Tuesday, November 18, 2008
My husband had taken a few days off from work prior to Alyssa's birth. We planned on painting our hallway, the trim in the surrounding areas, in addition to sanding, panting and placing new handles in the doors. He removed 3 doors and got started. He was first side tracked by a great summer day tha we decided to a family thing figuring he'd make up the slack when I was in the hospital. So we had our bathroom door unhinged between workhorses on our porch for what we thought would be a day. I was going to be induced so we thought we had a general idea of how things would progress. We were wrong the bathroom door was rehung a week after Alyssa's birth with out door handles, just like the linen closet and a few other key doors; the painting remains too. It's as though it all stopped, but we are living through this at the same time. I know I'm not making sense I guess like many things door handles in the grand scheme of things really aren't that important in life.
Before my conversion reading the bible was like reading Greek. Now it's like a cool drink of water when I have a dry throat. Not that I understand all of it or the fullness of every verse but it brings comfort and peace. And yes I do have a better understanding of the words contained within. It is like being given a key and I am now able to open doors that before I could not. I've picked up the bible many of times during my unsaved days and but put it down again because it just didn't make sense~ it didn't speak to me. Today I better understand why many call the Bible the living word,(other than the fact that God is ever present, that Jesus lives) because it speaks to my pain, fear, or joy, my confusion, to me. If you have yet to experience this I know to you this may sound crazy but I hope that one day you'll come to understand my desperate attempt to explain what it is like to feel your spirit /soul renewed.
I went to church as a kid and liked it very much. By 7 or 8 had the books of the bible memorized and even earlier knew John 3:16 by heart (..for God so loved the world he sent his only begotten son..) but I missed out on having sound biblical teaching. I understand now how beneficial it would have been growing up. Even though I liked church by 14 I liked other things much more...Knowing God's word (knowing the bible) is a significant piece of the Christian walk. I turn to my bible for direction, and understanding. If I had, had better training as a younger person..well all I can say is knowing your bible is important and I'm still putting this statement to use..constantly learning verses for the 1st time as a result of this trial.
I am fortunate that the Lord knew my needs and saw fit to lead me to a church that not only practices sound biblical principals, but is focused on providing sound biblical teaching to all who come through the Lord's door~ not just adults and not just to those who are saved but to all. I came to worship there after a period of years that I thumbed my nose to the idea of worshiping the Lord in a church. I was "spiritual" and created my own ideas of how God wanted me to worship him~ I thought I knew better of what he wanted me to be or do~ I give thanks today that HE knew and provided a means for me to be saved.
I'm sharing this because today was an odd day. A day in which I took a look at my personal inventory. Some things I liked and was proud of and other things not so much. I think I was just trying to understand what am I doing here, really why I am here in this place in my life with this family these children..and what am I suppose to be doing for HIM (not so long ago I would have said doing for me) yes the Lord what does He want me to do? My life is about him or at least it should be. I wish I could say I always act in a manner that showed that I know this but bare bones it's true.
Whew Alyssa had physical therapy today and she enjoyed it so much. She smiled and cooed, stuck her tongue out with delight. Awesome. This from a girl who wasn't suppose to live but a few days, a girl who wasn't suppose to be able to recognize her parents..I am thankful for the Lord's wise placement of families/people in our family's' life that are experiencing similar trials. Some of whom are right in our own church and are shining examples of how to persevere, how to rely upon the Lord, and show that it is possible to get through the "I'm dying here" days. I am thankful for caring friends and family that have been constantly present following this blog and/or sharing their support~encouragement.
