One Week

It is hard to believe that exactly one week ago at this same time, we were sitting in the waiting room of Medical City Children's Hospital with our family anxiously awaiting to hear from the nurse letting us know that Field's surgery was going well. It was the most nerve wracking, anxious, and surreal feeling I have ever had. Kissing him goodbye and handing him over to the nurse to take him back to the OR was one of the hardest things I have ever had to do. Kirk and I were confident that we had made the right decision to follow through with surgery and that we had chosen the best team of doctors to perform the surgery. But there was still this empty, uneasy feeling of worry and doubt that we just could not shake. 

The only way we got through those agonizing 4 and a half hours of waiting was by handing over everything to God..all of our fears, doubts, worries, concerns..we had to let go of them all and place our full trust in God to take care of our baby. And I believe that it was through all of your prayers that God gave us the strength to do this..the strength to trust in Him alone and fully place our faith in Him. Over and over, I just kept picturing in my mind God's hands cradling Field as the surgeons worked on him. It gave me such comfort to know that God was in that operating room holding Field and guiding each movement of the surgeons' hands. I also felt His presence in the waiting room with Kirk and me and our families..sitting there beside us with His arms wrapped around us.

Field is recovering faster than we ever imagined. Just four days ago, his eyes were still swollen shut, but today, his swelling and bruising have gone down so much that, aside from his incision, you can barely even tell he had surgery. He is back to crawling all over the place, pulling up, and playing like his old self...but his sleeping is still not great. Sometimes I wonder if he is scared to let himself fall asleep for fear that he may not be able to see when he wakes up.  But Dr. Fearon told us that it could take a few weeks for him to get back on his normal sleeping and eating schedule, so I guess we just need to be patient. After all, he did have major skull surgery just one week ago!

Saturday morning at Aunt Marcy's house in Madison:

Playing with cousin Walker:

So glad to finally be home strolling around the neighborhood and taking a bath in my own bathtub!

Sunday (5 days post op):

Monday (6 days post op):

Today (just one week after surgery!):

Open eyes!!!

First of all, I want to thank all of you for your prayers and outpouring of love and support over the past few days. This week has been so emotionally and physically draining for Kirk and me, as well as for our families, and I know the only way we have made it through is by the strength and courage God has given us through all of your prayers.  He has been so faithful to Field and to us through this experience, and we will be forever grateful for the doctors and nurses at Medical City Dallas, and for all of you who have reached out in so many ways to show us love and support.

Wednesday and Thursday were hard..almost harder than getting through the surgery itself.  We were so relieved that the surgery was over and was successful, but it was heartbreaking to see our baby so confused and helpless.  By early Wednesday morning, Field's eyes were completely swollen shut.  Swelling was beginning to increase around the rest of his head too..which is normal.  Dr. Fearon told us the swelling would probaby peak between 36 and 48 hours after surgery.  We were able to move out of PICU to a regular room by mid-morning Wednesday.  It was great to have more space and be able to have more family come back, and especially for Field not to be hooked up to all the monitors and IVs anymore.  But as his swelling increased, it was more difficult to keep him comfortable and content.  His head was so heavy with fluid that he could barely hold it up.  He wanted to be held constantly..and most of the time, I was the only one who could comfort him.    He did seem to love the wagon rides around the hallways and outside to the garden though.  

The doctors made their rounds Thursday morning and told us that everything looked good and we would be able to leave the hospital as soon as the nurse helped us bathe him and shampoo his head (which is the only care we have to for his incision).  We were so glad to be able to leave, but a little apprehensive of how Field would do back at our hotel.  To our surprise he fell asleep as soon as we put him in his carseat.  Back at the hotel, our moms took turns strolling him around the hallways and parking lot.  As long as he was moving, he seemed pretty content.  He would just get so frustrated and scared when we put him down to try to let him crawl or play with his toys, but we knew as soon as he could get his eyes cracked open the tiniest little bit, he would be happier.  He slept much better than we had expected last night, so when we woke up this morning, we decided to try and make our way back to Mississippi today.  

Dr. Fearon was kind enough to let us bring Field by his office at 12:30 to look at him and reassure us that everything was healing as it should and answer some final questions for us before we got on the road.  He told us that he thought we would see Field's eyes open a little by this afternoon or tonight.  We stopped in Shreveport around 4:00 to get some coffee.  As soon as I got Field out of the car and walked into Starbucks, Mrs. Marilyn noticed his right eye barely peep open..the tiniest slit, but it was the best feeling ever!!!  He immediately began to smile at us and reach for our keys and cell phones, and by the time we walked out of Starbucks, his left eye had barely peeped open too!  I've been sitting with him in the back seat smiling and playing peek-a-boo the rest of our drive home!  It's hard to tell from this picture, but in person you can barely see his little blue eyes peeping through!

The Red Wagon

Update 3/19/14 (via friend):

Words cannot express the strength of this sweet little boy! He is doing incredible and had so many great moments today. The love that fills his hospital room is truly overwheming with his dear parents and both sets of grandparents doting, kissing, and passing him off to each other. The peace of the Lord is so incredible to watch in Catherine and Kirk! Your prayers are working! Kirk and Catherine are absolutely overwhelmed by your love and support! People have loved in every way possible.

