Officially "OFFICIAL" and an update of our little trooper, Rees

 I'm pleased to announce that it's now officially "OFFICIAL" ... the Certificates of Citizenship arrived for Jonah and Rees!!  FINALLY!!  They really should have been here earlier and we were, in fact, just advised to contact USCIS regarding status (which I did yesterday and was told it would take 7-10 days for them to acknowledge my initial communication attempt).  Oh well!  They arrived today so that is wonderful!!

I doubt Rees will appreciate my memorializing this moment by taking a photo of him with his certificate 'in his condition' but ... well ... I can always take the photo again in a few months, can't I?

Certificate of Citizenship is a very important document and basically acts as PROOF of legitimacy for applying for a birth certificate from the State of Wisconsin and applying for a social security card in their English names.  

Super happy for our boys! This is a grand accomplishment in the process of adoption completion!

Our boy, Rees, is hanging in there and really doing his best to be a trooper!  

We taped his "good" eye today for about four hours in the morning and he really worked hard to keep the other eye open and seeing.  Often, he has to actually use his fingers to manually hold his eyelid open.  Throughout the day, we can see that his eye moves inward and then more central multiple times.  As he gets tired, it moves inward again.  Each day, we pray that his eye gets stronger and he is able to control where it "sits".  The good thing is that it seems to function just fine.  If we cover his good eye now, he can hold the weaker eye's lids and make himself focus on us for at least a few seconds and affirm that he can see us.  Thanking the LORD for this; that is for sure!!

Today, I decided to 'touch' the swollen part of Rees' nose.  It just seems so swollen and red and I was beginning to think that the area is more like a giant blister.  So, I gently pushed on the area (in the photo below, I am referring to the area that is to the left of the incision) and it is definitely filled with fluid, ... very much like a large blister.

So, I looked this up ... via GOOGLE, of course.  I typed in "Fluid at Incision Site".  Based on what I read (and then confirmed by a dear friend/co-worker who is a nurse) it is a Seroma.  

A Seroma is a collection of fluid that builds up under the surface of your skin. Seromas may develop after a surgical procedure, most often at the site of the surgical incision or where tissue was removed.

This evening, the fluid started draining out of Rees' incision.  Quite a bit of fluid came out and we laid him down and used gauze to absorb and wipe away the fluid as it ran down his nose.  Brynn was Mama's little nurse the whole time; she has been such a helper in taking care of Rees and occupying Jonah if we need to give extra attention to Rees.  We have been monitoring his temperature and so far he does not have a fever.  We will keep a close eye on this and definitely tell the surgeon when we see him on Monday (if not sooner).  

Rees is scheduled to have another CT scan on Monday morning and then follow-up with the surgeon.  The surgeon also contact us to let us know that he was putting him on the surgery schedule for next week Wednesday in the event that a "wound revision" needs to be done.  He will know better when he sees Rees on Monday.  So, in the meantime, we are doing our best to hang in there and we "Just Keep On Keeping On."  

We are so appreciative of your continued prayers and all the many words of encouragement from each and every one of you.  Thank-you so much for sticking with us as we continue on this journey.  

Expecting the B-E-S-T and K-I-C-K-I-N-G Fear to the Curb

I've come to realize over the years that I am one of those people who Goes to Extremes or Assumes the Worst in many situations.  What do I mean?

Here's an example: Just this evening, I came into the kitchen to find my 14-year-old shih tzu struggling to keep his back legs upright.  They just kept flopping back to the floor each time he tried to walk or straighten up.  I immediately imagined that "this is IT!" and we're going to have to put him down because something is terribly wrong.  (I did this a few months ago too when he was bleeding from his mouth; it ended up just being a bad tooth)  Well, it turned out, after I picked him up to evaluate and inspect, that his back end was "caked" and matted with poop (sorry for the wording, but really, what other words should I use?) so I had to roll up my sleeves, get him in the tub to loosen it up and then cut away the affected hair.  I was nervous and wincing the whole time (especially with the scissors).  He's fine ... and now he smells a lot better!

I don't know exactly why or when it started but for quite a few years now I have been on the edge of my seat ... waiting for disaster or tragedy to strike.   

THAT'S THE DUMBEST THING EVER, ISN'T IT?

When we decided to adopt again and then quickly went from adopting one child to two children, thoughts raced about finances, time off work, juggling the medical needs of two children at the same time, staying connected as a family and with our other children ... fear controlled my thoughts.

Okay, I know, ... you're probably doubting the "fear factor".  So many have told us how inspiring we are, how what we're doing is so great, how wonderful and BRAVE we are for helping the children ... 

... Can a person be brave and afraid at the same time? ...

... because while the kind words are encouraging, we are still afraid; I am still afraid.  And I ponder the worst.

Rees not being able to see out of his right eye.  The surgeon not being able to build him a nose.  The tumor coming back and ultimately blocking his airway(s).  Continuing to need time off of work and eventually losing my job.  

