Saturday, September 27, 2008
My brothers and sisters, you will face all kinds of trouble. When you do, think of it as pure joy. Your faith will be put to the test. You know that when that happens it will produce in you the strength to continue. The strength to keep going must be allowed to finish its work. Then you will be all you should be. You will have everything you need. (James 1:2-4)
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. (2 Corinthians 1:3,4)
The Lord is close to those whose hearts are breaking; he rescues those who are humbly sorry for their sins. The good man does not escape all troubles-he has them too. But the Lord helps him in each and every one. (Psalms 34:18,19)
Wednesday, September 17, 2008
We had an unexpectantly busy day today. This morning Alyssa had an appointment with the ENT. We learned that she had very tiny ear canals and nasal passages. This is common with genetic disorders.
Alyssa failed a hearing test at a week old on her left side. Today's examination showed that the canals are so small on that side Dr. L couldn't even see her ear drum. This may change with age or it might not~it's a wait an see. Alyssa does hear out of her right ear even with a small canal on that side (the left side is considerably smaller). She even had wax build up! (I never thought I'd celebrate earwax). Her nasal passages are also small which accounts for her noisy breathing and congested sound at night. Saline can help moisten and reduce the sound but until she starts breathing from her mouth and nose- a skill most babies learn around 3 months-vs. being a primary nasal breather she will have nosier breathing.
We have a follow up appointment in a few weeks and she will have a cat scan then to get a base line of her oral and nasal cavities. Overall the appointment went well. We'll have more information later but it's good to know that at this point there are no serious concerns.
Alyssa and I quickly went into the store on the way home. I had her in a carrier on my chest. As I hurried along (cause as you know germs don't stick if you move fast *ha-ha*) I heard people admire Alyssa and her small size. I gave a smile and a polite laugh but did not engage anyone so we could make a quick get away. I heard one older woman say something like "oh new mom's they're always so nervous." If she only knew :0)
Alyssa did not enjoy her car ride at all. Monday she did fairly well but today she was a pistol. When we got home she wanted to be held and when I didn't she cried. So guess what I did..held her.
Our insurance company has denied the $65,000 bill for Alyssa's CHOP stay. Apparently this is typical, as they want it to be resubmitted. They itemize the bill each time it's submitted by the service provider, to look for ways to reduce costs or validate services. This must work well because a few weeks ago the bill was $70,000. The downside is that we get called by the service provider for a resolution or for payment. In other words they want us to bug the insurance company to pay the bill and to encourage this they bugs us. What a tangled web! It'll get covered..eventually
They have also denied a medication that would help ward off RSV which is a potentially dangerous virus for any baby let alone a medically fragile one. So I had to write an appeal letter and fax that over to them; in hope's they'll reconsider. Insurance is great until you need it but don't get caught without it! Ya know. I can hear the Kaptur's in the distance saying..it's only the beginning. I know they have dealt with things of this nature and more!
Anyhow just seems like the day came and went.
Welcome to the world baby Camille. Congratulations Brook and Jeff!
This week we are celebrating 9 weeks of living!!!
Monday, September 15, 2008
Thank you for your prayers. Our prayers were answered today in a most direct and undeniable way!
Alyssa was released from CHOP without heart medication but was said to have congenital heart disease. It was concerning for us not to know the extent to which her heart affected her overall health. Alyssa was born with 3 "holes" in her heart. The two in the upper chambers are VSD 's(ventricular septal defect) and 1 in the lower chamber is an ASD(atrial septal defect). The following was determined by reading the echocardiogram report from 7/16/08 and reviewing that study; as well as a EKG (electrocardiogram) and a second echocardiogram completed today...
One of the two VSD that were present at birth has already closed! The second is nearly closed and most likely wouldn't be present in a few months time!! Dr. D said having one or two small VSD’s is like not having any at all, it really is not concerning. The ASD is small and will likely close (as it is nearly closed now) in the near future. Even if it doesn't due to its size and location there isn't any need to treat it surgically or with medicine.
People with this same type of “hole" live normal healthy lives. At future medical appointments a murmur may still be heard but it is the type of murmur that anyone could have- in other words it is not a condition specific to T18. The bottom line is that Alyssa DOES NOT have HEART DIESEASE. This is wonderful news!!! While we still have other hurdles big and small regarding Alyssa's medical status, this was a BIG one and we feel so blessed. I know the heart can play a role in apnea episodes. Cardiac complications such as heart failure is one of the most often causes of infant death with children with Trisomy.
Dr. D the cardiologist was very kind. He mentioned that he currently treats an 8 year old with T18. He said that incidents of children surviving longer (up to a year) has increased slightly because the medical community IS addressing congenital heart problems in T18 babies. My loose interpretation of what he said is that addressing cardiac concerns may not change the prognosis of the syndrome but it is an encouragement for the treatment of these cardiac complications.
