Well, after spending ten minutes or so crying in bed tonight, I decided to get up and write about our ultrasound appointment today. Warning: it gets very technical, but I wanted to get it all out there. Hopefully you can follow it. For those who hate to read, I've summarized it all at the end.
The ultrasound technician, who specializes in fetal echo cardiograms, spent twenty minutes scanning the baby's heart, recording everything she did to a videotape. She did different views, measured velocities for different arteries, examined the red and blue flows of blood in and around the heart, and told us baby's heart rate (141 bpm, normal).
Since we were still waiting for the pediatric cardiologist, Dr. Rajan, to arrive from Children's Mercy Hospital, she then taped some ultrasound views of the baby for our videotape collection. She printed off three scans for us, two of the baby's profile (right), and one of the face (left). It was hard to do the profile since baby was facing down and away from us.
Then Dr. Rajan arrived. He and the technician spent the next twenty minutes reviewing the entire tape she made for him. Halfway through, Dr. Scott, one of the OBs on the team, arrived to watch. They discussed things that they saw, reassuring us that they would discuss it all with us after they were finished. Then Dr. Rajan took control of the ultrasound machine, and spent another twenty minutes scanning the heart from all sides. He seemed to be pleased with the view he got coming through the baby's back. But he continually dug the wand deep into my belly, and it began to really hurt.
When he was satisfied, he and the technician stepped to one side of the room to quietly go over the findings. Dr. Scott then took control of the wand and indicated he wanted to do more anatomy scanning. He was looking for the organs of the torso cavity. He showed us the diaphragm and after some searching, finally found the baby's stomach below the diaphragm, as it should be. He was pleased that the cavity was properly positioned and told us so. He said everything about the baby, other than the heart, was in good shape and normal.
All told, we were in the ultrasound room for an hour and twenty minutes. As Tim said, the longer it took, the worse we feared the results.
So then Tim and I left the room to wait for Dr. Rajan in the conference room (where we had last met with Dr. Lu). First to arrive was a young woman who was to be our coordinator between St. Luke's (the hospital I would deliver in) and Children's Mercy (the hospital where the heart surgeries would be performed). She explained her role to us, then sat quietly after Dr. Rajan arrived.
The doctor sketched for us what a normal baby's heart would look like (at left), and what our baby's heart looks like (at right). As you can see from the difference, our baby's heart is missing quite a few things, has holes in places it shouldn't, and is missing holes where it needs them. The diagnosis he gave us was no longer hypoplastic left heart syndrome (HLS), which we had previously been told.
First, an explanation of terms and how the heart works: The top two quadrants of the heart are called
atrium and the bottom two are called
ventricle. The
right side of the heart is drawn on the left above, and the
left side is drawn on the right. The "blue" blood, or oxygen depleted blood enters in the right side of the heart, passes through and out to the lungs via the
pulmonary artery, then returns rich with oxygen to the left side of the heart which pumps the "red" blood out via the
aorta. [FYI: Wikipedia is very helpful in understanding the terms mentioned below.]
First, baby has "
AV Canal Defect with Small Left Ventricle." This diagnosis is made up of the four following issues: (a) "primum ASD" which is atrial septal defect, meaning the interatrial septum (the tissue that divides the right and left atria) has a defect. In the diagram above, the portion missing is the one below the normal "hole in the heart" (or foramen ovale). (b) "common AV valve" which means instead of two sets of atrioventricular (AV) valves, there is just one half on the right side and one half on the left side, working together; in our baby's case, most of the valve is committed to the right ventricle. (c) "VSD" which means ventricular septal defect, a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart. (d) "small left ventricle" which, as you can see in the diagram above, is just a tiny area of the heart that is doing nothing.
Second, baby has been diagnosed with "
Double Outlet Right Ventricle." Although not drawn above, the aortic artery does connect to the pulmonary artery, which means both of the great arteries connect to the right ventricle, the definition of DORV.
Third, the diagnosis concludes with "
Pulmonary Valve Atresia." The valve that would normally open and close with each beat of baby's heart has been permanently sealed off. In the diagram above, you see that the pulmonary artery does exist, is attached to the heart, but there is no access to it, as the valve has sealed.
