Friday, October 31, 2008

Inward warfare

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, 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.

What will the future hold?

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!!

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


In the past few weeks we have had orthopedic and nephrology (kidney) appointments for Alyssa.

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

RSV and Trisomy

Good news.. the RSV drug (synagist) was approved, the appeal worked! So it's covered 100%. Yeah! We do have a secondary insurance for Alyssa but there were problems in coordinating the benefits. It seems that all has been corrected and this should decrease some of our concerns. To my understanding Synagist is given in a seris of 5 shots each about 3,000,00 or 15,00.00 total! Smoking cows, that a costly drug!

Thursday, October 2, 2008


I know I don't often talk about my feeling regarding our family as a whole or my other children individually. I suppose i am focused on sharing this new world of Trisomy 18 and want to document it from a perspective relative to Alyssa.

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.


Alyssa is 78 days old!!

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.