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Down Syndrome Center

First of all, I was planning on posting this on Wednesday, but we just moved and my laptop was placed in a random box.  Thought it was lost forever, we finally found it last night!  Anyways…

This past Tuesday Jana had another trip to the Down Syndrome Center.  This is the awesome center she has visited twice before.  We are there for about 4 hours, but we see 6 different specialist.  Its one of our favorite visits because we get so much accomplished!  We started with seeing the Occupational and Physical therapist.  First of all, they were very happy with Jana’s progress.  They feel she is making great improvements and they gave us some tips and exercises to help move the walking progress along.  Also, they submitted a referral for Jana to receive Occupational Therapy there in San Diego.  It means that we will have to take the 2 hour trip every two weeks or so for her to receive the service, but it is not offered in our area and  I know it will benefit her.

The dentist was happy with her teeth and found out she has 10 teeth now!  We haven’t been able to count good because she bits us each time we are close lol.  They want us to schedule an appointment at the dental clinic at the hospital.  Nothing to worry about, just starting her on a healthy check up plan.

We were able to see the Speech therapist.  She was happy with Jana’s progress but knew there was more that could be done.  Our local regional center doesn’t feel a speech evaluation should be done before the age of 3.  The specialist at Rady’s did not agree!  So a referral was put in for her to be fully evaluated as well as be put into a special play group/speech program.  Yup that means another 2 hour trip at least twice a month for this service.  I’m hoping somehow magically they can be on the same day, but even if they aren’t she is worth it!     IMG_0078

Next on to Nutrition!  For the past year I’ve been bringing up the point that she hasn’t gained much weight.  She has been pretty consistently around the 18.6-19.2 lbs range.  Obviously that doesn’t seem right.  Finally someone agreed with me!  The nutritionist was worried that maybe her body is not digesting her food properly therefore she is loosing nutrition.  This would explain the throwing up often as well as the horribly stinky diapers (seriously!)  So she want’s Jana to see a GI Specialist to see what they suggest.  From there possible testing will be done such as x-ray or even a biopsy of her lower intestines.  She also gave us some pointers on some Lactose free products to try to help raise her calcium intake.

Finally we ended our trip with the Pediatric Specialist.  This was a new young doctor who recently took over the Pediatric Down Syndrome Department.  She was amazing and Jana just loved her!  We received a referral for her to possibly start taking Jana to a pediatrician in San Diego.  That way they will have access to all her hospital visits and updates.  And truthfully, she would receive overall better care.  (Yup, means possibly more 2 hour trips!)  She agreed with the nutritionist and felt Jana would benefit from seeing a GI specialist.  She also wanted to run blood work to check her normal hemoglobin count as well as rule out possible Celiac disease.  This would be a gluten allergy and could explain the low body weight.  So after we finished with the clinic we IMG_0083went right over to have her blood work done.  I have to say, my girl is MUCH stronger than me.  I am such a chicken with needles, yes even after 3 births, a spinal tap and a tattoo, needles freak me out!  But my girl took it like a champ.  She watch everything the nurse was doing and even held her arm still.  While sitting in Daddy’s lap (I wasn’t about to force her to do that!) she didn’t even whimper!  The nurse was impressed 🙂

So the next day the Pediatrician called us to inform us that Jana is clear of Celiac disease!  They are having us run more blood work when we go up this coming Wednesday for her ENT apt.  This is to hopefully rule our more things. 

So I’d say this was a very successful trip to the Down Syndrome Clinic.  It was a long day but truthful we got so much taken care of it was all worth it.  It is easy to complain about the possible trips we will be adding to San Diego.  The cost of gas, the time to travel, the re-arranging our schedule.  It’s very easy to see that all as a negative.  But I know there are a lot of mamas who wish they had the option to take those trips.  They have missing parts in their hearts from the little ones who were taken too soon.  This past year our DS community has lost a handful of beautiful babies and I need to remember to be grateful for all the annoying appointments, the long car rides, the countless phone calls and arguments to get her services.  All of it is because Jana is here!  She is mine and she is worth all of it!  None of us are guaranteed another day and I need to remember plenty of mamas would take my place if they could.  This past week especially I have tried to truly cherish my time with Jana.  With all our babies actually!  Life is so precious and things we least expect can come our way.  So, do me a favor, if you reading this and you have children at home, stop and make sure you hug them a little longer than normal.  Kiss their sweet faces and make sure you savor their smell.  Cherish every moment you have.  We are all so blessed to have the chance to continue to do these simple acts.

