Perserverance and Strength

Romans 5:3-4  "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope."

I need to be rejoicing~rejoicing even in suffering.  I'm not to rejoice that I am suffering, but rejoice and praise my Savior even in my time of suffering, even when I might not feel like it.  Sometimes that is incredibly difficult to do.  In no way am I mad or angry at God, but wonder why all this is taking place in my life right now.  Hoping and praying that something amazing will come out of all of this.  What will my future with my children look like? I wish I knew, but I do know that I will ALWAYS love them, ALWAYS be there for them, ALWAYS encourage them, ALWAYS bring them up to love and honor the Lord, ALWAYS listen to them, and ALWAYS be the best Mom I can be for them.  I have hope that God will give me the ability to ALWAYS do those things and so much more. He would not present me with these trials if He wasn't going to give me the perseverance to get through these trials which will give me the character to be everything for my children, which is my hope. Maybe the character God thought I lacked, He is teaching me through this. Maybe if I had the character He wanted me to have or trusted in Him more God would not have presented me with these trials.  Am I to blame for all of this???  I can live with that for the pain I have to go through, but it hurts more to think that because of what I lacked in my faith, my children have to suffer. I know that things could get worse and we could be suffering so much more.  Therefore I do rejoice daily that I have my children and that every day with them is a blessing. 

James 4:13 "I can do all things through Christ who gives me strength"

Now is the time where I am getting weary.  I am becoming drained emotionally, physically, and even sometimes spiritually.  I know that I should "pray without ceasing" (1 Thessalonians 5:17).  Being in constant prayer has always helped me keep my focus on Him, why then do I stop some days?  Why is it so difficult to rely fully on God when I know it makes my days emotionally easier?  There is so much on my plate that at points I can barely think straight.  I need His strength right now and His wisdom as to decision making not only with Xavier, but in every aspect of our lives. 

Prayer requests:  Wisdom for the doctors and myself to make the right decisions to help Xavier thrive.  Comfort for Sydney and Savannah knowing that there are so many people love them, and that even though I am away from them at the moment I still love them with all my heart.  For myself, as I sleep very little, that I continue to stay healthy in order to take care of my children the way I need to.  And for decisions that need to be made regarding our future in the upcoming months.   

Don't judge a book by it's cover

The same comments keep rolling in~"he looks great" and "maybe he has reflux".  I want to clarify these comments.  Yes, on the outside he does look great most of the time.  What people can't see in pictures are his episodes of difficulties breathing or the inside of him.  I feel as though when people are making these comments that they think I am making all of this up and that he is healthy.  They wouldn't label him failure to thrive if he was healthy, and he wouldn't be on lasixs if he was healthy.  The comment about the possibility of him having reflux has been ruled out!  I have known from the beginning that it was not reflux for several reasons.  Xavier had NEVER even had the slightest bit of spit up in his first month of life.  He always kept his food down.  It wasn't until we got into the hospital where they put him on medicine and began putting tubes down into his stomach that he started having problems with the vomiting.  He is never in pain at any point when eating or prior to vomiting.  They had put him on Zantac the second time we were in the hospital, even against my wishes, because they wanted to rule out the reflux, but he still vomited.  I know I am not a doctor or even a nurse but I do know my children and have some knowledge what signs to look for when they are ill as to what may or may not be causing something.  Like I have said in the past, my mothers intuition has NEVER been wrong in all of this.  If I was not reluctant and pushed for him to stay the second hospital stay when they said that "he looked fine" he would have possibly died at home.  I know my son and I know when something is not right with him or even "normal". 

I did not want to be back in the hospital this third time around, I thought we were all done for a little while, but I know at some point those holes in his heart will need to be closed.  He may not need them closed right now, but my feeling is that they will need to be.  The Lasixs is keeping the fluid out of his lungs, and his body has become dependant on the Lasixs because those 2 holes in his heart are pumping fluid into his lungs.  They are going to try to wean him off the Lasixs in the next few days to see how his body reacts.  There is a conference on Monday where they will discuss with all the heart surgeons, the cardiologists, and regular doctors~a team of about 20~to put some ideas out on the table as to his issues and how to solve them.  Unfortunately I am unable to attend this conference because they do discuss other patients at the same time as well.  I pray that Monday they come up with some solid tests that can confirm some of the problems as to the poor growth and why he is Lasixs dependant, because right now those are the two main issues. 

