Tuesday, June 17, 2014

OK, mommy and Grandma has kind of dropped the ball on updating this blog. ( I would have done it myself but I was busy too.)  They have missed several appointments so here it goes. On May 8, 2014 my mommy saw Dr. Lindblade the Cardiologist, he said that everything was about the same even though it was a little harder to see the hole were the two bloods mixed.  He also told my mommy that I only had a 25% chance of survival at most. Let's just say that didn't make my mommy feel to good.

May 9, 2014 she went to see Dr. Solomom and Dr. Blumrick. They did another ultrasound. I am still as cute as ever. They too said not much change to report.

On May 12, 2014 My mommy met with Dr. Hervey.  He was my mommies new OBGYN.  He is the Dr. that will be delivering me when the time comes. Everyone in the office made my mommy feel comfortable. They measured her belly and did a stress test.  I reacted just the way they wanted me to.

May 16, 2014 She saw Dr. Solomon & Dr. Blumrick again. They did another ultrasound. This time she said my mommy had a little more amniotic fluid but not enough to worry about. That they were going to just keep an eye on it.

May 20, 2014 Mommy met with Dr. Graziano's team (the surgeons) they explained everything that needed to done regarding my diaphragmatic hernia surgery. They also showed her some pictures of other babies who had the same thing. It helped her understand a little more and to know what to expect. They said my chest would be bigger than my belly because of my liver being up in my chest cavity, that it was normal. She left the doctor's office feeling very hopeful.

May 23, 2014 Again she saw Dr. Solomon, again another ultrasound and lots of pictures. Not much has changed since the last visit.

May 27, 2014 Mommy went to Dr. Hervey's office. They measured her belly again and did another stress test to make sure I reacted normally.....and I did. She will come again in a week.

May 30, 2014 Dr. Solomon did another ultrasound. Fluid was still a little more than it should be but still not to worry about it at this point.  That I have gained a little bit more weight which is really good.

On Monday, June 2, 2014 My mommy had an appointment with Dr. Hervey. My Grandma and Aunt Dayna went with her. The doctor had to check her uterus and my mommy didn't want to go by herself.  I don't blame her, being violated is no fun. Anyway, he told her that she was dilated about 2-3 cm and was 50% effaced. He also hooked her up to a monitor for a stress test. While she was on that it showed that she had a couple of contractions.  He asked her if she had felt anything and she said no. So he scheduled her C-Section for June 23, at 10:00 am.  My Grandma said I know she will not make it to the 23rd, I just have a feeling. The doctor asked if they had seen were she would deliver and were I would be.  They both said no, so the doctor said lets go take a tour.  So we all walked over to the Labor & Delivery floor.  As they walked through the NICU they saw so many little tiny babies and wondered if I was going to be that little.  They then talked with one of the doctors who work with those tiny babies.  He explained the whole process and what to expect. Everyone seemed to be so nice and caring.  This made my mommy feel good and comfortable. On the way home, my grandma said again I really have a strong feeling that your not going to make it to the 23rd. So you need to be extra careful in everything you do.  If you start feeling any contractions you need to keep track of them and if they start getting more frequent then you need to go to the hospital, Mommy said OK.

Friday, June 6, 2014, My mommy had another appointment with Dr. Hervey.  He asked how she was feeling, measured her belly and did another stress test.  Again, while on the monitor she had another contraction. This time she just felt a little pressure. She asked my Grandma if a contraction showed up on the paper that comes out of the machine.  She looked and said yes that was a contraction. So my mommy then kind of knew what they felt like.  They asked the doctor what the game plan would be if she went into labor early. (Grandma asked because she still had the feeling). He gave my mommy his personal cell phone number and said you will call me and I will call everyone else. She said OK, sounds like a plan. Mommy left feeling comforted that they had a plan in place.

On Sunday, June 8, 2014, at about 1:30 in the morning my mommy was laying in bed when she had a strong urge to go potty. As she was sitting up it felt like she had peed her pants. She quickly got out of the bed because she didn't want my daddy to get wet or even know that she had peed the bed. She didn't want to be embarrassed. So she grabbed some dry clothes and quickly went in to the bathroom. She changed and went to get back into bed and she (peed) again...so she thought.  So again, she grabbed some dry clothes and went to change. She went back to bed and ,you got it, AGAIN she peed. This time she decided to get her phone and do some research what it meant to pee so many times in such a short period of time. The results said her water broke.  So she called Grandma at 2:00 am to ask her (because she knows everything).  After explaining to Grandma everything that had happened she said yep it sounds like your water broke. Mommy said what do I do now? Grandma said call Dr. Hervey. So she did and he said get to the hospital now and I will meet you there. Mommy text Grandma and said lets go, please bring my bags.  Grandma was already getting dressed because she already knew it was time to go. (she knows everything). Daddy and Grandma drove to the hospital as fast as they can...illegally.

