar massage for approximately a month's time to aid in the lip 'dropping' and to lighten the redness of the scar and surrounding area. We will have a follow-up appointment with Dr. Munson in August for purposes of evaluating his lip and nose revision, but to also then begin prepping and planning for cleft palate surgery which is anticipated in October/November.
An additional update for the day, Oz revisited his GI doctor and is now 12 lbs. There has been weight gain, but he is still at the 6th percentile soooooo we now have to up the calories of the Elesure formula. And here's the deal, as much as I had hoped to provide breastmilk to Oz for the first 6 months like I had with the twins, the dairy intolerance threw that for a loop. And as much as I had hoped to go dairy free and replenish my freezer stash in the next few months, I've ultimately came to the decision that I need to take something off of my plate and pumping is the thing I'm saying farewell to. Oz is doing well on the Elesure formula and it would be months before I'd even get to introduce my milk to him. Pumping takes hours from each day with the time to pump itself, cleaning the equipment, storing the milk, etc. and honestly, that time is hard to come by and if I have the choice, I'd MUCH rather give it to my children. It's been a mental battle, a decision I've bounced back and forth for weeks now, but I'm calm and satisfied in my final decision and that tells me that I've made the correct one for myself at this time.
Look at that face! <3
Days 5-6
THE WORST! I had expected that each day would bring improvement, even if it was just a slight movement forward, so when Monday was miserable due to ALL DAY fussiness (mostly screaming) and very little sleep for any of us, I was frustrated. I didn't know if his screaming was because he was in pain, was overly tired, was possibly teething, etc., no idea and no soothing attempts worked. I put a message into our doctor on Monday afternoon, begging for feedback and/or suggestions of what we could try. Unfortunately, I didn't hear a response that day and Monday ended the way it started, a terrible, awful, no good, very bad day.
Tuesday didn't bring any relief and with my mom leaving for home that morning, I was presented the solo challenge of tending to Oz. When I still hadn't heard from the doctor by that afternoon, I made a pleading phone call to his office for some sort of response before the end of the day. While they preferred that we not return to normal bottles until day 8, they said to go ahead and try feeding with a normal bottle instead of the syringe and see if that would help any. HALLELUJAH! Oz ate nearly around the clock for the next couple of days and I felt like a total neglectful mother as he was clearly STARVING before, poor thing. So, this was a huge improvement to forego the frustrating syringe feeding, but it sadly wasn't the ticket of relief for sleepless nights and regular, but manageable fussiness.
Days 7-9
While we had reduced the Tylenol doses and greatly improved feeding quality and quantities, caring for Oz around the clock was exhausting. You can't cuddle him due to the location of his wounds so there are only a few positions to hold and burp him. You can't leave him unattended, ever, as he will surely flail his arms and smoke himself in the lip/nose which will result in understandable screaming and because you can't cuddle him, the screaming will last just that much longer. We are supposed to have the no-nos (arm restraints) on 24/7 until our post-op appointment, but because they keep him from bending his elbows they 1) make him even more frustrated 2) make him use more force to flail his arms up which make the blows to the face even harder. So, basically not helpful at all and Derek and I have mutually agreed to ditch the no-nos and just do our best to watch and control Oz's arms.
Prior to surgery, Oz was sleeping good 4 hour stretches at night. Post surgery resulted in him waking every 2 hours. Did I mention I was exhausted?
Day 10
I don't even want to type this in the chance I jinx the goodness that has come our way, but I think we are FINALLY normalizing! Oz had a great day with minimal fussy spells and a far more restful sleep than compared to the last 9 days. It was AMAZING and I'm praying we have a repeat day today.
Day 11
Oz got his stitches and nose stint out today! We will begin special ointment application next week and a gentle scar massage for approximately a month's time to aid in the lip 'dropping' and to lighten the redness of the scar and surrounding area. We will have a follow-up appointment with Dr. Munson in August for purposes of evaluating his lip and nose revision, but to also then begin prepping and planning for cleft palate surgery which is anticipated in October/November.
An additional update for the day, Oz revisited his GI doctor and is now 12 lbs. There has been weight gain, but he is still at the 6th percentile soooooo we now have to up the calories of the Elesure formula. And here's the deal, as much as I had hoped to provide breastmilk to Oz for the first 6 months like I had with the twins, the dairy intolerance threw that for a loop. And as much as I had hoped to go dairy free and replenish my freezer stash in the next few months, I've ultimately came to the decision that I need to take something off of my plate and pumping is the thing I'm saying farewell to. Oz is doing well on the Elesure formula and it would be months before I'd even get to introduce my milk to him. Pumping takes hours from each day with the time to pump itself, cleaning the equipment, storing the milk, etc. and honestly, that time is hard to come by and if I have the choice, I'd MUCH rather give it to my children. It's been a mental battle, a decision I've bounced back and forth for weeks now, but I'm calm and satisfied in my final decision and that tells me that I've made the correct one for myself at this time.
Look at that face! <3
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