Our Baby Will Be Different

After our T18 diagnosis, I wrote some text that I planned to read to our younger children to help them better understand and prepare for some things about Verity that would be different. I sent the text to a friend of ours, Adam Turner, who is a very gifted freelance artist to see if by chance he would be able to put together some sketches for me. He heartily agreed; however, he got very, very ill over the holidays with a severe virus that wiped him out for over a month. I didn't want to bother him, assuming he would have his own work piling up, and simply printed off my own pages and put together a little card stock booklet to read to my kiddos.

Well. The very day that Verity was born, a package arrived on our doorstep, quickly intercepted by our 16yo daughter who had received word from Adam that something was in the mail for us. Two mornings later, as we gathered our family together for a photo session, our daughter presented us with two copies (out of a total of 25) from this box that Adam ordered to be sent to us. It's my book!! I promptly burst into tears...good thing I hadn't put on my mascara for the day!

With the extra copies, I am so excited to be able to bless other families who are going through a similar journey to ours: finding themselves expecting a baby who will be "different" and trying to explain and prepare older siblings.

I offered to mail free copies while supplies lasted to families in the Trisomy Parent group, and the response has been so heartwarming. Almost all of our extra copies are spoken for, with a clamor for a "boy version" of the book--ours, of course, uses female pronouns since we knew Verity was a girl. I've contacted Adam to see if we can make this happen. I even received an offer from one of the moms to translate the text into Spanish!

As was mentioned several times, the available literature for families in these situations is extremely limited. Would you join me in praying about getting this published on a wider scale so we can bless and encourage even more families?

Assessments

RESPIRATORY SUPPORT
After Verity was born, of course the next thing to determine was what exactly her immediate needs were and what could be determined about her future needs. Clearly she had to have respiratory support, but we were thrilled when the CPAP and mask were removed within the first 24 hours and she moved to room oxygen through a nasal cannula. Even more astonishing was seeing her come off oxygen altogether on Day 5 and having her do so well; we are now on Day 6 and she hasn't had to go back on it!

Apnea is a huge issue with Trisomy babies. I asked the doctor about an apnea study, and she said they rarely do actual studies, but the monitors themselves are apnea studies--and nothing in all of Verity's monitoring has indicated any problems with apnea. I am encouraged every time I look at her monitors and see such regularity--perfect little heartbeat, high oxygen sats, rhythmic breathing...this changes when she's mad, lol, but even hearing her lusty cries makes me smile instead of panic. The nurses all know when Verity needs attention!!

FEEDINGS
Next: feedings. We figured she would need help eating, as almost all Trisomy babies do. She got an IV right away, followed by gavage feedings (through a tube, first in her mouth and later through her nostril--she did NOT like THAT process!). We were given a bottle of donor milk for her use, but after that was finished (a few days in), we did have to start using formula to supplement my own supply. But thankfully it shouldn't take too long before she is solely getting her nourishment from my breastmilk. The IV supplements stopped on day 2, and as with the oxygen, she didn't go back! Feeding amounts have steadily increased, and she has tolerated it all very well. She has no problems eliminating and really, really hates pooping and being in a dirty diaper! She lets us know when she's having a BM and clearly expects us to do something about it!

The last couple of days we have seen her respond to the breast, enough that my nurse today would really like to help us move toward breastfeeding first with gavage feedings afterward. I am hopeful but find it hard to be as optimistic as she is...still, Verity has defied all kinds of odds so far, so who knows?! She has latched and sucked several times during several different attempts, so while we haven't had any sustained suck-and-swallow action, all indicators are there that she CAN do this. (And for the record, she loves sucking on a pacifier!)

We have not done an official swallow evaluation; things look good, but I plan to ask if there are other more official things we can do in this area to give us the best possible chance of successful feedings.

BRAIN SCAN
We had requested in our birth plan to have a brain scan done, and that was in fact accomplished right away. Everything looked fantastic!

