Good Check Up

Today Santiago had a post-op check up and Dr. T was very pleased with Santi's progress. Dr. T felt all along the skull where he separated the bone and said that it is still open the way it should be. There is a slight risk that his bones could fuse back together early so we have to monitor that. Santi didn't even flinch when the doctor was running his fingers across the incisions and down the shaved part of his head. I am so glad that Santi is not in pain - or he doesn't act like he is most of the time. He is such a tough boy! He still has a little swelling on his head but the doctor thinks it will be gone soon and that is good because Friday we have our first appointment to get measured for his tiny helmet. We will go back to see Dr. T after Santi gets his helmet on April 14th.

At the doctor's office today we met two other families whose little boys also had to be operated on for craniosynostosis. The only difference is that they both did not have surgery until they were 6 months old. We are very fortunate that we caught it early in Santiago and he was able to have surgery at his young age because the healing process is much faster the younger you are. One of the little boys was 3 years old and he was playing in the waiting room. It was nice to see such a happy little guy who also had this surgery. It is very encouraging to see the results too. We will be under Dr. T's care until Santiago is 7 years old.

I was able to tell the staff at Dr. T's office today some of the things that I wish we would have known before surgery. It seems that they downgraded some of the things they told us prior to surgery. They asked me so they could better prepare other families in the future going into surgery. I wish I would have known that Santiago was going to be so swollen right after surgery and that he was going to be wearing a turbin type bandage on his head. Santiago was almost unrecognizable after surgery and Hector and I wish we would have been better prepared for what we saw when we went back to recovery. They told us that there was going to be minimal swelling and that was not the case at all. I am super thankful that the swelling has been disappearing so fast.

We found out today that Santiago weighs 12 pounds and is 24.5 inches long. He is such a big boy! Tomorrow he will be 8 weeks old and it is amazing how much he has grown. Here is what Santi looked like at the end of our day today - exhausted!

Have to Hold

I haven't posted any pictures in a while on here but I think it's time to show you how wonderful Santi is looking. Sorry I did not want to post any pics of my little man all swollen - it's just too hard to see. He is still a little swollen around his incisions but every day he is improving. You probably can't even tell in these photos. They had to shave a small section of Santi's head for surgery. He is missing a stripe of hair like a headband on his head. But that is also hard to see in these pics. Thank you Liz for the cute socks. You thought they would be too big for him since they are size 3-6 month but my son has BIG feet so they fit perfect! Thanks so much - we love them!!

So the doctors told us that babies usually like to be held more than normal after surgery for craniosynostosis and they were so right - we can not put Santiago down at all. He will fall asleep on us and we will try to lay him down but it doesn't last more than a few minutes. I love holding my angel but it's almost impossible to get anything done when you have to hold a baby the entire day. Thank goodness I have helping hands around. Grandma Linda spent the night with us last night and helped out tremendously. My mom had been here with us since last Tuesdat but she and my dad flew back to Midland on Sunday afternoon. I was really sad to see them go. Tonight is going to be the first night that Hector and I are on our own. I imagine I will be sleeping either in the recliner or in the bed with Santiago on my chest like a little monkey clinging to his mommy. I slept about 3 hours last night in the recliner with him after a feeding and today we took a nap together in the bed. Wish us luck tonight!

Home Sweet Home

Yesterday afternoon we got to bring Santiago home from the hospital. He is doing really well. Both doctors came to check on him yesterday morning and were happy with his progress. It is just a miracle to see the changes that have taken place already. His swelling has gone down a lot and they informed us that if we have him sleep at an angle with his head a bit higher than the rest of his body that the swelling will continue to go away and his little eyes will be able to open well. So far so good. We put a pillow in his bassinet under the mattress to tilt it and he slept pretty well in it last night for a few hours at a time. We had Santiago weighed again before we left the hospital and he had lost a couple ounces but he still weighed a little over 13 pounds. Dr. T said that the nurse from the night before got us all worried for nothing because gaining fluid weight like Santi did is totally normal after surgery as is runinng a fever. He still may have some fluid to lose but he is doing a good job dirtying diapers so I am not worried that he will be able to lose all the extra fluids soon. We have been giving Santi tylenol every 6 hours just to make sure he isn't in pain. He does not act like he is hurting at all and it makes us feel good when we see him smile. He wants to be held a lot and if we try to put him down when he is sleeping he wakes up after a few minutes. He will fall right back asleep when you pick him back up. The docs said that he would want to be held more than normal and they are right. We don't mind at all though! We have grandmas and grandpas and other family members who are more than willing to help out in that area but I haven't gotten tired of holding him myself yet. I think he needs his momma most! haha

I will be taking Santi back to see Dr. T on Tuesday for his post-op checkup. Then we will go Friday to get fitted for his helmet. They will be doing a scan with some kind of machine to take measurements of his head to make the helmet. The helmet is just as important as the surgery in his recovery process. He will wear it for 2-3 months and then he will be just perfect! He is a tough little boy and we are so happy that he is doing so well. Like I said before - it is a big relief! I will forever remember and hear the sounds of ICU - my heart goes out to all the sick children out there.

