Life Lately

Dom got a new tube!! His G feeds were not working point blank. We spent 2 weeks at DCMC in September. A day after his endoscopy Dom spiked a 104+ fever and was not looking good. Not suprisingly he was run a battery of tests xrays, CT, blood work, and swabs. There was nothing eye popping other than the sudden fever and stomach distention. For the 2 weeks we altered ratesm consistencies, dosages, formulas, meds...nothing seemed to help. The vomiting, wretching and distention remaind. After being home a few weeks we went to see GI again, it was quickly decided his stomach was simply NOT tollerating feeds. So that week we checked into the OR and after 3.5hrs I had a GJ kiddo. So far (not to jinx) it is the best choice we have made thus far. The vomiting and wretching are few and far in between. He is taking stuff in orally from time to time. Downside is he is on feeds 18hrs a day BUT hoping we will scale down to 12hrs if he tollerates.

In the beginning of October Dom began an eval for ELE (Early Learning Environment) at Aid's school. Today we did the ARD (Admit, Review, Discharge) meeting finallizing his goals and such. There are different programs they offer from 5 days a wk for 4hrs to 2 days a week 4 hrs, all depending on the childs needs. So I went in expecting they would simply point out his speech delayment because in my head I was the only one who saw all the delayments and maybe it was simply because I thought to much about his diagnosis. Boy did I walk out of there heartbroken. Turns out I was NOT the only one who saw these delaymetns and No it was not just in my head. Dom scored a 59 of 100 for speech categorizing him "severly delayed". He scored below the 3% percentile for cognitive and below the 5% percentile for adaptive behavior. He keeps to himself no interaction with peers, my baby sat by himslef :( His over all fine motor skill was about that of a 16-24 month old....MY DOM IS 41 MONTHS! I wanted to cry. Given a pair of scissors he didnt have the knowledge to open, when shown how to open, he lacked strength. Schools overall recommendation was to attend the max 20 hrs a week, 5 days a week. He is OFFICIALLY a student as of tomorrow!

GEEEEZZZZZ LOUISE!!!

Aid is doing wonderful in class. I got his report card the other day all mid 90's and 1 mid 80. The planning has begun for his 9th birthday!! Yes I know ME? a 9yr old?? Dont flatter me :) Last year I went all out with a surprise party this year he will probably be involved in the planning. Aid was pretty bummed a few months ago his BFFFFFF moved out of our apartmemt complex. I've tried my best to have Bryce over or send Aid that way. Its funny as I write about Aid I find myself blanking on what to write next he is well PERFECT, health, school everything.


Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.
-Arnold Schwarzenegger

Dom PART II

At 1727 on May 21st, 2008 Domonic Miguel entered the world weighing in at 1lb 8oz and 12.5in long he suffered from sever IUGR. I was allowed a quick glimpse and before I knew it he was whisked away. I had tons of family and friends waiting in the hallway in hopes they could see him, and they did. The nurses aware that Dom was a little brother stopped in the hall breifly approached Aid and asked, "are you big brother" without hesitation he says YES. I hear it was the most bittersweet moment as the nurses introduced the boys to one another and Aid could not help but cry full of heartache scared to death at what the fate was to be of his oh so tiny brother. My mom being the wonderful woman she is held him close reassuring him it would all be okay. Dom was immediatly intubated and had quiet the rough journey in the NICU during his 128 day stay there he endured the following:
-Intubated and vented through an oscillator for 6 weeks
-CPAP for 8 weeks
-Rotation of CPAP and Nasal Cannula for the remainder of his stay
-PDA Ligation surgery @ JUST 3 days old (he was also baptised 1hr prior)
-PKU Diagnosis which resulted in stopping breastmilk & being put on a special formula
-Grade III IVH in the lower right ventricle
-5 or so blood transfusions
-Gtube placement
-Ultrasounds, xrays, CT scans, MRIs
-Tons of daily testing
-Failure to thrive
Since Release:
-25 hospital visits half of which resulted in stays
-Nissen Fundoplication Surgery
-8 surgeries for abscesses resulting from MRSA
-To many to count MRIs, CT scans, Xrays
-Diagnosed w/ Superior Oblique Palsy
-RSV and Pneumonias
You get the point.

He finally came home September 26th, 2008. Aid came home from school no more than 10 minutes after our arrival at home. It could not have been more picture perfect. Aid finally got to meet the brother he had longed for , for months and had only seen in pictures aside from the bittersweet hello after birth. The family dynamic we carry now is unlike anything I ever planned for. It is I alone raising Aid and Dom, it is by no means easy but to know that I have 2 living beautiful boys is enough to give me life.

