Saturday, February 06, 2010

Henry Darwin Telford

Born January 28, 2010
4:05pm, 6 lbs. 10.4 oz.
20 inches long

Welcome to Our World,
Baby Boy!

It all started on January 27th, actually, around 7:30 am. I was given the vague impression that my water broke (it wasn't the gushing splash like in movies!) and kept an eye on that all day, with very little other activity. By 10pm, i was calling my doula Bronwyn (awesome gal with an awesome name!) for advice. I felt cramping, but no contractions. I had a doctor's appt. the following morning and despite actually WANTING to go into a more active labor, it never happened. I was put on the ultrasound and it was discovered, by no one's surprise really, that my fluid was at 1cm and it was time to deliver. There was no more waiting for my body to cooperate given that it already had 24 hrs with little progression. So there it was: Prepping for my third c-section. Exactly what i had worked so hard to NOT have. However, given the circumstances, i had my 7 minute hard cry of defeat and went forward. Proceeded to lay in a hospital bed for 6+ hours waiting for my turn. At 3:45 pm, I was rolled outta my room and into the very cold operating room and told to bend forward in the shape of a letter "C" to get my spinal. The anesthesiologist was WONDERFUL. So kind and calm, a warm bedside manner (unlike the dude i got for my first 'emergency' c-s with Sam - he barked at me the whole time. Grumble). By 4:00, Dr. Surosky and his midwife Helen had their hands inside my belly and by 4:05, Henry Darwin was pulled out and shown to me to officially name the sex.

It was at this precise moment that i was shocked by two things. First - the penis. Ron and i never found out the sex (of any of our boys, btw), and so somehow i had decided that the baby inside of me was a girl. I never had dreams, premonitions, what have you. Because i had been going in for low-fluid monitoring twice a week for the last 5 weeks, I had decided that it had to be a girl because Sam and Thom never gave me any 'grief.'

So there was a penis and i believe my first words before "It's a boy" were "Are you KIDDING ME?" All said lovingly, of course. Ron and i were always fine with it being either a boy or a girl, but the more Ron and Sam 'ganged up' on Mommy with fart jokes and secret Men-Only high fives over whispered secrets, i had decided a girl on my side would be pretty good. Oh well.

The second shock was Henry's face. He was born with a bilateral cleft lip and palate (or "double" cleft lip/palate). We had no idea of this beforehand and the reason we could not see it on the MULTIPLE ultrasounds i was having was specifically due to my low fluid - i never did get a clear ultrasound of Henry in utero. The one blurry image we did get looks like Henry's hand near his cheek; in retrospect, i believe that is the cleft l/p we are looking at. Immediately following his birth, Ron and i were assured by everyone, and i mean EVERYONE, that Henry's face is purely a routine cosmetic surgery, that cleft l/p are the number 1 birth defect in babies (1 in 700) and blah blah blah IT CAN BE FIXED, so no worries. I have found a very encouraging before and after surgical picture online as a reference. The before picture, as you'll notice, looks just like Henry. I find images like this helpful and optimistic in picturing my little boy down the road...

I was probably the most aware of my c-section this third time around than any other. I find it interesting all the different phases my body went through during and after surgery. I was so hoping to write about my first 'natural birth' experience, but again - bygones. First there's the spinal, and an overwhelming numbness that overtakes my entire lower half. But what's weirdest about that is when I'm laying there, immediately post-surgery, and i reach down with my arms, which are not numb, and touch my belly and legs... it feels like a cadaver. It's the oddest sensation to reach down and touch your own body to have it feel entirely disconnected from yourself. Following that is intense itching, mostly on the face, due to the Morphine. The scratching never really ceased for 24 hours, so i was left with a face that appeared and felt chapped and sunburnt and which actually peeled a day after that. I also experienced chills, sweats, nausea and of course general discomfort to my mid-region. While Dr. Surosky was stitching me up, he mentioned that my uterine scar was paper-thin, and so trying to deliver naturally would have ended in an emergency for both mother and baby. He also "tied my tubes," so that is the end of my baby-makin' days. I'm okay with this. Three's a charm.