Day After Surgery

Today was a much better day. We were moved mid morning out of PICU to the pediatric floor. Since we are out of ICU they unhooked most of his cords and it is so much easier to love on him and hold him. Thank goodness! Santiago was running a slight fever and his heart rate was a little too fast this morning due to mild dehydration so they put him on fluids through IV. His swelling is beginning to go down and he was awake for a good while this afternoon and into the evening. He is able to open his little eyes now - the left better than the right and it is so nice to see his eyes. The best part is that our almost unrecognizable little boy from yesterday is looking more like himself and is acting more and more like himself with every hour that passes and that is a big relief. I was able to nurse him for about 40 minutes this afternoon and not even an hour later he wanted more so we gave him a bottle with four ounces of breastmilk and he drank every bit of it. We were so proud! Something we are a little concerned about is that he weighs about 4 pounds more now than when he was admitted yesterday morning. He weighed 10 lbs 3 ounces when we arrived and now he weighs 13 lbs 15 ounces. They took him off his IV fluids tonight to see if that helps. He is retaining too much fluids and we need that to stop.

Earlier today the genetic counseling team from the hospital came to visit with us. Since my brother and sister also had craniosynostosis our doctor wanted us to talk with them to possibly do some genetic testing. They informed us that I most likely am a dominant carrier of the gene that causes craniosynostosis. We could do some bloodwork to determine this but I do not know if we will. If I am a dominant carrier for sure that means that with every child I have I have a 50% chance of having a child who has craniosynostosis. Same goes for my siblings and now for Santiago when he has children one day. I don't think we will be doing the testing because no matter what the results are Hector and I would not let that stop us from having more children in the future. This is a difficult surgery to go through but this condition is totally fixable and Santiago is going to be just fine after he recovers. My sister and brother are healthy adults living very happy lives and with God's grace Santiago will too.

Thank you again for all your thoughts and prayers. Keep them coming so Santiago will continue to recover quickly. Love you all!

Day of Surgery

Today has been the most difficult day of our life so far. It is heartbreaking to see your little baby come out of surgery all puffy from fluids and cranky because he doesn't feel good. But the good news is that Santiago is doing really well and we are finished with the hardest part. Here is a recap of our day:

We woke up at 4 am this morning to pack up and head to the hospital. We had to arrive here at 5:30 am. Santiago's last feeding was over at 3 am because he couldn't eat for 4 hours before surgery. I was able to give him some Pedialyte on the way to the hospital because he was allowed clear liquids two hours before surgery so he drank about 2 ounces of that a little before 5 am. Hector's parents and my parents came with us for support today and we all had to wait in the waiting room until about 6:30 am then they called Santiago back to the pre-op waiting room and Hector and I were able to go with him. We talked to the anthesiologist team there and changed him into a tiny hospital gown. He was awake and happy. When it came time for us to let them take him away, that is when it got tough. Hector and I went back to sit with our family in the surgery waiting room. We knew pre-op would take awhile so we went to eat some breakfast in the cafeteria and then went back to the waiting room. There we waited for about 3 hours total where we would occasionally get updates from the operating room. A clown came and did some tricks for us and helped time pass a little. We prayed a rosary and talked. Finally after what seemed like forever, Dr. B came in said he was finished and everything went well. Later, the cranio-team coordinator came in to check on us and finally Dr. T came in to say all was finished and that Santiago was doing well. He told us that two incisions were made on Santi's head and that they successfully opened his coronal suture and we would be able to feel a "trench" on his head. He even told us that his bones had already shifted a little to relieve the pressure and that we would be able to see the difference right away when swelling went down. Next we had to wait for Santi to wake up and we would be able to go back. When they came to get us, Hector and I went back to recovery holding hands ready to see our sweet boy. When the double doors opened I immediately recognized Santiago's cry and my heart jumped from my chest. There were several nurses around Santi's little bed and they told me that he needed his mom. I don't think Hector or I were expecting what we saw. Santi was screaming with a full bandage on his head, all kinds of wires were hooked up to him and he was all puffy and swollen. They handed him to me and they wanted me to nurse him and we tried but he wasn't ready. Hector and I cried together because it was so hard to see our little boy look the way he did and be unconsolable. It was heartbreaking. We tried everything - pacifier, bottle, rocking, different positions, praying, singing, sh-shing. After about 45 minutes of this the nurse decided to give him some more pain medication and recommended me to lay him across my legs on his stomach. When we did that it was like magic - he immediately calmed down and fell asleep. After some monitoring, they moved us to PICU - Pediatric Intensive Care Unit. Only 2 people are allowed in his room so the grandparents and Aunt Bianca have been taking turns coming to give Santi their love today. We are spending the night here and they have given us a room in the Ronald McDonald House where Hec and I will take turns napping or showering. Santiago has only eaten once today but they said that is pretty normal after surgery like this. He is being monitored very well here and being given antibiotics, fluids, and pain meds through IV. He still has all kinds of cords hooked up to him so it makes it a little awkward to hold him. He has been sleeping really well on his tummy and making the sweet sounds that he makes making us feel better. His puffiness has gone down a ton from the time Hector and I first got to see him after surgery until now. It's amazing. The little turbin bandage on his head will not stay on so you can see the small zigzag incisions they made and where they had to shave a little of his head. That too was a surprise to us because they told us they would just part the hair to make the incisions. We are tired but very gracious that all went well and now we are on the road to recovery.

