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| August 31, 2005 |
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Born in Annapolis, Maryland on August 31, 2005 on a Wednesday morning at 7:54am. He weighed 7 pounds and 8.3 ounces and 19 inches long. We thought that we had a healthy pregnancy so weren't expecting to hear any bad news after birth BUT we were wrong. We learned pretty quickly that something was wrong. The nurse kept saying that his oxygen level was too low but his color looked great so something wasn't matching up. They said as procautionary procedures, they had to take to NICU for 6 hours and then we could have him back. But then as my husband could take family members down one by one to see him, it quickly turned into 24-48 hours. Then, within another hour, they did an Echocardiogram which was concerning for single ventricle pathology, and sent it to Fairfax, Virginia and said he would be going there. He was noted to be cynanotic at birth and underwent a hyperoxia test on 100% oxygen, which he failed, with a p02 of 39. There was no evidence of any respiratory distress, and a chest x-ray was clear. Prostaglandins were initiated and cultures were sent.Fairfax said he was too complex for them and that he had to go to CHOP (Childrens Hospital of Philadelphia). Where he got transferred to late that night. |
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| September 2005 |
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September 1, 2005 we learned fast that our son's problem was a heart defect which is Hypoplastic Left Heart Syndrome and his aorta was too small, so they would have to make it bigger. CHOP found him to be non-dysmorphic with a soft fontanelle. An Echocardiogram done at CHOP was read as showing a double outlet right ventricle with mitral atresia and a large malaignment ventricular septal defect. There was significant subaortic stenosis with AV valve attachments under the aortic valve. There was also arch hypoplasia and a widely patent ductus arteriosus. The aortic valve appeared to be bicommissural, and there was leftward deviation of the superior attachment of the septum primum. The pulmonary veins were all seen and appeared to be normal, and the systemic venous anatomy was normal with no evidence of a left superior vena cava. The arch was left-sided with a discrete coarctation. I got released from my Hospital in Maryland and went straight up to Philadelphia to be with my husband and our son.
September 2, 2005 Mason had his first open heart surgery, which went pretty good but they brought him back up on Ecmo, which is life support (with the canules through his neck), and just with a patch on his chest instead of closing his chest because he now had arrythmia. Which they said is normal after this sort of surgery and should go away in a few days. We got a phone call later that night, that they had to take him back down to surgery and get some clots out and put a suture (stitch) near his aorta.
September 6, 2005 Mason had really improved in the past few days so they took him down and removed him from Ecmo, but luckily left his chest open for another few days. A few hours later, they said something was wrong and took him to their Cath Lab and brought him back up on Ecmo again (with the canules through his actual heart this time). They said his heart looked as good as it could for his condition so the problem now has to be his lungs. They warned us that the lungs are very hard to detect what the problem could be but they'd try a new medicine. We were also warned that any child that gets put on Ecmo a second time has even lesser survival chances. But the surgeons are still somewhat optimistic at this time.
September 9, 2005 The doctors started a feed tube of breast milk through Mason's nose. Which sounded like another improvement at the time.
September 12, 2005 Mason is containing a lot of fluid , which is making it harder for his lungs to try to work properly on their own, so at his bedside, the surgeons opened his patch and flushed out the fluid from around his heart and lungs to try to help him.
Septmeber 13, 2005 They tried to turn down the lung portion of the Ecmo to see if he could do the breathing on his own and he failed within a few seconds. They said they were going to leave him on Ecmo another week and hope that his lungs get stronger on their own with time. They took Mason to the Cath Lab again today to see if the heart was still doing as good as it could and it was. Now Mason got put into his own room instead of being in a quad room.
September 17, 2005 The surgeons opened Mason's patch again and flushed the fluid out from around his heart & lungs again to give him a better fighting chance.
September 18, 2005 We saw him all during the day and he was still looking better at least on the outside that is. We got a phone call later that night reporting that Mason had caught a Bacterial Infection (septis), most likely from the Ecmo machine and that they were switching his antibiotic to a stronger one but they warned us that things aren't looking very good.
September 19, 2005 The Ecmo specialist switched out Mason's Ecmo circuit to a new one(a very risky thing to do due to the fact that he had to go a few minutes off the machine but he did great with the switch), hopeing that most of the Bacterial Infection was in the old Ecmo circuit. We were told by two different surgeons today and one Ecmo specialist, that none of them think Mason can fight all of this at once and survive. Basically, all we can do is hope but start having those serious talks this week.(I dreaded and avoided these serious talks as I always thought I was going to have that miracle baby to prove everyone wrong!)
September 20, 2005 I was sick so I couldn't go to visit today (which absolutely killed me but I could not risk spreading anything else to my sweet poor innocent baby) but my husband did go visit and he said that Mason was starting to contain a lot of fluid again and was already double what he got last time. (NOT good at all....VERY saddening!!)
September 21, 2005 My husband went in the morning to see him while I rested more hopeing to get in to see him that night. My husband reported that he was even bigger than the night before. Once again, even more...NOT good at all!!) That night, I went up to see Mason but I had to wear a mask on my face due to being so sick. As soon as I got to the door, I could already see just his head. Our poor baby boy was already probably 4 times his size in puffiness from all the fluids and this terrible infection that he caught. Unfortunately his kindneys aren't strong enough yet for them to help scuff fluid off of him with the Ecmo circuit like they did the last time. It was so hard to see him like that.