As far as looking into getting a second (actually it will be a 4th) opinion from a cardiologist in Boston, I am in the process of doing that.  I need to obtain his records and send the disk of his echocardiogram via FedEx to them and fax over his records.  The doctor there will then review them and give me his opinion.  Basically what I am looking for from him is his opinion whether he thinks those holes will close on their own.  Right now the tally is 2 for no, they won't close on their own, and 1 for they will close on their own.  His surgeon who failed to do the first 2 surgeries correctly is the one who is stating that "he is confident that they will close on their own".  With him saying otherwise will be him admitting that he had made another mistake in the second surgery, which I guarantee he is not willing to admit, because admitting it the first time was most likely very difficult.  I understand that Xavier had the LARGEST hole in his PDA that anyone has ever seen or heard of, but that doesn't mean that the surgeons shouldn't be trained to deal with those situations.  He should have been prepared, while Xavier's chest was open in the operating room as well as even the next day before they closed him up, to make sure that his PDA was properly ligated and there wasn't blood flowing through there still.  There is just no excuse for it to still remain open.  Even if the holes in his heart were the sole cause of him not being able come off the Lasixs the doctors state that his VSD is more the cause than the PDA.  One reason they are reluctant to go back in right away to do more surgery is because the VSD is going to be a very difficult surgery!  The VSD is in such a difficult spot in the heart to get to, that is why they weren't able to go after it in the second surgery.  But, if it has to be done, it has to be done. 

No, Xavier is not struggling for his life right now, but like I said previously he is Lasixs dependant to stay alive, and is growing very slowly. He does not reach his daily calorie intake nor does he even reach his daily required fluid intake. 

Please pray for wisdom for all involved and that they will make the best decisions as to what to do based on what HE needs to get well, and not thinking of how they can keep another lawsuit away from the hospital.

Hopefully this clarifies things a little more for everyone.  If you have any further questions please feel free to ask!  :)

I just love this little boy with all my <3!  His smile is amazing!



He is so stinkin' cute!  My little man!



Siblings

Someone had mentioned to me yesterday something I actually had not thought of, the fact that Sydeny could possibly be resenting or even hating her brother for being born.  The thinking was that ever since Xavier was born, Daddy left, and Mommy spends so much time in the hospital with Xavier. Possibly thinking that if Xavier wasn't born Daddy would still be living at the house and Mommy would never have to leave for periods of time. She has never said anything to make me think that she does feel this way, nor has she ever once been mean or tried to hurt him in any way.  She has always been very loving toward him. Sydney always wants to hold him, kiss him, and is so excited when she can get down on the floor and "play" with him. I completely understand that she is only 4 years old and processes what is happening in her own way, but she is doing a wonderful job being such a great big sister and she even calls herself "little Mommy" or she will say call herself little "Mariffa" (she can't quite say her "S" yet, so translation "Marissa") :)   I am very proud of the way she is acting through all of this and how much I see her growing up as a wonderful little girl!

So happy to hold him!

Loving on him!

Recap on Easter

I was so thankful I was able to celebrate Resurrection Sunday with all 3 of my beautiful children!  I was a little concerned that we would be in the hospital and the girls would have to be without their own traditions of coloring eggs and reading of the TRUE Easter story with their Mom.  God kept Xavier healthy enough so he too could spend his first Easter at home where he should be! 

We had a busy yet wonderful Easter together!  Sunday morning we went to our Easter Breakfast at our church where of course Savannah ate like a grown man.  Every time I turned around she was eating another blueberry muffin or a cinnamon roll!  Sydney had such a servants heart that weekend wanting to help cook the breakfast as well as setting up.    She was a great help and I am so pleased that she enjoys serving others! We then went to worship our risen Savior at Easter service and have more wonderful fellowship.  After church the kids and I went over my sister-in-laws house where we enjoyed a delicious meal, had an egg hunt, and just enjoyed spending time together with several other family members. 