HEART ISSUES
We had also requested an echocardiogram, even though careful examination of her heart during the prime viewing period of my pregnancy indicated that she had no heart issues. It wasn't terribly surprising but was still rather discouraging to learn that there are, in fact, heart issues. Verity has 3 VSDs, basically 3 holes in her heart. Two of them are small and may very well resolve on their own; they are not concerning. The third, however, will require surgery before she turns one year old. This is very, very common for our Trisomy babies, and the fact that Verity has already proven to be a strong, healthy little girl bodes well for her surviving surgery. We were extremely encouraged when her heart did not show signs of distress when her oxygen was removed. While surgery isn't something in the immediate future, it could very well be a procedure that needs to happen before the military moves us in July. We would appreciate prayers for guidance in this area and that we get matched with the right team of specialists. We will be meeting with cardiologists tomorrow; so far we have only discussed this with Verity's NICU doctor (whom I absolutely ADORE) and the geneticist.

GENETICS
All of Verity's positive (and fast) progress is making us wonder if perhaps the amnio results gave us an incorrect diagnosis: perhaps, instead of full Trisomy 18, Verity may actually be partial or mosaic Trisomy 18. It is worth investigating, and if our insurance would pay for it, we would like to have her tested simply because it would help us adjust our expectations and allow us to do more research and investigating since we have focused our efforts on learning about FT18 and haven't read as much about PT18 or mosaic. Here are the differences according to www.Trisomy18.org:

Types of Trisomy 18:

• Full Trisomy 18: The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby’s body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.
• Partial Trisomy 18: Partial trisomies are very rare.  They occur when only part of an extra chromosome is present. Some partial Trisomy 18 syndromes may be caused by hereditary factors. Very rarely, a piece of chromosome 18 becomes attached to another chromosome before or after conception. Affected people have two copies of chromosome 18, plus a “partial” piece of extra material from chromosome 18.
• Mosaic Trisomy 18: Mosaic trisomy is also very rare. It occurs when the extra chromosome is present in some (but not all) of the cells of the body.  Like full Trisomy 18, mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division.

Regardless of whether Verity has full, partial, or mosaic Trisomy 18, as you can tell, we are all pretty smitten!! We love that so many people around the world are praying for Verity. I hope you will do some searching to find other Trisomy families and read about their stories as well. Many of them have become friends of ours during this journey, and I am in awe of each precious life as well as the support and love shown through parents, siblings, and the villages rallying around these precious gifts.

Verity's Arrival

February 27 (big sister Kenna's 10th birthday) passed fairly uneventfully...aside from the fact that I had contractions pretty much all day long! Since this had become more common in the previous week or two, I wasn't sure what to make of it, although the contractions were definitely noticeable and more uncomfortable. Many people had prayed on Kenna's behalf that she would not have to share her birthday (she herself was adamant about this), and while I was fairly sure the Lord would grant this request, I did wonder, especially as the evening got underway and it got harder and harder to rest!

Our attempt at a normal bedtime was short-lived. Ted got maybe an hour and a half of sleep before I woke him up and asked him to please wake the girls and Grandma. Our photographer prepared to meet us at the hospital, and I finished packing. (I must say, in retrospect, I did a rather horrible job of packing this time! Ah, well, the important things were included...who needs shampoo anyway?!)

Kenna has no recollection of the two separate conversations she had with her dad about us leaving for the hospital...so...she did not attend Verity's birth after all. Charis, Rhonda, Ted, and I prayed together in the kitchen before we left the house, with Grandma staying behind to hold down the fort. Tobin had awakened during the commotion and hugged us goodbye, but no one else knew we were leaving.

We arrived at the L&D ward at 1am. I was so nervous that we would find out this was a false alarm after all--despite having some pretty painful contractions at home, hardly anything happened during the drive, and the contractions I did have after leaving the house were really not very intense. But I had felt it was time to go, even though there didn't seem to be a clear sign like I had prayed for. Turns out the mama instinct was correct; I was dilated 6cm when we arrived, with my water bag bulging out but still intact.

It was so surreal actually being in labor after waiting and wondering for what seemed like an eternity. The fact that it happened in the middle of the night only added to the dream-like quality of the whole experience. Still, I appreciated the calm and the quiet: peace. Overwhelming peace.

As per my birth plan, we requested an epidural so that in case something happened and Verity ended up in distress, I would be alert for an emergency C-section. We waited what seemed like a very long time for the epidural; it may have been around 2:30am or even 3:00 before it was in. I was afraid that things would progress too fast and it would get to be too late to get one! Thankfully the contractions were so minimally uncomfortable; honestly, it was the easiest labor I've had, other than I was just so tired from being awake all day.