Some routine tests were performed on Henry. Whenever they see a cleft lip/palate, they immediately look to the heart. I like to call it a "Flow Chart" decision. If X happens, Y then is investigated. A heart murmur was detected and further testing was ordered. By the next morning at 8am, a pediatrician entered my room looking very somber. Ron was home with the boys. The doctor informed me that a very serious heart defect had been detected in Henry and even further testing was needed, but beyond that, the condition of this defect required IMMEDIATE emergent attention, which all meant going somewhere other than Arnot for care.

I felt numb to this information. You know how in movies or books, situations like these are sometimes rendered in slow-motion? Well now i know why. While i was listening to the doctor explain their findings, i was processing everything at a fraction of a second slower. I remember spacing at one point and thinking i needed to have Ron there with me. On top of this, I just had a stern talking with myself about my feelings over Henry's cleft lip/palate. I admit, as Henry's mother, that i was not comfortable with the way he looked and was finding it difficult to embrace him. I was unable to breastfeed him and had very little physical interaction with him up to this point. I didn't know how to feel. A bunch of thoughts flew through my head: First, no VBAC. Fine. Second, the cleft lip/palate. Okay - totally cosmetic and fixable. And now a serious heart condition. I remember thinking "What's next? How many other things are they going to find now?"

A very wonderful, calming pediatric cardiologist in the area, Dr. Thomas Finnerty, came to speak to us at bedside at Arnot. He explained in very understandable terms what was going on with Henry's heart and drew a diagram. His condition is called Double Outlet Right Ventricle. Copied directly from Google Health: DORV is a congenital heart disease in which the aorta rises from the right ventricle (the chamber of the heart that pumps blood to the lungs), instead of from the left ventricle (the normal pumpng chamber to the body). Both the pulmonary artery (which carries oxygen-poor blood to the lungs) and aorta (which carries oxygen-rich blood from the heart to the body) come from the same pumping chamber. No arteries arise from the left ventricle (the normal pumping chamber to the body). As a result, Henry's heart has compensated for this flaw in creating a 'hole' (or a ventricular septal defect (VSD)) - again from Google Health: The presence of a VSD helps the infant with DORV, because oxygen-rich blood from the lungs flows from the left side of the heart, through the VSD opening and into the right chamber, mixing with the oxygen-poor blood. However, the body may still not get enough oxygen even with this mixture, and the heart has to work harder to try to bring more oxygen-rich blood to the body. Again, as a result, Henry is very lethargic and his heart rate tends to be higher than other babies. Also, his lungs are working harder, so his breathing is elevated. The simple act of feeding is very taxing for Henry. This is why he's been on a continuous feed through a tube into his stomach. It's just today that they are starting "Bolis" feeds, which means they feed him a certain amount at a certain time instead of continuously. They've also been using a special nipple/bottle, which he takes to quite well given the condition of his lip/palate, but because it is so energy-draining for him, they limit these feedings to 15 or so minutes. Poor lil bugger.

I've jumped ahead, but to back-track - Dr. Finnerty's diagnosis, paired with the NICU (neonatal intensive care unit) doctor's further findings, all led to the decision to send Henry to CHOP, or Children's Hospital of Philadelphia. It is the best in the country and is especially noted for their NICU and CICU (cardiac intensive care unit), which is where Henry was sent. To recap: within 8 hours of birth, Henry was transferred from the regular nursery at Arnot to their NICU, and within 26 hours of birth, was being medivac'd by airplane from Elmira to Philadelphia. These occurances are the definition of 'driving on auto-pilot.' We were surrounded by professional health care providers who diagnosed Henry's condition, suggested the best hospital to send him to, and we nodded, in trust. No one ever expects to be presented with such dire decisions to be made, and one certainly never PREPARES for them, and here we were, in that boat. I grew especially fond of Dr. Finnerty in the minutes he spent with us, dealing us the news he never likes to give... You know how you just KNOW about someone? He is that sort of person to me. I just KNOW that he's a man to trust.