September 23, 2005 We met with Mason's primary surgeon and we had that talk and he told us to make the phone calls to get the family members who needed to be there for us abd could be there for us, on their way. We spent the whole day at the hospital with him but it was so hard (and SO emoyional!!!) knowing that they were removing him from the Ecmo Circuit tonight and that we'd be on our way home tomorrow but without our baby. At approximately 9:51pm, our sweet angel, Mason passed away and went to heaven. His Father and I held him as he went as much as we could (due to his chest still being opened and hooked up to the machines; just not turned on), so he didn't have to go all alone, he got to feel both of our touches as he passed on. We got to stay in his room with him for a while and touch him and cry and mourn for him. Mason's nurses made us a little keepsake box with his footprints on the cover and his handprints on the inside cover, and a lock of his beautiful dark hair (I loved his hair SO much...such gorgeous dark and lots of it hair) in a little clear box. We went to stay our final night at the Philadelhia Ronald McDonald House (needless to say neither of us got much sleep at all that night especially). We finally agreed to an autopsy at the last minute of his heart & Lungs only because they were his only problem areas. (We didn't want him to be cut up anymore than he had already had to be repeatedly).
September 24, 2005 We said our good-bye's to the great crew at The PRMH who were there for us the whole time and did SO much for us. We finally returned home to Maryland just not the way hoped or planned. And boy....was that the longest and most tearful ride that we've ever had to take ever in our lives!!
September 25, 2005 We met with the funeral home in Maryland to make the final arrangemants for Mason. (Again....one of the hardest things we've ever had to do or go through ever!) He was getting transported from a funeral home up there to our's down here.
September 26, 2005 We met with the graveyard lady and scheduled that, and we chose the perfect headstone for our little one. He was going to be laid to rest in a "Lullabye Land section" at Glen Haven Memorial Park with other little babies. Again...one of the hardest things to ever have to do!!!
September 27, 2005 We had the viewings from 3-5pm and 7-9pm. My husband & I got to go in at 2pm to see him for our final time. It was one of the hardest hours of our lives. But it was also our only time to see our baby boy in an outfit :-( He was so swollen when he passed away that we didn't want to have an open casket for everyone to remember him that way; so only we got to see him one last time for that hour. (SO hard to say good-bye!!!)
September 28, 2005 The funeral was scheduled for noon. So everybody met at the funeral home at 11:15am for the precession to the graveyard. We had a limo take My husband & I with Mason in his coffin between us (SO hard to do....we both held on to him SO tight the whole way there), and our 4 pallbearers, which were, Grandpa Ron, Uncle Jon (His GodFather), Uncle John (Daddy's best friend), and Matthew (Daddy's cousin). Then we went to my parent's close family friend, Mrs. Kathy's house for a gathering/ wake. Our drive from the cemetary was also a long tear-jerker ride, heartbreaking!! This was all the hardest experience we've all ever had to go through and we'd NEVER wish it on anyone!!!
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| November 2005 |
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November 17, 2005
We received the results from Mason's Heart/Lung Autopsy. Final Autopsy Diagnosis:
23 day old male infant with complex congenital heart disease, status-post Stage I Norwood repair at day one of life. Born at term via Ceasarian section to a 25 year old, G2P2 mother with unremarkable prenatal course. Apgar scores 6 (1 minute), 8 (5 minutes), 9 (10 minutes). Cyanotic at birth. Post-operative course complicated by local hemmorage, Grade II intraventricular hemorrage, and need for prolonged extracorporeal membrane oxygenation.
Autopsy limited to Heart and Lungs
I. Hypoplastic Left Heart Syndrome, status-post
Stage I Norwood repair:
A. Mitral valve atresia.
B. Aortic valve hypoplasia and mild stenosis.
C. Bicuspid aortic valve with rudimentary
intercoronary commissure.
D. Muscular ventricular septal defect, small.
E. Focal myocardial necrosis and calcification.
II. Congenital alveolar capillary dysplasia with
misalignment of pulmonary veins, lungs.
III. Bronchopneumonia, bilateral.
IV. Post-surgical changes:
A. Open chest wound with synthetic patch
closure.
B. Fibrous adhesions and organizing blood
clot, anterior chest wall.
C. ECMO catheters in place, anterior chest
wall.
D. Draining chest tube, right anterior chest.
E. Right internal jungular vein clipped.
F. Right common cartoid artery sutured
closed.
G. Chronic inflammation, epicardium.
V. Simplification and partial absence of intralobar
fissures, both right and left lungs.
VI. Serosanguineous pleural effusions, bilateral,
25 cc each.
VII. Anasarca, moderate.
NOTE: Alveolar capillary dysplasia (ACD) with
misalignment of pulmonary veins (MPV)
is a rare cause of pulmonary
insufficiency in newborns. Recently, an
association was found between alveolar
capillary dysplasia with misalignment of
pulmonary veins and hypoplastic left
heart syndrome. In the series of Rabah
and Poulik, three infants with hypoplastic
left heart syndrome and ACD/MPV were
described. All three also had hypoplastic
aortic arch, stenotic and bicuspid aortic
valves, and periductal aortic coarctation.
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