When they arrived to the hospital the staff immediately started getting my mommy prepared.  They hooked her up to monitors and asked a whole bunch of questions.  Because there were so many people that needed to be there they gave her a medication to stop the contractions to give the specialist time to get there.


After they all arrived, they all came into the room to talk to my mommy, daddy and grandma.  They explained that with all the issues with my heart and the diaphragmatic hernia, not expect a great outcome. They had given me a 3-5% chance of survival. They closed the meeting by promising that they would do everything possible to save my life. Ten minutes later they said it is time to go to the Operating Room. Daddy and Grandma had to put on these white jumpsuits, blue hats and booties and a face mask.  I think they looked silly.....like giant marshmallows.



After they were all dressed they took them into the OR were they had already prepped my mommy. My daddy went up by her head so he can comfort her.(Which mommy said he did a GREAT job doing just that.) They made Grandma stay back by the corner.  She was OK with that because mommy wanted her to take pictures of everything. At 5:35 am they took me out of my mommies belly. They quickly put me on this little table were they quickly started working on me.  I was having a hard time breathing.  They stuck this tube down my throat into my lungs attached to this big balloon looking thing that they squeezed to give my air. It took several minutes to stabilize me long enough to move me to a transporting bed.  They rushed me to the NICU were they continued to work on me for a quite some time.  While they were working on me they were stitching my mommy up.  They had to make my daddy and grandma leave the room while they finished sewing her up.  While they were waiting for my mommy they both walked over to see me.  They had to wait for a while but soon were able to come officially meet me.  They took pictures...of course, and talked to the doctor.
                                     


He said they had to hook me up to a machine that is breathing for me.  They had already taken several x-rays and ran several tests.  They would only let them stay for a few minutes. So they went back to wait for my mommy in the waiting room. Soon the nurse came out to get them. While they were all together in the recovery room...talking about me, of course, the heart surgeon came in and said I have good news and some not so good news. He started off with the good news. He said we have taken several x-rays and ultrasounds of the heart and can't find anything wrong with it.  He said there is NOTHING wrong with your baby's heart.  We will NOT be doing any surgery on it. My mommy, daddy and grandma even the nurse started crying with joy. My heart had healed its self. This was truly a miracle. Then the Dr. said and now for the not so good news, he doesn't have an anus. Meaning there is no exit hole for my bowel movements. So they are going to have to put a colostomy bag on my lower tummy area until surgery can be done to repair my rear.  At least it's not a life threatening thing.

The next several (5 1/2) hours seemed to be forever as I was waiting to finally meet my mommy in person.  I knew what she looked like from the inside now I wanted to see how pretty she was on the outside.  I missed hearing her voice too. Because my moms legs were still numb from the medication, she couldn't stand up on her own so they wheeled her whole bed into the NICU to see me....that was a tricky task. There is not a whole lot of extra room in there. Kind of like when I was in my mommy's tummy.              

Just like I thought, as soon as she saw me she started crying....yes, I am that cute....just ask my grandma. She was only able to touch my foot and leg but that was ok. At least I was able to feel her love through her warm hand. I can't wait for her to be able to pick me up and snuggle with me. She was only able to stay for just a short while. Really long enough to get a run down on my condition and to take a few pictures.                                                         

                                          

My Great-grandpa was able to come give me a priesthood blessing. My mommy got one too.  She said it gave her comfort.  She is so grateful for the priesthood and for Grandpa Keeling and the love he has for her and now me.
                                    

A little while after I got to meet my mommy, the doctors said they are going to have to put me on the ECMO
 machine.  That my lungs are not able to properly function on there own. This involves put these tubes in my main vain and artery in my neck. The machine will take the blood out of my body, clean it and put it back. Basically, do what my lungs would normally do. This was going to take about an hour to do.



Later that evening, the doctors came in and told my mommy that they are going to perform the diaphragmatic hernia surgery tomorrow.  That they needed to hurry and repair and put my organs were they belong so they can make room for my lungs to heal, repair and grow since they were to squished. They also need to get me off the ECMO machine so my lungs can learn to work on there own. It's going to be a long several days.

