My "little Dragons"!

On Thursday Little Paul and Jordan moved UP a belt in there Karate class "Little Dragons"!!!

They were SO proud of themselves (so were we), they/we should be, they do the best job there! They listen so well, they participate, they behave and are so serious about it. Its so funny watching and listening to them in class; they are two funny kids!

GOOD job Jordan and Paul,

we are so proud of you and your accomplishment!

What we did...

This is the DOOR to the NICU from the waiting room (this was my "World")

Phillips birthday on November 11Th...

Paul took the day off from work and we headed down to Santa Barbra! We went to the Cottage Hospital where Phillip was born and where we spent the first few weeks of his life. We had a FUN time walking and reminiscing! We had lunch in the cafeteria (like we did MANY times in the past), we hung out in the waiting room connected to the NI CU, we talked about "those" days, and shared memories with Little Paul. The best part would have to be seeing his little hand print on the wall (when Phillip was a few months old we were invited back to the hospital to do the hand print and have little reunion with some nurses and Doctors), so this was very special to me, to see his HAND. We walked over to see the little place we stood at while Phillip was in the hospital, we walked over to the Doctors offices, and we let balloons go for him!

This is "Paul's Window", he used to look out of this at the "outside world" many many hours in the NICU waiting room! (He wanted this picture taken:)


Here is one of the cottages that we stood in, we were only allowed to stay a three day maximum, then we would have to leave for a night and try and re-check in if it was available (it gave other families a chance to). We actually only had to leave a couple of times, that's when we stayed at a hotel or came home for a night (which was hard). We only payed $25 a night here, and of course a hotel was a lot more down in SB, but God always provided for us! This was our little home; It was like a studio on the inside, but NO cooking area:( but my dad brought us a mini fridge, and Paul's cousins brought us a microwave (so we could warm up left-overs, little Paul's milk, and POPCORN:) I remember sweeping the floors, doing laundry, and moping!! That's SO ME:)

The day was just perfect....

Phillips journey part 2

For part one click here

Sorry for all the spaces, I dont know WHY its like this?

Now after I went in to see him, I saw all the stuff he was hooked up too, and I wanted to hold him, but I was scared too. They told me I would not be able to hold him until the next day because they had a pic line through his belly button (so they did not have to keep picking him for the blood work that they needed and also for the surgery) and it could get tugged on and that would be real bad. He was just to cute, he was so small, but he was alert, he looked at me and just starred at me and all I could do was cry....

All the nurses were so kind to me in there, they would bring over a box of tissue and rub my back:) It was like I had all these "new" friends. That night I had to leave him there, that was so hard, I felt so empty:(

Then next day they informed me that he would be having his surgery to correct the blocked intestine, and after I would be able to see him AND hold him for the first time!!! The surgery went really fast and I was there at the NICU door waiting on them so I could hold him, and I did that evening! I cried a lot, just looking at his little face all taped up with tubes, I was scared!

After a couple of days I was released out of the hospital and I was so sad, I wanted to still be down the hall from him, but I knew I could not stay there forever, I had to go and stay at my little "cottage". Over the next three weeks it was a real adventure for my little family, we would (Paul and I ) take turns going in to see Phillip (one of us would stay out with L.Paul since he was considered to young to go in). It was so hard not to stay in there all day and night, but I wanted to be with Little Paul too:( He would cry when I went in, and I would cry when I left Phillip:( I would have to go and pump (my milk) every couple of hours in a little room they had for moms in the NICU, this was a little hard to schedule, but I did it. I would set my alarm at night so that I could pump then also. Big Paul would deliver it over to the hospital every morning when we got up! It was real nice when family and friends would come visit us, this was a nice time for Paul and I to go in together and just talk and be with Phillip together.

Phillips surgery was a success to UN-block the intestine, but there was still a problem (with out getting to detailed) the colon was all stretched out due to an large amount of amniotic fluid not properly flushed through his system. AND he had yet to go #2, so this was not good! He was not being fed yet, he was on a IV around the clock but no milk yet. I had created quite the store for him with all my milk! They were worried what was wrong with him, and why he would not go, but one night he went:) WE were so THRILLED!! Then they started feeding him my milk little by little, and he did well (I even was able to nurse him after one of his bottle feedings, BUT he just slept while latched on). They did confirm that he had a few large holes in his heart that would need correcting later on in his life, but nothing to serious to correct now (THANK GOD). The hole in his heart did effect his eating, he would fall to sleep all most instantly after his bottle, and nursing was way so hard with him having the heart condition, they told me that I could try sometimes, but they did not want me to put to much strain on him to eat (he would sweat a lot and literally pass out). So after he got down enough feedings each day they were considering sending him home, BUT on some conditions, I would have to insert a rather long/large tube in him everyday to be sure he let out gas and #2. I did not care, I was ready to go home with him NO MATTER WHAT I had to do! Yeah we were so happy! Oh yea and when we were going home, they finally came in with blood results that he had Down Syndrome:) LOL

The trip home (two hours) was fun! I loved to see him in the back seat in his car seat, he was so small! Little Paul held Phillips hand almost the whole way home!