We got home so late that the girls didn't get a chance to do their egg hunt at the house, so we prolonged it until the next morning where they also got their Easter Baskets.  A thoughtful friend had graciously given a gift card to Daffin's Candy Store so that the kids would be able to have nice Easter baskets this year~Thanks so much!!!  Savannah was getting the hang of the egg hunt by the time we had it at our house, seeing as now this one at home was her third one in 2 days!  Sydney of course is an old pro at that, and Xavier just watched and took notes on what to do for next year. :)



We tried the "no mess" way of coloring our Easter eggs this year~Mom liked this way :)



Sydney dying some of her Easter eggs~they were able to pick which colors, pour the dye inside, add an egg and spin it around until it was covered.

Savannah giving it a whirl.

I also got them the q-tips with coloring in them as well so they could write on their eggs~not something I recommend, the dye just poured out from the tips as soon as you opened it up.

Savannah did a little drawing too, as well as trying to eat the q-tip :)

The day before Easter I read the girls the true Easter story, which then lead to reading time~Sydney with her Bible and Savannah with the Easter story book.

Which ever way Sydney laid, Savannah had to lay as well to read.

Not sure if they were truly reading or just rolling around the floor with their books :)

That Saturday Sydney's school had an Easter egg hunt for all to attend.  The girls hit the jackpot~and now we have plenty of candy until Halloween!

Thrilled at their loot! :)

Loving her Easter breakfast!

YUMMY!

Our family picture on Resurrection Sunday.

They finished their egg hunt, now they patiently awaited their Easter baskets!

Xavier with his basket.

Checking out the goods!

Look at that smile~she found the chocolate~ :)



Now time to play with all their new stuff!



We are back!

It happened, we returned back to the place I never wanted to see again~Pittsburgh Children's Hospital.  In my mind I hoped and prayed we wouldn't return, but deep down (maybe mothers intuition again) I knew we would be back and he would need surgery again.  His pediatrician is on the same page as I am and says that he will need his PDA completely closed and possibly his VSD closed in order to solve all of his problems. He has been so incredible and going above and beyond what he should be doing! If it wasn't for him we wouldn't be here today trying to figure out and solve all of Xavier's problems that he is dealing with even post surgery.  The next step while in the hospital is to test for other possibilities as to why he isn't eating well and now vomiting.  The other thing to explore is that why after this last surgery why they had to increase his medicine when they should have been able to decrease and potentially get rid of it all together.  Obviously the holes in his heart are causing problems and pushing more fluid into his lungs for him to need his medicine. Pray they don't play the "wait and see" game, and they take action immediately.  Please pray that God gives the doctors wisdom to find the answers so this little guy can get 100% better and go home and thrive with his big sisters! 



My little guy all snuggled and fast asleep~he's had a long day!



Xavier's Words...

Someone shared this youtube video with me~made me cry!  Thinking about how Xavier would say these same exact words to his father someday when he can talk and understands all that he has been through the past 2 months.  I think the fact that Will wasn't there for him while he was in CHF (congestive heart failure) and those times when he shouldn't have made it through, will effect Xavier someday.  That's not something that can be forgotten, maybe forgiven, but never forgotten! 



http://www.youtube.com/watch?v=kORzKKadrII

My Graduate!

Unfortunately I was unable to see any of Sydney's swim lessons this session, but I was able to go to the very last one and see everything she has learned in the past 6 weeks and watch her get her certificate!  She is doing amazingly well, even compared to the last session she did in the fall!  She is jumping in the deep end and come up without being in a panic, going underwater without holding her nose, floating on her back, and swim with a flotation device!  I am so proud of her, this is something she truly loves and gets so excited about doing. 

Getting her certificate...yes she is in her pajamas~just easier to bring her home ready for bed rather than getting her dressed after swim to then have her get undressed after a 3 minute car ride home. 

Calling Dr. Savannah!

This afternoon Xavier had his visiting nurse come to see him, and I tried to schedule Savannah's nap to when she was going to be coming, but of course she ran late and as soon as she got to the house Savannah woke up~from her 4 hour nap!  

She just makes me laugh so much!  I think because she is so petite that I don't expect so much from her, but the things she comes out with just make me laugh.  The nurse was examining Xavier, listening to his lungs and his heart when Savannah walks over to Xavier with my stethoscope and put it around her neck and begins to "listen" to Xavier as well.  Someone in this family is bound to be a cardiologist! :)

Making sure baby brother sounds good!