Thank you all for praying for us today. We are so blessed to have so many wonderful people in our lives. We appreciate each and everyone of you and the love and support that you have given us. I will give another update tomorrow.

One more thing...Last night was a special night for us and for Santiago. We had him baptized at St. James the Apostle Catholic Church. Santiago wore his great Grandpa Vernon's baptism gown that has been in the family for 90 years. In addition to my grandpa Vernon wearing this gown, my mom and her siblings wore it and my siblings and I wore it. Uncle Travis is Santi's Godfather and Aunt Bianca is his Godmother. Hector J's Aunt Diana, Uncle Carlos, cousin Noel and daughter Sarah and Bianca's boyfriend Matt all attended along with both sets of grandparents - Pappaw Monty and Grandma Karen and Grandpa Hector and Grandma Linda. We all went out to eat at The Potatoe Patch afterward. It was very nice! Here are some pictures:

Two Days until Santiago's Surgery

Santiago and I have been back home now since Saturday morning. We came back a day later than planned because I got sick on Friday afternoon very suddenly. Who knew breastfeeding could cause an infection and make you run a high fever? I am doing better now and just in time for Santi's surgery. It's hard to be sick and be a mom! My parents took great care of me when I was still in Midland and then Hector and his parents took great care of me when we got back home. I love my family! I am very blessed.

Today I am spending the day getting my graduate work finished that is due tonight. Tomorrow we have a busy day. My parents are flying in in the morning, I have a postpartum checkup and Santiago is getting baptized tomorrow evening. Then we will need to pack up everything we need for a 2 day stay in the hospital. I can't believe how fast time flies and surgery day is almost here.

Hanging Out in Midland

Santiago and I have been enjoying our stay in Midland this week. He has managed to stay on a pretty good routine while we have been here despite all the changes. He goes to sleep around 9:30 or 10 at night and sleeps until 3 am giving us both a good block of sleep. From then on out for the rest of the day he wants to eat about every 3 to 4 hours. He is 6 weeks old now. I think he weighs around 11 pounds.

Santi has been sleeping in the crib that my brother, sister and I all slept in as babies. My mom saved it all these years for her grandbabies. Now she has two that will get to enjoy the comforts of the bed that we once slept in. Here is Santiago snoozing in it:

Yesterday we went to visit Allison, Tim and baby Blake again and when I walked in her living room I didn't even notice Little Bit sleeping on the lamb rug on the floor. I saw the pink blanket but missed the little peanut! Doesn't she look precious! She is still battling a little jaundice but we are hoping that it clears up soon.

Great-Grandma Hazel came to visit us at Alli's too. Here she is loving on my little man.

Happy St. Patty's Day

Hector left Midland this morning so we had to take a picture with the little leprechaun before he left. Santiago and I are staying in Midland a few more days with my family and Hector and his dad are going fishing at the lakehouse on Lake Buchanan. I hope they catch some big fish! Hec was sad to leave us (Santiago really) for a few days but he will be having fun while he is away.

Here are two of the cutest lucky charms you will ever see. Santi is doing one of my very favorite things in the first picture - stretching as far above his head as possible. I love it! You should hear the sound he makes when he is finished. He is a grunter and a sigher.