So now we are in Philly. Henry is a week old. Only a week. This past week has been a whirlwind, to say the least. I've not had the recovery time in the hospital that i said i would milk (no pun intended) *IF* i ended up with a third c-s, which i was confident i would not. I chose to spend the night in the hospital the evening that Henry was sent to Philly. The following morning, i was discharged, sent with a couple Rx's, and went home to pack for Philly, unsure of how long we would be here. We still don't really know, but i'm guessing it will be another week, possibly two, but not MONTHS. The social worker for Arnot was emmensely helpful in guiding us to where to go in Philly. She strongly recommended the Ronald McDonald House and gave us phone numbers and contact names. This is where we are staying and the accommodations are amazing! This place is a little gem tucked into a busy street block in downtown Philly. I had always only heard about RMH, but now that I am partaking of their services, i will contribute to their purpose for the rest of our lives. For only $15 a night, we are able to stay here indefinitely, in a room with 2 double beds, access to a fully stocked kitchen area, large dining room, dinner provided every night, bfast on weekends, computer access, endless game rooms and kid-friendly areas, a shuttle to/from the hospital 6 times a day... Honestly, i've said to Ron a few times... i cannot imagine being in a better place given our specific situation. Sam's made all sorts of friends and hates leaving the play areas. Sam has not been able to see Henry yet, but we're hoping to change that within the next few days. He's getting over a cold/cough/runny nose thing that is not at all conducive to the CICU... but soon, he'll meet his little brother. He's already very fond of talking about him and picked out a smaller version of "Eric the Elephant" to put in Henry's bed.

Let me also take this moment to tuck in here the extreme generosity and care coming from our Wegmans family. Ron and i are humbled beyond belief - special care was given to us concerning Ron's missing work, as well as a generous and helpful gift card. Everyone there embraces us and it is precisely in times like this that i am reminded of how nice we have it there. No one in management even blinks an eye with our having to be out indefinitely or the unknowing nature of our situation. All we have received are warm hugs (physically and metaphorically) and many extending hands of help. Three of my friends have even planned a road trip FOR THE DAY (5 hrs one way) this coming Wednesday to be with me and meet Henry. I think they are trying to get me to cry as much as they can! You've succeeded ladies... now that's enough. :-)

We've had various meetings with various specialists, all with varying news. At the beginning, there was suspect calcifications on the brain that caused us to be concerned. The neurologist met with me one evening at the hospital and informed me that the MRI done concluded no abnormalities of the brain. I was ELATED. I knew issues with the brain could not be good news. Ron and i were SO HAPPY.

But the next day, we had a meeting with Genetics. I knew this meeting might be life-altering. I had a feeling in my gut that Genetics might find something because the nugget had been placed in my mind by the doctor at Arnot that when you have several large defects, you can then look to genetics to play a factor. The cleft l/p, the heart...

Sure enough, the meeting with Genetics did, indeed, turn out to be life-altering. Those 45 minutes were the biggest news thus far. All of a sudden, i could cross the cosmetic repair of the cleft lip/palate off my list of concerns. So thoroughly superficial with this new discovery...

Genetics found that Henry has a rare genetics syndrome called "Chromosome 4 q deletion." In relatively layman's terms, that means that there is a deletion of the long arm of chromosome 4. It's simply missing and this happens at the time of very early embryonic development; it is nothing we could have prevented. I believe the biggest factor in this happening is my age, as often occurs in other genetic abnormalities. Some known effects of this disorder are of course the cleft lip/palate, cardiac issues, a disfigured 5th digit (in Henry's case, it is his right pinky), autism, slow motor and language development, deafness, dental issues, stunted physical growth and a few others. In no way are ALL these factors, but each child varies greatly, as well as with their level of severity. We won't know any of this for some time...

So where are we now? Well... Henry is going to need heart surgery, without any doubt. It's a matter of WHEN and that is being monitored. The longer he can wait, the better. The immediate plan, which i imagine could change, is to send Henry home with us for a period of time until he needs the surgery, and then we'll return. Right now there is talk on whether or not he will need open-chest surgery to insert a band around his pulmonary artery or not, limiting the flow of blood to his lungs so that his lungs do not get compromised before surgery. This has not been decided yet. Its also not decided on whether or not we would go home with a feeding tube in Henry. I'm going to guess YES on that, given the taxing nature of feeding. Which means we will need to go to a class to learn how to do that. He can always have the feeding tube turned off for manual feedings now and then.