Reunited

I have my girls home again!!!  The girls stayed one more night last night at their Aunt Candi and Uncle Wendell's house because they had colds and were on antibiotics, and I just felt it was better for Xavier for them to just stay one extra night to get over their colds a little more before being reunited!  They come home in the morning and we just played all day long!  We spent some time outside enjoying the warmer weather.  It was so nice to play with them and enjoy their happy faces!  They both looked like they had grown a few inches since I saw them last!  

My tiny, smiley Savannah!

Sydney, my beautiful, "little mommy"!

Homecoming!

It was finally that time, time to head back to the "normalcy" of life.  Normalcy is so relative lately.  I am so blessed to have my "normal" life again, by that I mean having my 3 children in my own house day in and day out, cooking, cleaning, running errands, driving Sydney to school and swim lessons~I LOVE MY LIFE!  All my life I wanted to be a stay at home mom and now I have that.  Even if I wanted to return to work, I couldn't.  Xavier can not be put in day care because he is extremely susceptible to illnesses and it could put him right back in the hospital.  Due to the horrible decisions Will has chosen to make he had lost his job a month and a half ago and has not provided for me or his children at all, but God is good~God has and continues to provide! 

Our homecoming was awesome!  The thoughtfulness of others never ceases.  We pulled up to my house (Thanks Beth for the ride home!) and there were "welcome home" balloons tied to my porch as well as balloons throughout my house!  (Thanks Kim and Katie!)  It was also wonderful to come home to a nice clean house~floors were washed and vacuumed, it was dusted, and the bathroom was clean! (Thanks Diana and Carol!) So many people have been so selfless and willing to serve and help in any capacity through this whole ordeal (Thanks family and friends at FCC~too many to name specifically, Thanks Mom and Sven, Thanks Dad, Thanks Sarah M, Thanks Steph, Thanks BBC, Thanks Jamie, Thanks Amiee and Chad, Thanks Candi and Wendell, Thanks Rachel and Shawn, Thanks friends at Kidzone and Assemblies of God, Thanks EVERYONE all around the world that prayed for Xavier,  and a HUGE thanks goes to my wonderful sister in law Cindy for being there for me almost the entire time we were at the hospital!  You were there with me through everything~putting your life aside for me and your nephew, you will never know how much that means to me!  You were a rock for me~thanks for being my second set of ears and processing what I could not at times, thanks for loving on the little guy, feeding him, changing him, bathing him, consoling him, and being his advocate!)  I can't wait for the day to go through his hospital scrapbook with him and share all of these memories and try to explain the love that was poured out from so many.  He may never truly grasp that, but I will do my best to explain how much people did care and love him! 

Now onto the good stuff....pictures:

Our last time in his hospital room.

This is where we called home for 30 days and nights....well, the rooms did change a little bit~especially in the ICU and CICU.

First bottle at home!

Such a little man!

So happy he's home!!!!

He is so happy too!!!

P.S.  I do apologize for anyone I did forget in my "Thank Yous" It is midnight on my first day back with the 3 kiddos and my mind is mush~please do not be offended.  :(

Smiles!

This is one smiley little boy!!! 

Xavier's Update:

Yesterday we waited all day for the surgeon come talk to us about his eco-cardiogram that he had gotten on April 11th and talk about when Xavier might be released. Finally at about 5:30 Dr. Weirden came in with his whole team and reported to us about the eco.  He said that everything looked great, except that he did see some blood still flowing from his PDA, which means that it STILL isn't closed all of the way!  You would think after 2 surgeries this guy could get it done correctly! I understand that it is a large hole, but SERIOUSLY?!?!  He did say that it will most likely close on it's own.  We have an appointment 2 weeks from today to see a cardiologist in my town to get another eco and just follow up on his surgery. 

I did speak to him about the chances of this being genetic.  All of Will's sisters (4 of them) and his mother all have issues with their hearts.  My reasoning for asking was because now that I look back at the signs of having a hole in the heart I am concerned for Savannah.  She is so tiny~about 20 lbs. and almost 16 months old, you can hear her breathing most of the time~like she is trying to get a deep breath all the time, and her lips are purple a lot.  The surgeon told us that there is not real data to support that it is genetic, but he did say that I should make an appointment for her as well to be seen.  I know holes in the heart can be undiagnosed for several years, and people can have them and not ever be effected.  I will forever be wondering about her if I don't get her checked. 

