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.