 

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Guest Mama – Valentina

This week I am honored to introduce you to Alexandra.  She is a beautiful mama who reached out to me a few months ago.  Her baby girl Valentina was born with Down Syndrome and unfortunately a lot of other health issues.  Alexandra hasn’t been able to share her story completely yet, until now.  I am so grateful that she trusted me to help bring Valentina’s story to you. 

Not many understand what you feel. Everyone feels something different when they have to say good-bye to their baby. No parent should ever have to bury their child, but sometimes you just have to.

I was very much jealous of the new moms, having their baby’s around the time Valentina was born. It did not seem fair at all. They give birth, they have visitors at the hospital, they go home, they take tremendous amounts of pictures of their newborn. Social media made it worse; you begin to envy them. Then you have to learn how to turn away from it or look at it in a new perspective. I do not remember when I stopped being jealous of others, but it did happen without me even realizing it.

My first time being a mother, was being a mother to a sick child. I believed we both suffered, but I suffered more…because I had to witness what my daughter endured. A baby, a small baby, after one day of being old…has surgery. The next surgery happens forty-eight hours later, an emergency. surgery at that. I remember why that happened. Ugh. The third surgery follows a week after that. Only one week with no surgery, but of course there were obstacles. Your newborn has to be transported to the children’s intensive care from the NICU, because they find blood clots. A few days later…machine becomes faulty, causing your baby’s heart to stop and having to be revived. The scariest phone call at six in the morning ever. I forgot I was recovering from a caesarean. That week goes by, but the beauty of that week, was seeing my baby open her eyes again after so long. Understand she is incubated, and under heavy medication. Fourth EMERGENCY surgery, we were told the chances are very very very slim. I honestly believed that when the doctor left the operating room, she was going to come back with the worst possible news ever, but no! I got another day with my baby. Surgery five comes along to finish up surgery number four work. A few days after that reality sets in. I learned within a one week time span, my daughter being incubated, was her being on life support. If she were to be off it, her heart will slowly stop beating. She was living because of a machine, the machine was assisting her. She was strong through all that though. My daughter did fight very hard, but at the end I felt as if she were fighting for me and her father. Fighting for us to realize that she is meant to be with our God. Those five weeks we had her…her father and I kissed her, hugged her, held her, smelled her, washed her hair, combed her hair, read her books, played her music, told her stories, and always told her we love her. I hardly ever left her side and if I did, I felt guilty.

I had to find a new strength within myself that I never believed I had. In doing so, I felt the dedication and determination to still provide the best I could ever provide to my baby. Even though she was incubated, she had a G-tube in her stomach for her feeds. She was being supplied her nutrients and TPN, but there was an occasion or two she was able to have breastmilk. Those were one of many happy moments. I pumped everyday, up until the very last day I had with my sweet girl. In five weeks I was able to store 498 ounces of breastmilk, which I donated to Mother’s Milk Bank in MA. There were many times I wanted to give up, because i just knew she was not going to have my milk, but I could not find myself ultimately stopping. Pumping, was my hope that my baby will come home. I have endured the horrors of pumping. They promote the beauty of breastmilk, but not the hard work that comes along. Being a milking cow was not easy, but it was my hope.

Five weeks, thirty-seven days of happiness, sadness, and stress. Will I do it all over again? Yes, yes I would. I had my baby in my belly for thirty seven weeks. I saw my baby. I held my baby. I kissed my baby countless amount of times. I learned a lot in those five weeks. My daughter taught me her strength, and I had to be just as strong. I tried not to break down in front of the nurses or doctors, because I simply did not want to be bothered with a social workers. So much occurred in such a short amount of time, I honestly cannot believe I experienced it. I admired my husbands strength too. He was there day and night, and still working his full time job. I know he was exhausted, but he loved his little girl. I know he loved her more than me, he would not admit that of course. My husband and I married AFTER our daughter passed away. We felt we needed to be united as one, and be a strong family. We were told many times, many of those who are put in our situation, do not make it. My husband and I surround ourselves with love, and we made sure our sweet girl knew of it.

