Strength*Faith*Struggle: 2009

I know it’s been a while since my last post. I would like to update everyone on little O Santi. Well let me start by saying a family got in contact with me who also has a little boy with Trisomy 13 ring chromosome ( amazing) their little boy’s name is Steal, a sweet strong boy like Santi baby. Steal is 16mo’s old and is doing well. I must add he’s a cute little one. His Mommy and Daddy are such loving and caring parents. I am very happy they found me; I was feeling all alone for a second. Well with all that said my Santi baby is doing okay. He just got over a little cold witch of course turned into about five other problems. At this point all he is dealing with is his breathing. He is still working pretty hard and pulling under his ribs. After talking with one of his doctors yesterday (Beth) she thinks this just might be him and that just may be the way it is going to be with his breathing. Beth is trying to set up testing for him though to make sure we are working in all the right areas. So I know one of the tests will be having a brain scan to make sure everything is A-Okay in that little head of his. We are working on physical and developmental therapies’. Witch I was a little scared about at first but have now come to realize this is a great step in moving forward. I always knew this time would come but when it came it was a reality check and I was really upset for a while. Thanks to my second mom (Brooke) I know everything going on is a step in the right direction and will better my angle. So thank you Brooke for everything. So I will update very soon on his testing and his therapies’. Thank you to everyone for the love and support... It really does mean a lot to our family!! Santiago will look back at all this one day and see what a great life he had and what loving people stayed behind him thru it all!! <3>

Hello... My name is Tammie Bernal and my Husband’s name is Luis Bernal... We have been blessed with 3 wonderful children. We have Princess Isabella who is 3 Prince Bryce who is 2 and our wonderful miracle Santiago who is 4 months old. Our journey started about 14 months ago when we found out we were expecting our third child. Little did we know we were in for the ride of our life. My pregnancy was going really well until I hit about 20 weeks, I started pre-term labor witch to me was no surprise the same deal happened with the last 2 so I didn't think anything of it. When I was about 25 weeks I was told that my son was running on the smaller end of things but not to worry because everything was still looking good as well as development. So I was not too worried but when I went in for my next ultrasound it wasn't the good news I wanted to hear. I was about 27 weeks by this point and while she was doing my ultrasound she told me everything looked good, little did I know what was coming next. When I went back to talk to the doctor she told me that they found a small hole in my son’s heart and that I needed to be seen by PPA. I had no idea how to act, this has never happened to us before so I just took it with a grain of salt and went to my first PPA apt. when I was 29 weeks I was told by PPA that this hole was so small it would more than likely close by the time he was born but at that visit I also found out that I had a 1 vessel cord and that more than likely my son had down syndrome. I was in such sock this was all so new to us it was just one thing after the next my world was slowly closing in on me. So we went back for another check up and this was at 31 weeks. I was told that my baby could die at any moment because he was no longer growing and my fluid level was low (just what a mom should hear at this time) so now I was in a loss for words I just wanted it all to stop way to much way to fast.

So I went into the hospital at 35 weeks cause I knew something was not right I was leaking and in lots of pain. They checked me and said nothing was wrong and that my water had not broke, so we went home and had an OB apt. the following day, this apt. would be our last my fluid level was super low and I was sent to the hospital. This is where my world turned dark. While I was being induced a man came in from PPA to tell me my son had trisomy 18 and would only live for a few minutes. So to prepare myself, what I thought who the hell is this guy and who is he to tell me my son is is going to die. This is the first time I had ever heard the word trisomy I had no clue what this was it was so new, about 6 hours later I was rushed to C-section because my baby was doing very bad, man I was so scared I didn't know what to do or what to say all I could do was to leave it all in God’s hands!! My son was born April 21st 2009 when he was delivered all I wanted to do was hold him and kiss him I couldn't believe my son was about to be taken from me... they took my son away to take care of him and took me to the recovery room. When my husband came in to see me he looked like something was very wrong. I looked at him and said "what is it? Does he really have trisomy 18? Is he really going to leave us?" and all my husband could do was look at me and shake his head yes! "What I said Why us?" Why?" I had no control over my tears. I asked if they could please bring me my son I had to see him! When they brought him to me he looked so normal he didn't look like anything was wrong with him at all. All the nurse's could do was look at me and tell me they were sorry. They took my son away after a while and had me calm down. A few hours had past and I had not heard anything about my son weather he was still with us or not. So I went down to see him and I was told he was doing great never needed oxygen or anything. What a blessing I thought than I was told that they were having someone come look at him. A genealogist I was told she could give me a better idea on what was going on with my son.

