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
Tuesday, November 1, 2011
Monday, October 10, 2011
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.
-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.
Sunday, March 27, 2011
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.
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.
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