We both learned from the beginning we had to be strong and fight. We had to have faith. It is so hard to have faith when you cannot see it, but if you allow to fall back on God, faith will always be there. God never left our side; we may have here and there…but He never left our side. He guided us every single step of the way.

I mentioned my husband and I had learned from the beginning to be strong and fight, well that is because we learned while I was still pregnant at twenty-two weeks that our daughter had a heart condition (AV: atrioventricular canal) that required open heart surgery, we also learned that she had Down Syndrome, which is very common for these babies to have a heart defect. I honestly hated myself after. I only say this, because when I learned of the results, I became selfish. I prayed for the doctors medical report to be wrong, and that my baby was going to be healthy. I was scared while being pregnant. The society we live in is so scary, I did not want people to mistreat my girl. I automatically wanted to protect her. I thought me knowing of her having Down Syndrome was going to mentally prepare me, instead it taught me, even while being in denial, that I had to be strong. I had to enjoy my remaining weeks of pregnancy with my baby. I could not let the countless amount of appointments bring me down. It was almost taking a toll on me, that I took control and cancelled so many of them! Of course my OB had to explain the what if’s, but I knew she trusted my instincts.

Just know that we (family and friends who knew what was going on) prayed hard for our girl. Heart remained strong, her having Down Syndrome was not a problem, she was born with a completely different condition that is apparently also “common “ in Down Syndrome babies…imperforate anus…no anal opening. At first I thought it was funny; I tried to have a sense of humor during the difficult times. Her having this condition, caused the many surgeries. At first everything seemed okay, but something else was wrong.
My daughter became septic. When exactly? I do not know.
Her heart remained strong.
Down Syndrome what?
Imperforate anus what?
Hello sepsis…Good bye sepsis.
At the end of it all. There was a miracle. It was not what I wanted exactly, because I wish my baby was here on earth with me.
Her soul was too beautiful for this earth.
She belonged with God.
I felt her soul was no longer here on earth, when she took her last breath in her parents arms.
Yes, my husband and I decided that enough was enough.
My baby was tired, and she fought hard for me, her dad, and herself.
It was time that we all had some peace. It hurt for a very long time, and everything felt like a dream, and sometimes it still does.
What can I say? I am human, you think these things. You question our God, and then you feel guilty for questioning Him; well at least I did.
My God was by my side anyways. He knew what I was going to say or do.
He wrote both our stories.
My daughter’s story is beautifully written.
I will still cry here and there, like I said I am human.
I will always love her. I will always miss her.

I am currently pregnant with her little sister. I was scared at first, but I am also leaning to enjoy this pregnancy day by day.
That is another day for going into details about being pregnant after infancy loss.

Valentina Faith Mejia. My favorite girl.
I will always celebrate you.
I know your presence is around me always.
I love you.

-Alex

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Heart Warrior

When Jana was born she had two defects in her heart.  One PDA (In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation)  The second was a ASD (A “hole” in the wall that separates the top two chambers of the heart.  This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides.)   Last year she had a full ECHO and EKG done to monitor these defects because surgery was not needed at birth.img_8755

Yesterday we had to do the ECHO and EKG once again…

First of all, whoever thinks getting a toddler to lay still for over an hour to do the ECHO is CRAZY!!!  Seriously, I can’t keep this child still for anything!  Except…yesterday 🙂  We had to leave our house at 5:30 am in order to take the 2 hour drive to Rady Children’s Hospital.  This meant, Jana got taken out of bed, and put straight in her car seat.  She stayed asleep till about 6:30…normally she is up around 8:00.  So that right there messed her whole schedule up.  We arrived with her favorite move (HOME) downloaded on our IPad, as well as a few episodes of her favorite show (Kazoops!)  We img_8750got checked in and they put the monitors on her chest and tummy.  Then, asked us to keep her still for the duration of the test!  For the most part she did stay img_8747still…even fell asleep for about 30 min!!  It was probably the most I’ve snuggled with her in a long time!  But around the 50 min mark, not just Jana, but mama and daddy were fed up and ready to move around!  Luckily they were able to view her heart as well as main arteries in her neck and lower chest area.  How she did it, I img_8757have no idea!!