Hearing this news I think of beautiful Brianna Botts and her big blue eyes. I spoke with Brianna's mom last night and she refers to the choice of treating Brianna's heart issues as a main reason for Brianna’s long term survival. Brianna is 17 months old. While I am joyful, we know that Alyssa is medically fragile, apnea and respitory infections (like pneumonia, RSV, or the sort) are another common cause of death. Alyssa has an upcoming pulmonologists appointment to address her diaphragmatic hernia (her diaphragm pushes into her lungs) and access her lung status. Please pray that we would again receive good reports regarding her lung health.
A big prayer was answered today. A healthy heart..wow! Praise God!
Saturday, September 13, 2008
We are blessed to announce the birth of our beautiful baby girl...
Alyssa Grace Shihadeh,
4lbs 3oz., 18 inches
July 15th 2008
Was the announcement we made via e-mail (on the 16th) to most of our family and friends. Phone calls would have been too difficult; too many questions would be asked. We wanted to celebrate with them before sharing the devastating news that Alyssa was born with an extra 18th chromosome (Edwards Syndrome). A syndrome that would result in her life not lasting more than a few days or months at best. We needed time to digest the thought that our daughter whom looked perfect to us, was not expected to live. How could this be?
Just so you all can get an idea of our journey to this point I am including some e-mails that our Pastor had graciously sent out on our behalf.
I also wanted to take the time to say THANK YOU to our church family, family and friends who have been so caring. We hope that you'll use this site to get updates on us as a family and about Alyssa. We will update it as often as we can.
7/16/2008 : Please pray for little Alyssa Shihadeh. I know some of you were concerned just at the low birth weight. She was transferred yesterday from Chester County to CHOP for testing. The Doctors were concerned about her lungs. Last evening we heard that they ruled out a tumor but have concern about her diaphragm. There other tests that are being done that are potentially serious. Let’s pray that these serious illnesses will be ruled out and that God will help little Alyssa to overcome a difficult start in life! Poor Trish … she delivered at 12:40 am Tuesday and later that same day was released so that she and Ed could travel into Philadelphia to see Alyssa. She has not had a chance to physically recover from delivery and is facing serious illness in her little Alyssa...
At a practical level, Joy has the older three children today so that Ed and Trish can travel to CHOP this morning. Nancy and I will meet Ed and Trish there. Pastor Bob will have an update for prayer meeting... Let’s pray that the Lord will be working this for good at various levels!
James 5:16-18 … The effective, fervent prayer of a righteous man avails much. 17 Elijah was a man with a nature like ours, and he prayed earnestly that it would not rain; and it did not rain on the land for three years and six months. 18 And he prayed again, and the heaven gave rain, and the earth produced its fruit.
July 17th: As you know, little Alyssa Shihadeh was born at 12:40 am Tuesday, July 15. She was moved from Chester County Hospital to Children’s Hospital of Philadelphia on Tuesday afternoon. On Wednesday afternoon Ed and Trish met with seven doctors and Alyssa’s critical care nurse. The medical team though not absolutely certain had diagnosed Alyssa as having Trisomy 18. This was the news that Ed and Trish were dreading to hear. On Thursday afternoon at a follow up meeting, the doctors had more results back that confirm the Trisomy 18 diagnosis. The doctors have been good in their conveying of their diagnosis and prognosis while respecting Ed and Trish’s obvious love for their little girl.
Trisomy 18 (Edwards Syndrome) is rarer than Trisomy 21 that we more commonly know as Down’s Syndrome. Trisomy 18 is also much more serious. The likelihood of a child with this condition seeing their first birthday is between 5 and 10 per cent. The underdeveloped brain typically forgets to tell the lungs to breathe. So a little one may come home from the hospital and then just pass away when a parent is out of the room. Those few Trisomy 18 babies who survive a year will not know their parents from a stranger, may sit up but never walk and will never talk. The articles provided at the links below list a host of other problems relating to the digestive system, kidneys, etc.
Little Alyssa is a beautiful, petite baby with a full head of dark hair. She reminds some of us of her sister Jessica when a newborn. Alyssa is stable for now and is tolerating a small amount of milk. She has a tube through her mouth to her lungs to assist her breathing, though she is at a minimal level. She has a smaller second tube through her mouth to her stomach.
We have held off giving some of these details until the further test results were announced in this afternoon’s meeting. Obviously, this is a very difficult trial for Ed and Trish but they are doing well. Trish was walking some today at CHOP but yesterday she was still using the wheelchair as she has just gone through labor and delivery. I believe God is helping Ed and Trish to process this sad news and to make decisions regarding Alyssa’s care. Let’s continue to pray that God would give them help and that they would sense His presence amidst their grief. Let’s also pray for Ed and Trish that they would get some sleep!...