After the epidural was in place, my contractions seemed to slow down. In fact, Ted had time to take a little nap in the rocking chair! It seemed strange to feel so good during labor! The epidural helped, to be sure, but the contractions hadn't been unbearable even before that. The main annoyance, if you will, was that my body would shake uncontrollably during each contraction, even though I wasn't yet transitioning. During this lull, I enjoyed visiting with my nurse and my photographer friend (herself a homeschooling mama of seven beautiful kiddos). Charis calmly worked on a crocheting project. The nurse mentioned that they were wanting to start pitocin, but I asked if we could first break my waters since that has often led to a speedy delivery in the past. Everyone agreed, and so that was the plan of action.

One of the blessings and answers to my prayers for Verity's delivery was that my favorite doctor, Dr. T who had been so proactive on our behalf, was on duty that night. Along with two residents, he was there during the last hour leading up to Verity's delivery. When he checked Verity's position, all of a sudden I felt as if we had entered a twilight zone: no longer was Verity head down, after weeks and weeks of always presenting herself in that position. We all agreed that a vaginal breech delivery was entirely possible; however, a quick ultrasound confirmed that she was actually transverse. Before I could blink, I was being tilted backward with MY head down! And hands were maneuvering my belly as the doctors worked to manually flip Verity into position. My sweet nurse reminded me that God was with us there, which snapped me back to reality a bit, and I began quoting Scripture aloud, any passage that came to mind, hearing her at my shoulder agreeing with my words, which were whispered prayers to keep me from panicking. [I'll list the passages at the end of this post--at least the ones I remember murmuring at the time--in case anyone is interested in reading them. :-) ]

The maneuvering worked, and Dr. T continued with his hands planted firmly on my abdomen to prevent Verity from moving again while my waters were broken. At this point I was at 8 cm, not completely dilated as was originally thought; the bag had bulged through and stretched the cervix to make it seem like I was complete. Verity's station was still fairly high, so we needed some contractions to bring her down and finish dilation. But contractions had pretty much stopped. So they upped my pitocin and sat me more upright to make use of gravity.

For a few minutes, nothing happened, so the doctors stepped out of the room to check on another laboring woman, and after another few minutes, my nurse decided to step out as well, telling me to ring if anything happened. No sooner had she left the room when I felt an enormous wave of a contraction with immediate pressure, so I rang that bell and she hurried back inside! We were ready to have a baby!

Easiest delivery ever from that point on: I pushed carefully a little at a time and there she was, all beautiful and dark-haired and perfect. I got to cuddle her on my chest for a few precious minutes while time stood still and I wept tears of joy unlike any I've shed over my other babies--and I've cried at seeing each precious face, because the miracle of life is something we never get over, nor should we. I watched Ted cut the cord and regretfully agreed after a short while that she needed to go; even love-filled eyes couldn't deny seeing that she was turning gray.

The NICU team was wonderful, and Ted, Charis, and Melissa (our photographer) accompanied Verity from that point. Perhaps I'll ask Charis to write a post about what happened from that point, because my experience was pretty generic post-partum, and who wants to read about that! Verity is the star of this story! But for my mama friends who care about such things, the only difficulty my body had in the aftermath of this particular birth is that my lower abdomen muscles ached in a different way than I've ever felt before, and this puzzled me until the doc reminded me the next morning, "Well, we did turn your baby!" Oh, yes! That did require quite a bit of activity that I wasn't used to, lol.

So, that is the story of Verity Irene's birth, fittingly occurring the same day as the Rare Disease Day that was happening on Capitol Hill.

Welcome, Verity Irene...

Born February 28, 2017, 04:05am

40 weeks, 3 days

5 pounds, 3 ounces, 18 inches long

My labor & delivery verses...in a variety of versions used in my memory efforts over the years:

I love you, O Lord, my strength.
 The Lord is my rock and my fortress and my deliverer,
    my God, my rock, in whom I take refuge,
    my shield, and the horn of my salvation, my stronghold.
 I call upon the Lord, who is worthy to be praised,
    and I am saved from my enemies.
Psalm 18:1-3, ESV

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10, NIV

Fear not, for I have redeemed thee; I have called thee by thy name, thou art mine. When thou passest through the waters, I will be with thee, and through the rivers, they shall not overflow thee, when thou passest through the fire, thou shall not be burned, neither shall the flame kindle upon thee, for I am the Lord thy God, the Holy One. Isaiah 43:1-3, KJV

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18, NIV

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12:1-3, NIV

The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.
Psalm 23, KJV

Knowledge Is Power: Trisomy Resources

In the Trisomy parents' Facebook group I've been involved with since our diagnosis with Verity, I frequently see posts from new members who are either awaiting test results or who have just received confirmation of a rare diagnosis. Oh, how I identify with the precious mom or dad's feelings of being confused and overwhelmed! I know my first couple of posts filled with questions probably sounded very similar. How grateful I was for the members who swiftly responded, answering questions as best as they could and sharing pictures and stories of their children.