Life at home was so fun with the boys together! Little Paul loved his brother, he would "read" to him, bring him a toy:) I loved it.. Every day I had my routine with Phillip, I had to give him 3 medications for his heart, and I would have to do the tube thing. He was doing great, but still had the problem with the heart. The colon was a mystery, since everyday it would fill up with so much air, and he never would pass it unless I helped him. We went to all of his check-ups and still knew he would need to get his heart fixed and deal with the colon. At about 4 months they (Doctors) decided they could not wait anymore to do the open heart surgery to repair his holes, he was not gaining weight anymore. He was almost 5 months and he was only barely 9 pounds, and his feedings were taking longer and longer with him passing out. So they scheduled his heart surgery for exactly one day after he turned 5 months, on April 12 (my moms b.day).

We (my mom, little Paul, big Paul and I) went down to Cedars Sinai Hospital in Beverly Hills to meet up with the surgeons and walk through everything that they would do. He had all the tests, blood was the worst though:(
His surgery took WAY to long, really it did, they could not find his veins due to him being so small. It was over 6 hours long. After that he was in recovery in the PI CU, it was really hard to see him like this.. He started to wake up after only a few hours (and this was great they told me), we talked to him, and he started to cry (but he had a breathing tube in, so only his eyes cried), this is when I lost it... I had to leave because they were going to take some of the tubing out and we were not watching. I got to go back in and just be with him, we could not hold him yet AGAIN:( Later the next day he started to wake up a lot, so they decided he could start eating. I took him in my arms and held him for a long time, but I noticed something was really weird, while he was eating this liquid stuff started draining out of his chest tube? I asked the nurse what it was, she just said it was normal (okay I thought, it was mixed with blood at times, and they would drain it, and then it would appear AGAIN right before it mixed with the blood, so they kept on telling me it was just the normal blood drain?) NO I thought, so the next day when the Doctors came in to do there rounds, they told me that they were happy with his recovery and that they were planning on moving him to a regular room (I was happy for that, since we would be together again with Little Paul in the room with Phillip too, Little Paul was not allowed in the PICU). I thought Id better mention to the Doctor what I had been seeing when I was feeding him the last night and that day, I explained to him, and he was concerned! He ordered an x-ray to confirm what he thought it might be, AND YES it was what he had feared.. He explained to me that it was a sort of thing that happened during the surgery, that his digestive ducts where the fats are digested were pierced! Now they stopped his feedings all together (poor kid) and he stayed an extra few days in the PICU. Finally over the weekend they ordered a special formula, so he was eating again after a few days, and he was happy and the ducts were all healed up (PRAISE GOD;) After a ten day stay, we were on our way home!!!

YES!! He was recovering wonderfully!! He gained so much weight, so fast, and was healthy! BUT the colon started to act up again and worse, I could not release air fast enough, so the Doctor ordered for a surgery in the next couple of weeks. Well this did not go as planned, Phillip got fluid in his lungs from the heart surgery (they say its from the anesthesia), so he was to sick from the heart surgery. It was cancelled and to be re-scheduled for a later time when he was better. After a month or so his colon started to cooperate again with the tubes and laxatives. We put off surgery for later down the road!

Phillip was doing so good, we started him on physical therapy, speech therapy, early interventionist, and all of this was done in my house! We had so much fun with him and his therapists, they become my friends, I loved them.

Phillip was a typical kid:) doing all the "kid stuff", we just had to take extra time for him and "help" him along! I loved doing everything for him, it was my job, and little Paul was my helper!

Our days were getting worse with his colon, everyday it got worse and worse. He was not functioning normal at all. He was now almost two years old and eating solid food and it was very hard for me to get him to GO, laxative, natural stuff, and all the above was not working! Doctor apt. after Doctor apt. and the same outcome, SURGERY! So we decided it was time to go in and have tests done on his colon, and see what we needed to do................

TO be continued.

Story of his journey here!

I thought since this is his birthday that I would share about his major events in his life, not only for all my readers to know of him, but also for me to write out our journey (so I have them down on paper). This is not going to be a one post thing:) It will be more like 3 or 4 depending how much detail and how much time I have to write at the time!