I know I've gone on for way too long and I'm all over the map today I'm asking for prayers to be said on behalf of our family and for the following while I may not always list a name as we know that Lord knows and we can just lift them up and He will do the rest: for Brandon; for a boy with diabetes and his family particularly giving his mom courage and strength; for a mom/wife with breast cancer that her chosen treatment will work and that she will be a BC survivor; for a husband/wife being content in the Lord's timing in granting them children and that the practical measures being taken will result in a healthy pregnancy;for Hannah, Brianna, Anabel,Kayden, Jennifer,Allissa, Bethany; for those caring for elderly parents; for our expectant moms and new mom (dads);and you
Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! "Who has known the mind of the Lord?Or who has been his counselor?""Who has ever given to God, that God should repay him?"For from him and through him and to him are all things. To him be the glory forever! Amen. Romans 11:33-36
Wednesday, November 12, 2008
Author Joan Webb wrote: "our heavenly father is actively involved in our growth; he encourages us according to our capabilities and understanding at the time. He does not push us; he waits until we are ready. If God told us everything about ourselves and life all at once, we would be confused and crushed. Instead he teaches us based on our spiritual and emotional age level.." Can I hear an AMEN on that~ it is so true.
As I've said before and will say again I am coming to Christ a worn sinner; been there/done that and he accepts me and loves me molds me and grows me. (Sorry Ed,kids, mom..) I've never experienced or will experience another love like this.
Joan began a prayer by saying Lord you are a compassionate and caring father. Thank you for nurturing my development step by step and giving me understanding just as I need it. Help me to be as patient as you are with my simple and in prefect attempts at gaining maturity.. I'll add: Thank your for these wonderfully beautiful 120 with our daughter and showing us the hearts of friends and family alike today as I cry with tears of joy and grief thank you. You have placed wise people in my life to help guide and direct me (our family) in this journey thank you. Thank you for charity, and organizations like Now I lay Me Down to Sleep, Songs of Love, Prenatal Partners and more; support organizations like Trisomy 18 Foundation and SOFT; thank you for my church and the ability to worship freely, for the brethren within, for our Pastor(s) and their wives, the deacons and Sunday school teachers and others; for the Aunts, cousins, sibling and loved ones who've been a support, for other moms (and Dads) who are dealing with T18 and other long term illnesses who've reached out to us in kindess and thank you for this day. Thank you for our daughter. Amen
I try to balance or edit my thoughts here. I can ramble and not all venting is good, I want to paint a positive light even with this bleak news. I want to share our struggle but also share the hope that we do have. Not all my aaah-haa moments that are shared here come from my own brain. Those I trust offer good advice and listening ears (...you may be sleep deprived and you may benefit from more rest...or have you read..and have you tried..) that has enabled me to better use this outlet. It is by God's grace that Ed and I are on this journey and living it with such love, support and encouragement. Our kids have been given grace and strength too. Even as we are unaware of what each day holds we are gifted with joy, and healing. Thanks for reading and joyfully celebrating 120 days!
Be sure to turn down the volume on the player at the bottom of page before clicking the video belowSongs of Love created and Kimberly McManus sang Alyssa’s song. Pictures were compiled from home shots, Bill Tilton Photography of Delaware (affiliated with Now I Lay Me Down to Sleep) and Ms. C.G were appreciate your generous efforts.
Alyssa moved into her big girl bed~the bassinet. We had a make shift bed on her changing table that worked well due to her size and needs. Now though she is bigger and moving and we need sides so she doesn't take a tumble. She seems to like her new digs~ and we've had a continuous feeding pump for a week now!! The feeding pump slowly feeds her through out the night eliminating my having to get up and do our hour routine. I still need to check on her but it cuts down our routine barring any problems to about 15-20 min. The feeding pump is working out well. It is a little unnerving that she sleeps so well.
Alyssa is back on Hospice, with a new provider that seems better equipped or in tune with the needs of an infant. We were given oxygen in the event of an apnea episode or as needed. So far no recorded apnea events! Yeah. We had hoped never to use the oxygen but over the last few weeks have used a few times when it seemed like Alyssa's breathing seemed..chunky. This generally happened after a temperature drop, it just seemed like her breathing was more labored. We figure it can't hurt right to have a little more O2 to the brain right?
It is this new hospice provider that ordered the oxygen and the feeding pump once determining our needs. This provider seems more proactive in helping us identify what are needs are and identifying things that could be helpful for us. The other seemed to want us to tell them, but that's hard when this is your first dance~ya' know. I had only heard of the feeding pump a few weeks ago when reading Magdalena's blog (she is a few weeks younger than Alyssa.)