These are just my extremist thoughts regarding Rees.  Here's where I remind you all that we have SIX other children ... LOL!

Fear can be damaging.debilitating.destructive ... just plain dumb and I have to do battle with it every day. 

And then I am reminded:

       The LORD Himself will fight for you; you need only to be still. ~Exodus 14:14

God moved our adoption process swiftly and caused us to raise more than half the dollars needed to fund the adoption.  God has guided the bonding of the boys to our family, even when it was so difficult in the beginning.  God brought us through the surgeries of our two daughters and we know He is with us as we go through these times with the boys as well.  Over and over, ... He reminds me ... and over and over, I forget ... and then He reminds me again.  I am so thankful that He does not tire of having to repeat Himself to me the way I sometimes do with my own children.  Believing the Truth and Trusting the One who has ordained every one of my days ... is something I have to work at ... every one of my days.  And now I just need to add to my daily "to-do's"  - a) Expect the BEST in all situations and b) Kick fear to the curb!!

Now all of this is not to say that Rees is doing fantastic and I have merely overreacted these past couple days.  That is not the case.  He is doing better and truly showing signs of healing.  He does also have some issues that need to be addressed and we're working through them.  Primarily, at the moment, we are dealing with his right eye not functioning properly so we will now be taping his "good" eye for a few hours per day to try to force him to use/strengthen the other eye.  We "THINK" that he CAN see out of it if he can move it far enough over that the pupil is actually visible but we are not certain as it is a difficult movement for him at this point.  He IS trying; we can tell!  Bright lights bother his eyes and we can also tell when his eyes get tired.

He continues to bleed from his nose and while it is dark in color and has much evidence of clotting, it is still something that needs to be monitored.  His nasal area is still quite swollen and red, almost as if he had a sunburn.  It seems to be 'damaged' and cracking as if burned.  We are only using the peroxide mix to clean it though as there seems to be a chance that Rees has a mild allergy to the antibiotic ointment.

After we saw the craniofacial team today, they called later in the day (left a message) to state that they wanted him to have another 3D CT scan on Monday when he comes in to have his staples removed.  ???  At the appointment only a few hours earlier they had told me that he should have the CT in about a month.  I will be contacting them tomorrow to ask about this and to, of course, get it scheduled.  

Jonah is scheduled to start his treatment at the end of February but we do not yet have his surgery date.  When we know a bit more of the solid information, we will share it.
In the meantime, with all the other things and other people to pray for, my simple prayer request going forward is that I may "Be Still".  

Update: We're Home

Hi folks,

Just wanted to give you all a quick update.  We're home ... got home Monday afternoon.  We are so thankful to be in our Home.Sweet.Home!!  But now ... well, you know how when you've been away and then you get home and you feel like you can totally relax ... but when you totally relax, you find out how exhausted you really are??  Well, that's where I'm at!

Today, Rees and I just hung out, keeping it low ... and really calm.  He's doing pretty good but with him being home, he wants to move around a lot more which makes him REALLY tired too.  Afternoon naps are GREAT and should be a part of every good day.

So, here's some things that need immediate prayer attention and we're hoping you will join with us to pray and try not to panic:

Rees cannot see out of his right eye.  This is the eye that is facing inward.  It may just need time to heal but he's more swollen again today, they eye has turned more inward and it has a film over it that seems to cause drainage.  I keep trying to wipe away the film but he seems to feel discomfort when I do that.

His nose is continuing to bleed, which the doctor did say could occur for several weeks, however, it seems a bit darker and is blocking his breathing and is also clotting/crusting in his nostrils which is also uncomfortable and difficult to remove without causing some discomfort.

Just this evening we noticed that the incision on Rees' nose, where a couple of the stitches were removed, is opening/spreading.  He was bleeding from the spot and it's clear that the skin is separating slightly.  

We will contact the doctor's office tomorrow to discuss these things but want to be praying about it right away.  We will update as we know more and we greatly appreciate you praying with us!!  

More Than We Thought ... Update on Rees (Day 5)

Hi Friends!!  We're still here!  Sorry about skipping a day for updating but I'll make up for it today.  We are still in the hospital (Children's Hospital of Wisconsin) just hanging out and progressing pretty well now.  Our little Rees is such a trooper and we are so proud of him.  We imagine him thinking back to our conversation about going to the hospital and having surgery ... we think he must be saying to himself, "OK!  This is NOT what I signed up for!"  No matter how well we explained to him what he was going to go through, it's impossible for him to really know, ... until it was actually happening to him.  And, of course, he went through More Than We Thought. Isn't that the way it goes, though?  

I had a feeling as we got closer to the day of surgery, thinking I knew what we were going into and familiar with the procedure and recovery process, that God was giving me a little 'tap on the shoulder' or 'whisper in my ear' ... "It's not exactly the same.  More will be experienced.  And more will be required."  So, while there have been many new differences from when Molly had this surgery, none of the new differences have been terribly shocking or surprising.  