Well it all starts out sometime in January of 2004 when we decided that little Paul needed a sibling:) He was 16 months old! I found out I was pregnant sometime in March (I cant remember exactly when), it started out like a regular pregnancy, feeling tired then really nauseous. At around five months or so I decided to go to the Doctor for my first check up, this time they scheduled the routine ultra sound apt. since it was already about that time. I remember thinking in just a few days I would know who we were having, a boy OR girl!! I had been feeling a little better with the nausea, but another thing started happening that I could not explain at the time, it was a sort of suffocating feeling, or shortness of breath that I had not had with my other pregnancy. I just wrote if off as normal stuff (but it was getting worse). Anyways we went in for the ultra sound, it was a great time for Little Paul (so I thought), well he cried almost the whole time because he thought they were hurting me:) POOR KID! The appointment went sort of long, but then I did not think anything of it. I was happy to find out that we were having another little boy, well not everyone was to thrilled (Paul's parents wanted him to be a girl, but we were thrilled to have a brother for Lil.Paul).
After that ultra sound I did not attend my next OB appointment that was within the next couple weeks, I felt fine (other then the breathing) and I was not into going in. Well about FOUR weeks AFTER my ultra sound my OB office called me to say that I NEEDED to come to see my OB and talk about the ultra sound. To me I thought they were just being lame because I missed my apt. and thought they were just using the ultra sound as an excuse (since it had been like a month later). The lady sounded serious enough for me to go in, she said they just got some readings that were most likely a mistake IE. the baby was not cooperating, so I most likely will have to have another ultra sound. So within the next couple of days, I went in... Now by this time I was nervous, a little tense, so my blood pressure was a little high and the nurse asked WHY, if I was under any extra stress these days?? Huh, duh! Well needless to say no one wrote anything in my chart about the results being questionable. So here I am explaining why I'm there and what I need to do. Finally another lady came in and confirmed that she had an order for me to go in to a specialist for another scan. Now this time I remember feeling sort of sick to my stomach, wondering what on earth was going on, could it be a mistake? So they told me that possibly there was some readings that showed extra amounts of fluid by his head area (that could explain the breathing for me), and that they could not get a good measurement of his head, and that was it, nothing to worry about.
My next journey was to the office of the specialist, I remember seeing a lot of pregnant moms in there with kids that were handicapped and or sick. I was thinking that this would NOT be me, this was my last appointment here just to clear things up. The lady came in and started talking to me about options with this pregnancy, I was confused, she started doing the scan and started telling me that he had a lot of signs for Down Syndrome, he had a birth defect in his stomach, he would need surgery short after birth, I could not deliver at our local hospital, I would have to have repeat scans to keep checking his progress, they needed to check his heart with another specialist, he had fluid around his brain, I had an abnormally amounts of amniotic fluid, red flags are all over this report! I was SHOCKED, I remember looking at Paul and Little Paul and thinking, NO this is crazy, NO WAY!! I was so scared, I acted like it was fine (you all know me:) I held it together while talking with the genetics counselor, then the surgery coordinator's, the delivery coordinator's, and the heart specialist (which he could not find anything wrong with his heart, but told me it could show up later and it could be serious). I scheduled all the appropriate appointments and walked to the car in one piece:) Then on the 30 minute drive home was silent, not talking at all, until I lost it!! I can not believe it, is all that I could keep saying! I remember coming home and calling my family, then Serena and telling them to just pray and NOT talk negative to me, I did not need to hear fear or negativity.
The next few months were PACKED with appointments with Doctors all over the place. We went down to Santa Barbra to meet my new OB, Phillips surgeon (and talk about the procedure that would be done to fix his blocked intestine) Cardiologist (just in case he had a heart condition), and the NICU team at the Hospital.. We always traveled together, never leaving little Paul home (I could not do it, NEVER). My new OB scheduled a induction two weeks before my due date, and I was fine with that;P
We prepared for Phillip like a normal family would, it was fun preparing little Paul for his new brother, we were so excited despite of all the scary things that were ahead...........
Finally it was the day, my mom came down with us so she could be there and take care of Little Paul too. We had a little "Cottage" prepared for our stay through the hospital, and that would be "home" for the next 3 weeks! I was checked in the hospital, induced and proceeded with my delivery almost exactly like little Paul came, FAST!! And I remember them scared that it was happening so fast, I did warn them:) The nurse got on the phone and called down the NICU team and my OB, but he did not make it (his office was across the street), so another Doctor came in off the floor (he was doing rounds). I remember the nurse bringing me a consent form to sign asking me to allow a team of students in while I delivered (and I did allow it, I was dying here, I could care less)! Phillip was born only after maybe three pushes, and I was calm this time around (that's what big Paul says) Phillip came out I looked at him and saw his little puffy face (purple I might add), and his little flat nose and slanted eyes (and immediately I knew). I was so happy to have him here, all I did is cry and ask if he was okay and if he was going to make it. I was so scared, I only got to see him for a few seconds, and they took him:( They said that I could come see him later... This was at about nine in the evening when he was born and I did not get to go SEE him until after midnight, and I could NOT even hold him.. Just look at him:( Little Paul asked questions, but he could NOT see him.

Phillip Jeremiah
5pounds 2 ounces and NO length (they did not measure him)

To be continued.................. Hopefully with added pictures:)