Here's a frustration..during these many initial evaluations most doctors preface before fully reviewing an issue or examining my child with a sentence something like "what brings you here...?" I say "we want to evaluate Alyssa's..." They say" you do realize that she has Trisomy 18, and you are aware of the outcomes..." I nod thinking "DUH!!!" then reply "yes" and smile. Not a real smile, not a warm and welcoming smile, more like a smile that says "if I weren't smiling right now I'd be chewing your ear off with a host of not so nice comments and possibly would be using your tie (or collar in the case of a female doctor) to floss my teeth when I am through. Instead I follow with a sigh, and attempt to release some tension with a good natured quip; reminding myself why it is important to keep a tame tongue (James 3).
It bothers me greatly that doctors feel the need to preface before treating Alyssa that she has T18. I understand that T18 is part of her make up and certain health issues arise b/c of it. Some health issues will not be caused by T18 or if it is some things can be treated.
I'm getting frustrated just writing this...my daughter is a baby first not a diagnosis. My daughter deserves to be looked at as a whole person. If you have arthritis and then a joint needs to be replaced. Should you not replace the joint b/c you have arthritis and that could be the cause of the joint deterioration. Never mind that you are in pain or can't use that joint well, big deal you know you have arthritis..it's equally frustrating to talk about Alyssa to a doctor and they compare her to other babies her age versus looking at her in the framework of Trisomy 18. I know this sounds contradictory to what I just said.
I mean that, YES I do know a 3 month old should weigh more than 7lbs. However in the world of Trisomy and for Alyssa specifically she had done wonders in the weight department. It is not helpful to correct me during an exam repeatedly to say that she is small or in less than the 5th %tile for growth,when I show a glimmer of joy in my daughters ability to thrive.
It is understood that if she were on the typical path, she would be bigger, able to hold her head up well on her own etc. and etc.. However we got off the typical path on 7/15/08 about 1am in the morning! We are trekking a new path and while there have been others before us on this alternate route stones have been left unturned and we are willing to kick them up in hopes that our girl will see the dawn of a new day (over and over again).
Saturday, November 8, 2008
In speaking with them,The thankfulness that I have Ed to rely on was stirred up again. In my conversations with Kathy from S.O.F.T. , she mentioned many dad's hit the high road when their child is born with a diagnosis such as this or they become detached and never "bond" with the child. I am very fortunate not to have experienced either situation. Ed is a good and loving father to all of our kids. In fact he is very kind and attentive to most kids. He's the dad that goes and plays and gets yelled at almost as much as kids for playing.
Alyssa's arrival posed a new challenge and he has stepped up. He is interested and attentive to Alyssa's needs. As needed he willingly comes to appointments. I say willingly because he could come and just sit there like a bump on the log but instead he is interactive and a good listener. To see him engage doctors, thoughtfully write out or think up questions on the fly tells me how invested he is in our daughter and her welfare. It is a real help to me and a comfort. Not that I would have expected otherwise but sometimes it's easy to take such things for granted; that he'd be here. He is wrapped around this little girls finger; hard to imagine cause Jessica has him wrapped pretty tight too! I am though thankful that he picks up the slack in addition to working. I am thankful for each day we have Alyssa in our lives and for the way generous support and normalcy of life has formed together well for us since her diagnosis. I recognize how fortunate we are and sincerely have tried to express appreciation for all this each day.
There are frustrations though that come along and when I share them please know that it is not my intent to complain rather I'm just trying to process things and figure out how best to handle all that is placed in front of us...I had asked a mom of another sick child how to manage my doctors appointments for Alyssa. Emotionally as well as practically. A key piece of advice was to remind doctors that our daughter deserves dignity and quality in her life for however long she is here. I often battle with myself to be my daughters mother, yes a mother who can advocate for her girl but a mother. As a former Advocate/Social worker it is very tempting to want to take on that role in Alyssa's life ~ you know present my daughter as a case vs. my child. She has though a wonderful nurse Case Manager and other capable professionals to help us deal with the medical pieces and balancing the doctors. Alyssa needs a mom she only has 1 of those. Like many pieces of this puzzle it's all a balancing act I can't be too sensitive by the observations of or the findings that the doctors have. I have to present our concerns for Alyssa with confidence and a willingness to be firm in what we know to be true while accepting that each step is a learning experience too. It's a step by step process.
