Family Photos

Wednesday, May 4th, Picture People came to the hospital and took family pictures of the families that were there.  I was so excited because I wanted to get a new family photo for us, and what better way to get one than for FREE!  I had picked the girls up (despite car issues) and drove them back to the hospital, so we were able to spend some time together.  Savannah didn't want to leave my side, so she wasn't into getting her pictures taken nor did she do well with the sibling photo~at least she smiled in our family photo! :)



Our family!

My little blessings!

The actress! :)

Love those eyes!

Going Home.....again!

Friday, May 6th, Xavier and I headed home~we finally busted out~WOOHOO!  I think Xavier knew Mother's Day was coming and wanted to give me a wonderful gift of letting me spend the day with all 3 of my wonderful children, he didn't want to keep me all to himself~so very thoughtful!!!

Earlier on Friday Xavier got some blood work done, called a BNP, which gives them an idea of how well his heart is functioning.  They also did a chest X-ray to see how he was doing on a decreased dose of the Lasix. Both tests came back wonderful and seeing as he gained weight everyday during his stay there they thought it was safe to send him home.  This doesn't in any way mean we will never be back to a hospital~especially seeing as he is on 4 different medicine right now to help him eat well and gain weight.  If we do have to go back into the hospital I will be insisting they close the 2 holes that are left in his heart.  I want to make sure that they are not the cause of these issues.  When we move to MA we will be having Xavier seen ASAP by the cardiologists at Boston Children's Hospital to see what they say because it's one thing to have his medical records (which should be there by now) but it's another to actually examine the child for themselves. 

Mommy and Xavier heading home!!! :)

This is the front of the hospital.  He was in the top room/window on the grey section, as well as the room on the left of it.  Room 839 and 838.

Before, Middle, End

Not many people have been able to see Xavier's scar now that it has mostly healed.  I have heard from others that it will fade more over time~it actually looks lighter in the picture than it does in person.  I took a picture of what his chest looked like prior to surgery, then after surgery, and this morning I took one of what his chest looks like now.  He has come a long way since his big day on April 8th!  This little guy is such a fighter and has an amazing story to share someday~I am so proud to be able to call him my son!



April 8th~morning of surgery



April 8th~hours after surgery!

May 4th~3 weeks and 4 days after surgery.  Healing well!

A Father's Love

The thought of the kids not growing up with their father has been on my mind a lot lately, probably due to the fact that Sydney graduates Pre-K the end of the month and we will be moving back to MA and he will be here in PA~yes, I have finally made that decision~we will be moving to MA.  It hurts me so much to think that he is missing all these major milestones in their life even while we still reside in PA~Xavier being a survivor with his heart disease, Sydney graduating, Savannah learning to talk, etc. etc.  I don't know why it effects me so much, when it should be effecting him.  My heart breaks for all of my children: for Sydney to have that 4 1/2 year relationship/bond broken between her and her Daddy (she was a Daddy's little girl!), Savannah being confused about who that man was in the beginning of her life who is no longer around, and Xavier to know that he never had a Dad.

I am very thankful that they do have a Father~their Heavenly Father.  As it states in the clip I posted which was taken from Matthew 7:11 and Matthew 5:48 that "I offer you more than your earthy father ever could, for I am the perfect Father." Sydney, Savannah, and Xavier will still know what a real father should be by knowing their Heavenly Father.  I do pray that someday they will have another father figure in their life, but until then or if that isn't the plan for my life, that they will see God as their Father. 

The video clip is long, but excellent~it's called "Father's Love Letter ~ God's Message"

Ideas

The day of the big conference came and went, and no major decisions have been made, just more ideas were tossed about.  Once again, it all depends on how the little one reacts to these ideas and what the findings are.  Basically what was decided was~increase the erythromycine which will empty his stomach faster which will make him hungry earlier in order to get more calories, and they also increased his formula to 24 calories per ounce.   By doing that his stomach hasn't tolerated it extremely well, he is spitting up A LOT~which is not good because that is less calories his body is consuming.  The next step is an X-ray to see where his lungs are at before they begin to wean him off of his Lasixs which drains the fluid from his lungs.  They are not sure whether his lungs are being filled with fluid that his heart is putting there due to the holes or he is aspirating his formula every time he drinks.  If that is the case they might have to put a feeding tube in him, just not the kind he had in before~not the NG tube~which goes right into his stomach, but either a NJ tube which goes directly into his intestines,  If they do an NJ tube he will have to be in the hospital the whole time it is in, he isn't allowed to go home with an NJ tube in.  The other feeding tube is called a Mickey, which is a tube they surgically place in his stomach.  He is allowed to go home with that.  With that tube he will be on continuous feeds.  If they decide to go with the feeding tube route, they will first do a catheterization of his heart by going up through his groin.  They will look around at his heart, check his pressure and go in and put a coil in to close his PDA.  They will also consider doing the same thing with his VSD~but that holds more risk to going to fix the VSD. They would like to get his heart off the table when considering what is causing the feeding issues.  That is basically everything that is being talked about as of today.  We know not to take what they say as exactly what they are going to do because like I said before, it really is all determined by the little guy.  Things change here hour by hour most times not just day by day. 

Here are some pictures and videos from yesterday (May 1) and today (May 2):

Guess who bought this shirt for the little guy :)  He really does love her~his face lights up when he sees her.

I think he's about to punch me if I take one more picture of him. :P

My little man hanging out enjoying the view of Pittsburgh

He wanted to go for a walk in his new kicks :)

He has such skinny legs, his shoes are bigger than his leg, it's so cute!

Mommy and Xavier <3


Here are some videos:  First one is of the nurse giving Xavier his meds in his swing while he is sleeping, the trick is, Xavier HATES his Lasixs and he wanted him to stay asleep. 
The second video is of Xavier in the swing with his leg popping in and out of the swing, it was so funny, it looked like a turtles head peeking out of it's shell and pulling back in :)
The third video~please excuse my high voice...it's what he responds to to smile.

Snuggling

This morning the little guy was a little fussy in his bed, maybe because he was lonely and needed Mommy time. I took him into my "bed" (the couch) and we snuggled for a little while until it was time to eat.  I love these moments with him! My time to enjoy listening to him breath, smell his baby smell, thinking about how this little guy is such a fighter and praying for him to continue to fight so one day he too can know the Lord and be able to share his amazing testimony!

Mommy loves you Xavier with all my heart!!!!!  God will keep us together so we can have many more snuggle times like this!!!

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.