Its Been A While, but...

So, its been a while since I have blogged, but with the holidays here it was harder than I thought. You could definitely feel the change this year a sense of sadness. Since last time I wrote I had Xmas eve dinner with friends so they wouldn't be alone. I got a job, but the car is about to break down so I can't keep driving that far to work, because it's the only running car we have right now. I have since spoken to DHREAMS Research & Boston General to arrange for my husbands & my own blood after the new year.

Our 1 yr anniversary came and went as we were just to sad with it being so close to not only our anniversary, but also Eli's b-day, Thanksgiving, X-mas, New Year & then my b-day... So, anyways 2012 has to be better than this year was! I still have to finish up posting Silas' autopsy report & finish playing around with my blog as we are still under construction.

I do want to ask you to find it in your heart & visit my Give Forward Page and help me raise money and awareness to help the families of the babies that have to battle this horrible fight. Help me in honor of my son Silas raise as much money as possible for my b-day (the day Silas was conceived) Feb. 1, 2012. That is the last day of the fundraiser.. Share, Tweet, blog, & Re-post please!!

Jeremiah 30:17 (New International Version)

17 But I will restore you to health 

and heal your wounds,' 

declares the LORD, 

'because you are called an outcast, 

Zion for whom no one cares.'

Please Note

Hey everyone, I'm just here to let everyone know that I'm re-organizing this blog to be neater & easier to navigate. I just want to make things easier on both my mind & my eyes with this blog. I started working recently so time is short now a days because by the time I get home I'm exhausted after having so much down time. So please bare with me as this site will be under construction for a bit. Thank you for your patience & please feel free to join, share, follow, tweet or comment. May Jehovah bless each & everyone of you..

HeatherJean

Today is International Children's Memorial Day

Today is International Children's Memorial Day. I lit my candle at 7 pm for all the our son Silas & for all the other babies lost to CDH! Did you? Tonight at 7:00 pm in your time zone, please light a candle for all the cherubs lost to Congenital Diaphragmatic Hernia, as well as all children lost to all causes. If you haven't seen it yet, take a minute to visit CHERUBS web site, where we have listed the names of over 1000 children lost to CDH. This is what we fight against, why we work so hard. To stop this list from growing.  See here.  CHERUBS

External Examination

The autopsy is performed 9/24/2011. The body is identified by ankle bracelet on both feet as the baby boy of Heather Jean Forsyth. The consent, signed by both parents, is for a complete autopsy.

The body is that of a dysmorphic male infant weighing 1830 grams. The head circumference is 29.2 cm, the chest circumference is 25.7 cm, the abdominal circumference is 24.5 cm, the crown-rump length is 30 cm, the crown heel length is 45 cm, and the foot length is 7.4 cm. These weights and measures are consistent with a 35 wk gestation infant.

The head is covered by black, slightly curly hair measuring 2.1 cm in length. The head is symmetric. The fontanelles are slightly bulging. The anterior fontanel measures 2.3 x 1.2 cm and the posterior fontanel measures 2.1 x 1.0 cm. The sutures are mobile. the face is dysmorphic with prominent forehead sloping. The lips are dry red-brown. The eyes are prominent with an intercanthal distance ratio of 1.9 to 8.1 cm. There is a flat nasal bridge. The nares are patient. The chin is recessed. The scleras are clear. The corneas are clear. The irises are blue. The nose is bilateral patent nares. The mouth is of usual shape. The oral mucosa has pink mucous membranes. The tongue is normally papillated. The soft and hard palate are intact. The frenulum is intact. The ears are low set. The philtrim measures 1.2 cm. The chin is not recessed. The superior attachment of the right ear is 0.2 cm below the lateral canthus and the left ear is 0.8 cam below the lateral canthus. The ears do not have cauliflower or other abnormal appearance. The ear canals are patent. The neck lacks palpable masses.

The chest is asymmetrical with the left chest elevated. The nipples are laterally displaced. The umbilical cord is dry, yellow, and present with clamp and measures 6.8 cm in length and on cut section, 2 vessels are grossly identified. The abdomen is flat and soft. There are red linear superficial partial epidermal thickness skins tears bilaterally in the left lower quadrant and the lateral upper quadrant up to 2 cm in length. The external genitalia are male with descended testes. The anus is patent. The back has prominent Mongolian spot with sacral dimple.