They decided to do surgery at 5:00pm on Monday, June 9, 2014. My mommy wanted me to have another blessing for the surgery. So Bishop Lance Smith and Mike Crawford came to the hospital to give me that special blessing.  It was a beautiful blessing.  I again am so grateful to have the priesthood.  My parents and grandma are so grateful for them and their willingness to travel the distance and take time out of their busy schedules to give me this blessing.

The surgery took about three and a half hours.  The surgeons came into talk to my parents and grandma again.  They said the surgery went well.  That the next few days are going to be critical.  They have to watch him extra close for internal bleeding and that it will be possible to have to drain blood from my abdominal cavity and chest cavity.
        



































Tuesday, April 15, 2014

Today we saw Dr. Solomon again. She did another ultrasound....let me just say I was super excited to get my pictures done today.  I kept moving around and couldn't hold still.  However, they did get some cute pictures of me. Take a look for yourselves...
         

                               
     





 
Ok, back to my visit with the doctor.
 
 The first good news is I have gained about a pound and a half...yes, that means I am almost three pounds....2lbs 14ozs...total. The doctors say I need to be at least four pounds, but more the better. My mommy wants me to be closer to six or seven pounds.  I think so too.  That way my body will be bigger and will be able to handle the surgeries better. We also met with Dr. Blumrick today who is also in the same office as Dr. Solomon's office.  He is an OBGYN doctor. He will also be a part of the team for my care. His main role is for my mommy.  He will make sure everything is ok with her health.
 
The other good news is that Dr. Solomon had called last week and asked my mommy if it was ok to send all of our info on my situation to two different, well known, specialists to have them look and discuss what they think about everything.  Well, it turns out that those two doctors are coming to Arizona next week and want to see my mom and me.  They want to be part of the team of doctors who are helping me.  This is a once in a lifetime opportunity and they are giving it to me. Dr. Solomon also said she was going to hand pick the doctor that she wants to deliver me. So I only have the best. I am truly blessed!!!  I am so grateful to have such a wonderful team of doctors. 
 
Can I get a high five!!!!!!!! 
                                        

 
 
 
 
Just thought you would like to see a picture of my foot.  I like to kick my mommy a lot. I even tried to kick the ultrasound probe off her tummy today.
 



 For the next six weeks we will be going to Dr. Solomon's office every two weeks.... lots of pictures to come. We will also be seeing the two specialists that are coming next week and we will also be seeing the General Surgeon as well as a couple other specialists...I just can't remember their titles.... 

I will keep you updated, of course.

Friday, April 11, 2014

Today we met with the Cardiac Surgeon, Dr. Nigro.  He seems to be very negligible and optimistic considering.  He said that without the Diaphragmatic Hernia, the success rate for survival of infants with my exact condition is 95%. This news made my mommy and grandma feel a little better. But,  because I have more than just the heart disease it does drop the rate by a considerable amount but he didn't specify how much.  He said he would have to wait until I was born to do a proper assessment.  While we were there they gave my mommy and grandma a tour of the floor I will be staying.  Let me just say it is quite a nice hospital.  They make accommodations for my mommy and daddy to stay with me while I am recovering.  My mommy will also be able to stay at the Ronald McDonald house, which is on campus of the hospital, the entire length of my hospital stay.

Sunday, April 6, 2014



Hello, 

This blog is meant to be a record of the events that has and will happen in this precious little angel sent from our Heavenly Father. In his point of view.

My mom found out she was pregnant on November 26, 2013.  She was already about 12 - 13 weeks along. She was feeling all kinds of emotions....a little bit of everything.  Most of all she couldn't believe that she was going to be a mom.  She called my dad, Victor Lopez, and gave him the news.  He was excited to be a dad.  They both started talking about what to name me (which at this time I still don't even know my name). They started making all kinds of plans.