I have to add he had the best group of nurses ever and one special one who he will know and love for the rest of his life (Brooke) you will always hold a very dear place in our hearts! You never let me think negative and I have to thank you so much for that. You really helped me thru the roughest days! You have become Santi’s second mom! (That’s who I would tell everyone she was while he was in the hospital)

When the genealogist got there she looked at my son and didn't really say much she told me that she was having a Chromosome test done to find out exactly what it was he had. So we waited for about 2 days and she came back and said Santiago had trisomy 13 ring Chromosome. And I thought to myself there's that bad word again. So I looked at her and said “so is my son going to die" she looked at me and said I can’t tell you that she said she had never ran across this type of trisomy 13 before and she couldn't tell us what was going to happen with him. She said he will have a MRI around 4 months and that should give us a better picture. My son stayed in the NICU for 15 days before we were able to bring him home.
We had Santiago home for 1 week before I took him to Banner Desert.
On May 16 2009 I entered hell. My son was throwing up breathing super fast and his skin was pulling into his ribs a lot. When they finally took us back they took X-rays of his chest as well as drew blood. X-rays showed that Santiago had 2 broken ribs (healed) as well as a little fluid around his lungs. The blood test came back that he had the flu as well(funny thing is the first thing I said the day they let us go from the NICU was "Now that he's leaving he better not get swine flu" little did I know =)) Then the shock of my life happened. The doctor came back in the room to say he was calling CPS because of the ribs. Ha I looked at him and said "are you kidding me?" "I have had my son for 1 week there’s no way this happened at home, they are healed." Needless to say I was treated very rudely after that and his breathing and throwing up was no longer looked at. Now the main focus was his HEALED ribs. What a joke I thought.
May 17, 2009(Doctor #1)
Santiago was put in PICU. CPS found the whole rib thing to be caused during birth (SUPRISE) and was dismissed but will still be on my record for 3 years. While in PICU he did really well and we were getting ready to go home.
May 18, 2009 (Doctor #2)
They moved us down to the Ped's floor and said we would be going home in 1 to 2 days; they just wanted to watch him.
Week 1
May 19, 2009 - May 24, 2009
It seemed the second Santi got to the ped's floor thing’s turned ugly. I was told he had CHF and because of that he was not taking his food well. He was then placed with an NG tube for his feedings. He was still throwing up with the NG feeds so they just cut back his feedings a little and tried different formula. This went on thru out the week.
Week2
May 25, 2009 - May 31, 2009 (Doctor #3)
This week we got yet again a different doctor. But this one I liked. She ordered a chest X-ray again, a swallow study and a stool test. (Finally someone who wants to know what’s going on too!) The chest X-ray came back clear, swallow study showed he had bad reflux and stool had white blood cells in it which they said was probably from the flu. So we started working with speech and GI to see if we could get to the bottom of his eating problem. We found neocate was the best formula for him. So he was now on that at 25ML an hour and was doing really well. This is when we started talking about him having to have a G-Tube. The G-Tube was talked about because of his bad reflux and because when we would put the feeding tube down his heart rate would droop and he would stop breathing. Needless to say this week is when a nurse came in to re-place his NG tube and put it in his lungs instead (which does happen at times). After this happened Santi started having problems breathing and just not looking right. I was told by the doctor that Santi would NOT be going home on any NG feedings. They did blood work again at the end of this week and found his white blood cells to still be high and his red blood cells to be lower than last time.
Week 3
June 1, 2009 - June 7, 2009(Doctor #4)
Doctor from HELL.... This doctor started Santi on boles feeds right away(which means started giving him his whole feedings all at once over a 15 min time period) so we went from 25ML an hour continues to 60ML boles. Needless to say Santi did not do well at all with this, he started throwing up all over again, and we now how to start all over! When I asked this DFH why he did this all at once he said because he just wanted to see what happened. Then he went on to tell me what I thought about putting my son in hospice care? What hospice that’s where people go who are not going to be around for long... RIGHT? I told him NO my son will not be going to hospice he is not terminal. That’s when I questioned what they thought my son had. Come to find out they had in Santi's record that he was Trisomy 18 ... GREAT I thought they are treating my son as if he is going to pass away soon... and sure enough that’s what was happening. Once I told them what he really was everything changed. So after all this I told this DFH that I wanted them to do a chest X-ray due to the fact my son never looked right after the NG tube went into his lung. When the chest X-ray came back it showed there was inflammation in his lower lung. They also did a urine test and that came back that he had a really bad UTI hence the not wanting to eat and the white blood cells in the stool.
