Wishes DO come true...our FAMILY in FLORIDA!! :)

Wednesday, May 21, 2008


We decided we were going to try to have another baby. We said when baby Alex was a year old; we were going to start "really" trying. THANK YOU GOD, we got pg that 1st month. That was a miracle in itself, we had had 2 previous m/c! We were solo happy! Baby Alex was going to be a BIG BROTHER! We didn't tell anyone yet. We had our 1st sono at 9 weeks and were able to tell my mom Eunice about our pg before she passed away! It was something that God had told us we must do and not to be afraid to say anything. We had a wonderful pg! Other than the occasional bout of nausea & constantly being hot, it was wonderful! We were all soooo happy and excited. We knew Matthew was going to be bigger than baby Alex because I was REALLY showing right away! We all enjoyed this pg SOOOO MUCH! Baby Alex loved to give hugs, kisses and love to his baby brother. He would give him juice, toys and share his cookies with the baby!
I knew from the beginning that it was probably a boy. We had a sonogram @ 26 weeks gest. We were NOT going to find out the sex of this baby, but my boys are NOT SHY! We went to get it done and when the sono person was scanning to see which way was up, James yells "OMG, I KNOW WHAT IT IS!" I said "it's a boy right?" and sure enough HE WAS!! We were soooo happy and excited!! I had already picked out the name Matthew and I had fallen in love with the name ISAIAH.
The day of the scheduled C-section, May 21, 2004, was sooo exciting! James and I couldn't sleep! We got there at 5:30 am and got prepped and ready! James looked soooo cute with his little outfit! Indi was there with us awaiting her new nephew’s arrival! We went into the OR about 8am and got things rolling. Daddy watched the WHOLE THING! MATTHEW ISAIAH came into this world crying at 8:54am! A sound sooo beautiful....we got a quick glimpse of him and he was BEAUTIFUL! Then they took him away. As they were working on him, the last thing I heard was that he was not changing colors...when I woke up in recovery room all was well in my life! I had just had a beautiful baby boy! Then a nurse walks in and stated, "WHERE IS MR GONZALEZ? YOUR SON HAS A HEART DEFECT AND HE HAS LUNG DAMAGE AND WE NEED TO TRANSFER YOUR BABY TO ANOTHER HOSPITAL" and walks right back out! I was stunned and asking, "My baby?" but she was already gone! Then James runs in and was crying so I KNEW that it was about Matthew. Then a couple of minutes later, the cardiologist comes in and tells us that he has a heart defect and they need to transfer him and he is VERY CRITICAL. I asked one of the hardest questions I could ask and that was the prognosis of my son, he told me "I don't think he will make the transport to the hospital". I was sooo stunned. We were crying in disbelief and just praying our hardest! I got a chance to touch him before he left. He was sooo beautiful! THANK YOU JESUS he made the trip to SW METHODIST CHILDRENS HOSPITAL! James followed the ambulance there. When they got there, they were immediately taken to the cardiac cath lab (2pm). They found out that he had a rare heart defect called Total Anomalous Pulmonary Venous Return (TAPVR) and some serious lung damage. They had to operate NOW! James had baby Matthew baptized right before the surgery (4pm). He was in surgery until 12:30 am!! 8 1/2 hours! He is such a FIGHTER! They were unable to take him off the bypass machine after surgery, so they put him on the ECMO machine (heart/lung bypass) and some serious cardiac drugs and a vent. There was sooo many machines on him; it was hard to see the BABY! There were always 2 nurses in that room 24/7 just for him and a nurse just for the ECMO machine. You had to wear a mask/gown/hat to go in there. They were still unsure if he would survive. The cardiothoracic surgeon took a chance on Matthew because he was soooo bad and he didn’t know if he would survive even after his surgery. So, they explained to us that the only choice at this point was that we HAD to take him off of the ECMO machine because he could not survive living on it! So, after 5 days of being on the bypass, they took him off of ECMO to DIE a natural death. Our cardiothoracic surgeon and all the Drs involved were very frank with us. They told us that his chances were very SLIM that he would be able to make it because of the sever damage to his lungs and the tiny veins. I remember just praying and waiting in the waiting room for news. It was actually pretty quick. We then see the anesthesiologist come out and talk to us. He was VERY grave and very sorry to say that he gave him 1 in 10 chance of survival. He just didn’t think he would make it and that the only thing we could do was PRAY like we had never prayed before. There was NOTHING else they could do and he was very sorry. Then the intensivist, cardiologist and surgeon all said the same thing and said that they just didn’t think he would make it thru the night. He was blue again. His little body HAD to do everything by himself now. He was that bad. So we PRAYED and we called everyone and asked them to pray and then we went into the room to see him. We actually met a wonderful CHILD CARE SPECIALIST at the door of the PICU and she asked if there was anything she could do for us and I told her what was happening. She went into action!!! She was the one that got us the footprints, and models of his hands and feet. She made things happen. James and I and my SIL went into the room to see him. I told my SIL, TAKE ALL THE PICTURES YOU CAN. And she did. Words can not describe how it looked in that big old room. EMPTY. The ECMO machine was gone and the room looked empty and……SILENT. Just a big sense of sadness in the room. And then my beautiful Matthew Isaiah looked so BLUE and helpless. But we had a wonderful nurse that day that had always been very nice to us. She told us, “ok, let’s give him a bath” and we did. We just talked to Matthew and told him how much we loved him and how proud we were of him. The nurse asked us, “What do you want? Do you want mariachis? A cake? A party? You name it” so we asked for a birthday cake. We called all our friends and families and they all started to come in. we were also FINALLY able to hold our son. He was soooo beautiful. It took 3-4 people to move him from his warmer to our arms. And that is how you knew that they really expected him to pass. They normally don’t let you hold him right after major surgery, with his chest still open and ESPECIALLY with a vent on. But, they did it for us because they thought he would not make it. I went first and OH WHAT A FEELING it was too finally hold my son after 5 days old. He was so beautiful! Precious. I could not talk to him enough. It was so sweet of everyone to come by. I remember saying to James, we are going to make this a HAPPY day. I don’t want him to see/hear us breaking down. And we did. Everyone that came to see him was introduced to him. And then they would all start talking to him and tell him about themselves. It was really touching and awesome how he had already touched so many people not just here in San Antonio, but around the world. My internet family was all praying for him all over the world. All we asked of everyone was PRAYERS PRAYERS AND PRAYERS! Nothing else and nothing more. We had a birthday cake for him and all the staff came in to sing “happy birthday” to him and everyone said a prayer with us there in the room. It was BEAUTIFUL. And so thru out the day, we WAITED….for what, we were not sure just that SOMETHING would happen and he would no longer be with us. We would keep asking the nurses what we were waiting for and HOW it would happen and they said that he would just start shutting down and then he would be gone. I asked how long and they said, “His heart is strong” so, we waited and love and prayed. By 9pm, we asked everyone to go ahead and go home that we would call them to let them know what had happened. I remember holding him and being sooooo tired. I just kept telling James “please keep talking to him. Don’t stop talking to him” and he told me he would. I would wake up with him in my arms and James was just talking and talking to him about ANYTHING. It was so beautiful. Then it was my turn and he would take a nap holding Matthew and I would talk and talk. James and I held our miracle until about 2 am. We finally had to put him down before we dropped the poor baby! And we did and slept right there, me in a rocking chair with my legs on another chair and James in a chair. When we woke up, the MIRACLE OF MATTHEW had begun. We woke up at 7am at shift change and he was PEEING again!!! (They had told us the night they took him off ECMO that his kidney had stopped working because he had stopped producing pee.) He was still with us!! And he was doing AMAZING!!! NO ONE, Drs included, could believe he was still here with us. Our surgeon said, "We might have a miracle on our hands" labs & x-rays were started again. They started taking him off his cardiac meds and he did great! They closed up his chest and the dr said that he was his little "Lazarus". He continued to make progress and improve and be with us everyday. He has had several surgeries since his initial one and the BIGGEST ONE was a repeat of the first open heart surgery to fix the narrowing of his veins. He was in the PICU for the first 98 days of his life until he finally came home.