My mom went to her first appointment on December 30, 2013. This appointment was to confirm that she in fact was pregnant.  Her, my daddy and grandma Keeling went. I think they were all still in shock.  It didn't actually sink in until my mom's first ultrasound on January 6, 2014, when she heard my heart beat and saw little pictures of me. My grandma Keeling cried....she is a big cry baby.  My mom said record this so I can show Victor (he wasn't able to get off work), and she wanted him to be able to experience this as much as possible.  My mom had a couple more ultrasounds done because the ultrasound tech couldn't get good enough pictures of all of my anatomy. So they said she would have to go to another doctor who has a more high tech machine so they can get the pictures needed. On March 26, 2014 my mom and grandma went to Dr. Solomon's office to have another ultrasound done. Again, I didn't want to show my heart.  The tech had my mom lay on each of her sides...I still didn't give them a good look. They made her get up and walk around, drink some juice, eat a couple cookies, even lay on her belly (as much as she could).....still nothing.  Doctor Solomon came in to do some of her own picture scans and I finally cooperated a little better.  That is when she gave my mom some bad news about me.  She told my mom and grandma Keeling that I had a couple of birth defects, not just little ones but life threatening ones.  The first one is called a  "Diaphragmatic Hernia" which  is a hole in his diaphragm, which separates my heart and lungs from the rest of my organs, which my liver has made its way up through that hole and is now pushing my heart and left lung over to the far left side of my chest cavity and the right lung to the far right side of my chest cavity.
In this picture it shows the baby's intestines.  But mine is my liver. The other birth defect they said I have is called an "Overriding Aorta" which is a hole in the muscle tissue that separates the left chambers from the right chambers. One side is for the oxygenated blood and the other is for the deoxygenated blood. With the hole in the muscle of my heart the two bloods are mixing together. This is causing my heart to work harder to get the oxygenated blood circulated through out the rest of my body.



The picture on the left is what a normal heart is supposed to look like. The picture on the right is what mine looks like.

Both of these defects are correctable with surgery.  Which I will have to be put on a machine to breath for me for a while and have surgery right after I am born.  This news scared my mom to death.  She instantly feared for me.  She thought to herself what could I have done to prevent this from happening. Dr. Solomon told her that nothing could have prevented this from happening. It is just something that happened, however, she wanted my mom to talk to a Genetics Counselor, who was in the office already, about possible chromosome issues.  After talking with the Genetics counselor they decided to do a "Amniocentesis", which is when they, with the help of the ultrasound machine, stick a needle into her belly and draw out some amniotic fluid to run tests on it.  This is how they can tell if he has chromosomes missing or to many chromosomes.  If one of these are true that would not be good at all.  There are so many more issues that could go wrong if they were. It is possible that this is the reason I have these birth defects.  The counselor said that it is unusual for a baby to have one birth defect and even more unusual for a baby to have two.  We will have to wait now for the results....My mom is not very patient, she wants the results right now.  So with all the news she received today, Dr. Solomon's office has arranged for my mom to see several specialists.  She has to see a pediatric Cardiologist on Tuesday, April 1, 2014.  She will also have to get an MRI done on Friday, April 4, 2014.  The Cardiac Surgeon, General Surgeon and the Neonatal Specialist are to follow soon. 

My mom called my dad and had to give him the news he wasn't prepared to hear. My mom and dad were so worried for my life and helpless, the doctor had told them that there was nothing they could do to help me.

My Great-Grandpa Keeling and my mom's Bishop Lance Smith came over and gave her a blessing.  She felt the love of our Heavenly Father, which gave her great comfort.  It also gave her the strength to be strong for me.  I am so grateful for my mommy.  She loves me so much. 


The next couple of days were emotional for her.  She started to do as much research as she could about my conditions.  She wanted to know everything she could. She found a chart of all the most needed vitamins and minerals to help me grow and based her diet on everything on this chart, she focused a lot on the main 4 vitamins that help my heart grow and develop. The doctor had also told my mom that I have to weigh at least 4 pounds so that the breathing machine will be able to work for me. My mom had asked the doctors what she can do to help me gain weight, they told her that there was nothing she was able to do. She kept doing her research and found similar women who had similar stories to mine and they helped there babies to gain weight by eating healthy fats like avocados, nuts, 100% fruit juices and more protein. This gave a little beam a hope and my mom started adding these things to her everyday meals. My dad does so much for me and my mom. He works 2 jobs and is soon taking on a 3rd so that he can give us everything we want and need. He loves me and my mom so much and cant wait to meet me!

On April 1, 2014 my mom and grandma went to see the pediatric Cardiologist in Scottsdale. He took some more pictures of my heart.  The results were even worse than they thought. It turns out that lower left chamber of my heart is smaller than it should be and a couple of the tubes for my heart are narrower then they should be. Meaning that they are going to have to do surgery to kind of reconstruct my heart so it can work properly.  It is a dangerous surgery but one that has had many successes. The doctor was hopeful.  He mentioned that the more dangerous out of the two defects was the Hernia. I guess we will just have to wait and see. Oh, and don't forget...PRAY!


In the meantime, I love to move around and kick my mommy. I am still growing the way I should. Can you believe I am already about 1 pound, 6 ounces?  It is amazing they can tell how much I weigh without me standing on a scale.  They were also able to take my picture using a 3-D view. My mom says I have my daddy's lips and chin.  I can't wait to meet him and see if we look alike.