New details on conditions

So I went to the Spina Bifida Clinic today and found out new information.  Luke is now 10 months and has been progressing impressively.  Today when he was seen by each doctor I was told that he would need to see a developmental pediatric specialist because he seems a little behind.  I agreed and set up the appointment.  When the orthopedic came in he was a little shocked to see how he had low muscle tone.  He decided to check the ct scans he had and discovered that Luke in addition to having spina bifida also had an absent corpus callosum and cerebellar hypoplasia.  I was never told about this and just thought it was just the spina bifida so you can imagine my shock, my anger, and my hurt.  The ortho said he didn't have any explainations to why I wasnt told about this sooner and couldn't understand how they could miss that.  But he explained to me as much as possible.  Right now we really dont know what the future holds but our faith stands strong.  The Occupational Therapist was surprised that he was breast feeding and the little hand motions has developed along with picking up his head. So yes I do have hope.  My faith in God will never fall because I know he has his will.  With prayer and faith my son will show us the unexpected!  Today I went into that office expecting them to tell me how great he's doing and what a way he has come to hearing that he will have a hard life.  Imagine my heart break.  I am just in shock, when I asked other parents alot of their responses were they were told about brain development in utero but when it came down to it they never actually met some one who has had those problems.  Well just our luck, Luke happens to be one of them.  I will keep you updated and we go just finding out this information.  And to the new parents expecting a child in this condition I am open to any question but please remember I am just learning as well but I will give you advice if I have experienced it.

After Follow Ups

Luke has been doing great.  So far we had a follow up with the urologist and so far he does not have to be cathed but it is still on an only time will tell basis.  Once he is old enough to get potty trained we will know for sure.  Currently it is all up to me and I chose not to because I want to leave it in Gods hands.  We went and saw a kidney specialist and she said he had a little bit of fluid backed up in the kidneys but nothing to be concerned about, in fact she said "This little boy has perfect kidneys!" Now we don't have to see her for a year.  His shunt has but functioning great! No malfunctions are back ups.  He has been having CT's every 3 months and the doctor felt confident to move it to 6 months.  The Optomitrist said he has all his nerves intact correctly and his vision seems great right now but will probably need glasses later on in the future.  He sent me to a different doctor who is going to talk to me about surgery on his left eye to straighten it out but he wanted to give it some time to see if it would straighten out on its own.  The reason his eyes kind of looks inward and he has to really try to focus but this is due to the hydrocephelus when he was born.  His Ortho seems to think he will be using a wheel chair but I really doubt that.  He does have leg movement but everytime we go and see him Luke makes me look like a liar. lol. Its okay I see them get stronger every day.  He doesnt put much pressure on them standing up but there are times when he does try.  I started noticing when I pick him up like hes flying while playing with him, he tends to move them dramatically and it looks like a miracle, so as for right now I am working with him on that so it can build up his muscles.  The Occupational Therapist says he is doing great.  He can pick up a spoon and put it in his mouth. He always started transfering toys one hand to another! Which is great!  He his alway laughing and filled with joys.  Loves all the attention from his family and our friends.  I cant wait till he gets big and more active so he can start doing more stuff.  I am so excited for him and truly blessed.  Please keep him in prayer!

Back Closure

Monday morning my tia Terry and I went to see Luke before he had his last surgery.  We spent maybe an hour with him before they took him in and he was upset because he was so hungry.  I hated seeing him like that.  His plastic surgeon came in and told us that they will be doing the skin graph and was trying to prepare us for what was next.  We waited for about 3 hours until Dr. Wang came out.  He called my name in the waiting room and once we went up to him he told us, "Mrs. Vasquez, we were able to close your son's back with out the skin graph.  He looks good and is in recovery.  You'll be able to see him shortly."  Hearing him say that, I was in awe.  I couldn't believe it.  I was preparing myself to see him and couldn't stop worrying about the scarring and the way the back would look.  I was afraid to see it.  Some pictures that I've seen of back closures from parents on-line had frightened me.  I was worried about how it would look and how he would feel.  That day and night I really wasn't allowed to hold my baby boy.  All I could do was see him and the nurses would feed him.  He was on a bunch of pain medications and just so not himself.  The next day when I went in to see him the nurse asked if I wanted to clean the wound.  I really didn't want to because I was so nervous to see it but I decided that I had to step up and take charge.  Like I said it wasn't about me, it's all about him.  I asked God to give me strength and wisdom.  To walk me through this and teach me to be a good mother to my child, to get me prepared.  Once the nurse removed the dressing, my mouth dropped.  It looked so painful.  But he was fine!  While cleaning the wound it didn't seem to bother him.  He is so strong!!  We had to wash it using guaze, baby soap, and sterile water.  Followed by a rinse and bactrine (antibiotic ointment) then covering it back up with the guaze.  We had to clean it with every diaper change.  Very challenging but we did it.