So when baby is born, they will need to keep the "
ductus arteriosis" open, which allows the body to receive some of the oxygenated blood from the lungs. They will give the baby a prostaglandin by IV as soon as the baby is born. (This ductus otherwise closes within the first ten days, it exists to allow the flow of oxygenated blood which baby receives via the placenta instead of the lungs, which of course don't breathe in oxygen while in utero.)
So how do they fix baby's heart? Dr. Rajan showed us three diagrams. In the first week of life, they will perform surgery on the baby. The first operation is called the "
Blalock-Taussig Shunt" or BT shunt. This is a manmade "ductus arteriosis" to allow the mix of red and blue blood, so baby can get at least 50% oxygenated blood through its system. In the diagram on the right, the yellow shunt is the BT shunt. This operation is done through the baby's side, and is not open heart surgery. Baby will require about ten days of recovery time, and another week or so to assist with feeding. So baby will be in the hospital for about three weeks following the surgery.
The second surgery to be performed, when baby is about five or six months old, is the "
Glenn Shunt." What this surgery does is take the
superior vena cava (the artery carrying the blue blood from the top half of the body), which normally returns to the right atrium, and attach it to the pulmonary artery instead, bypassing the heart and going directly to the lungs. This will now help to bring the oxygen level in the bloodstream to about 75%.
The third operation is called the "
Fontan Procedure." In this surgery, the
inferior vena cava (the artery carrying the blue blood from the bottom half of the body) will now be attached to the pulmonary artery. When this procedure is complete, all systemic venous (oxygen depleted) blood flows directly into the pulmonary arteries, completely bypassing what was the right side of the heart. The heart becomes, in effect, a pump simply to take blood from the lungs and pass it to the rest of the body. This surgery might be scheduled any time when the baby is three or four years old, depending on how well he/she is doing. If the baby is suffering from lack of oxygen, the surgery can be performed even sooner.
The doctor said that at any point, things can go wrong. Baby can get fluid build up, infections, or who knows what else. They don't know the long term outlook for this. A child can suffer from heart failure in their teens, or perhaps when they are older. Our child will require cardiatric care for the rest of his or her life.
He asked us to come in again in six weeks for another fetal echo cardiogram. He said they will perform another one of those after baby is born just to confirm the current findings.
After the doctor answered our questions and left the conference room, the coordinator continued to tell us what to expect. When baby is born, they will in all likelihood whisk baby away from me, bring them to the NICU to stabilize the baby, then transport the baby at
three hours old to Children's Mercy Hospital. I will not get to hold my baby. I will not see my baby while I am recovering for the first 24 hours after birth. This is what makes me cry. Tim will go to Children's Mercy to complete the paperwork there, and then after they stabilize baby, he will be allowed to visit and touch the baby. If I am doing well, St. Luke's might give me "a pass" that allows me to leave a bit earlier and travel the ten minutes to the other hospital to visit with our newborn.
In a few weeks, Tim and I will tour Children's Mercy and see how it is set up and how they handle this whole thing from a parent's perspective. We will also consult with the pediatric cardiac surgeons (they have two). St. Luke's assures us that we can choose to change hospitals and use other surgeons; they will send our records elsewhere. But that is for us to think about later.
I'm sure I missed something, it is now 1 AM, and I've been writing for two hours. We did learn some good things like baby's weight (1 lb 2 oz?) and baby is measuring two weeks ahead.
SummaryThe fetal echo cardiogram lasted over an hour. They diagnosed missing valves, sealed over valve openings, and extra holes in the heart. Baby will require three surgeries: the BT shunt in first week, the Glenn Shunt at 5-6 months, and the Fontan Procedure at 3 years old. Baby will be sent to the other hospital within hours of birth, and we will likely not be able to hold baby at all.
She brought up three simple Christening gowns, which were really just front cutouts that one could lay across the top of a baby, without having to worry about tubes and other medical apparatus. We picked one of the three for Thomas to wear.