We all have trials, disappointments, or illnesses to deal with in the mix of all the good things in life. So if for no other reason than to communicate hope in an otherwise sad situation I thank you God for all that is good in our lives. Every day it seems a question is posed about how to proceed in one area in her life or another. Wisdom to know what to do and when is constantly needed...Everyone, should be quick to listen,slow to speak, and slow to become angry. James 1:19
Friday, October 31, 2008
As a teen I ran track, my favorite event being the hurdles. In my head I'd count my steps 1,2,3,4,5...get into my stride hit a rhythm that lifted me off my feet, straddle and land; only to repeat in quick time 1,2,3,4,5 stride, off my feet, straddle and land. The moments over the hurdles were as though I was soaring, seconds w/o gravity holding me down,the wind in my face then tip~tip~tip grab my feet touch the ground; with the gravel beneath my feet 1,2,3,4,5...off my feet, straddle,land until the race was done. The challenge of clearing the hurdle without touching it tipping it or hooking it to cause either me or it to fall was invigorating. It wasn't about winning which I did often enough, rather I just liked to finish a well run race. Not all hurdles can be cleared and not all races are easily won. My track days are long gone and now we as a family are running a much different race. Dr. S said Alyssa cleared a hurdle she's survived 3 months. This is just 1 hurdle of many. While I am joyful, it is also sobering. How are we going to finish the race of my daughter's life?
I thought that if Alyssa survived to 3 months that I would feel better about the given prognosis. I was wrong. I thought that hearing Dr. S say that Alyssa is fragile but healthy would bring comfort. It does but even though I appreciate her opinion that Alyssa looks to be a long term survivor of T18 it's not a lasting comfort. Wouldn't it be hypocritical of me to say "what do those doctor's know..." because she is alive today and surpassed the initial expectations? Yet encase the prediction of her being a long term survivor in certainty because it meets with my hearts desire. This is a lesson, a test in patience, and faith; understanding that I lack control in this situation.
I took some time away from blogging or rather intense blogging because I've been wrestling with so many emotions. I took the advice of a someone I trust to focus on getting adequate sleep, turning to the scriptures for direction/comfort and acknowledging that there aren't any easy answers or paths to take in this trial. At least that is what I took away from our conversation.
I think because we were given such bleak news at Alyssa's birth that while we had hope,our expectation was that she was not going to survive. We were just hoping to be able to bring her home and let her experience our love here before passing. We thought we had days at best, maybe a month. This little spitfire though did something we didn't imagine, she survived. We repeatedly said for this being the worst news ever, this is the best possible outcome so far! She didn't have any apnea episodes, no major health issues with her major systems. No heart problems, or lung issues, up until 2 weeks ago she didn't take any medications except for vitamins!Basically she looks small like a preemie, but a fairly typical appearance. Yes I do see some of the tale-tell signs of T18, but straight away most people don't. I think this tricked us into almost seeing her as well, because we were expecting so much worse.
I found a few T18 babies similar to Alyssa, many who not only survived the 1st year but are old at 19 months, 4 years, 7 years and even 22 years old! On the other hand a few died at 6 months, 9 months, 16 months and 4 years old. So it's that see-saw effect how fully do I rejoice in Alyssa being "healthy" because we know from the experience of others her health could decline in a blink of an eye.
The lack of sleep really affected my handling of this all too. I felt myself draw nearer to the Lord the moment the words T18 entered my consciousness. I feel so blessed to have been given this gift of faith and the strength to endure this unfolding trial. This test of faith as I see it has clearly and most vividly given me proof that there is a living God and He has been at work in me, in Alyssa and our family. It's not just because she is doing well that I know this,the Lord has revealed himself to me. I can't adequately write it out as so many emotions, thoughts and truths are involved. Yet I can say that as a Christian I have grown leaps and bounds since July and I am thankful for this. There is a strong inward struggle that comes along with this growth/realization (at least there is for me) and to counter all the forces in play I need to be consistent in devotions~reading the Bible and mediating upon the words of the Lord and get sleep. Lack of sleep can be a dangerous thing in many ways and without clarity of mind much can be lost. So these last few weeks I've tried to dedicate time to reorganize my thoughts, my days and rest; so that I can be the complete person I need to be as a Christian wife and mother.