Overall, Xavier is doing remarkably better!!!  He is like a completely different little guy!  He has more energy, is eating better, not 100% but a serious improvement!  His color is wonderful, and smiling all the time! His incisions look like they are healing quickly, and his infection in his arm is going away.  I have a peace this time about being sent home, unlike last time.  He will keep making big strides in growing and gaining weight.  God has made this little guy so strong and has sustained him through all of this!  He's a fighter!!!

Story Time!

Our journey here at Pittsburgh Children's Hospital is almost over, and what a journey it has been!  Over a month worth of memories here~good and bad.  This is where I will pick up in my scrapbooking, and someday, when I am ready, go back and scrapbook our "family" album that is not complete from 2010. 

Children's Hospital is a wonderful hospital for the children to feel comfortable and know that they can still have fun even though they are in a hospital.  Last night they had story hour where the children put on their pajamas and went down to the 6th floor to hear bedtime stories.  And who do you think joined in~Xavier.  He was all ready to go in his duckie jammies!  He fell asleep as soon as we got to the room for story hour, but then woke up and decided to dirty his diaper so we had to quickly run back to our room, change and come back.  At the end of the hour they gave away free books~we got "Where the Wild Things Are", "Guess How Much I Love You", and "Whose Mouse are You?".  It was a nice ending to our stay at the hospital!

He found the perfect spot!

He is so into this!

I think Mommy and Aunt Cindy are more excited about this! :)

My turn?

Sitting in one tiny room for weeks on end gives you a ridiculous amount of time to think.  Even though I have company there are those times where I am alone with my thoughts.  I try not to be, I try to keep busy either on the computer or reading the Bible or praying.  Reading and praying have been the key in keeping me going, when I am saddened or frustrated or feel hurt, it's those times when I know I need to seek God the most.  He is there to comfort me, to sustain me, and to carry my burdens. 

This morning has been a little difficult just in the fact that I have to sit here and watch Xavier still go through more pain, but good pain.  He had his IV access needle taken out from his neck which was kept in his neck by stitches, his drainage tube which was also held in by stitches and the two wires for his pace maker that were in his abdomen.  All of those were pulled within the hour.  He wasn't given any pain meds other than Tylenol to deal with this pain. I just felt helpless.  It was as though every time someone touched him they were doing something to cause him pain.  I just wanted everyone to back away!  After he calmed down and fell asleep I just sat and wanted to cry, thinking to myself, is it my turn to cry yet?!?!  Our journey here is almost over, and in a way makes me a little sad.  As much as I want to get out of here and get my girls back and be a family again, there is comfort in knowing the doctors are only a buzz away and all the nurses are right outside my door.  I won't have that at home~very scary.

Knowing also reality of my new life is waiting for me at home.  The constant reminder everyday when I look at my children that I am now a single mom with so much responsibilities!  It's not that I can't do it, because I know I am strong, and I just have to and want to because my children deserve that!  They deserve nothing but the best, and I have to step up to the plate and be the best I can as 2 parents wrapped into 1.  I love my children with all my heart and am doing my best to not have them deeply affected by what has been thrown at us the past couple months and the months to come.

I am still going through the grieving process and just need to find the time when I can have my turn to cry.   I am trying to learn that crying doesn't make me weak by any means, it's just a natural healing process I have to go through. The Bible even says that "Jesus wept" (John 11:35). That verse refers to Martha and Mary who were displaying little faith~makes me think also how much more so He is weeping at Will because he turned his back on Him!  If I am hurting this much, how much more so is God hurting! 

I know I will have my week moments and feel horrible and want to just curl up and cry all day long.  If you come into contact with me on one of those days I do apologize ahead of time.  I will get through this with the help of God, my children, family (even my in-laws :P), friends, my amazing church family, and people I don't even know!  Words can't even begin to describe how thankful I am to EVERYONE in my life who have gone above and beyond what you could ever imagine!  I am sooooo blessed!  It's times like these when your eyes are opened to what love truly means, what serving is all about, and the true and wonderful power of prayer! 

