Tuesday, November 11, 2008

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.


Lady Dorothy said...

What adorable pictures!

(And I, too, think it's great that you're writing it all down.)

Bonnie said...

I know that I already told you, but I'm leaving a comment to make it official! LOL

I think all that you're sharing about this time in your life is wonderful. It also offers me a glimse of what your life included before I got here. You remember so many of the specific details, and that speaks volumes!