Paul told me that while growing up, he didn't like it, especially since he didn't even know "who" Emery was! But that he had grown used to it now. When I told him the choices, he said he liked the flow of Thomas Emery better than Thomas Edmund, even though he thought Edmund had a more tangible link to our family. (Edmund is my father's father's name.) Our first link into the Emery family, which settled in America in 1635, is my father's great grandmother, "Grammy Kate", or Katherine Imogene (Emery) Stevens (photo taken c. 1925). My dad's mother Olive had a brother named Clayton Emery Buck, we knew him as "Uncle Clayt" growing up. Olive then chose the name Emery for the middle name of her son, my father's brother, David Emery Cullivan. My dad continued the tradition and named his eldest son Paul Emery, this is my brother. There is a free downloadable copy of the Emery genealogical history online at Google Books: Genealogical Records of Descendants of John and Anthony Emery, of Newbury, Mass. 1590-1890.
The name Thomas might seem to point most obviously to Tim's father, Thomas. But since I am a genealogist, what I find really neat about it is that Thomas is the name of the father of the first Daily immigrant to America, Peter Daily, who arrived in Boston, MA about 1835. A verbal history by one of Peter's granddaughters stated the following: "Peter Dailey was born in County Longford, Ireland, in the year 1804. He was the son of Thomas Dailey, who was a schoolteacher, and his second wife, name unknown. Thomas Dailey and his first wife had five sons and they were grown men when Thomas remarried after the death of his first wife. Peter was their only son and Thomas died when Peter was two years old." Peter's son John named one of his twin sons Thomas. Tim's father, Tom, was named for this man, his grandfather (see photo, taken in Indiana in 1909). The name Thomas means "twin" in Greek. Our little Thomas could have been a twin also, as he was one of two embryos that we transferred back in March. I like that little twist to the meaning behind his name, too. So Tom's grandson was named for him, just as he had been named for his grandfather. Another cute little fact is that our baby son now has both of my brothers' middle names! (My brother Brian is named Brian Thomas.)
I gave birth to our baby boy at 2:12 this morning, November 22, after more than 24 hours of labor. Baby was 7 lbs. 11 oz, 21.5" long, with a full head of hair! He was rated with an impressive APGAR score of 9. (The neonatologist was impressed. He said, "we don't give those away.") He has a nice round face, good reflexes, a hefty cry, very long fingers and toes, and large feet. We have not named the baby yet, but plan to do so by tomorrow (Sunday).
I'm not sleeping as well these days, I get odd cramps in my knees, or I wake up and can't fall back asleep, thinking about my long to-do list! I did put a towel and piece of plastic under the sheet to protect the mattress in case my water breaks at night! So the plastic is a little warm, and that doesn't help either.
Nurse also mentioned that baby appears to by laying in an optimal position, Right Occiput Anterior, where baby's back is on my right side. Here is a neat website showing baby's head in the pelvis (scroll down): Fetal Position within the Birth Canal. [Other info from the appointment: blood pressure nice and low at 104/66, I passed the Strep B test, so no need for antibiotics at birth, baby passed the NST as usual, and fluid level was 13.8.]
On October 4, my friend and ninth cousin (!) Beverly Land cohosted a baby shower for us at her home in Parkville. Kimberly Mensch, a good friend from my golf club who had long ago offered to host a shower if we ever fostered a child, was the cohost. (Bev and I both do genealogy which is how we figured out our relationship. She is technically my only family who lives locally!)
The invitation list included my neighbors (and former one who flew in from New York!) and golfing friends. Quite a few who could not attend sent gifts. I was taken aback by everyone's generocity and thoughtfulness! Tim enjoyed looking at the gifts after I brought them home. I did bring in my mother-in-law's bassinet to use as a backdrop and gift holder, which worked out quite well. 
The lovely gifts included Two handmade small quilts, Four boxed photo albums, Polka dotted sage crib skirt and sheets; Giraffe baby blankie, Sweet pea boppy, baby sign language set, breastmilk storage bags, breast flow bottles, "Guess How Much I Love You" book and soft matching rabbit, Chenille pastel baby blanket, "squeeze me" onesie, Irish pastel wool blanket, rosary beads, moo bib, peace signs onesie, silver feeding spoon, Wedgewood Beatrix Potter china set (bowl, plate, cup), Bathtub super scooper, sassy bath toys in bag, travel size Baby Johnson products, BRU gift card, Cowboys NFL bib autographed by Tony Romo, Jacksonville NFL bib autographed by Derrick Harvey, Peter Rabbit baby book, Beatrix Potter "wallies" cutouts, Hand woven pastel baby blanket (very soft and washable), 3-packs: bibs (I love grandma), too cute onesies, best of friends onesies, Gerber t-shirts; hat and sock set, playtex bottle liners, foam bath mat, Evenflo bottles, Bathtub, rubber ducky heat sensor, nasal aspirator, nail clipper with magnifying glass, and a High chair.