A little glimpse into Domino..... PART I

When I thought I had seen and felt all that was wonderful in life my little man named Domonic came into my life. Early December 2007 I went to a hospital to be checked out in the ER. I was having terrible pain which I pressumed to be gallstones. After a few hours and some testing the nurse came in and congratulated me on my pregnancy and stated my ultrasound looked Great...."ok" I said "only I never had an ultrasound done, not at this particular time anyway." She apologized realizing she was going over another person's test results with me. I was overcome with a huge sigh of relief, in no way was I prepare to have a child. Things in my life were in place, going right,I was content with the life Aid and I had ---- just mother and son. It was a matter of minutes that felt like eternity before she came back because althoguh I laughed off the incident, I started to question "could I really be pregnant?" Indeed I was PREGNANT! My nerves were going haywire. My sister was squeeling with joy, while I dreaded the news. The gallstones painful yes but no life changing, this, this was life changing in a way I had yet to realize. I was sent over for an ultrasound. The tech had a somber attitude yet said she couldn't solidify what she saw the radiologists had to. Next the ER doc came in she had my discharge paperwork and told me she wanted me back in a few weeks to repeat testing because either I was to early to see a fetus or I was carrying an ectopic pregnancy. It was about 11 days later I returned to that samw ER, tests all the same. They deemed it was ectopic and admitted me. I was alone in my room, crying and didnt understand why. After all only 11 days prior I was upset at the fact that I was pregnant, now I was 10x worse over loosing the what I had originally not wanted. By morning I was visited by an on call OB. He gave me my options "Either a shot of Methotrexate to terminate the fetus or surgery to remove the fallopian tube leaving me with 50% chance of ever etting pregnant again." I got the shot. It was painful but I think the tears were mroe from knowing the outcome of the shot. My mom drove me home that night, I remember the eerie silence in the car, the rain on the windows, gazing into the skies, asking why me. I had never felt so lonely. My only requirment with the shot was to return for bloodwork to ensure my hormone levels dropped, so I came back 3 days later during the afternoon (not 2 days like I was supposed to). By 8am the next morning I had the OB on the phone urging me to get to his office about 30min away his words were, "Your hormone levels should have dropped they have mroe than trippled something is not right please get here asap!" Sensing the urgency I raced over. Dr. H brought me straight back to perform an ultrasound. Within seconds of him scanning my jaw dropped there was a fetus and it WAS in my uterus. (The ER told me they saw a "mass" in my tube and Dr.H never confirmed it just went by their report) My excitement was soon taken away as he said despite their mistake he did not expect the fetus to survive such a powerful shot, after all the shot is used to kill cancer. So I was sent home told that I should miscarry very soon and to return in a few weeks to make sure everything went as he expected. Christmas came and went it was Aid's 5th birthday the 1st since my grandmothers passing (she passed the day after Aid's 4th bday) and oh yeah I was loosing my baby. New Years eve/day was the same thing. My whole family went out to celebrate as we did acustomly, I sat in my lonely apartment just Aid and I. He slept, I cried. At the drop of the ball I kissed him and simply fell asleep having no cause for celebration. The holidays didn't seem like much to celebrate not at the time anyway.

January 2nd came and I was back in Dr.H's office. I went in back and he asked nonchalantly how much did you pass and when. My response, " I havn't passed a thing." Confused he began performing the ultrasound. In the room Dr. H, his nurse, my sister and I waited, but boy did it NOT take long at all for us all to drop our jaws....yet again. Not only was the fetus STILL THERE, but there was TWO!! The nurse looked at me teary eyed "this is a miracle!" Stunned I sat silent for a while, my sis over come with joy, and the Dr. dumbfounded at what was occurring against all his presumptoins not only was I NOT having an ectopic pregnancy, not only was I NOT going to loose a baby, I WAS having TWINS! After the initial shock wore off I had to ask what their chances were. He said the shot was an "all or nothing shot" it either does it's job and terminates or has no effect, and it seemed to take the 2nd route. Dr. H asked me to stay with his practice since he knew about my pregnancy thus far and wanted to closely monitor me just in case. I went along after all he was a doctor and knew what was best, right?! Dr. H continued to be my OB until I reached 22wks gestation. Getting 3D ultrasounds for free and an ultrasound/videotape every time i went to see Dr. H was very generous yet VERY abnormal as well. I knew not much having only had one child before with whom I had very frequent ultrasounds yet he was diagnosed early on with health problems, Dom on all accounts from Dr. H was "normal".