Recently my heart was so moved by one of these "newbie" posts, and as I left my own comment, I couldn't help but feel grateful at how far we have come in the 5 months since learning what exactly Edwards Syndrome/Trisomy 18 is. I gave advice that I wish I had known in the beginning: while waiting for test results, resist the urge to GOOGLE!! Instead, if one simply MUST research, direct those efforts toward searching out those who actually live and work with Trisomy babies/children. For those parents with a diagnosis, there are Facebook groups available that are much more current and interactive than, for example, this Trisomy 18 support group I found initially. This forum is not a bad resource by any means, but it did not contain the wealth of contacts and ease of accessibility as the private FB group that I later found through a new friend's help. (I do still visit it from time to time; new posts are few and far between, but I've been able to encourage some folks by dropping in now and then and sharing a bit of our experience).

Many of the parents whom I've met through this journey have their own Facebook pages available for the public to follow. Quite a few of these precious little ones have their own fan clubs cheering them on and praying for them each time they hit a new obstacle. It's really a wonderful thing to share stories and help educate others about this particular special needs community. Here are some examples of pages (shared with permission because they are open to educating others):

Team Benjamin: A Celebration of Life with EA & Trisomy 18
Adventures with Annalea
Remembering Noelle Faith
Diary of an Almost Father
Danny's Miraculous Trisomy 18 Adventure
For the Love of Lillian: A Trisomy 18 Adventure
Addilyn's Odyssey, a Trisomy 18 Journey
Jonah's Journey with Trisomy 18
Adventures with Addalyn and Trisomy 18 (This one is private but Mom says she approves "non-crazy" people, lol!)
The Joy Gabriel Brings
Celebrating Nate

There are many, many more, and I'm sure a search on Facebook could easily lead you to others. (Also, if you "like" one of these public pages, FB will helpfully recommend similar pages for you.) My point here is to help educate and equip people to turn around and educate others who find themselves on a journey similar to ours. When a parent receives word of an "abnormal" diagnosis, fear is crippling. Even the RISK of a positive test result incites fear and uncertainty. But knowledge is power. At the same time, there is a lot of JUNK out there on the internet (and I'm not even talking about politics, lol), and if people find what they think are "answers" in places that really don't have current information, they can make poor decisions that they may very well regret the rest of their lives.

So, if you find yourself listening to a friend sobbing on the telephone or answering a slew of emotional texts from someone who has gotten That Dreaded Phone Call from The Doctor, my advice is to listen, pray with your friend, and then give hope and encouragement. No matter what the diagnosis, there IS support. There IS accurate information...as well as inaccurate. Help your friend find the resources needed to navigate the journey ahead with full awareness.

More specific resources for families expecting Trisomy babies:

Hope for Trisomy web site
Trisomy Angels Memorial Website
Support Organization for Trisomy 18, 13 and Related Disorders
TRIS (Tracking Rare Incidence Syndomes)
ITA (International Trisomy Alliance)

Hope for the Best, Prepare for the Worst

HOPE. It's a word I've seen over and over during this journey with Verity and her diagnosis. Edwards Syndrome, a condition I had never even heard of before autumn hit, has become an all-too-close reality over these past months. It has been exactly 5 months since I picked up the phone and stood in shock listening to a doctor tell me about Trisomy 18 while assuring me that my risk factor was "only 1 in 10" but that she recommended further diagnostic analysis.

In those 5 months, we have learned so very much. We have become connected with families whose lives revolve around this rare condition as they sacrificially love the precious little ones who have been entrusted to them. Five months: for some of these dear families, little ones have been born, lived, and died within that span of time. Some are even now fighting for their lives in hospitals. Some didn't make it to term but were born with dignity, cherished, photographed, and are still loved and missed.