They served these absolutely delicious frosted sugar cookies -- and let me take home the extra! We also played a few games. The first one was to guess how many diapers were in a sturdy plastic case. Having purchased a few boxes of them over the past few weeks, I was closest at 150, which was probably an unfair advantage! In addition to getting to take this home as a gift, as a little prize Bev also gave me a "baby's first Christmas" ornament, the only one we've received! A second game was to match baby pictures to names, some of celebrities but mostly of the ladies present. 
One of the guests was my next-door-neighbor, Ilona, who is due about three weeks before me. We did a belly comparison photo! At the time this photo was taken, I was at 32w2d, and Ilona was 35w0d.
You can see baby's hand covering up the right side of his or her face. Baby's eyes are closed and lips were a bit pouty. I thought the baby resembled my father-in-law, Tom!
When I returned from Martha's Vineyard this summer, I brought with me the family Christening gown that Mom and Dad bought in Lisbon, Portugal in May 1980. This gown (click image to enlarge) is almost thirty years old! It was still in its original box, yellowed, with some stains on the front. So I sent it to the dry cleaners a few weeks ago, and they were able to make it look very white and clean again, along with the bonnet.
After looking at a few books, we finally decided on Capretti Home's Veneto collection. BB gave this manufacturer a straight A for its quality touches and customer service. The furniture is made from solid poplar construction, has dove-tail joints, and really nice sturdy hinges.
We picked a drop-side crib instead of a convertible crib (those are the kind that have one side higher than the other so you can turn it into a full size bed), partly for classic looks, and partly to take up less wall space in the nursery. Some of the nice features of this crib are its simple, curved lines, a secure drawer underneath, and the toddler bed rail so you can use the crib as a toddler bed. Although these photos show dark wood, we ordered the furniture in "rubbed snowdrift", which is their name for white.
We also picked out the armoire from this collection. I have been wanting an armoire because there is no closet in the nursery, and I want to be able to hang some of baby's clothes from hangers. This armoire includes the removable hanging bar and two adjustable shelves. Note all the rounded edges: nothing sharp to bang a small head against. This picture also shows the five-drawer dresser (which we didn't order) in the snowdrift color. Instead, we ordered something they call a "three-drawer cupboard". They had no picture of it in this style, so we bought it sight-unseen. It should have three drawers on the left side, with a taller attached "cupboard" on the right. The cupboard should include about three shelves. It is usually taller than the dresser portion, so we can put baby lotions, etc. on that part, and a changing pad on the lower dresser part. I've written to Capretti Home and asked them if they can send us a photograph.
Lastly, we placed an order for a Dutailier glider and ottoman. We chose the Comfort Plus nursery series with the "two post" classic style. This glider has a range of motions: it has several positions for the back, it glides, it reclines fully, and it swivels. We also ordered the matching gliding ottoman with a nursing stool that drops down so you can rest your feet in a more natural position for nursing. Both items are made of solid maple construction. We ordered them with the vintage finish (dark wood as shown in the picture) with sage green microfiber cushions.
I couldn't not buy these two Carter's outfits I found at Kohl's on Sunday. They were on sale, plus I had 30% off. The one on the left says "Baby's 1st Thanksgiving" and the one on the right is "Little [Turkey]". Since the due date has always been Thanksgiving Day, I thought they would be appropriate. (Remember to click on the pic to enlarge it.)
I am now going to my OB appointments every two weeks. Yesterday's included an ultrasound scan for growth, and all looked well. Baby is 3 pounds, 8 ounces, and the technician said baby has very long feet. Baby's head is down and on top of my bladder, with the spine running up and along the right side, with one foot down at the head (!), and a hand behind baby's head. She printed off some scans for us (the one showing foot by head is above), and videotaped a few more minutes, including baby blinking the eyes! But baby wasn't in a photogenic position, unlike two weeks ago when I got to see baby on the small screen in the exam room. The doctor came in and did a check, too. He said there are no signs of heart failure, and baby's heart is beating rhythmically, at 133 BPM. There is plenty of amniotic fluid, too.