The upper and lower extremities have a restricted range of motion. The radii are absent bilaterally. The left hand is deviated medially and the right hand is deviated laterally. Both right and left hands have four digits: one thumb and 3 phalanges. The right hand has one horizontal crease line. The left hand has no crease lines. There is incomplete fingernail development on both hands bilaterally. The right and left feet are clubbed and both have 5 toes.

The skin is tan white and not sloughed.

Clinical History of...

  I. MULTIPLE SKELETAL ABNORMALITIES

      A. Metastatic Skeletal Survey:

Rocker bottom feet. Absent radius bilaterally. Four digital rays of both hands, probably a product of absent thumbs. Distorted abdominal & thoracic viscera perhaps postmortem. Mild microcephaly suspected. 13 rib pairs. Narrow pelvis w/out significant dysplasia. Vertebral column, femora, & humeri normal. Impression: various dysmorphic osseous features as discussed. Following primarily in the radial ray syndromes, consider Holt-Oram syndrome based on absent radii & 13 rib pairs.

      B. Radial deviation of right hand with four digits & one crease line.

      C. Ulnar deviation of left hand with four digits & no crease line.

      D. Bilateral clubbed feet.

      E. Left anterior rib cage more prominent than right.

 II. EXTERNAL FACIAL CONGENITAL ANOMALIES

      A. Bilateral low set ears.

      B. Medial: lateral canthus ration of 1.9:8.1

      C. Flat nasal bridge.

      D. Recessed chin.

      E. Sloping forehead.

III. INTERNAL ORGAN ANOMALIES

      A. Absence of left leaf of diaphragm with left lobe of liver & spleen pushed into left chest cavity causing the heart to be rotated to the right.

      B. Anomalous origin of left vertebral artery originating from arch of aorta.

      C. Pulmonary hypoplasia with right lung having two lobes with hint of septation between right & middle lobes, & the left lung only having one lobe.

      D. Marked bilateral pulmonary congestion & atelectasis.

      E. Two instead of four main pulmonary veins returning to left atrium of heart.

      F. Hepatomegaly with sinusoidal congestion, dilated veins & persistent extramedullary hematopoesis.

      G. Solitary left kidney with diffuse cystic renal dysplasia.

      H. Absence of right renal artery & right kidney.

      I. Bilateral adrenal glands present.

      J. Firm, slightly thickened but patent pylorus with collapse of proximal duodenum.

      K. Gastrointestinal malrotation with absence of cecum, appendix, ascending & transverse with residual caudal limb of midgut loop situated as a blind separate structure in right lower quadrant of abdomen.

      L. Urinary bladder with thickened walls, dilated trabeculate fundus & stenotic prostatic urethra without posterior uretheral valves.

     M. Heart with otherwise normal levocardia extrenal configuration & internal anatomy with closed ductus arteriosus foramen ovale.

     N. Brain with normal neuronal migration & no hemorrhage.

     O. Serosanguinous right pleural effusion, 1 cc.

     P. Two vessel umbilical cord with microcalcifications.

 IV. PLACENTA

     Placenta 276 grams( less than 10th percentile for 35 weeks gestational age), with adequate third trimester placental villi & no atherosis. The 31.0 cm eccentrically inserted two vessel (1 artery & 1 vein) umbilical cord has funisitis & there is marked calcification of Wharton's jelly. The membranes have chorioamnionitis & mecconium. Perinuclear stippling commonly seen in chromosome abnormalities is present.

If you are 30, or older, you might think this is hilarious!

I saw this on Facebook on a friends page & I had to share...

When I was a kid, adults used to bore me to tears with their tedious diatribes about how hard things were. When they were growing up; what with walking twenty-five miles to school every morning.... Uphill.... Barefoot... BOTH ways...yadda, yadda, yadda

And I remember promising myself that when I grew up, there was no way in hell I was going to lay a bunch of crap like that on my kids about how hard I had it and how easy they've got it!

But now that I'm over the ripe old age of thirty, I can't help but look around and notice the youth of today. You've got it so easy! I mean, compared to my childhood, you live in a damn Utopia! And I hate to say it, but you kids today, you don't know how good you've got it!