When a new member joins the Rare Trisomy Parents Facebook page, the introductory message is often filled with fear--a family is awaiting testing results and has heard their child might have a rare trisomy condition, or they have just received a confirming diagnosis and are terrified of what the future will hold. It is a beautiful thing to watch comment after comment appear on the thread, with photos of beautiful children of various ages being posted along with words of encouragement and HOPE.

"There is always hope." 
"Never give up hope." 
"Hope for the best."

Hoping for the best undoubtedly looks different for each person, each family represented. Part of our own personal struggle during this journey is discerning what, exactly, ARE we hoping for?? In the beginning, it seemed enough to hope that Verity would be born alive and everyone in our family would get to meet and hold her. The more we learned and interacted with families who are raising living T18 children, the more we began to adjust our expectations: with no significant anomalies showing on ultrasounds, Verity certainly seems to have higher-than-usual chances of doing well after birth. And I've read and seen so much that has led me to prepare to be the mother to a special-needs child who will be with us "long-term." (Even T18 babies who do well only have approximately a 5-10% chance of reaching their first birthday; still, there are a number who are living well beyond the one-year mark.)

Our hopes, our expectations, swung from fairly dire on one side of the spectrum (we hope to meet Verity alive before we have to bury her) to the other extreme of the realm of possibility (we hope she will need minimal interventions and proves to be the exception to the Edwards Syndrome "rules").

The problem with emotions is that they don't stay in a box. Three weeks ago joy surged in my heart as I anticipated giving birth to Verity. Whatever happens, I know God is writing this story, and I desire to focus on HIM instead of ME. Our number one prayer from the beginning has been that God will fulfill HIS purposes for and through Verity. Thank the Lord for His steadfastness and for facts that don't change with our feelings...

A few nights ago when I was having regular (painful) contractions, I got up in the night to sip water and read over recent posts in the Trisomy parent group. The picture of a beautiful infant girl caught my eye, and I wept as I read her mama's announcement that this sweet baby was born February 16 at 42 weeks, weighing 6 pounds, 4 ounces, and lived exactly 48 hours before being taken to heaven.

It hit me like a tidal wave: Verity is already a full-term baby and looking to be a relatively healthy weight. I've been making assumptions I have no right to make. I sobbed. I begged God, Please...let my parents get here in time to hold Verity. The truth is, I really have NO IDEA what will happen once our daughter is born. I can't take anything for granted. God doesn't owe me a thing--rather the contrary! He gave His only Son, Jesus, as a sacrifice for my sin, the only sacrifice that would satisfy the requirements for atonement. Mercy triumphs over judgment because of God's incredible love for each person He has made...

...including medically fragile Verity...
...including her emotionally fragile mother.

I was a weepy mess that night. I went back to bed when the contractions subsided, hoping to get a bit of sleep, and I found myself in a dialogue with God. I'm not necessarily a "sign reader," seeing "omens" or whatnot in any and every circumstance, but it seemed that in the span of a few short days, gentle reminders were coming at me from all directions with a common theme of not taking anything for granted, that pain and loss and death are inevitable during our time on earth, that God's glory is displayed in our weakness, and that His purposes are loving, good, and eternal.

Whatever happens...whether it is the "best" or the "worst"...I believe God has been preparing us for it. I believe there is purpose in all of this and that Verity is (and will continue to be) bringing people into a closer relationship with Jesus. Her life AND her death will glorify her Creator.

We have almost come to the end of this pregnancy journey, and I'm reminded of the Scripture passage we included on our Verity photo cards that we have given out to so many people over the past few months:

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in HOPE of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces HOPE, and HOPE does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:1-5

This hope is not an "I hope something good will happen" kind of a hope! No, the hope Jesus gives is the assurance that what God has promised is indeed truth. We named Verity to remind us and to share with others the TRUTH.

Have you been justified by faith?
Do you have peace with God through Jesus Christ?
Have you received grace?
Do you rejoice in having assurance of an eternity in heaven?

If so, then you can rejoice in any suffering you may be experiencing--even if, like me, you are weeping from time to time because of it.