Without notice I simply called Dr. L the OB I had with Aid and he took me on as his patient. According to him I measured correctly for an almost 23 wk pregnancy and heart beat sounded good so he would send for all my pregnancy info reports, scans, tests, ultrasounds the whole works from Dr. H and then go from there. Four wks later I am 26wks 4days along I go i the back and Dr. L comes to inform me that Dr. H sent over some stuff not much and was not returning calls regarding any ultrasounds he had so givent hat he needed to see for himself that baby looked ok. I nwithout hesitation lay down and look at the monitor with a huge smile on my face i starred aimlessly at my baby. Dr. L had anything but a smile on his face. "So you are 24 wks not 26.4wks, you conceived mid December according to his measurments and growth." Umm nope, not at all, no possible way! At that point I was already 4 wks and KNEW I was poregnant confirmed from the ER. (I had not yet informed him of the Methotrexate shot)I gave the whole schpeil from being aware of this pregnancy to the moment I sat in his office. He quickly stepped out to return, "You need to go to the Perinatologists office to see Dr. E, do you remember him he's the specialists who watched you with Aidan?" Not wanting me to stress till he knew exactly what was going on he ushered me out the door I needed to go ASAP.

No less than 10minutes I am now at Dr.E's office and rushed to the back bypassing a waiting room full of pregnant women, this cannot be good! He performs his high-tech ultrasound runs tests and comes to same conclusion as Dr. L. So once again I tell him about the shot loosing Baby A etc. Just as Dr. L had done he quickly gets ont he phone and rushes to make a call to Dr. L. This is all happening within a matter of minutes I am now told I need to check into St. Davids L&D to receive 2 doses of Coritcosteroid shots to improve Dom's lungs to even give him a chance at survival. The next evening I was released.....on one condition I had to go to Dr.E's office daily to be monitored for 2-3hrs along with ultrasounds daily. Before I was released though Dr. L came to see me. Heartbroken I asked how long he gave me. Bluntly which I appreciated he said, "2 maybe 3 weeks at best but to be honest i do not even think you will last that long." Low and behold 10 days later I found myself being rushed into an emergency c-section. The night before his birth I had a sharp pain and no longer felt movements. I thought I lost him. I was admitted overnight for observation I awoke to Dr. E telling me Dom was severly stressed and kept having Bradys throughout the night Dom was presummed to weight appprox. 1lb 5oz and would have to be born within a few hours whether we were ready or not for he had a better chance in an incubator than in utero.

Aidan's Story

May 1st, 2002 was a big day it was to be the 1st day of my new job I was getting to work with my best friend it was supposed to be soo much fun. However that didn't happen I called in my first day of work because I got the shock of a life time when I took a pregnancy test and it came back positive. I was scared, confused, unsure about everything. To top it all off I was ONLY 16 years old. I went and sought medical attention to assure I was in fact pregnant. I was terrified of telling my mom. what would she think, what would she say? Due to my fear I kept the pregnancy a secret for 3months. Finally the pressure of the situation brought me to a breaking point I finally told her I was pregnant and almost 13 weeks along. Needless to say she about had a heart attack and was in disbelief. I was the honor-roll and straight A teenager not the pregnant teenager in her eyes.

Due to my age and our financial state my mother refused to let me have this child. She scheduled me an appointment for the next day. When I arrived it was the abortion clinic. I was beyond words with emotion. I was taken in back did the ultrasound to determine how far I was to ensure they could perform the procedure I was 13wks 1day. Next came the counseling part. She asked me a series of questions and within minutes said "you do not want to do this do you?" My immediate answer was "NO." I told her my mother had brought me but I was terrified to tell her no, so since it was the last day for me to get it done anyway she informed my mom that I had missed the deadline to perform the abortion by a day. Silence filled the next few days until my grandma spoke with my mom. I think because of her my mom would forever change her view on the situation at hand. *Thank you grams*

14 weeks I had an appointment I set up through a agency that does free pregnancy testing, childcare/ birthing classes, and does a one free sonogram per pregnancy. So it was to have my 1st REAL sonogram. The nurse preformed it I remember hearing his heartbeat, all the fast and suttle movements I was a mom. After she was done she asked if I had an OB already, I told her no. So she said, "well I would really like you to meet the OB he's a great Dr. and will take excellent care of you. Immediately I thought something was wrong she kept insisting there was not she just wanted me to have the best of care.