We hired someone to hang the wallpaper borders. She was very good, she put sizing (or primer) on the walls first, so we can remove the borders more easily when it is time. Then she hung the top 6" border, the bottom 9" border, and the matching wall accent in under three hours. She reinstalled all the outlet covers, too. I did goof, I forgot to measure the wall over the 5' wide doors, so we were short a roll of paper on the top. I reordered one, and she will come back next week to put it up, no extra charge. She didn't even want payment today, that's how nice she was! Next up, window treatments, wall hangings, and furniture!
I thought you might like to see the fabric my sister Amy found to use for the window treatment. It is called Dotz Mint and is by Waverly Fabrics:
Wallpapering is being done on Wednesday; we hired someone to put up the two borders and the wall accent. (See 5/30/08 blog post "Nursery planning.") All the painting is complete, including scraping of the glass and touch-ups along the edges. After the borders are up, we will rehang the French doors and move the office furniture into final position. (We will leave the couch in there until we get nursery furniture, so I can have a comfy place to nap!!) Tim will then hang the ceramic rabbit chandelier. After fabrication, the window treatments will be installed.
The party was held at a church hall, where the Ladies League did all the work of setting up the tables, preparing and serving the lunch, pouring drinks (water, lemonade or ice tea), and cleaning up. The lunch started with a molded cranberry salad, and then a delicious chicken salad croissant sandwich served with fresh fruit, with bowls of potato chips and relish trays (i.e. pickels and olives) on each table. The centerpieces were white daisies in decorative galvanized buckets with an attached white stuffed animal. At each place setting was the party favor, homemade raspberry jelly made by Mary Anne and her sister Fran, and a blank envelope (to go with the thank you cards) for each guest to write out their own name and address.
This (unfortunately blurry) photograph at right [click on images to enlarge] was taken before any of the guests arrived. The hostesses are from left to right: Annemarie, Jenni, Mary Anne, and Karen. Then I am next, in green, with nieces Hannah and Kirsten.
We posed in front of the gift table. To the left of the table, as a party decoration, Mary Anne placed her original baby bassinet from when she was a baby. All of her siblings slept in that bassinet, as did nearly all of their children and grandchildren! Inside the bassinet is Tim's baby picture. Hanging from it is an old satin stork, which has been hung up on numerous front doors announcing the arrival of the latest family member. After the shower was over, we packed up the bassinet and stork and shipped them to Missouri, where they await the latest delivery!
After we ate lunch, I went back and sat in front of the gift table to open up our baby shower gifts. Hannah handed wrapped packages and gift bags to me while Kirsten wrote down the names of the guests and their presents. Our guests were very generous. We got many items from our registry and plenty of beautiful surprises, too. An amazing thing also occurred: we did not receive a single duplicate gift! While I opened the gifts, the rest of the party got to enjoy a piece of the shower cake, which was a white cake with raspberry filling, very much like our wedding cake (and made by the same bakery!). The cake was served with an ice cream or sherbert. (I eventually got some after the last card was opened! And they saved a piece for me to bring to Tim later.) After the opening of several gifts, Hannah would draw out an envelope with one of the guests' names on it to annouce who won a centerpiece to bring home.
Some of the shower gift highlights were the homemade items. At left are my personal favorites, a pair of crocheted baby booties, complete with tiny buttons, and a matching bib. They are so tiny and so adorable! These were made by the mother of one of Tim's good friends. She also made embroidered burp cloths with funny sayings like, "If I'm not sleeping, nobody's sleeping!" and "2 a.m. Party. My Crib. Bring your own bottle." An eagerly awaited gift was a homemade quilt by Marilyn Adams. Apparently Marilyn has made many newborns' quilts, but I didn't realize that. In just a few days before the shower, she pieced together a quilt with the Beatrix Potter fabric. It is quite warm, large, and beautiful. Other handmade items included washable cloth books sewn by Hannah and her other grandmother Barb, and a play quilt to lay on the floor.