It was now 10:00, and time for the EKG.  This LUCKILY is a very quick procedure and she is allowed to at least sit up.  They hooked her up to what img_8756seemed like a hundred wires and the test itself took about 2 min!  Our girl was going strong.  She hadn’t thrown a single fit and was still being her adorable self.

Finally it was time to see our Cardiologist.  The last time Jana saw him, she was smitten 🙂  We’ve said he is her favorite doctor because he is the only one img_8751she has ever flirted with.  Unfortunately, by the time she got to see her McDreamy , she was sound asleep 😦  But that just meant, mama and daddy could talk to him a little less interrupted.

img_8758 So what did the test show?  Well, her PDA has completely fixed itself.  That means, that is no longer an issue and can now be left alone.  Then came the pause…..  Her ASD is currently open about 6mm, that means it is letting blood flow into the right side of her heart.  Meaning, the right side is slightly larger than the left.  If left untreated, this can cause serious health issues.  So a surgical procedure will be done next summer to fix this issue.  They will be going through her main artery in her leg and hopefully be able to fix it without fully cutting her open.  He feels waiting one year will help her vessels grow a little.  Currently they are roughly the size of her pinky, and the instruments he needs to use are just about the same size.  Obviously that is an issue!

So this summer she will have a tonsillectomy and adenoidectomy then next summer her heart surgery.  Which means, I have a full year to stress and freak about my daughter having heart surgery!!  Ugh!!  I am honestly trying to stay positive about it.  Our situation could be much much worse!  We are very grateful for our babies health but it does not make surgery any easier.  It is scary, it is stressful, but it is needed!  Our girl is a warrior and I have no doubt she will amaze all of us during these surgeries.  I trust that God’s had is watching over her, giving her the best doctor’s for the job, and will see her through it all.  I just need His help a little more to deal with the extra worries.       

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Meeting up with our ENT

img_8150Ok so we met with our ENT this past Friday.  He examined Jana and set up a plan.  Basically because her sleep isn’t horrible (even thought most times I feel like it is!) he wants to hold off on surgery if possible.  He prescribed Flonase for us to use for the next 6 weeks.  He is hoping that it will help open up her airways a little to help out her sleep.  He was slightly concerned about some water in her left ear.  She does have a cold right now, so he is hoping it is just that.  When we go back, if there is still water we will have to consider putting tubes in her ears as well.  Also, he needs to wait to see what our cardiologist has to say in case she needs surgery on her heart as well.  If everything goes as planned, she will have her tonsils and adenoids out this summer.  That I can handle.  Adding tubes in her ears and heart surgery….that brings me nightmares!  So please pray that everything goes smoothly!!

On another note, we are excited to share with you that Jana has finally started standing up on her own!!  So far shes pulled up on our TV stand and last night I caught this on her video monitor!  She officially can stand up in her crib!!  Now nothing is out of her reach!!

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Results Are In

You might remember reading about our sleep study (read about it here) that was done this past November.  Well, yesterday, we received the results.  And let me tell you, it wasn’t was I was expecting or all that thrilled about.  freespirt-3

We met with the pulmonologist and he said that yes in fact, Jana has mild sleep apnea.  She basically pauses in her breathing at least 4.5 times per hour.  He was actually pretty confident that number is probably higher on a daily basis.  Jana didn’t reach dream state during the study.  Maybe it was the 1,00o cords strapped to her tiny body that just wouldn’t let her relax enough. (Please read that last sentence with a very deep sarcastic tone!)  That was it, it was our answer to why it seems like she just can’t sleep, no matter what the day looks like.

What’s the culprit?  Her adenoids and tonsils.  They are taking up way too much precious space in her air ways, and must be fixed.  How do you say we do that?  Well there are two possible solutions.  We can try a slightly experimental way of using steroids and sprays to try to shrink them.  (Yes, her adenoids and tonsils can actually shrink!  Crazy I know!)  However, there is no research that shows this method works with children with DS.  He feels that the surgery would be the best rout to take because it will also benefit her overall breathing and help prevent her from getting sick so often.  The ENT will be the one who figures out the final outcome.

