Photos of Post-Birth Assessments & NICU

Verity's Birth Story in Photos

Special thanks to my sweet friend Melissa of Melissa Pennington Photography 

for sharing her artistic talents with our family as a blessing to us...

and to all those who share in the joy of Verity's birth.

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

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.