There is the little voice inside me ... the one that likes to put me into a "panic" ... that starts asking me the various questions that lead to anxiety.  But then there's the other voice ... the Voice of Truth ... the One that tells me to TRUST and take it One Day at a Time.  Whatever will be, will be ... I knew this when we started to process to adopt Jonah and Rees.  I knew it was going to be A Lot, that it would require A Lot of us, from us.

Yesterday, we had visits from several of the surgical staff.  Of course, Dr. Denny came by and he talked to us (in his street clothes) for about 30 minutes.  He checked on Rees and told us that there were some things "we need to talk about".

He talked with us about the various issues that Rees is dealing with as he heals and gave us more detailed explanations as to why those things are happening the way that they are.  

Rees' eyes have been such an issue because Dr. Denny actually moved the eye sockets manually when he brought his forehead and face in/closer together.  Because of this forced movement, he had to detach and reattach the ligaments that are around the eyes.  This is why he was bleeding from his eyes and why they were so painful.  This is also partially the reason that they have been so swollen as well.  Because he manually moved Rees' eyes, he told us that there is a chance that he will be cross-eyed or blurred vision once his eyes are open.  We can now see, as his eyes are beginning to open, that his right eye is going inward quite a bit and there's a bit of yellow-ish film over it.  His left eye seems to be centered well.  Interestingly, prior to surgery, Rees' left eye was a slight "wanderer" and now is more centered.  Anything can still happen at this point so continued prayers for his vision and eye muscle coordination is very much needed.  

As far as Rees eating very slowly and not talking, Dr. Denny really helped us to understand what it must be feeling like for Rees inside his mouth.  This type of surgery really affects so much!  First, the incision that is across his head, literally goes from one end to the other.  In the photo below, you can see how it is on the left side of his head.  The incision goes all the way across and ends above his right ear exactly the same.  Right above his ears is where the joint connects for his jaws.  When he talks or chews or swallows, he can feel that and it is tender, even painful, which is why he has been very slow to eat or open his mouth.  His teeth are in a completely different place than they used to be.  That's right ... so he needs to get used to how his teeth meet.  He may bite his tongue or the inside of his cheek and as this happens, it might slow him down because he doesn't want to do it again.  We knew that Rees had a very small incomplete Cleft lip (so small that we were not even considering correcting it) but there was no indication that he had a cleft palate.  Even after he had the CT, I don't think they mentioned anything about it ... BUT ... yesterday, Dr. Denny DID say that there is, in fact, a cleft palate and that because of the surgery, Rees may actually become aware of it because there is now officially an opening.  Prior to surgery, the hamartoma tumor may have been obstructing the cleft.  So, this is something that will be taken care of during one of Rees' future surgeries.

So, next, Dr. Denny talked about the hamartoma.  He told us that he has only had one other patient with something similar and that because the type that Rees had is so rare it has been difficult for him to find any literature on it.  Now, to put this in perspective, the photo below is of Dr. Denny.  GREAT Guy!  

Excellent Surgeon, Medical Director, Professor, ... he's been around the block a few times.  You can see that, right??  But in ALL his time, he's only had one other patient with a similar anomaly.  That tells us it really is quite rare.  He told us that he's NEVER seen a patient like Jonah ... oh boy, ... but that's another time.  So, he's trying to look into this more and he's hoping and we're hoping that MORE can be found.  In the meantime, Rees will have another CT scan and MRI in about six weeks.  They will use these scans to create a new "base" and then he will have more scans in the next few months or so to determine if there are any changes, to see if the tumor is re-growing, which Dr. Denny said IS POSSIBLE.  That could create problems. that could UNDO everything Dr. Denny did.  We hope that won't happen.  We hope and pray that it stays away!

Rees was also visited yesterday by the Anesthesiologist.  She stopped by because she wanted to see how Rees was doing.  She also was in her street clothes ... so impressive.  She talked for a bit and was happy to see him doing a lot better.  She said it was remarkable because he had to have his blood volume replaced "just shy of TWICE" during the surgery.  Lightbulb!!  Ohhh ... that makes sense after she said it but it hadn't clicked before.  The average blood volume of an adult is 10 pints of blood but Rees is not an adult.  His blood volume is about half that at 5 pints and they had to give him 9 pints of blood during the surgery.  WOW ... that really is a lot!! We are so thankful to our designated blood donors and also to all the other unknown donors who are faithful to give blood on a regular basis.  It's SO IMPORTANT!!!  We are so blessed just by a simple blood donation.

Rees felt good enough to play in the children's play room on his floor so he went in there a couple times.  It was in this room that he actually tried to use his fingers to pry open his eyelids because he wanted to see the toys.

For dinner he had some butterfly shrimp and he even started feeding himself more.  This was great to see.  A big improvement!

Today, Rees can open both of his eyes his appetite is improving!