 

During this week the nurses were just teaching me how to care for my child.  They stood by me and my husband, along with my mom and tia's making sure we capable of caring for him.  By day three I was able to carry him and breast feed him again.  It was so much more comforting that the wound vaccum had been removed and he was free of tubing.  Later that day I was notified to stop cathing because his sonograms on his bladders came out fine.  Whoo.  What a relief.  The nurses started getting me ready to take him home that Friday.  Unfortunately he was not released till Saturday because of paper work and they wanted to make sure I received the medical supplies at my home.  Saturday he was HOME!  Thank you GOD!!!!  I praised him all day.  Prayer is a strong thing.  Don't ever give up and don't lose faith.  HE holds my hand through my whole journey and we still have quite a long one to go.  I am sorry if the picture is graphic to anyone in anyway but I decided that I am doing this to tell our story and I don't want to leave any major details out.  I want other mothers going through this to know they are not alone.  I want them to know that there are others and we need to stand by each other so we can learn from each other.  My next blog will start from a few stories of recent doctors appointments to our life now.  I just wanted to tell our story of how it started to explain our situation.  If you have any question feel free to comment and ask.  I have no problems answering them if I do have the answer.  If you are a mom and in the same situation I don't mind being the shoulder to cry on when you need comfort or ears to listen when you need to vent.  I've been there when I was pregnant and I am going through it right now as we speak.  Luke is currently 3 1/2 months and this is his scar.

Another Battle!!!

The third Monday in the NICU Luke was up for his next surgery.  The plan was to just change the wound vac with new tubes and dressings and check if it was doing its job.  Unfortunately he ended up getting a debridement.  Debridement is the medical removal of a patient's dead, damaged, or infected tissue to improve the healing potential of the remaining healthy tissue.  His feces ended up getting into the wound because it was so low to his bottom.  They changed all the dressings and sent him into recovery.  Once again he wasn't able to start feeding right away.  It didn't take him long till he was up and alert though.  Man, he is the strongest person I've ever known.  We were told by his plastic surgeon that he would need a skin graph due to the width of the opening on his spine.  They would remove skin from his tummy below his belly button and place it on his back.  If this is done he would be very delicate until he heals and would have to be in isolation to avoid any infections. Later that week we receive the blood work back that the surgeon requested during his debridement,  It came back positive with two different types of infections that he needed to start antibiotics right away which were major and could cause problems with his hearing.  He took the antibiotics all the way for 10 days by IV plus the amoxicillan by mouth.   Another week of sitting in the hospital wondering whats next.  I received notice from the nurse that the doctor ordered more ultrasounds of his bladder and it started to retain small amounts of urine again.  I had to start cathing once again during this week once every 6 hours.  They had people come and talk to me about home health care because they wanted to send Luke home with the wound vac and needed to instruct me on changing the dressing.  I couldn't do this, I was so scared and asked them to keep him until it was fully removed.  Thank God the head nurse agreed and insisted that if I didn't feel comfortable that it would be best for him to stay.  Another Stressful, scary week to indure, and still had an upcoming surgery that following Monday.  I really wanted my baby boy home but it was best to keep him where I knew he was safe and in good hands.  Thanks to all the nurses in the NICU at Methodist Children's Hospital they were one awesome team!

Whats Next

The day after Luke was born we were told that he would need a shunt placement.  He was born with 33mm Hydrocephalus (Fluid in the Brain).  The VP Shunt would Circulate the fluid from his brain to his stomach and pretty much recycle it.  That would be placed in the following Monday.  He was just starting the tube feeding with breast milk which he was able to hold down right away.  Luke was tube fed for the first week then started taking a bottle and breast.  He had a wonderful appetite and was recovering great from his first surgery.  All during this first week it was just test after test, of bladder, kidneys, bowels, brain, and blood.  All we could do was just sit and pray that he would be strong and make it through.  I remember seeing him on all his pain medications and he just looked so out of it.  He wouldn't cry, or move.  All he would do was sleep. He was on the heavy stuff for about 3 days then they were able to take him off.  The third day he moved his toes, the fourth his foot, and the fifth day his leg.  My son proved the doctor wrong so far.  On the 4th day they allowed us to hold him and change him.  I was constantly going to the NICU from my room just to be with him and pray for him.  That Friday they let me go home and my husband, and mom kept taking turns coming back to be with him.  When Monday came around he had his shunt placement.  Instead of it being the first neurosurgeon it was a partner.  I asked him what he thought about Luke being able to walk in the future and instead of all the negative he told me, "Leave it in Gods hands." 