15 weeks I have my 1st official doctors appointment with Dr. Mikael Love. Yes people Dr.Love delivered my babies :) Well he did the quick usual check then wanted to do an ultrasound. I knew something was just not right because I had been reading and knew the usual ultrasound isn't until 20weeks or so. After a 15-20minute ultrasound he broke the news I was not expecting to hear...."Your son has a condition called Gastroschisis." My initial thought was OMG will my child live, what is this, etc....then came wait I am having a BOY!!!?

Gastroschisis is a type of hernia. Hernia means "rupture.” Babies with this condition have a hole in the abdominal wall, usually on the right side of the umbilical cord. The child's intestines usually stick out (protrude) through the hole.

From the point of diagnosis on I was seeing Dr.Love and the Perinatologist twice a month. I was not ready to deal with the condition but was enjoying every moment of pregnancy, all the appointments with the Peri were full of ultrasounds so I has tons of pics.

On the morning of December 24th, 2002 I woke up with a VERY mild cramping feeling. My mom said as a precaution pack my bags. As the hours progressed so did the intensity of the "cramps". By 2pm we made a trip to L&D sure enough I was in early labor. However being at 34weeks my Dr. did not want me to deliver just yet. At this point I had no clue what a preemie even was. I was given medication to try to stop labor and released. I went on my typical Christmas Eve schedule last minute shopping, cooking at Grandma's and opening presents at midnight. Through it all it was obvious the labor had no intention of stopping. By 2am I was admitted in to the hospital at 4cm. Dr.Love wanted to perform a C-section to prevent possible rupture of Aidan's intestines. I was petrified so we decided to at least try Vaginal birth.

7:13am I gave birth to a beautiful baby Boy Aidan Lee weighing 5lbs 4oz measuring 18 inches. The excitement was short lived because the chaos in the room that immediately followed his birth was overwhelming. There was a whole team that surrounded Aidan. They got his measurements, let me take a pic next to him and withing the blink of an eye he was whisked away to the NICU.

12:30pm I awoke to the surgeon Dr. Josephs coming in the room to tell me he was about to operate on Aidan. He explained detail by detail how the operation would go. I sat nervously in my room waiting to hear anything possible on his condition. That evening the Neonatologists gave word I could finally come to see him it was almost 11pm by that time. I walked into the scariest of places and found myself so lost, so unaware of the severity of the issues he faced.

I was unable to touch him the nurses explained because of fear eh would go into shock he was that heavily sedated. He was on the CPAP machine, apnea monitor, NG tube, and more, but had no temperature regulating issues. I first held him at almost 2weeks old. That was also when we started actually trying to feed him. He was monitored very closely. I was told he could not come home until he was able to 1st eat enough food to show he did not need a permanent feeding tube and 2nd to have a bowel movement to show that his bowels were working correctly and did not need any surgery.

That time came after a long awaited 7weeks. I had never been so happy to see a dime size little ball of poop in my life!

Aidan I was told would have many delays, setbacks, etc due to his early arrival and condition. I am proud to say he accomplished every milestone early. Aidan is in perfect health besides having asthma. I am so proud of the journey Aidan faced and beat. He is my pride and joy and a true blessing in my life.

My mom is a wonderful grandmother, not to my surprise her and Aidan are closer due to the troubles he faced so early on in his life. She was opposed to the even thought of me having him yet turned into one of my biggest sources of support.

Motherhood Times

As I watched my two boys play I am amazed at how grown they have come to be. The journeys that led them to where they now stand. The times I was so unsure would ever occur that have come to be my everyday joy. Aidan has been working so hard on his karate practicing everyday not noticing in the background that Domonic has been eying his every move. Yesterday out of no-where as I sit watching t.v. I hear he-ya sound. I look to my left and there is Dom kicking his little leg a mere 1/2 foot of the ground practicing his karate kicks. I could not get a hold of myself or even contain my excitement. From just watching Aidan he was learning. As I tested his ability to mock things I found myself more astonished than what I had originally expected. I had Aidan do his push-ups and within seconds there lie Dom side-by-side with him rocking on his tummy doing his version of the push-ups more like a see-saw rock. Aidan then got his punching bag held it up and told his brother "Dom pow-pow" pointing to the bag there right away goes Dom hitting the bag. He then wanted to hold the bag so Aidan could hit. He seemed to like holding it more than the hitting. I was the most proud mother at that moment. We weren't sure if he would even walk let alone copy his brother in karate. Here I sat these two miracles whom at one point had undetermined futures living their lives normally two brothers, best friends. Maybe we are not the most normal of families but we are just a happy and grateful for the blessings we have. I wouldn't change motherhood as I have it for a second.