Friday, September 12, 2008
There was a picture of a rocker bottom foot on-line and a picture of Alyssa's foot in our camera. When comparing the two I knew and I cried out in despair. I left the PC and went to bed. Ed was tossing and turning and I said "she's going to die...I don't want her to die." I have a habit of talking in my sleep, so I don't think Ed thought I was fully awake. He thought I was talking in my sleep, but still said "what?!?" I said " Alyssa she has Trisomy 18 and she's going to die, I don't want my little girl to die." Ed rolled over as I cried uncontrollably. I don't remember all that was said but he reassured me that I was going off the deep end, I do tend to look at the worst of things while he is more optimistic. He reassured me enough that I was able to get a few restless hours of sleep.
In the morning I called our Pastor's home. In speaking with Nancy, his wife I confided that I felt the hospital was keeping something from us and I was fearful that it was a diagnosis of Trisomy 18. I ended the conversation as we were getting ready to go to CHOP. Nancy and Pastor Mitch were going to meet us at CHOP later in the day.
After dropping the kids off with friends, Ed and I talked in the car. He feeling confident that everything would be fine and work out and me wanting to believe that but was really unsure. We arrived at CHOP and spent some time with Alyssa. Dr. L came by to say "hi" and engage in some friendly banter, but I wanted answers. She was vague at first because she wanted the entire team there to present their current findings. I pressed on and finally blurted out..."you think she has Trisomy 18, don't you". Surprised Dr. L asked if we had heard of it and we confirmed that we had. She confirmed with us that this was indeed what they thought she had but they would have more answers later...If she said anything else I don't remember Ed and I were crying at this point. In an instant my whole world shrank and I felt smaller and weaker than our 3lb 11 ounce little girl who laid in her isolate in front of us.
An hour or so later, the Pastor Mitch, Nancy, Ed and I along with a host of doctors met and the disclosed the preliminary findings Alyssa has Trisomy 18. We waited for the meeting to conclude before the 4 of us grieved like I never imagined I could or would have to in my life time. We spent more time with Alyssa, then left her and returned home to be with our other kids. We told our eldest son the facts as we knew them, the younger ones just knew that Alyssa was (is) sick.
We met again with the doctors on Thursday in which we received the final genetic report and discussed removing the breathing tube from Alyssa. All the kids were with us and we decided to take pictures as a family for memories sake. Alyssa's breathing tube was removed around 2pm and within an hour not only was she still breathing on her own, she was drinking from a bottle. All her major organs were functioning within the normal limits. Her heart has 2 small VSD's and an ASD; which we don't know how this will affect her. Her diaphragm had herniated into her lungs however did not compromise her lung functioning, again we don't know the affects of this either for her overall health. We know her brain is affected but not to what degree, she hadn't had any apnea episodes. Alyssa spent a week in the CHOP NICU.
Each day was a blessing, especially as we saw her progress. Visit her care bridge page www.caringbridge.org/visit/alyssagraceshihadeh for the daily updates of our time at CHOP.
Monday, September 8, 2008
6/5/2008: During my routine prenatal exam, the doctor couldn't determine the positioning of the baby. I was at 35 weeks 6 days (I gave birth to a footling breech baby vaginally prior at 34 weeks) and the doctor wanted some assurance to the positioning of the baby. An ultrasound was scheduled for the next week.
6/10/2008: It was noted that the fetal heart rate was 134 bpm. That my amniotic fluid was mildly increased at 20.5 and the placenta was anterior. The baby also measured a week smaller in most areas except for the head and abdomen which was 6 weeks smaller (29 weeks 5 days vs. 36 weeks 5 days). Fetal weight was estimated to be 4lbs 2 ounces. None of these findings were brought to my attention at that time, as a cause for concern; I only discovered the information after obtaining a copy of my medical history.It was from the findings in this ultrasound that was scheduled for weekly non stress tests (NST).
6/13/2008: Returned to the office for a NST. upon failing the NST a fetal biophysical Profile (FBP or BPP) was completed. A BPP is an ultrasound in which a tech assess fetal well being (how well the baby is tolerating being on the inside). A score is given during the exam for movements and fluid volume. 0 to 2 points are given for the four assessed areas. At this exam the baby scored normal or 8/8. My report amniotic fluid level was 12cm
1. Normal episodes of fetal breathing motion (b/c babies don't actually breath inutero) were observed: 2
2. At least 3 discreet body/limb movements were seen: 2
3. At least one episode of active extension/flexion identified: 2
4. The amniotic fluid volume is qualitatively normal with at least one pocket measuring 2 cm in two perpendicular planes: 2 points.