1) I mean, when I was a kid we didn't have the Internet. If we wanted to know something, we had to go to the damn library and look it up ourselves, in the card catalog!!

2) There was no email!! We had to actually write somebody a letter - with a pen! Then you had to walk all the way across the street and put it in the mailbox, and it would take like a week to get there! Stamps were 10 cents!

3) Child Protective Services didn't care if our parents beat us. As a matter of fact, the parents of all my friends also had permission to kick our ass! Nowhere was safe!

4) There were no MP3's or Napsters or iTunes! If you wanted to steal music, you had to hitchhike to the record store and shoplift it yourself!

5) Or you had to wait around all day to tape it off the radio, and the DJ would usually talk over the beginning and @#*% it all up! There were no CD players! We had tape decks in our car. We'd play our favorite tape and "eject" it when finished, and then the tape would come undone rendering it useless. Cause, hey, that's how we rolled, Baby! Dig?

6) We didn't have fancy crap like Call Waiting! If you were on the phone and somebody else called, they got a busy signal, that's it!

7) There weren't any freakin' cell phones either. If you left the house, you just didn't make a damn call or receive one. You actually had to be out of touch with your "friends". OH MY GOSH !!! Think of the horror... not being in touch with someone 24/7!!! And then there's TEXTING. Yeah, right. Please! You kids have no idea how annoying you are.

8) And we didn't have fancy Caller ID either! When the phone rang, you had no idea who it was! It could be your school, your parents, your boss, your bookie, your drug dealer, the collection agent.... you just didn't know!!! You had to pick it up and take your chances, mister!

9) We didn't have any fancy PlayStation or Xbox video games with high-resolution 3-D graphics! We had the Atari 2600! With games like 'Space Invaders' and 'Asteroids'... Your screen guy was a little square! You actually had to use your imagination!!! And there were no multiple levels or screens, it was just one screen.. Forever! And you could never win. The game just kept getting harder and harder and faster and faster until you died! Just like LIFE!

10) You had to use a little book called a TV Guide to find out what was on! You were screwed when it came to channel surfing! You had to get off your ass and walk over to the TV to change the channel!!! NO REMOTES!!! Oh, no, what's the world coming to?!?!

11) There was no Cartoon Network either! You could only get cartoons on Saturday Morning. Do you hear what I'm saying? We had to wait ALL WEEK for cartoons!!!

12) And we didn't have microwaves. If we wanted to heat something up, we had to use the stove! Imagine that!

13) And our parents told us to stay outside and play... all day long. Oh, no, no electronics to soothe and comfort. And if you came back inside... you were doing chores!

And car seats - oh, please! Mom threw you in the back seat and you hung on. If you were lucky, you got the "safety arm" across the chest at the last moment if she had to stop suddenly, and if your head hit the dashboard, well that was your fault for calling "shot gun" in the first place!

See! That's exactly what I'm talking about! You kids today have got it too easy. You're spoiled rotten! You guys wouldn't have lasted five minutes back in 1980 or any time before!

Regards,

The Over 30 Crowd

Final Diagnosis...

So, the report is 13 pages long so I'm going to post in sections. Each section will have its own post each day so make sure to come back and follow us!!

Clinical History: The decedent is a 35 week 4 day gestational age Caucasian (Caucasian? I mean really? He is mixed race or at the very least African American!!) male born to a 32 yr old mother on 9/23/11. The fetus was diagnosed with multiple anomalies at 20 wks gestation including congenital diaphragmatic hernia, dextrocardia, bilateral club feet, 2 vessel umbilical cord, abnormal cerebellum, absent radii, & a single dysplastic left kidney. Chromosomal & microarray testing was normal. The mother had been followed closely during pregnancy by Maternal Fetal Medicine (MFM), neonatology, pediatric surgery, & palliative care. She had delineated a birth plan, but wanted intubation & compressions in the delivery room.