Week 4
June 8, 2009 - June 14, 2009 (Doctor #5)
When this doctor cam in I was told that GI wanted him to have the G-tube because of his reflux and the throwing up. So I talked with his cardiologist and got everything ready to go we were set up for surgery on Friday the 12th of June. I got a call from the doctor on the 11th of June saying that we could not do the surgery due to his Iron being too high, and that they asked his cardiologist if they could do a blood transfusion so we can do the surgery they were no by my cardio Doctor . When I went in on the 13th of June I found out that my son's iron was not to high they just told me and the surgeon that because my cardio doc. did not feel there surgeon was right for my son (thank god). So I was told we were going to be transferred to St Joes on Sunday the 14th of June because that’s where my Cardio Doctor was.(Thank GOD get me out of this hell hole)
Week 5
June 15, 2009(Doctor #6)
So now we are on our 6th doctor. When this doctor came in the room he didn’t even look at my son, he looked at me and said I will have you home within the next 24 hours. He said someone would be in to teach me and my husband how to put down the NG tube (that I was told I would NOT be going home with) and someone would be in with all my discharge paper work. I couldn’t help but look at him a laugh. Really I said so he goes from dying to just being sick (thanks to me for correcting you guys) and then from not going to be sent home on a NG tube to being sent home on one and from being transferred to not. What the hell have you guys done for my son this whole time I told him.(Mommy was not happy).So they taught me how to put the tube down ONCE but never showed me how to cheek for placement and never even had my husband do it. What a joke this place was!!!
So we took our baby boy home finally and had him home for 3 days before having to take him back to the hospital(NOT desert banner that’s for sure) we took him to WONDERFUL St.Joseph's were my praying paid off. This hospital and their staff are GREAT they took us right away saw us right away did test right away and made his better in only 3 days. WOOOOOOO such a blessing when we got there we found out he was in complete CHF and his Med. amounts form WHERE else?... DESERT were wrong. And the hole in his heart was large. So once the meds were corrected and he was doing well we were sent home made an Apt. for his open heart surgery and didn’t have to been until that date. We got to keep our son home for 20 whole days before his surgery on July 16th... Those 20 days were the best that was longest we had our son home since birth. He had his surgery DID GREAT and was only there 9 days and has been home doing GREAT ever since! St. Joes gave us hope. They took him off the NG tube and him feeding from a bottle all by the second day we were there and he has been eating on his own since.
By going to St.Joseph's and looking back at the way we were taken care of at Banner was only overuse that he was being treated as a Syndrome baby.
I thank everyone who took care of him at Chandler and at St.Joseph’s, and to all the moms who have welcomed us into their HEART <3>
Sorry this was so long but I needed to update from Birth to now for those who didn’t know the WHOLE story!! He had his 4 month apt with the genealogist and she can’t believe what she sees... He is doing everything a 4 mouth old should be doing he’s rolling over and cooing. She also said there is no need for a MRI at this point. What a relief I said I have been such a mess. We know that we still have hills ahead of us, it’s a given he has deletion and duplications so he won’t be perfect but he is still here with me today and that's all I have asked for. I have started this blog because I feel like god has allowed me to have my son and overcome all odds for a reason I feel like I should share his story because I want to be able to show other families who are told by these doctors that their babies are not going to make to think twice miracles do happen. My son is proof. He is almost full trisomy 13 and with the grace of god a weird little twist happened. I will continue to update everyone on how he is doing. God bless all and if there are any families out there who are going thru a problem or are dealing with something where your questions have no answers, I am here for any of you I know how it feels to have questions and no answers to them. Thank you all for taking the time to read Santiago's story. Will update soon! <3

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Monday, December 14, 2009

SANTI to STRONG man!!

Wednesday, October 21, 2009

God Is Good!

Saturday, October 3, 2009

Bump's in the road STINK!!

Tuesday, September 15, 2009

<3 He Did It Like A Pro <3

Tummy Time

Friday, September 11, 2009

Still going strong!!

Sunday, September 6, 2009

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