That same day all he did was sleep.  The second day he was like a different baby.  He had more control over his eyes, and seemed more alert.  The technology they have now these day is just remarkable.  During this week they decided to cath him because his bladder was retaining urine.  I remember being so nervous about doing this and asking my mom to do it for me.  But she wouldn't let me off easy.  She told me that me and my husband are his parents and we have to learn how to do it.  My husband was to nervous so I took on the responsibility.  The first time I did it I was so scared of hurting him that I stuck it in than stepped away and had the nurse finish it.  The next time I did it on my own but kept asking if I did it right.  The third time I was able to do it without hesitation and was so proud of myself, but guess what?  That time I finally got comfortable doing it, they said he wasn't going to need it because his bladder started releasing the urine.  I was so relieved.  That Thursday we were told that he would be up for another surgery on Monday to check if the wound vac was doing its job and if the cells were catching.  I was so depressed, every time he recovers he had to go back under.  It was very stressful and overwhelming.  I couldn't handle all this but I had no choice, I just wanted Luke okay and in my arms.  My next post will be about his following two surgeries and his release home.

PS. He extended his legs today when his dad was holding him with alot of force.  That was the first time he has ever done that. :) GOOD NEWS!

Lukes Here!!!

December 13, 2010 I was scheduled for my C-Section.  Were arrived at the hospital at 5:30am and got checked in.  My husband and I sat there nervous for what was to come.  We didn't now what to expect and what our future would be like.  I asked the nurse if they have delivered Spina Bifida babies there at Methodist.  She told me, "We get about 5 a year."  Wow.  Okay.  She assured me that I had the best Doctors in San Antonio that would work on Luke (she was right).  I went into the delivery room about 9am and was given the epidural along with some other meds.  My husband came into the room along with my mom and they started the delivery.  When having a C-section they have a sheet covering your sight so we did not see the Doctor while she was taking him out.  When she was doing the C-Section something fell and we heard her say "Oh sh**" all three of us started freaking out and asked if everything is okay.  She responded back "Yes.  Sorry, everything is fine.  I just burned myself with the instrument."  Man all of us were cracking up, I guess were weren't the only nervous ones, then my facebook kept going off and everyone was just laughing.  I guess we were just trying to make it as comfortable as possible.  By the time we new I My husband looks at me smiling, "Luke's out Babe.  He's moving his legs and everything."  He says.  I started crying "really, let me see, let me see him.  I want my baby."  They took him over to me and he was so beautiful and remarkable, but they had to take him for blood work and all that other stuff.  I asked how his back looked and my husband said nothing was even sticking out.  It looked more like a scrape on the back.  It was wide and long.  They took him straight into surgery.  It took 2 hours for me to recover and start moving my legs again before I could see my husband and my mom again.  Once I saw them Luke was still in surgery.  My Husband, mom, and aunts were taking turns in the waiting room to hear from the doctor.  By the time we knew it his neurosurgeon came to my room and told us that the surgery went good but Luke will never be able to move his legs.  He will have no mobility whats so ever. The plastic surgeon placed a wound vaccum on his opening with artificial skin so it could suck the skin cells to the skin and it could start growing on its own, if not a skin graph would be necessary.  My husband and I were both freaked out and started crying our eyes out.  We saw him moving when he was delivered. How could this be?  We were in so much shock and just ready to go and see him after recovery. 

Same day as my C-Section once Luke was in recovery I got in a wheelchair and headed down to see him.  He was 7lbs5oz and 21in long, so light complected, with thin light brown hair, gray eyes, no eyebrows or eyelashes, and sound asleep.

  It was so hard to see him in his condition but I got used to it within the first five minutes.  As he layed on his stomach with the wound vac doing its job on his back, IV in his arm, all the little monitors on his chest, and nurse giving him a real strong pain killer, it was tears to my eyes and questions in my mind.  The nurse told me that he would be out all day due to the pain killers.  We had to wear gloves and robes till some test passed that would take two days to find out.  We went back to my room so I can rest.  Later that night I got up and was tired of waiting for the nurse.  I had my husband walk me down to see Luke.  Its so hard when you as a parent are suppose to care, love, and protect your child and can't do a thing but hope for the best and Trust in God.  It was the beginning to our journey, and all we could do is walk by faith.