The infant was born via vaginal delivery w/Apgar scores of 2 & 2 at 1 & 5 minutes respectively. In the delivery room, he was immediately intubated by Dr. Brown on the first attempt.The heart rate was 20. Positive pressure ventialtion (PPV)with Neupuff using pressures of 30/6 were begun. The heart rate did not rise so pressures were increased & mist was noted in the tube. PPV was then given with a self inflating bag. Compressions were started at 2 minutes of life. Calorimetric change was noted in the CO2 detector w/chest compressions. Epinephrine was ordered via endotracheal tube (ETT) & was being prepared, but heart rate increased to 80 by 6 minutes of life & >100 by 7 minutes of life. The baby developed intermittent gasping respirations. Replogle was placed to decompress bowel. Pulse oximeter was placed on his right foot. His heart rate was 120-130 w/oxygen saturations in the 50's. At this point, Dr. Brown explained to the patient's mother that the chance of survival was slim. The patient was not a candidate for Extracorporeal Membrane Oxygenation (ECMO), but was brought to the neonatal intensive care unit (NICU) for a trial of high flow oscillatory ventilation (HFOV). Shortly after his admission to the NICU, the patient developed bilateral subcutanteous air in the chest wall, likely due to pneumothorax, despite the HFOV. The patient expired in the mother's arms at 1:34 am.

I can say that if it isn't already a sensitive time for us, but to then read that my son was classified as Caucasian!! Maybe to many this is no big deal, but to me I was hurt by this! I mean clearly he is the spitting image of his daddy & his a carbon copy of his grand father & they are NOT white!! He is BOTH!! I saw the look on my husband's face & I saw the hurt & frustration from this too. I mean how would you feel if a medical pathologist whom you would think would either be able to tell scientifically that he was mixed or at the very least they should've had the medical records from my delivery & pregnancy. I mean didn't it say anywhere that Eli wasn't white unless I'm color blind.. So , we requested for that be corrected.

It Just Doesn't Make Any Sense!

So, yesterday my husband & I went to our scheduled appointment with our genetic counselor at Winnie Palmer Hospital at 8 a.m. I was so excited to see what was wrong with our son. For no other reason than to have answers & closure, but just like the memorial this didn't bring closure. It was actually a nightmare! You look at me & think that I'm O.K. & holding up, but in reality is all just a cover a blanket so to speak to just be able to get through the day..

Some of my days are alright, but others are just to much for me. This day I thought would have been a good one as it was from the moment I got up until I arrived. The moment we got to the front door of the hospital I had to stop and take and deep breath & swallow down the knot in my throat. Then as we began to walk down the hallway to the Fetal Diagnostics Center I got this horrible feeling that came over me. I couldn't help but feel like these were my last moments as the tears streamed down my face I said to my husband, "I thought I'd be O.k. but this is to hard. I Miss Si.." He just looked at me & he softly said to me, "I know I miss him too. It'll be O.k., we will see him again one day soon."  Plain & simple my heart was crushed all over again, as I felt like I was making my final walk down the hall to the end. I felt like I was on death row & my time was up.. The walls were closing in on me as I had flash backs. From that point forward my day was not good. I didn't feel well anymore, I was tired, not hungry, sick to my stomach & just plain sad & depressed.. So, anyways we went over the autopsy report & I feel...... ummm, lost, frustrated, confused, and sad all over again now. The Hope of finding what was wrong with our son is running low, but hopefully with a few days rest & a dictionary I will feel better.. LOL, the dictionary is to translate the report & all its jibberish.. ;)

2012 Faces of CDH Cherubs Calendar..

O.k. so, I meant to write yesterday, but I couldn't bring myself to take the time to do it. You see, yesterday was Silas' autopsy report review appt. Yesterday was just a sad day for me, I do want to tell everyone what the outcome was, but I'll do that later. Right now I'm here to tell everyone that Silas has made it into the "Faces of CDH- 2012 Cherubs Calendar". Our sweet little boy is the top right picture of the month of Oct.  So,  hurry and get your 2012 Cherubs calendar and help our Cherubs & their families! You can order your calendar at: CafePress. Later today Ill come back and blog about yesterday & how that experience was from a mother's heart. Thanks for loving my sweet Silas enough to come back & continue to follow our story! May each and everyone of you be blessed during this holiday season & for many of you just like myself this holiday will be a sad one, but I'M HERE FOR YOU!!