Bottom lining it this... we have more hurdles to clear. Will she be alive at 4 months, 5, or the ringer month 6? If she isn't how will I cope? How we we cope as a family? This is a perfect example as to why it is important to focus on the day to day and not look too far into the distance. Who of you by worrying can add a single hour to his life?...Therefore do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of it's own. Matthew 6:27 and 34
Saturday, October 25, 2008
The Top 10 things (well almost) having a Trisomy 18 baby has taught me:
10. 30 cc is equal to 1 ounce. Proper ph for our daughter's stomach is between 1-6. I can never say..."I'll never use high school math or science in everday life." For I now use it everyday.
9. It is possible to hold a baby, change the diaper of a two year old, actively answer the "why" questions of a 5 year old and tell a 12 year old what there is to eat in the fridge all at the same time!
8. Picking the nose only begins the list of delicately sqiumish things a mother would do for her child...can we say suppository.
7. Juggeling is not an act that is done soley with balls, cubes or plates. Schedules/appointments, phone calls and meal preparation apply too.
6. God is good.
5. Medical school is where doctors go to get basic training for parenting.
4. Family is more than DNA, the blood of Christ binds much more deeply.
3. Don't run a quick errand after doctor's appointments. Go home and rest. The cashier/ service representative finds it difficult to understand what is being said through tears and doesn't get why your blubbering in the first place. S/he just wants your check/Mac card (??payment of choice) and for you to get on with it; no explainations please!
2. Love knows no bounds
1. In all things glorify God.
Alyssa's first genecist ~that we had by default~ Dr. Z offered no hope to us regarding Alyssa's condition. I think if a person lives life based on statistics then surely dissapointment will be overwhelming. However when hope and faith lead in life statistics are just numbers the real proof is in the living. I fully assert that doctors do not have chrystal balls and cannot see into the future. Predictions or educated guesses lead them and medical needs direct them but in the end it's the sovergnity of God that alone holds the outcomes. Many times the training and gut instincts doctors have are inline with what God has in store and then there are the times where God reigns so supreme he renders the opinion of a doctor mute.
I wonder could this be one of those times?
We were told Alyssa has full Trisomy 18, and not to expect her to survive more than a few days at best. Then we were sent home on hospice~ a choice made so that our child could die at home with our love~told not to expect her to live a month. At 2 months we really questioned her diagnosis were they sure it was full T 18, maybe it is mosacic. Alyssa's major organ systems are "healthy", she is fragile but appears healthy. Somethings has got to be off right?...
We decided because we felt as though we had too many unanswered questions about Alyssa's genetic make-up and we were not pleased with Dr. Z; we'd look for a new genecist. It's not because Dr. Z was the bearer of bad news that we decided to change but CHOP did make a significant error (without apology to date) in the report regarding our daughters' genectic make up. While the error didn't affect her diagnosis, it was something that is significant. The CHOP report in that area is wrong and this mistakes still needs correction. Now it's left up to us to back track and get the correction made. Anywho we want to work with someone who we deem to value our daughter's life even if she has a diagnosis that is incompatible with life...
Dr. S with Einstein/duPont (not CHOP) is our new doctor and it's official Alyssa has full Trisomy 18. We are glad to have this concrete answer. Dr. S the geneticist is personable and a good match for us. She will follow Alyssa, so we expect to develop a relationship with her. Upon Dr. S's initial evaluation she finds Alyssa to be healthy!
She used the word healthy~the word I was trying to stop using...Dr. S indicated that apnea and infections are the significant issues now. We've (Alyssa has) overcome the first big hurdle making it this far. She see's Alyssa being a long term survivor. My mind is trying to reconcile that I have a terminally ill child who is as "healthy" as my healthy children. Yes she is small and fragile but she is stable. She could survive till 1 years old, or 4 years old or God grant it 22 years old! There are several families with T18 kids of various ages. Yes I know the statistics and I also see that those "not compatible with life" have found a way to make do..wow!!