Getting Introduced to Spina Bifida

Once I found out, all I could do is research.  What is Spina Bifida?  How is our journey going to be?  The first thing I did that night after the ultrasound was google this word "Spina Bifida".  Man oh man, how could this word look so ugly.  All these horrible pictures showed up and the descriptions were so excruciating.  I just started freaking myself out.  I tried to share that with my husband but he wanted nothing to do with the computer at that time.  For some reason it was just making things worse, it made me cry even more, and broke my heart.  I kept asking myself, if I was going to be able to handle it.  Then answered my own question like a crazy person, "Its not about me!  I have to handle it."  I just kept researching and researching and this is what I found. 
There are different forms of Spina Bifida, which are:

Occulta
Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this relatively harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine.

There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood. 

In many instances, Spina Bifida Occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.

Meningocele
The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.

Myelomeningocele
This form of Spina Bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities.

Unfortunately Luke was diagnosed with Myelomeningocele.  Looking more into this form of SB I learned that his motor skills will be affected, his mobility might have complications or he might not have lower mobility at all.  Most likely he would have bowel and bladder problems.  Hydrocephelus which is fluid collecting in the brain caused by the back opening.  Also possible brain damage.

After this I just kept searching and searching for something online that said the doctors could be incorrect.  I continued looking for anything saying its the wrong diagnosis.  I didn't give up!  I ended up finding a website called www.spinabifidaconnection.com and was amazed and blessed with my findings.  This was a support group for expectant moms, kids with sb, parents with kids that have sb, and people who live with sb.  There were so many questions and so many answers.  You know how when you experience something so traumatic and some peoples response is "I understand."  Until I found this website I was like BULL.  No one understands!  But guess what?  I'm not the only one.  There were so many people experiencing everything I was going through and some who have been there done it.  I was so scared and they were there for me and many other expectant moms.  Its was comforting.  I didn't know what to expect when Luke would be born, but many of the parents had pics of their precious babies online and they looked so beautiful, so happy, and so not SB.  Everyday those pictures gave me comfort. Everyday their words gave me confidence. Don't get me wrong I was still scared but it was as if someone was holding my hand, telling me everything would be okay.  The one thing I did hate was when I would ask questions and the one answer I always received was, "wait and see."  Geeze!  How I hate that phase.  I still hear it now! Wait and See.  Could someone just tell me what to expect!  Reality is - Every baby is different, their bodies react different, all people could do, is tell you their experiences and explain the best they can.  That's why I decided on making this blog.  So the next one will be about Lukes birth.  Stay Tuned :)

Finding Out

I had a follow up with my doctor at 16 weeks pregnant for results from by blood work.  When the nurse called me she explained the the results came out positive for Open Spina-Bifida but it was probably nothing and the test is probably incorrect.  She set a an appointment with a specialist for a Sonogram.  The following week I had my mom and one of my tia's go with me to this appointment because for some reason in my heart I felt something was weird and in the beginning I thought I might be having twins or something.  Well thank God I had someone there. I don't know what I would have done without them.  The Sono-grapher took about an hour doing the ultrasound and kept taking notes.  I kept asking if everything was okay but she wouldn't answer, can you imagine being in suspense when someone right in front of you knows and all they can say is, "You have to wait for the Doctor."  Anyways 30 minutes after she walks out of the room the Doctor walks in and says, "Would you like to know the sex of your you baby?  Its a Boy.  But your baby has spina-bifida myelomeningocele and hydrocephelus.  He will not be mobile what so ever, he will have bladder and bowel problems, and he will be mentally retarded due to the fluid collecting in his brain.  We also will have to keep track of his feet to see if they will be clubbed, as of right now they a growing correctly.  Would you like to terminate the pregnancy?"
Uh..... No! I couldn't believe that I was asked that.  I was in shock.  I can't just get rid of my baby!  What am I suppose to do?  How could this happen to me?  What did I do wrong?  Can this be fixed?  How did this happen?  The same questions overs and overs running through my brain.  I called my husband and it sounded as if his heart broke.  All I heard were the same questions that were running through my brain running through his.  He starting thinking and asking himself if it was his fault.  My mom and tia's were all in shock as well and we didn't know what to do.  My mom even blamed herself.  How could this happen?  Not us!! Why us?  What did we do?? It was so depressing, I couldn't stop thinking about all the pain my baby would go through in this cruel world.  I didn't know if I would be a good mom for him.  I was Scared!  I still feel that in my gut, Scared!  It is hard being a parent of a disabled child.  Why didn't I even know what it was!!!!!  Why? Why? Why? Why have I never heard the word Spina Bifida???  The following 3 weeks were the worst ever!! I was constantly getting asked to terminate the pregnancy, but praise God I didn't give in.  I love baby Luke so much it's unexplainable same with my other two boys.  I would give up my life for them they are my ANGELS.