Summary of today:

*Field was moved out of the PICU to a nornal room which is much more comortable and can fit his whole support team:)

*the swelling has increased quite a bit but just as expected. It usually peaks from 48-72 hours and we are at 48. He is now unable to open his eyes due to swelling. All very normal for this surgery.

*He got to go outside on a wagon ride and loved it

*He is most comforted in mamas arms and responded to daddy today saying "bye,bye" several times and the tears of joy were flowing by all

*He continues to nurse well but did not keep down his last bottle tonight

*He got many of the wires, cords, and IVs out today which has made him more comfortable (I clearly do not know medical jargin)

*Kirk and Catherine were able to get out and grab some dinner tonight while the grandparents held down the fort. Field was comforted in their arms the whole time.

Prayers:

*Field would be able to rest tonight

*Swelling and discomfort would decrease quickly

*He would not have anymore nausea

*that his little raspy voice would clear up from the tubes during surgery

*that Kirk and Catherine would get some REST! They are completely spent both emotionally and physically

* that Field, Catherine and Kirk would experience the peace that surpasses all knowledge that only comes from Christ!

Oh Father in Heaven, You know the deepest parts of our hearts! We lay this precious little boy and family in your arms and pray you would meet them where they are with your surpernatural comfort and peace!

 

Pics from today:

 

 

We can breathe now!!!

Surgery is over and we are just waiting on them to bring Field up to the PICU. Dr. Fearon just came up and talked to us and said everything went "smooth as silk"! He didn't lose much blood at all, so no blood transfusion was necessary. Praise God from whom all blessings flow. We can't wait to go back and see our sweet boy!!! Thank you again for all of your prayers and support.

Everything going well..

We just talked to the nurse and she said neurosurgeon is finished removing the bone and Dr. Fearon is doing his work shaping Field's new forehead now. Everything going smoothly and Field is doing great! Will update again soon!

Also, Kirk and I appreciate all of your thoughts and prayers more than you will ever know. I wish I could respond to every single text, facebook message, comment, etc., but please know that we have read them all and they have given us so much peace and comfort today.

Surgery Underway..

Just wanted to give everyone an update.  We got to the hospital at 6:00 this morning to begin the registration/pre-op process.  Field hadn't had anything to eat since 7:00 last night and nothing to drink since 3:30 am, but he was still as happy and content as could be!  We hugged and kissed our sweet boy goodbye around 7:30 am and were told to call the OR at 9:00 to check on the progress.  We talked to the OR nurse right at 9:00 and she said they were having trouble getting his art-line in.  This is how they monitor his blood pressure, so she said they would not proceed until they get it.  She also said it is not uncommon to have trouble getting this line in, in "well-nursed" babies with a lot of fatty tissue covering their veins and arteries...so I guess I should feel good about this! ;)  We will check back soon to see if they were able to get this in and proceed with the surgery.

***Update: we just talked to the nurse again and they were able to get the art-line in and the actual procedure began at 9:55***

Here are a few pics from this morning...

Waiting with Marni and Mimi

 Has his Moo Cow lovie ready to take to surgery with him!

 Walking back to hand our baby over to the amazing doctors and nurses that are taking care of him

And Field with his daddy yesterday during our pre-op appointments...

And at dinner last night!

Feeling Blessed

We made it to Dallas today.  Brings back lots of fun memories of when we lived here!  But mostly we are just thankful that God gave us safe travels, and we are ready to get this surgery over with and behind us and get back to Tupelo.

We have felt so much love and support this past week from so many friends and family members and can never thank all of you all enough. Like I have said before, there is no way that we could get through this without all of your prayers!  God has already shown us so much of His faithfulness throughout this journey, and we know that He will carry Field and our family throughout this week and give us strength, comfort, and peace during the challenging days ahead.

For anyone who comes across this blog who may be going through the same diagnosis and surgery with their child or loved one, there is a great organization that offers care and support to families of children with craniosynostosis. It is called Cranio Carebears.  It was started by two moms whose babies had craniosynostosis.  You can go to their site and register for a care package to be sent the week before your child's surgery.  I was so touched when I received this in the mail last week. The box was packed full with so many useful items for the hospital for baby and for mommy (snacks, candy, toiletries, footed pjs, hat blanket, and socks for Field, etc) but my favorite was a prayer chain made of ribbon from other children and families who have gone through this and a note that explained to hang this on Field's hospital bed after surgery.

We have received so many other extremely thoughtful gifts, notes, calls, messages, and words of encouragement this week and we want to thank each one of you from the bottom of our hearts. We are truly blessed with such wonderful and caring family and friends and thank God for all of you in our lives.

Tomorrow is a full day of pre-ops, so praying that Field sleeps peacefully tonight in the hotel and that we all wake up rested and recharged with strength and courage ready to face the week ahead. 

Field and daddy at Mi Cocina (one of our favorite tex-mex spots when we lived here) tonight!!!

Two band aids...

for two finger pricks.