They have even let him be "unhooked" to the IV pump as long as he takes in the required amount of fluids.  When he isn't drinking enough from his cup(s), then we just get him a popsicle to help him out a bit.  So far ... so good.  It's really nice to have him free of the POLE.  We even got to go down to the first floor and look at the fish aquarium.  Rees really enjoyed this so we did it a couple of times.

He's also playing with some toys that were brought for him by our neighbor ...

... and his Auntie Jen-Jen came today with Brian and the kids and got to spend some time with Rees as well!!  Visits are SO NICE!!

And speaking of nice visits ... I feel terrible because I did NOT get a photo and I'm usually pretty good about such things ... but we had a really nice visit from Della and Jerry from Green Bay.  Their visit was our first time meeting them.  Yep, that's right!!  They read the news article about us and we started chatting via email recently.  Their son lives near Milwaukee and because they were going to be in the area, they asked if it would be okay to stop by.  It was SO NICE to meet them and they were able to meet ALL the kids everyone was at the hospital at that time.  They brought lovely gifts for the children and we are just SO THANKFUL for them.  They have blessed us immensely and their visit was a bright moment in a disappointing day (because we weren't able to go home).

The LORD has continued to bless us.  We may be dealing with some challenging stuff.  We may be tired (exhausted, even).  We may not know exactly what is going to happen going forward.

BUT we know that God is Good.  He is with us.  He is not unaware of what's happening today nor what will happen in the future.  We are trusting Him.  We will keep trusting Him.  

Prayer Requests:

Continued strength and endurance and good health for us as caretakers.

Continued improvement for Rees, especially for his eyes.

That the tumor will not return.

Compassion and understanding from everyone in our household, especially when we get Rees home.

Strength and healing for our daughter, Molly, who continues to fight sinus issues and colds since returning from China and now has a form of Shingles.

Beautiful Prayers and Encouraging Words

We have been receiving several emails and messages with beautiful prayers and encouraging words.  We SO GREATLY APPRECIATE all of this!  It really DOES help!!  We want to remember these words so this post will be dedicated to all of those people's prayers and words of encouragement.  We may continue to add to it as days go by ... it's more for our benefit but words are powerful and may just positively impact a dear reader as well.

To all: Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost. Rom. 15:13 Love and prayers, Jerry and Rose

Thank you so much for including me in your beautiful but difficult journey. Be assured of my prayers and also the prayers of about 20 women (mothers and grandmas) who belong to our Scripture Group which meets every Wednesday morning. You and your family are definitely in our prayers.

Aunt Joan

Thank you for the update.. it sure helps that Molly and Brynn have gone thru this.. YOU  have more idea what is happening and not happening.. at leas t you hope so.. We are continuing to pray that God’s will be done.. and to remember that God IS good and knows the beginning and the ending.  Mary Ann

Thank you again, for the beautiful update. The good and gracious Lord is surely walking this journey with you. Our prayers accompany you as well.

Aunt Joan

Dear Lord,

I lift up Rees today asking that you strengthen his body and prepare his body for the upcoming surgery. 

Lord, I ask that you prepare each doctor and each assistant so that each one is refreshed and at his or her best when the surgery starts. Enable them to disregard any personal distractions and fully focus on brave little Rees. 

I pray for each one to be clear thinking and fully able to receive wisdom from you as the surgery is in progress. May each decision be correct and each procedure be accurate.

Lord, I am asking for your protection during the surgery. I pray for the outcome to be your very best. 

I also pray for protection and provision during the recovery period. I lift up prayer that his recovery is quick and his outcome is successful.

You are our Creator, and you are our Sustainer. 

I give you respect and honor this day.

In Jesus' name I pray,

Amen
Samara 

Darlene and I pray for you today that you may "call upon the Lord in the day of trouble and He will deliver you and you will glorify Him" (Ps. 50:15).

Peace and love in Christ Jesus our Lord, Mitch and Darlene. 

Please be assured that we are praying, praying, praying. We ask that the Holy Spirit will give us His wisdom as we intercede for all of you. "Likewise the Spirit also helps our infirmities; for we know not what we should pray for as we ought , but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And He that searched the hearts knows what is in the mind of the Spirit, because He makes intercession for the saints according to the will of God. And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Rom. 8:26-28 With love and prayers, Jerry and Rose

Our women in our Scripture Group prayed very intentionally today for a successful surgery for Rees and for all your family. I am keeping them posted on your posts to me. My first thought is to say I'm sorry that things were so difficult the night before surgery and I can feel your exhaustion and frustration and that each of you in his/her own way is being tested to the max. However, at the same time I know as you do also, that Jesus the Healer and Comforter is in the midst of your tiredness, frustration and concern. He will sustain you. He knows how weak each of us is. He knows He has to hold us up when it all seems like "too much."

Even though you have experienced so much already with all the girls went through and even though you are people of faith, you have resources within you because you are God's creation, that you haven't even used yet. Keep calling upon them and as soon as you can, have a good,long sleep.

You are in our prayers each day.