There are many hurdles to jump between now and 6 months let alone a year or more but hope..having hope is a wonderful thing. These kids are wonderfully made..whether or not speech utters from their lips, or steps abound from their feet..they are wonderfully made and a gift.
Friday, October 24, 2008
For her ortho. regimen; we are to return in 2 months for x-rays. Aside from that Alyssa has no restrictions. Dr. Linton happened to be at this office for a rotation in King of Prussia. We hadn't seen her since the NICU, she was one of the doctors that cared for Alyssa. She seemed impressed with Alyssa's growth and wellbeing.
There were no concerns for her kidneys, Alyssa's scans were normal at birth. She should have repeat blood level drawn in a few weeks to check functioning. All in all she is typical in this area.
Wednesday, October 8, 2008
Thursday, October 2, 2008
I do want to acknowledge that how my heart speaks regarding Alyssa is similar for my other kids too. I know this doesn't need to be said, but I want to. Each of their births were (and continue to be) a miracle. I am appreciative of their lives and the time I have to spend with them. Unique individuals they each are and special to me in ways that are difficult to express. Alyssa's arrival heightens these feelings. I am so grateful and thankful to my living God for my children.
As a family I can say we are not typical, backwards in many ways but I think the love we have for one another is evident. While we need to express a little more patience and kindness towards one another, the bond is strong. I thank God for preserving my marriage so that my children can feel love and protected in a two parent household (before anything is said I was raised by a single mom). I think it is a benefit and a gift to them to have a mom and dad that like each other and them; in addition to loving them. We are blessed.
Pulmonary Appointment Monday Sept 29th
Alyssa's lungs were clear and her oxygen level was at 95%. (I was pleased b/c she had a stuffy nose.) She will be followed by the Pulmonolgist regularly.
Dr. M noted no concerns with Alyssa's lungs at all! They are functioning normally.
There is a concern as we knew regarding her diaphragm. Alyssa has a right side diaphragm eventration (Extreme elevation of her right half of the diaphragm, which is usually atrophic and abnormally thin)and it is slightly larger than when at birth but not problematic at this time.
The only way to repair this problem is by surgery but that isn't recommended now. If she should develop problems relating to the DE, then we will look further into correcting with surgery.
This was all good news. The Lord again has spared us the worst of the worst. Big prayers have been answered. My question to each doctor is...we know the prognosis of her condition based on that what would be the expected cause of her passing. Dr. M is in agreement with all the rest that it would be a respiratory event. Since her lungs are healthy it would likely be aspiration pneumonia (vomit or reflux gets into the lungs, causing inflammation). Which means how Alyssa tolerates feeding ,eating is important. We don't want her to choke or have difficulty swallowing .
I know it is strange to feel joyful in knowing the above but it relieves some of the stress of thinking that at any moment her lungs will just stop working or that they are working inefficiently. It is helpful to know that more than likely it would be a specific event like choking that could cause the pneumonia.
The best news of all is that Alyssa has had 0% of recordable apnea episodes. This information was downloaded from her apnea monitor. 0%!! The breaks in breathing I had witnessed (2) were not related to T18 but the type any infant has~ it may have seemed worse to me because I was (am) so focused on looking for breaks in breathing. It is normal for infants to take 5-10 second breathing breaks 20 seconds or more is an apnea event.
The next big appointment in our book is the geneticist. We can get a lot of good information from her hopefully. i don't expect she'll have much at our initial appointment but may help be a guide in all of this.
I need to go but I just want to acknowledge God's hand in this, can you see it? Not just at the pulmonary appointment which his work is clearly evident or at the heart doctor but in all of this. We received the worst possible news parents can get..before we had a chance to celebrate Alyssa's presence we were thinking of her departure. Yet her she is 78 days later. We were told how all the major organ systems are affected by T18 and again God's grace is evident.
What a fool I was before knowing him what a fool! Everyday and in every way I now know He is here, He knows every hair on my head and thought in my mind. Praising him all the days of my life, thanking him for all the days of my daughters.
Thanks you for your prayers regarding these appointments and for everything.
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.