Just look how big my Santiago is compared to Blake! It's amazing to think he is that much bigger but he is still really little. She just makes him look like a big boy! Don't you just want to pinch them?!? But you can't...they remembered to wear their green!

Busy Weekend!

Hector, Santiago and I traveled to Midland on Friday evening to come and visit the McLane family in Midland. Baby Blake was born on Thursday and we went to meet her on Saturday. Here is beautiful Blake Michelle Trevino and her pretty mommy Allison!

Here is a close up of tiny Blake. She has the cutest little features. Such a little peanut!

Santiago was so excited to meet his new cousin. Look at how he is checking her out:

Santiago got to meet his great Aunt Pat:

Here he is with Great Grandma Pebble and Great Grandpa Bob:

Saturday was a very busy day and Pappaw and Santi were very tired so they fell asleep together.

Happy Birthday Blake Michelle!

My sister Allison had a little girl today! After a long day of being induced, Alli finally had to have a c-section. Blake Michelle Trevino arrived at 8:50 pm weighing 7 pounds and 3 ounces and is 19.25 inches long. My parents say that both Allison and the baby are doing well. I can't wait to hear all the details and see her sweet face! Hector, Santiago and I are flying to Midland tomorrow to visit and meet my new little niece. It is such a blessing that Santiago and Blake are only 5 weeks apart. The cousins are going to be the best of friends = )

3 Year Wedding Anniversary

Today is Hector and my three year wedding anniversary. It feels like we have been married much longer than that especially now that we have a little boy. We are quite the perfect family!! Hector did two really sweet things for me today - he made me my favorite dessert- yellow cake with chocolate frosting and gave me some beautiful roses. We went to eat at Olive Garden for dinner and had a great evening. Santiago was very well behaved at the restaurant. Here is a self portrait of our happy family!

Earlier today Santiago and I had our first "play date" and lunch. I hope we have many more to come in the future! My friend Angela from work had her little prince, Christian, two weeks before I had Santiago. So Santiago is 5 weeks old and Christian is 7 weeks. We are hoping they become great friends in the future. Here is a picture of our two little men all ready to go watch their mommas eat at the Black Walnut Cafe. I couldn't get Santi to look straight ahead...he was too interested in the dogs!

Happy Morning

Santiago woke up very happy this morning. We both had our best night so far. He slept for almost 5 hours straight before waking up at 3 am to eat and then went back to sleep until 7:30. It was so nice to have more than a couple hours of sleep at one time. The pictures above were taken playing on his jungle gym playmat after eating breakfast. He has discovered that when he wiggles and kicks he can make that red mirror move. Santi loves seeing himself and this keeps him happy for about 30 minutesat a time. It's so fun to see him wiggle, kick, smile and make cute noises!

We had some special visitors yesterday. This is Hector's godson Adrian holding Santiago. He came with his dad Gus and aunt Dede which are Hector's cousins. It was great to see all of them.

After all the cousin's left, Santiago and I laid down for a nap. Lately it has been real easy to get Santi asleep during the day for a nap by holding him but as soon as we lay him down he wakes up very unhappy. I laid him beside me in the bed while Hector went in another room to get something and the plan was for him to come back to take Santi so I could rest. Before he made it back, we both had fallen asleep! Hector moved Santiago into the bassinet awhile later.

Some news about Santiago

Our little boy turned one month old on Wednesday! I can’t believe how fast time flies and how much Santiago changes everyday. We have had quite a busy month. I have a lot to update you on so here it goes: A few days after Santiago was born I asked my parents what they thought about Santiago as far as the way his head looked. Of course they think he is beautiful but my brother and sister were born with craniosynostosis and I wanted to know if they thought my little angel had it or not. This is something they cannot test for or identify until a baby is born. My mom’s eyes immediately filled with tears and she told me that they were afraid he had it. Craniosynostosis is a condition where the sutures in a baby’s head are prematurely closed causing the head not to be able to grow correctly. I got a referral from my pediatrician for a cranio-facial surgeon and with my dad’s great persuasion skills we were able to get an appointment for the following week. Santiago was 13 days old when we went to see the doctor for the first time. Sure enough he confirmed my fears. He told us that Santi had uni-coronal craniosynostosis on the right side. This past Tuesday we had to take Santiago for a CT scan on his head. That was a terrible experience! Actually seeing the results makes me understand the problem better. Technology is amazing and even though I wish we did not have to go through this, I am thankful they can fix my little boy. Surgery is scheduled for Wednesday, March 25th. Santiago will have to wear a helmet for 2 to 3 months after surgery as part of the correction process.
Please keep us in your thoughts and prayers!