Aunt Joan

Kimberly, my dear girl, I hear such pain and sadness in your words.  I know things have not been perfect with the boys

and that many difficult days may lay ahead.  But I also know that you are doing God’s will in caring for Jonah & 

Rees, and also Molly & Brynn.  He has promised to give you grace sufficient for the day.  And while some days you

may feel you’d like an extra helping of grace, He knows just what you need.  Give in to Him, cry unto Him and let Him

sustain you.  You must accept your weaknesses as well as your strengths.  You cannot be all things to all people and 

you cannot control everything.   He has greatly blessed you and given you great responsibilities, and He will strengthen you

and Brian going forward.    Make sure to take time each day for yourself to be quiet with God.  He needs to restore your energy and spirit.

I am praying for you and pray that Rees’s surgery is a success.

I am completely over my surgery now, so please don’t hesitate to ask if you need help with anything.  Even if it’s driving

one of the girls to a practice, etc.  I am here for you as best I can be.  Hang in there sweetie.

Love, Joyce

May God send his healing help for Rees,  and his strength for all of you.      Hugs,    Della 

Thank you Lord for blessing this boy with an amazing family.  Please bless him again.  Bless him with peaceful rest.  Bless him with a great medical team.  Bless him with an easy recovery.  Bless him with healing.  Bless him for your glory.  Amen. - Lisa

Thank you for the update and great photos!  So happy to hear that you experienced a positive and encouraging day.  While there may be some setbacks, we know that God will continue to guide, encourage and strengthen you all. 

We are continuing our prayers for a speedy recovery for Rees, and peaceful rest and strength for all. 

Now here is a great AWANA verse for you:  "For everything that was written in the past was written to teach us" - (but the verse continues with these inspired words) - "so that through endurance and the encouragement of the Scriptures we might have hope." 

And one of my personal favorites:  "The Lord is my strength and shield, my heart trusts in Him and I am helped . . . " Psalm 28:7a

Blessings to all of you!

Janet

I was at Mass today and praying for you and lo and behold, the Psalm proclaimed today was Psalm 34,

                    From all their distress God rescues the just.

                        Glorify the Lord with me,

                            let us together extol his name.

                        I sought the Lord and he answered me

                            and delivered me from all my fears.

                        Look to him that you may be radiant with joy,

                            and your faces may not blush with shame.

                        When the poor one called out, the Lord heard.

                            and from all his distress he saved him.

                        The Lord has eyes for the just,

                            and ears for their cry.

                        When the just cry out, the Lord hears them,

                            and from all their distress he rescues them.

                        The Lord is close to the brokenhearted;

                            and those who are crushed in spirit he saves.

It's so beautiful and powerful:  "The Lord is close to the brokenhearted; and those who are crushed in spirit he saves."  You know he is with you.

Love,

Aunt Joan 

                    

Your email sounds exactly how anyone going through the emotional, psychological and physical suffering you are going through should sound if a person is being upfront about honest. You're in a bad state and who wouldn't be? But I would only urge you to keep on praying. God is present. God hears. God loves. I think the thing about prayer for most of us is that we pray that things will turn out the way we want them to turn out and, of course, that is never the way of doubt and suffering. We generally want what we want when we want it. But the truth is God's way is often not a bit like our way, not to punish us, but to make us go deeper into trusting Him especially when trusting seems foolish.

Since we are all made up of body and soul and not just soul, the physical toll often makes even our best intentions fall short but since Jesus was body and soul, He understands that all too well and sometimes all we can offer Him is our sense of our own failings. Faith is made stronger in weakness.

I am certain that you will continue to pray and I am certain that the rest of us will only prayer more intentionally and constantly knowing that you and Brian are on a very difficult road indeed. Even Jesus needed help carrying His cross.

Love,

Aunt Joan

I am so glad you are getting strong again. Strong enough to write this. A long time ago, someone told me that God would never give me more then I could handle. And that goes for you too. Carry on my dear. Your doing a great job. Love Mom

My heart truly goes out to you. Your whole family is going through a lot right now. 
I WILL continue to pray for all of you.

(Do not feel pressure to update the blog. Do so
only when you feel that you have the extra energy.)

Prayer For Strength in a Song

O Strength and Stay (John Bacchus Dykes; Ambrose of Milan)

O Strength and Stay upholding all creation,
Who ever dost Thyself unmoved abide;
Yet day by day the light in due gradation
From hour to hour through all its changes guide.

Grant to life’s day a calm unclouded ending,
An eve untouched by shadows of decay,
The brightness of a holy deathbed blending
With dawning glories of the eternal day.

Hear us, O Father, gracious and forgiving,
Through Jesus Christ Thy co-eternal Word,
Who, with the Holy Ghost, by all things living
Now and to endless ages art adored.

Praying God will put His hedge of protection around Rees and that He will sustain. comfort all of you.Love and prayers, Jerry and Rose

The Lord bless and keep you,

Grant you courage and strengthen you.

The Lord be gracious to you,

The Lord give you His peace.