Beads of Courage

These are Xavier's beads that he has earned just from April 3-6th.  He still has to get all his beads from his surgery and the first 2 1/2 week hospital stay in the beginning. This simple string becomes a story of his strength and courage.  The booklet describes the beads of courage as "BEad YOU...because nothing can change who you are.  No matter what happens, no matter how your body changes as you go through your treatment, YOU will always be YOU.  Each one of the beads will be your way of saying, 'This may have been hard, but I DID IT!' "

Emotional Rollercoaster

This morning as I awoke, from my wonderful 3 hours of beauty sleep, I found Xavier snuggling with a nurse in the rocking chair.  She had begun to feed him through a bottle and he had drank 30 ml (1oz)!  That was very exciting news seeing as right before his surgery he wasn't drinking anything orally. He was also no longer on high flow oxygen, but just a regular nasal cannula!  The day was starting wonderfully!!!  After he the nurse was changing his diaper and said, "maybe I can find him a onsie to put on"  when I replied, "Oh, I brought him lots of clothes!"  I held up two shirts for him to decide which one he wanted to wear and he stared at his comfy stripped vest instead of his plaid button down shirt.  Only 2 months old and already picking out his clothes! :)  It was so nice to see him in regular clothes, almost made you forget that he just had open heart surgery 2 days prior and not to mention a different surgery 5 days prior as well!  There was just something about the way he looked and how he was acting that made me think he was doing so much better!  His coloring was great, he was so alert, he was eating well, and he was moving more than I had ever seen him move and squirm before!  He just had so much energy and life to him! For his next feeding he drank 70 ml (2.45 oz) which amazed me!  Xavier was such a little piggy during that feeding.  He finally felt what it was like to be hungry and want to eat and devour it!

Later that day during rounds the head cardiologist came in to check and assess Xavier.  He said to Xavier "wow, you dress better than I do"  and because I was in such a good mood I responded, "yeah, and he has more hair than you do too!" :)  It's a good thing that the cardiologist and I get along so well!  Everyone in the room just laughed!

Well, my happiness for Xavier's progress was short lived.  The cardiologist then proceeded to tell me that I should not get too excited because this is just the "honeymoon"  stage with Xavier.  His body will show great signs of improvement and then problems may arise. That was it, there went my happiness for the day.  I knew he could be wrong, but it was like as soon as he said that I didn't see that vibrant Xavier for the rest of the day as I did that morning.  His feedings dwindled down to him eating nothing orally, his color was changing, he spiked a low grade fever, his eyes were glassy and he looked like he had been sedated, and he was very fussy due to having lots of gas.

I have spent quite a bit of time speaking with the other Heart Moms here to, in a way, brighten my day.  We tend to find humor in such little things in life right now.  They are full of encouragement for me, and even though they are more experienced in this whole process I can find little ways to put a smile on their faces as well. We had been discussing a lot about the program the hospital does, it's called "Beads of Courage".  For everything your child goes through the hospital gives you a specific bead.  Everything from, the helicopter flight, IV sticks, blood work, x-rays, eco-cardiograms, to even getting antibiotics.  There is one woman here who's son is only 7 months old and her sons string of beads is about 7 feet long!  I will post a picture tomorrow of what Xavier's Beads of Courage look like thus far.  It's a wonderful tangible way to share with others the experiences that he has gone through earning each and everyone of those beads.   

We are hoping and praying that we are moved out of the CICU tomorrow morning.  There is nothing medically keeping us in the CICU, we just need for a room to open up with a nurse to staff it.  Xavier still has his tube coming out from his chest that is draining the blood, and also 2 wires that go into his chest near his heart, basically an outside pace maker, and IV in his neck, and IV in his hand, and his typical blood oxygen wire, and we can't forget the feeding tube they just put in the evening.  Please pray we move on up to the 8th floor tomorrow!

One of our favorite nurses dressing Xavier in real clothes~I was a little scared at first to touch him with all the wires and his incisions.

Mommy and Son!  Feeding for the first time since surgery!

 

Emotional Journey

Today (Saturday) was one of the last of the critical days for Xavier, and he made it through with flying colors!  Despite all that he has been through this week he looks amazing!  He just looks so much healthier already!  We definitely aren't through with our journey here in Pittsburgh Children's Hospital by any means.  We still have to tackle his feeding issues.  We are praying that they have gone away with the fixing of his heart.  We will find out in the next 48 hours is that is the case or not.  If he continues having a difficult time feeding then we will have to investigate if it's an stomach/intestinal issue.  Please keep him in your prayers for that! 