For the past three weeks, Field has been getting Procrit injections to help boost his red blood cell production. Dr. Fearon has done several studies and highly recommends that his patients take Procrit prior to surgery in order to increase their overall blood volume and decrease the chances that they will need a blood transfusion after surgery. Blood loss is one of the riskiest factors of cranio surgeries, so we wanted to do everything we could to ensure Field's body was producing more blood. Before each Procrit injection, the nurse has had to check his hemoglobin level to make sure it is below 15 (we want it to be as close to 15 as possible by next week, but if above 15, the Procrit would pose a greater risk of him developing a blood clot or other serious side effects). 

Last week his hemoglobin level was 11. When we went in yesterday for his final Procrit injection, the nurse pricked his finger and his hemoglobin level read 10.5. My heart sank. All I could think of was that the Procrit was not working and we had been doing all of these extra pricks and shots for no reason. I know there are so many sick babies and children who go through much, much worse, but it is so hard for me to watch my baby's sweet little fingers and legs get pricked and poked, knowing that he has no idea what is going on. The nurse didn't think that 10.5 sounded right, so she pricked another finger and was able to draw out a little more blood that time and when she ran it through the machine again, his hemoglobin read 13.4. Praise the Lord! It had gone up 2 full points from last week. My little man is one tough cookie! He actually didn't even flinch when she pricked his finger.. but the Procrit injection? That's a different story!!! 

Dallas Bound

I have been pondering the thought of starting a blog for a while now...first, to keep our family and friends updated on Field's surgery and recovery...but just as importantly so that I may reach out to other families who have gone through this before, or who may face this situation down the road.  The blogs and stories we have come across of other families' journeys have helped tremendously in preparing our hearts and minds for what we are about to face, and (not that I wish this on anyone else) I can only hope that I will be able to provide support and encouragement for another family going through this one day.

Our baby boy, Kirk Winfield Thoms, Jr., was born on May 10, 2013, one day before his due date.  He was a healthy 7 pounds, 15 ounces and completely stole our hearts at first sight. Right away, we noticed the shape of his forehead, but didn't really think anything about it. Nor did the doctors or pediatrician on call bring anything to our concern.  I think we all just assumed it was from his positioning in the womb and birth canal and that it would eventually round out.

It wasn't until his 4 month well checkup that our pediatrician began to show concern.  She noticed that his soft spot felt smaller than normal, and this, along with the shape of his forehead, made her question if there was an underlying problem.  She briefly mentioned something about "skull sutures fusing prematurely" then said the words "craniosynostosis" and "surgery".  That was all I needed to hear..I went straight home and began researching and looking up everything I could.  I wanted to know all about it...the different types, treatment options, everything.  This is when I came across Dr. Fearon's name, a craniofacial surgeon in Dallas, Texas.  He is very highly regarded in his field, and his center in Dallas is one of the top craniofacial centers in the country.  After reading his website backwards and forwards, I decided to email him and send him pictures of Field's head.  He is 98% accurate in diagnosing craniosynostosis just by physical examination.  He responded within two days, with a very long, detailed email letting us know his thoughts and opinions.  He told us that he believes we have a very normal son who just happens to have trigonocephaly due to metopic craniosynostosis.  Trigonocephaly refers to the triangular shape of the forehead and is caused when the metopic suture of the skull fuses prematurely.  Aside from the physical appearance, this can restrict the brain from growing properly and cause increased pressure on the brain which can lead to severe headaches, vision problems, and developmental delays later in life.  There is no way to know for certain if and when these problems will arise, so surgery is most always recommended when the case is moderate to severe.

So we made a consultation appointment for November and took Field (6 months old then) to Dallas to meet with Dr. Fearon.  We were very impressed by him, as both a person and a doctor, and he did recommend that Field have CVR (cranial vault remodeling) surgery between 10 and 12 months of age.  He let us know that he would be happy to take care of him, or if we wanted to use another doctor, he would still be happy to answer any questions and concerns we may have and to email or call him anytime.  We already knew that if we decided to follow through with surgery, we definitely wanted him.

Kirk and I prayed for guidance, talked about it everyday, talked about it with our parents, our families and our friends, and prayed, and prayed more.  We ultimately knew that Field needed the surgery and we felt God leading us to Dallas.  Although our journey is long from over, we have already felt God's presence and guidance in such a huge way through all of this.  There is no way that Kirk and I would have the strength and courage to make these decisions on our own...decisions to put our baby through such a major surgery...without God holding our hands and showing us every step of the way.

Field's surgery is one week from yesterday, on Tuesday, March 18 at 7:30 am.  We will head out to Dallas this weekend, along with our parents.  We have a full day of pre-op appointments on Monday, and then will check into the hospital at 6:00 am Tuesday morning. The surgery should last around 4 hours, and if all goes as planned, he will spend one night in PICU and then be moved to a regular floor for the second night, and hopefully be able to leave the hospital on Thursday.

We are so blessed and thankful for all of the love and support shown to us by our friends and family already.  Like I said before, we would not be able to get through this without the strength God has given us through all of your prayers, and we continue to covet your prayers for our Field and for his team of doctors and nurses as we prepare for his surgery and recovery.

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."  

-Psalm 139:13-16