Mitch & Darlene

Hi Kimberly - I've been following your blog, but haven't commented before...(I think I haven't). But, I've wanted to on every post. Hopefully, prayers count! I feel so sad for your sweet son and yet I'm so inspired by how he's handling his surgery. I'm sure that there's things going on "behind the scene", but he sure keeps a smile for his Mama's camera. Know that a Sister in Christ is praying for Rees and for all of your family. You all inspire and encourage my Faith in Him!
Hugs from Minnesota - Jo

Day Three of Rees' Surgery

Today was a good day in a lot of ways.  Rees had several small victories that are necessary for his healing and ultimate release from the hospital.  He got up and walked around a few times.  We would take him for a walk in the halls and he would walk down and then back up the hall before returning to his room.  This was great!!  We were very proud of this accomplishment!

He also went to the bathroom several times and after a little interventional assistance, he DID poop!  Yep, you read that correctly ... I actually typed the word 'poop' ... this was a serious WIN for the team!!  HOORAY Rees!!  He moved into other foods besides popsicles too.  He had the universal healing food ... Chicken Noodle Soup (YUM!) and he had a bit of jello.  Although he doesn't really have a food restriction anymore, we can tell that his teeth and palate may hurt, but are definitely sensitive by the way that he ate these things.  In addition to the other things mentioned in the previous posts about what was done inside Rees' skull, ... brace yourself ... his palate had to be broken.  Remember how it was explained that Rees' eyes and skull were actually moved inward?  Well, when this is done, the palate also has to be broken to accommodate the shift, which in turn also causes a gap between his two primary front teeth.  This VERY SAME THING was done with Molly's first surgery and a very BIG PLUS to this is that she has the most beautifully straight teeth now (without the help of orthodontics).  So it's just another upside to the difficult surgeries they have to go through.

The 'downer' of the day is that Rees' eyes are VERY SWOLLEN and he is unable to open them at all.  We now realize that he must have actually been able to see at least slightly yesterday; maybe the eyes were open just barely because he was able to maneuver and guage our movements better.  Today, he has had to completely rely on us for EVERYTHING.  When he has been up walking, he very noticeably cannot tell the direction of things.  We need to communicate very clearly to him so he knows which way to move, when to open his mouth, when we are going to touch him and where.  We can tell he was a little more frustrated about this.

We did have a nice break in the day when our neighbors came by for a visit.  It was great to spend a little time with them and Rees was very content being held by Joyce for quite a while.  We were so blessed to be able to leave the room for a bit to get some lunch and when we returned they prayed for us before leaving so they could go get ready to have our other "littles" spend the night with them so that both Mama AND Baba could stay with Rees together at night.  It is a challenge with only one of us here since Rees wants to be held so much.  He prefers to be with one of us in the chair as opposed to laying in his bed by himself.  This probably has a lot to do with the fact that he cannot see so he is relying heavily on "touch" to keep him calm, comfortable and content.

With Rees' eyes being so swollen, the surgeon recommended we put warm compresses on his eyes.  One of his eyes has a lot of what I call "yellow gunk" (I know, nice medical terminology) and the other eye is pretty caked with blood from when it was draining so much the first day.  The compresses would aid in loosening up the blood and 'gunk' and then hopefully he could attempt to open them.  He was not thrilled to have us do this as his eyes are what seem to be what bother him the most.  If we ask him if his head hurts, he says "no".  If we ask him if his nose hurts, he says "no".  But if we ask him if his eyes hurt, he immediately nods to the affirmative.  So, after attempting to do this a few times with him getting more and more agitated, I simply asked him if he wanted the nurse to do it instead of mama ... I said "I can go get the nurse right now if you'd rather her do it instead of mama" ... I'm so mean ... but that seemed to do the trick.  We have been able to get a noticeable amount of 'gunk' off his eyes, though he has not been able to open them just yet.  Maybe tomorrow.

So, here's something incredibly interesting ... We just discovered today that Rees has a pretty significant scar on the back of his head that we did not know about before.  You can see it in the photo below.  Interestingly, one of his reports from China stated he had to have stitches on a gash on his face about two years ago.  We thought that was really strange as he didn't have any scars of signs of having stitches anywhere on his face.  We guess they meant the back of his head ???

And, I'll end this post with a little bit of humor and delight.  If you recall this photo from Rees' CT scan, you'll see that right above the center of Rees' teeth there was a small opening where a "cleft" was starting and just above that opening was a tooth ... yes, actual tooth ... a floater tooth.

When the surgeon removed all that bone from the middle of his face, he also removed the floater tooth ... and we get to keep it as a souvenir!!!

Check it out!  It's an actual bicuspid with roots and all!!

To top that off, the really sweet thing is that they OR Staff gave Rees a little certificate that says "The Tooth Fairy visits the Operating Room for REES!"  And they even gave him a few dollars as tooth fairy money!  