This has been one of the most emotionally trying times in my life thus far.  I have joined a group called Mended Little Hearts of Southwestern PA through Facebook.  Shockingly 2 other moms of this group are actually here with me tonight.  Their children are in the rooms next to me going through so much more than what Xavier has gone through.  I was able to spend some time conversing with them, sharing stories of our journeys and how we got to where we are today with them.  As my sister-in-law, Cindy,  wrote on her FB this evening "We compared stories of battles fought and won, and those yet to come. I believe much of the parents strength can be found in each other during their stay here. There is something about knowing that someone else knows what you are going through, and has felt the feelings from fear to joy that you have been feeling. It appears to me that all 3 mothers who sat talking to each other today found comfort and solace in the conversation, and knowledge that just down the hall are 2 other moms who are also walking your same path"  Cindy writes it so well~it's not just another person to tell your story to or even compare what someone had gone through and is done dealing with, but someone who is actually, at that very moment, going through it with you with their child.  I was invited to go to lunch with the fellow Heart Moms tomorrow (Sunday) with several others who are traveling and meeting for lunch just for encouragement! 

One of my long term fears for Xavier was the possible fact that he may never be able to play a contact sport like those other moms who shared with me that their sons will never be able to do.  I know it seems silly to think about, but he is my only boy and to not be able to go see him play baseball, soccer, football, or even basketball would break my heart.  I am in no way saying my girls can't because if you know me I love playing sports and will encourage my girls to do the same, but it's just something about having a son be able to take part in those activities as well.  I did speak with the surgeon about the possibility of that for Xavier in the future, and he reassured me that Xavier will be a typical child and be able to play sports and not have restrictions!  I was able to breath a huge sigh of relief!  Maybe a future line backer for the Patriots?!?! :)

Today (Saturday) as the nurses were weaning him off of the breathing tube, sedation, and paralytic, he was reacting as most babies do~freaking out.  They slowly are realizing something is stuck down their throat and they are unable to move for the most part.  Xavier's blood pressure was spiking and his face was turning red/purple!  That was extremely frightening to watch as your child wants to scream and just can't!  We had to leave the room because the more he heard us talking or even the feeling of touch would set him off.  The feeling of sadness that in a way I am causing him stress, but also the thought of the possibility something going wrong while you aren't there just consume you.  Words can't describe all the emotions that have run through my body watching him lie there in every step through his journey! 

In all honesty, there is no way that I could have gotten through this journey without curling up in a corner and crying non-stop if it weren't for my faith and trust in God.  He promises that if we are faithful He will carry our burdens.  That is such an amazing promise, why would I not want to trust Him?!? 

The final stage

The nurses prepping the room and Xavier for his last (Lord Willing) time under the care of a surgeon!

My brave little guy!  He's on his way to a great recovery! God has given him amazing strength to get through this!

He did it!  He is off the ventilator and breathing on his own with the help of some oxygen! 

Early Morning Scare

About 4:30 am the doctors realized by looking at Xavier's recent chest x-ray that his breathing tube was not as far down as it should have been.  The nurse called in another nurse to help her take the tape off of the tube and push it back in.  Seeing as nothing is just as simple as it sounds for Xavier we had an emergency on our hands.  The tube was too far to the side in his mouth and they were unable to get a grip on it and somehow his stats were dropping and dropping fast.  A team of about 10 doctors and nurses came rushing in with all this medical equipment, they bagged him until they felt safe trying it again.  They were unsure of the possibility of them being able to fix the tube so they called in someone to reintabate him. The team worked quickly and efficiently and were able to fix the tube that was already in and not have to extabate in order to reintabate another tube.  The more that they extabate and intabate the more damage it causes to his vocal cords.  Xavier is extremely horse and barely has a voice to begin with.  The doctors said that it will probably take months for his voice to get back to normal. They are getting another x-ray to make sure the tube is positioned correctly.  Please pray for no more complications and surprises today!

The Big Picture!

I was attempting to add this picture to my previous post, but for some reason it wasn't working.  Here is my view...that's my little guy up there in that tiny bed hooked up to all those machines, and yes, everyone is working something on his little body.  It's amazing how many machines it takes to run a body that normally God has created so intricately and amazingly to run on its own.  This picture really puts life into perspective~makes me not want to complain about the small things in life.  Just be thankful for everyday I have with my children!  They are so precious to me and I know their lives are in God's hands.