Our lives are 'day to day' as they say. I'm fully aware of having good days and bad. I'm also fully embracing the acceptance of Ron and I being "allowed" to feel whatever it is we feel when we feel it. We've certainly had our moments and there are plenty more to come. I keep forgetting that i am a bit post-partum, so one day I'll be doing great and feeling very positive and open to learning, and the next, like today, i feel very blue and down and empty. I tend to get 'whiny' in wanting what i can't have. Things like a baby nursing on my chest. Having a day to sleep and recouperate and not walk around anywhere. A day where I am not sitting in front of specialists being given news that will alter my life. BUT AT THE SAME TIME, i am learning to already embrace Henry for his uniqueness. When i see him now, i want to hold him and kiss his soft little head and stroke his cheeks and pick out the crusties from his little open mouth. Ron and i looked at each other today and mentioned how perfect his name is for him.

Henry. Darwin. It's simply perfect.

We love you, Sweetheart. You will be the gem of our life, along with Samson and Thomas. Welcome to the craziness and abundant love that is "Family Telford."


  1. Amazing. I know there will be ups and downs ahead, but I know this too--Mr. Henry is so lucky to have you for his mommy. Thanks for sharing!

  2. It is so good to hear all this, Chris. It is wonderful that there is so much support; I think everyone needs a little extra right now. I wish I could be there to hold little Henry and sing to him with you guys. He is very, very lucky to be part of Family Telford. Sending all my love!

  3. Thank you for your update. It is beautifully written. We continue to pray for and cheer for your family.

  4. Chris you have done it again. The waiting was worth this. You have such a way to tell the story so that we feel like we've experienced it with you. Henry is beautiful. I know the cleft l/p is visually jolting however, look beyond that and you can see all the love he was made with. I know that he is in the best care, yours and God's. I am so looking forward to the three Telford boys future as I know you are. Love you girl

  5. Amazing update Chris. I think about you guys daily and send my prayers.
    Both of my cousins (sisters at that) had children with birth "defects" (I hate that word) Adam was born with spina bifida and they didn't think he would survive. He is now 18 and the captain of the US paraplegic hockey team. Derek was born with a disease (can't think of the name) and from 6 weeks until about 2years he had to be on a ventilator. But today he is a thriving teenager. Be strong, cry when you need to, rely on family and friends and be sure to take care of you as well!

  6. Thank you for sharing your story with us. It was both heart-breaking and heart-warming at the same time. I know how it feels to have expectations and hopes going into delivery, but I can't imagine how it feels to have those expectations so totally altered by reality. You are a strong woman and a wonderful mother. I know you and Ron and Sam and Thom have a bumpy road ahead, but stick together as a family, and you'll be able to handle it all together. Hugs and prayers!!

  7. Just to let you know that I am here thinking of all of you and praying that all will be well with little Henry. God is good.


  8. Chris and Ron, your strength and tenacity never cease to amaze me. If Henry has a fraction of your fighting spirit he will grow and mature in leaps and bounds. Also knowing that you will have 2 boys (Sam and Thom) that will be raised with the knowledge and acceptance of ALL people no matter their differences is very heart warming. Your caring and thoughtful introspective (?) thought is inspiring. Please keep me in mind for any fundraising opportunities or planning to raise money not only for this particular genetic disorder, but for the Ronald McDonald House. Thinking of you all. Susan

  9. Jeff, Benjamin and I are thinking of you and your family. Henry is lucky to have wonderful parents like you all!

  10. Chris-Thanks for letting us know what is happening with you and your family. I had so many questions, and you have given us all such a simple and loving explanation. Can't wait to see you and Henry Wednesday!! If there is ANYTHING at all that we can bring you, please let us know.

  11. My prayers and love go out to all of you. God knew what he was doing when He chose you for parents of little Henry. God bless all of you.

  12. Congratulations on your new bundle of joy and thanks for sharing your story... Knowing a bit of the Telford geneology, Henry comes from some tough stock and will be a fighter for a long time! Continued prayers for strength, healing, and lots of good-news- days to you all. Hugs from the Craigs in Candor.