We've really been blessed with excellent doctors, nurses, care partners and even housekeeping staff ... we are so thankful for the great care that everyone has been taking of Rees and even us.  They are so attentive and helpful and do all that they can to make our time here as comfortable and pleasing as it can be.  

**Tomorrow, we're hoping to report that our little guy has opened his eyes!!  

Again, we thank you ... so many of you ... for all your prayers and words of encouragement.  It has made such a difference to each day!  Thank-you ... so much ... Good Night, God BLESS ...

Day Two of Rees' Surgery

Well, folks ... today was a pretty good day!  It went fairly calm and quiet for the most part beginning when Rees' tubes and suctions were removed.  That was a great feeling for both him and US!  You could just see the "calm" come upon him once the tubes were removed.  

Rees accomplished a lot today.  We think he is doing pretty great!!  Although he isn't speaking, he did begin nodding either to the affirmative or the negative if we asked him a question.  He was more responsive once they removed his sedation meds and he became aware that we were there.  Once he realized this, he wanted to be held by one of us for most of the rest of the day.

He got up a couple times, walked half-way down the hall and back and was even able to go 'potty' ... all while he was still in the ICU.  

He almost looks like he is smiling, doesn't he??

Pure contentment ... in a popsicle!

Towards the end of the day, Rees was able to "check-out" of the ICU and he was moved to another floor.

Grandma and Grandpa Prendergast came for a visit as well as Molly, Brynn and Jonah.  Rees seemed to enjoy this as he kept tapping his foot, wiggling his toes and waving his feet side to side.  

It was somewhat humorous but nice to know that he was not very uncomfortable.

I think we will both sleep better tonight.  I'm looking forward to tomorrow ... a new day to accomplish more tasks and be thankful for the mercies of the LORD.  

We are so blessed by so many wonderfully encouraging words and beautiful prayers that are being prayed over our family and our sweet, brave little boy.  

We are honored to share what the LORD is doing in and through our lives and how He is blessing our socks off by the strength and resiliance of a child.

Day One of Rees' Surgery

Hello everyone!!  It is the evening now of the day of Rees' surgery.  I'm alone ... except for Rees who is pretty heavily sedated and the various hospital staff that come into Rees' room at least every hour but sometimes more often.  It's quiet ... except for the constant beeping and compression noises coming from the many machines and pumps that are hooked up to Rees and monitoring him.  

But let's start with the beginning of the day.  It actually started and went quite well.  We arrived at the hospital on time and got started almost right away.  

We were taken to the prep room and changed Rees into his gown.  He was very quiet but seemed really calm.  

Baba held his hand ... as promised.  Mama did too (when she wasn't taking photos.)

Humorous boy that he is smiled nice and BIG for this photo I wanted to take of him and Baba ... but then didn't want to smile for a photo with me (little stinker)!

So, I got this photo of him after threatening to get into the hospital bed with him.  

Apparently, that is not a pleasant thought to him ... hahaha!!

It wasn't long before the nurse came in to give his "silly juice" ... interestingly, it did not make him "silly" or act goofy like our daughters did when they had their surgeries.  

He just got VERY CALM and RELAXED!!

 

We were then directed to the Surgery Waiting Room and told that we would receive an update every two hours.  There was a large screen that listed patients by a six-digit number showing the status of each child's surgical visit.  In the photo below, Rees is the only "GREEN" status showing that his procedure was in-process.

During the middle of the day/procedure, we were SO BLESSED to hear from one of our new and dear friends, Anissa, who happened to be at the hospital today on assignment.  She contacted us and then stopped in to spend some time with us.  It was SO WONDERFUL to chat with her and pass the time.  Before she left, she prayed over us and our family and for Rees and the whole surgical and healing process.  We are so thankful for the opportunity to visit with her.

The surgery was complete at exactly the 6-hour mark!!  Talk about punctuality!!

Dr. Denny took us aside to let us know how everything went and he gave us a lot of information.

So, if you're not interested in the "medical/scientific" aspect of the surgery, you may want to skip down to the part where you start to see photos again.  

I KNOW YOU'RE NOT GOING TO DO THAT, THOUGH, RIGHT??

Okay, so not necessarily in order of how it was told to us but as best as I can piece together from my earlier notes ...

... leave it to Rees to surprise us all and be different than we expected.  Dr. Denny said (and the recent MRI confirmed this) that Rees did not/does not have an Encephalocele as we believed him to have.  Externally, he looked very similar to Molly and Brynn, who were both born with Nasal Encephaloceles.  Dr. Denny said Rees' facial anomaly is more likely the result of a Hamartoma.  

Taken from eMedicine.com, a Hamartoma is "a benign (noncancerous) tumorlike malformation made up of an abnormal mixture of cells and tissues found in areas of the body where growth occurs. It is considered a developmental error and can occur at a number of sites." 