In November 2004, Matthew suddenly developed seizures out of the blue. They at first diagnosed him with INFANTILE SPASMS but they never developed even though he had all the ear marks for that type of seizures. His seizure disorder has had its up and downs. He has had to be airlifted twice due to the severity of his seizures and each time he has had his “BIG” seizures, they have lasted OVER an hour and have required us to give him heavy doses of seizure drugs and also has resulted in him stopping breathing and the medics to have to bag him and intubate him. This is going on till this day! On October 6, 2007 he again had another “big” seizure that resulted in him being airlifted to Methodist hospital. It is a constant struggle and we have to closely monitor him whenever he sleeps because his seizures happen when he is asleep. He is on FOUR seizure meds to try to control his seizures.

He also has chronic lung disease due to his TAPVR. He tends to get sick quite easily and is always at risk for hospitalization. He has to have a pulmonary percussion vest that he uses 2 times a day with his nebulizer treatments. He is on a couple of inhalers daily and we are on and off ORAL STEROIDS when he gets junky which is often. He we are always soooo worried about him out in public because he does tend to attract EVERY illness that is out there!!  But his lungs are what they are and we just try to maintain them to keep them healthy and clear.

He also has a mild case of Cerebral Palsy and is developmentally delayed. He is getting physical therapy 2 times a week, occupational therapy 2 times a week and speech 2 times a week. He also has a homebound teacher coming in 4 times a week for an hour thru the school district. He is mobile and he is able to do a form of crawling and is working HARD at standing and walking. He has overall low tone in his muscles. He wears AFO’s on his feet to help with this when standing and walking. He also has GERD and is 100% g-tube fed at this time but we are making progress on his eating orally!!

We are SOOOO PROUD OF HIM and are in AWE of his strength and his personality. He is such a HAPPY BOY and LOVES anyone who he meets. He has such strength in him and just a wonderful little boy! He amazes us everyday and we feel and KNOW that we are SOOOOOO BLESSED that he is here in our lives! THANK YOU GOD for this little boy and all he is!!


Anonymous said...

This is the first time I have read the Blog on little Matthew. What a total tear jerker. Thank God that miracles do happen and he is still here with you today
Mary and family

M said...

I came over from the Congenital Hearts yahoo group to say HAPPY BIRTHDAY TO MATTHEW ISAIAH. I am also a heart mom, but we have not been through nearly as much as your family. I always enjoy reading updates on Matthew and his family. You are always such an encouragement Maria and he is blessed to have you as his mommy.

Praying God's blessings on you all.


Susan Brown said...

I was blessed to be Matthew's Homebound teacher for 2 years and he truly is a miracle. The stubborn determination he has is amazing and I am sure is the reason he made it. I miss you little man and your family as well!