If not, then know that you are in my prayers. We often pray for loved ones who haven't yet accepted or acknowledged that Jesus Christ is THE way, the truth, and the life and that no one comes to God except through Him (John 14:6). Verity's diagnosis 5 months ago caused us to specifically be praying that God would draw people to Himself through our baby girl and the journey our family has been given with her. Please know that Ted or I would love to talk with you if you have any questions about any of this!

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love. 1 John 4:18

Today's Appointment

Time flies when you see the OB weekly! It was a fairly quick visit, so I'll keep this post brief:

• I may have actually lost weight this week...but maybe that's because they took my potty sample before putting me on the scale, lol! Seriously, I have not even been tracking my weight this pregnancy. There are enough other things to be concerned about!
• My blood pressure continues to be stellar. 
• Verity's current favorite song: "Just Keep Swimming, Just Keep Swimming!" Clearly she is doing well.
• I'm 39 weeks, 3 days, dilated a whopping one centimeter with no other signs of imminent labor. 
• No one is at all concerned about discussing induction (unless I were to be in favor of that, which is a big fat negative). This makes me very happy.
• We scheduled another ultrasound for next Tuesday. Hooray!
• If the ultrasound shows that Verity is still tracking upward growth-wise, we will leave well enough alone. If for some reason it looks like she is not doing well, then of course we will discuss what needs to happen next.
• Typically the docs would begin encouraging inducing around 41 weeks, but they are fine with allowing us to get to 42 weeks (again, assuming Verity is doing well in utero). 

I'm pleased with knowing the doctors are on board with allowing us to do what we feel is best. I'm also fairly relieved that my body, despite having lots of contractions on a fairly regular basis, does not seem to be in a big hurry to deliver Verity, at least as far as is possible for us to determine. We have some loosely-held plans for this weekend (including my 3 teens attending a Christian youth rally and celebrating my daughter's 10th birthday with her friends), so it would be nice to get past the weekend! 

Kenna's actual birthday is February 27, but we ended up having our family celebration last night as a just-in-case. The girls planning to join us for her friend party know that things depend on what is happening with Verity, so we will see!

Verity's Birth Plan

Verity has a raging case of the hiccups tonight, and that plus a few fairly painful contractions served as a wake-up call awhile ago. I am sipping water and trying to decide whether things are going to settle down or pick up...and that has me contemplating the reality that regardless of whether this is IT or not, our baby girl WILL be making her entrance into this world in the very near future! For now, we rejoice in the fact that we have officially made it FULL TERM (39 weeks + 2 days now)!

I was thinking recently that I wanted to post Verity's birth plan on this blog. In all of our 8 children's live births, we have never before written out our thoughts and preferences for a birthing scenario, but this time, a thoughtful, much-prayed-over plan seemed necessary and appropriate. Aside from the text box at the beginning giving the names of our family, photographer, and pastor, the rest of the plan is outlined word for word below. If if can be of help to anyone else, you are welcome to share. I know I drew heavily from some sample birth plans of other Trisomy parents, and I also asked for and received good input from some friends in the nursing field (particularly NICU nurses).

*************

Prenatal Diagnosis: Full Trisomy 18, diagnosed via amniocentesis at 18 weeks

Prenatal Ultrasound Observations:

·         Clenched fists

·         Clubbed feet

·         Delayed physical growth

We believe Verity is a true gift from God: every moment we have had and will have with her is a blessing. Although we have a realistic view of Verity’s diagnosis, we have never stopped praying for her. Additionally, we have done our own research and made contact with other families in recent months. We have learned that FT18, contrary to being “incompatible with life,” is instead a condition that, while certainly dealing with special needs and challenges, does not preclude the child or her family from experiencing the joys of life…no matter how short or long that life may be.

We ask that our baby be referred to by her name, Verity, rather than “baby,” or “fetus,” etc.

We would like to find a comfortable balance between interventions to help her live longer and not creating any extra needed pain or discomfort for her. We would like any interventions to be based on vital signs and Verity’s specific needs, rather than her diagnosis of Trisomy 18.

It is important to us that no one enters the room during or after delivery without being fully aware of our situation and wishes – this includes family and medical staff.

NOTE: We reserve the right to alter this birth plan at any time during this process!