We currently have a follow up apt to see the ENT late March.  Her pulmonologist doesn’t want us waiting that long so he is trying to bump up that apt.  Also, her cardiologist will need to sign off on it to make sure her heart can take this procedure.  (Which yes, there is still a small chance she will need heart surgery as well…she’s going to give me a heart attack!)

So here we are.  After being ridiculously lucky and not having to have any surgeries or procedures, Jana will go under the knife.  It is a very routine procedure and usually they can go home the same day.  However we read they do often keep children with other health care issues overnight for monitoring.  I am not happy with these results.  I almost broke down crying when we heard the word surgery.  She is only 19 months old, and the thought of someone cutting her tiny body terrifies me.  But its for the better good right?  I have to trust that God will bring her through it and she will be 100% better!!  I’m also sure freespirt-1that she will probably have more surgeries in the future and honestly, we are very blessed that she is as healthy as she is.

This is just another thing that DS brings to our world.  Sometimes she will be perfectly healthy, and sometimes we will have to watch her do things that are just going to hurt.

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Pulmonary Specialist

Yesterday Jana finally had her apt with the Pulmonary Specialist.  This is the guy we needed to see to get the sleep study referral.  Which we did!  Yay!!  But let me back track a little…

We started our day in San Diego…we took the kids to Old Town for the first time.  I used to go there all the time when I was little and thought it could kill a few hours.  They liked it…but I do have a 15 year old now.  He wasn’t all that impressed.  Peanut loved it!  She always loves being outside…but since we live on the face of the sun, she hardly has that chance.

Her apt was at 2:00 at Rady’s.  It was our first time there so we saw a PA first and then the doctor.  We had to fill out a questioner about her.  What a big slap in the face to remember she is adopted when you have to write Unknown on almost everything!  I guess that’s just IMG_4921part of the adoption problems.  Anyway, they instantly agreed that a sleep study would be helpful because Jana has some issues.  First, she has bad blood circulation in her legs.  There is nothing that needs to be fixed but if she is still for a while her legs do turn slightly purple.  I bet that explains why she is constantly moving in her sleep.  Second, she snores!  This could be a blockage in her airway or she might not be getting the oxygen she needs.  (And obviously the Down Syndrome itself is a reason to do the study!)  The doctor went over our nightly schedule with her to try to see what can be changed.  His diagnoses….we hold her… A LOT!  We hold her to rock her to sleep and apparently that is not allowing her to learn how to put herself to sleep.  So we IMG_4923hold her too much…*sigh*  I admit it, we do hold her quite a bit.  And yes, I probably over confiscate for the fact that I didn’t have her during her first month.  And Daddy loves his time with her before bed because he finally gets to cuddle with her.  The doctor wants us to time ourselves before we pick her up.  1 min, 2 min, 3 min, and so on.  Yes, she will cry…and we wait 😦  Honestly, not sure how well this will go.  I was never able to do this with the other kids…and when she starts crying…she screams!  She loved the doctor though and enjoyed everyone telling her how beautiful she is 🙂

Last night was HORRIBLE!!  She was almost awake literally all night!  After being outside all day in the beautiful San Diego weather and not taking her nap, we thought she would sleep like a rock!  No such luck.  It was literally the worst night I think we’ve ever had.  She was awake way more than asleep.  No IMG_4952matter what we did.  She just seemed uncomfortable.  As soon as we would get her to relax, she would wake up again crying.  This morning at 5 I finally gave in and had her come in bed with us.  Its pretty much impossible for her to sleep with us.  She moves WAY too much!  But apparently being in bed with mama and daddy is super fun!  She was laughing and playing with us.  Yes, it was cute and we were playing back.  But we were exhausted too!!  How she wasn’t I have no clue.  Around 5:40 she finally crashed.  It is now IMG_495410:30 am and she is still in bed!!  Its almost like she pushes her little body to the point of exhaustion and then just crashes.  Unfortunately, we don’t have that luxury to sleep in every morning!  Praying we can get this sleep study done soon!!!