He said there was not a "mass", per say, but a lot of fatty tissue that had to be "SCRAPED" away (which he says they just don't normally do) from under the skin and around the bone.  There was LOTS of bone, very thick and very solid bone ... great from a skull perspective, however, he literally just had too much of it, even in places that it wouldn't normally be.  This aligns with the thought that it was really a Hamartoma.   An interesting thing Dr. Denny also told us is that Hamartoma's can also come back, so Rees may have to have periodic CT Scans to monitor his bone growth.  Bits of tissue and bone were sent to the lab to be evaluated but he did mention that the lab doesn't usually like to deal with bone so we'll see.  Rees had a very large head and forehead, where Dr. Denny removed a lot of bone.  He kept reiterating that there was just a lot of bone.  He cut the portion of bone out that was between Rees' eyes and nostrils.  This is the portion of bone that was mostly affected by the hamatoma.  He then resectioned his forehead (removed a rectangular portion of bone from the center of Rees forehead) and basically slid it down and grafted it to become Rees' nasal bone (which he actually did not have before, despite the large bony mass).

In doing this, Dr. Denny also moved both of Rees' eye sockets one-half inch inward (is that the right word?), towards his nose, that is.  As he put it, that's HUGE!  He also had to make him two new airways because, again, he had to remove the large bony defect that was where his nose should have been.

Okay, so back to some photos and what's happened to Rees since the completion of his surgery.  It took quite a while for them to get him into his room set-up.  He is hooked up to A LOT of equipment!

There is a very large monitor in his room that shows ALL, I mean ALL, of his stats.  It has everything on it and later in this evening, I learned that the screen is for OUR benefit and WE CAN TOUCH IT!!!

Any of you medical people out there ... you know what all this means!!  With me being the freaky numbers person that I am ... well, let's just say I am eating all these numbers UP and watching them constantly!

Okay, so here's where we get into the MEAT of this moment that I am in right now, as I sit here at almost 9:30pm (8 hours post-surgery).  You might notice in the photo above, there is a section in the middle that has colored boxes and also a colored stacked graph that is mostly RED and has two other colors but in much smaller proportions.  This shows the amount of blood that he lost (the red color) and the other two amounts show what was given back to him in various forms.  Now, it's a little deceiving because it makes it look like he is SHORT on blood supply but he is technically NOT.  The average adult has 10 pints of blood in his or her body. One unit of blood is roughly the equivalent of one pint.  During the surgery, Rees continuously lost blood and he was given NINE UNITS of blood (the two from designated donors plus an additional seven units).  The nurse said that his blood supply was completely lost and replenished during the surgery.  WOW!!  I cannot even wrap my head around that!!  

Near the bottom of the screen in the above photo there is a section that says "Problem List".  It lists 'hospital' because he is post-surgery.  It also lists 'occular hypertelorism', which accounts for the fact that his eyes were very wide apart and were physically moved.  This is noted because Rees may have vision problems or be cross-eyed for the first few days.  In some instances, the problem can continue and would need to be corrected by further surgery so this is something they will have to evaluate.  The third point noted is 'acute respiratory failure'.  This is another hard one, especially to see it actually noted in relation to our little Rees.  

Due to the amount of blood loss and the fact that Rees was continuing to 'bleed' and 'ooze', Anesthesia said it was safer to keep Rees intubated to help him, which also meant that they would keep him sedated.  This was done to help him rest better and to be sure to get enough oxygen.  The tube has a "bubble" ... or a cuff, as they call it.  This would prevent Rees from aspirating if, say, he was to vomit, which is something that happened after Molly's first surgery.  And let me tell you, that was HORRIBLE so I was a little relieved that they were doing this.  

Rees has continued to lose some blood, though, and this has been a bit hard.  He continued to 'drool' blood and saliva and blood was also pooling in the sides of his cheeks and running out along his neck.  

Our very awesome nurse, Karly, had to come in frequently to suction out his mouth and throat.  

They felt that he was loosing more blood than he should and so they inserted another tube with a suction to keep the blood from draining into his stomach.

They also made the decision to add to his blood supply again.  Again, I learned something NEW!  They did not just give him whole blood OR EVEN red blood ... no kidding!!  They gave him what is called Cryoprecipitate, also called "Cryoprecipitated Antihaemophilic Factor", "Cryoprecipitated AHF", and "cryo" for short, is a frozen blood product prepared from plasma.

Guess what??

It is not RED.

It's YELLOW!

This evening, Rees' numbers have shifted a lot.  His heart rate has been in question as it is lower than they would like to see it.  The issue could be related to the numerous meds he is currently being given so they did reduce one of them a short while ago.  He also has a slight fever but they are keeping a very close eye on him.  The night nurse came in and he is VERY CAUTIOUS and constantly checking on Rees.  This makes me feel like I can at least try to relax and get some rest.  They are hoping to remove the tubes in the morning so that will prove to be an eventful start to the day.  For all of you who weren't getting the facebook group updates all day, thank-you for your patience, for your prayers and kind words.  You get the LONG, drawn-out, EXTENDED recap of our day but we hope you feel well informed and that you will continue to keep us and our little guy in your prayers.

Good-night!!