Labor & Delivery:

Pain Relief: no narcotics - epidural only as I wish to stay alert and aware

Vaginal Delivery: I have had 8 previous vaginal deliveries, and so this is the preferred method. However, we would like Verity monitored during labor, and if she shows continued signs of distress we would like a C-section delivery if it means the difference between delivering her alive instead of stillborn. I would like to tentatively plan on getting an epidural immediately after being admitted since we expect Verity to be small and labor may be short. I will do what is necessary to help stabilize her and deliver her alive. I wish to have my husband and photographer present in the room during labor and delivery, and depending on circumstances, my oldest two daughters (Charis and Kenna) may desire to be present—if there is no impending emergency, I fully plan to allow them this opportunity.

C-Section Delivery: If a C-section is needed due to fetal distress and could get Verity out alive, we would like to switch to this option. Please keep my pain management to epidural only as I would like to remain alert and aware. I would like my husband and photographer in the room.

At Birth:

·         We would like Verity immediately placed on my chest after birth.

• We are ok with immediate resuscitation if needed (CPR, oxygen etc…) If intubation is the only thing keeping Verity from living, and its effects will be treatable moving forward, meaning her heart is functioning well and nothing else is causing life-threatening concerns, please proceed with intubation.
• She is to have delayed cord clamping from the umbilical cord for at least two minutes after the placenta has been passed.
• We would like as much skin-to-skin time as possible.
• Any evaluations that need to be done immediately, we ask for as much as possible be done on my chest. Any routine care (suctioning, toweling off, oxygen, eye ointment, vitamin K etc…) can wait as long as possible so we can evaluate Verity’s condition and give her as much skin to skin time as possible.

·         We would like Verity to be evaluated to determine if there are any esophageal abnormalities before attempting feeds. (See also Potential Medical Care section.)

• If Verity is able to nurse, we will try to do so. (I have successfully nursed all 8 of our children but not without a variety of difficulties from time to time.) We understand that Verity may very well need help, whether through a feeding tube or other method than nursing, and we support interventions that will allow her to receive nourishment in the early hours and days after her arrival if she is unable to orally feed either through lack of suckling reflex or any esophageal abnormalities.

Post Delivery:

As parents we would like to follow Verity’s lead during all interventions to find a balance between helping her live longer and not putting pressure or pain on her body that she can’t withstand. We would like Verity’s life supported based on her vital signs and any of her specific defects, NOT based on the Trisomy diagnosis. We would like all possible resuscitation work on Verity to be done in the delivery room OR near the parents. If Verity has to be taken elsewhere for care, Ted will go with her, and I would like to be taken to her as soon as possible.       

We understand that after birth Verity may have more or fewer medical problems than originally anticipated. We ask that all treatment options be discussed with us as parents as you see issues arise. No students or unnecessary staff present, please. Please hold off on all non-life saving tests (weight, measurements, bath, footprints, etc.) until Verity is stabilized. Once stabilized, we would like Verity to receive an ultrasound of her heart and brain to confirm any prenatal defect specifics. We do not approve distress medications, such as morphine, unless further discussed. Verity must be accompanied by a parent at all times.

Potential Medical Care Summary:

                        __ delivery of oxygen through non-invasive measures (blow-by, nasal cannula)

                        __ delivery of oxygen through invasive measures (CPAP, Intubation)

                        __ administration of CPR (chest compressions, ambu bag)

                        __ administration of resuscitation medications (ex: epinephrine)

Feeding: We would like Verity to be fully evaluated to determine if there are any esophageal abnormalities before attempting feeds. Aspiration due to low muscle tone is a concern, and we want to protect her lungs.

            __ swallow evaluation

                        __ IV feedings

                        __ nasal gastric tube placed; feedings initiated

            Post Stabilized Tests:

                        __ head ultrasound to determine any specific defects/abnormalities

                        __ cardiac testing to rule out any missed cardiac abnormalities

                        __ sleep study to check for apnea

            For home care:

                        __ Massimo sat monitor for Verity’s pulse/o2 sats

If Verity is stillborn:

We would like to hold Verity as long as we need, waiting to take any measurements or do any routine procedures. We would like to bathe and dress her and have photographs taken. We would like the opportunity to make hand and footprints and/or molds.

At this point we do not have any information on what happens with Verity should we lose her in the hospital, and we would like to discuss these options with the appropriate party.

Finally, we understand and anticipate that this will be a difficult birth for everyone, including the medical staff providing our care. We greatly appreciate your service and understand we cannot do this without you. Thank you for your commitment to our AND our daughter’s care and well-being.