Notice the artwork hanging above Xavier's head made especially from Sydney today at school for her little brother~how sweet is she!  There is a little Easter egg next to that on the monitor that has his name on it that the CICU put up for him~I am hoping that they don't think we are going to be here for Easter and that's why they are decorating!  I did ask the nurse how long she thinks we will be here in the CICU and she answered that it could be anywhere from a few days or up to two weeks, and that's not even counting the recovery time on the regular floor!  Please pray we are home in time to celebrate Easter together as a family!

Life inside the CICU

Here I sit by Xavier's bedside through his first night after surgery~man this place is hopping at night, they never stop!  I have never seen so many machines hooked up to one little boy~they have 11 syringes hooked up to him all at once!  It is so amazing the technology and I am actually learning so much! I am ready for my medical degree after all this is said and done!  

The doctors are about to do another eco-cardiogram to make sure everything is running properly in his heart because they think he is retaining more fluid, even on lasiks, than is typical (basically he is not having enough output of urine).   They are also going to be drawing some labs as well.  So pray those all come back normally and they don't find that there is another problem or "pothole" in the road as someone on FB referred to these things as :)  

While he is in the CICU (Cardiac Intensive Care Unit) they turn or rotate him every 2 hours.  This way he doesn't get bed sores or fluid doesn't build up in his lungs.  His legs are elevated too with little tiny pillows~just too cute!  Yes, even while he is sedated, and tubes and wires coming out from his tiny body I find "cute" things in all of that mess.  

I am still in amazement at the fact that the doctor was so surprised at the size of the PDA (the artery that he was suppose to close in the beginning) he had never seen one so huge and was shocked that "he made it these past 2 months", meaning, he is curious how he is still alive today without it being fixed.  That was his justification in not knowing that he closed off the wrong artery, because he didn't think the PDA could be that large. God is keeping this little boy alive for something.  Maybe this little guy will be a great heart surgeon someday and save other babies lives!  But as of right now he is such a wonderful testimony for the power of prayer!  There have been people all over the world praying for his life~people from Australia, Denmark, United Kingdom, Bangladesh, Beijing, Brazil, Hawaii, Alaska, California, Texas, Washington, Indiana, Florida, Maine, Massachusetts, Pennsylvania, Ohio, Connecticut, New Hampshire, New York, New Jersey, Montana, Missouri, Tennessee, Georgia, North Carolina, and Washington DC. I apologize if I left anyone out of my list, but in all seriousness~look at all those countries and states~ 6 countries and 21 states! AMAZING!  This is one little boy who is only 8 weeks and 2 days old and known all around the world and being loved and prayed for so much~doesn't that just give you chills and tears to your eyes!  I know it does to me.  I am so blessed to be called his Mommy, and I cannot wait for those words to one day be spoken by his little mouth! 

Colossians 4:3 "Devote yourselves to prayer, keeping alert in it with an attitude of thanksgiving"

Philippians 4:4-7 "Rejoice in the Lord always; again I will say, rejoice!  Let your gentle spirit be known to all men.  The Lord is near.  Be anxious for nothing but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus."

Tough Guy!

This is my sweet little man sleeping, of course, right through getting more blood drawn.  This was prior to us knowing about the surgery.  They were running so many tests in the morning to figure out the cause of his vomiting and diarrhea.  They were not going to stick him in his arms and legs anymore to get blood, because they knew they wouldn't be able to get blood, so they went right for the head  :(

This guy sleeps through everything!  The nurses were wonderful and we see even the IV team that they know us by name now.  We have made so many friends in the hospital!

We were taken to the OR holding room prior to the surgery and of course, he was sleeping away.  How sad that his bear is almost bigger than him and he's almost 2 months old!

This is the last picture of his chest without a scar :( 

Mommy and Xavier prior to surgery...wasn't quite sure if I should be smiling for the picture.

Poor little guy, still on the ventilator and will be on it for at least 24 hours. The next two pictures are graphic, so if you get squeamish I wouldn't scroll down any more.

I'm at a loss for words on this picture...it speaks for itself.

They left his chest open because he was still bleeding more than they would like and if it doesn't stop and they have to go back in and fix something they don't want to have to go back in after sewing him all up.