Hospital tours and consults

On Friday, September 5, Tim and I drove to Children's Mercy Hospital in downtown Kansas City. It was about a 20 minute drive. We had a consultation set up with the first of the two pediatric cardiovascular surgeons, Gary Lofland, MD, section chief, at 9:30 a.m. The meeting was held in an exam room! I guess they don't have conference rooms like they have at the private clinic.

Dr. Lofland appeared, along with one of the nurse practitioners from surgery. He had the notes from Dr. Rajan in his hand, and went over with us again the diagnosis, the plan, and the prognosis. He told us that the surgical team meets once a week on Friday mornings to go over the patient cases and discuss schedules, staffing, etc. He assured me that if the baby came in afterwards, that we wouldn't have to wait a whole week before they would talk about the baby's case! If the baby comes in during regular business hours, they will schedule the echo as a matter of routine, and someone on staff would be assigned. If the baby came in during the night, they would probably wait until the morning to have the echo done, unless something was just not going right.

He said that the first shunt surgery was pretty noninvasive, compared to the Norwood Procedure which requires open heart surgery. I asked about time frames, and he said pretty cavalierly that the baby would probably be home within ten days. Baby would only need to stay in the PICU (pediatric intensive care unit) for a short while, until stabilized after surgery. He said they do these surgeries a lot, that as long as baby is on the prostaglandins (from the IV), that they consider the surgery elective. The shunt surgery will only take an hour. We asked about donating blood for the surgery, and he said with the short time frame involved, that this is not a good option for now. He said perhaps in the future, when there is time to have the blood processed, we could consider it.

We asked about storing the baby's cord blood in case in the future it could be used to help baby. His response was an emphatic yes. Although so far the future situations are unknown, and what medical science can do, he felt that it was a good thing to have in case they can do something useful with it. (Cord blood storage is very expensive.)

Another thing he mentioned was the time frame for the third surgery. They want the child to weigh 30 pounds for the Fontan Procedure. So that is why it could occur between 3 and 4 years.

We then met with Barb, a clinical nurse specialist. She brought us up to the NICU (neonatal ICU) for a tour. The patients are in "pods" rather than rooms. But each pod has a curtain that goes around it, with a couple of chairs in addition to the bassinets and medical equipment. We saw a few parents holding their babies, tightly swaddled. But we saw many more babies alone in their pods. Some were tiny, some bassinets were covered by a blanket, there even appeared to be some type of surgery going on in one pod. It made me a little teary-eyed to see all these poor little babies. But the area was quiet, new looking, and orderly. Barb showed us some parent waiting areas where we can stretch out and eat, the breast pumping room, an area with showers. She briefly showed us where the nurses' office was, it was so cramped! But the women we met were very friendly. Barb told me that I will be given three free meal coupons each day for the hospital cafeteria so that I can be sure to get proper nutrition while breastfeeding. They will loan me a hospital-grade pump which I can even bring home with me.

Barb also told us that there is a Ronald McDonald room for families with children in the NICU. She said volunteers bring in a hot supper about four nights a week that we can partake in.

Barb then had us meet with a neonatologist. This is a pediatrician who specializes in premature babies and newborn infants. They work for several weeks "in rotation" at the hospital in addition to their own private pediatric care practices. The doctor we met was happy to answer any questions we had, and talked a bit about how they handle the incoming babies before surgery. She was with us for half an hour. We were pretty impressed.

Then we met with a social worker who is on staff at Children's Mercy. She gave us a "care package" from the Congenital Heart Defects Families Association. (We opened it up on the way home and it had a homemade blanket, stuffed animal, crayons, toiletries, etc. It is probably usually given to parents who are checking in with their CHD babies.) She told us about the resources available to us, and how she will assist us with getting support. She was very nice.

After our meetings, Barb brought us down to the PICU. They have fewer rooms in the PICU. She was able to show us one room where they had a baby in a bassinet attended by a nurse. In the PICU, the ratio of nurses to patients is one to one. They remain in the room at all times. There is space for two visitors to be with the baby, no more than two are allowed, and one has to always be one of the parents. (I forget if the NICU allows two or three.)

Barb then brought us up one of the towers to try to show us a typical private room. This is where baby goes after being discharged from the PICU. Earlier in the meeting, Barb sort of laughed when I told her how the surgeon had thought we would be discharged from the hospital after ten days. She said that was really wishful thinking. In most cases, baby requires some time to learn to get proper nutrition. This is usually two to three weeks following surgery. The social worker told us that was pretty standard for 90% of the patients. She said 5% recover amazingly well, and require very little time in the PICU and go home right away, the other 5% have complications which require much longer stays (or worse, presumably).

The private rooms look much more comfortable. There is a twin bed sized window seat/bed, chairs, and the baby's bassinet and equipment. The rooms, I think she said, come with refrigerators. She said they try to move the patients who will be there for more than a week to the further ends of the hallways (where it is quieter), but it all depends on availability.

As we left, Tim and I agreed that the hospital was really nicely put together. The entry is very cheerful and colorful, there seems to be plenty of places to eat, there is a busy gift shop, and parking was not bad. It is also very secure; each person entering has to show a photo ID and sign in at a single guard's entrance. We never had to wait, but we were told sometimes the line is half an hour long! One thing that made Tim pretty sad were the memory quilts they had on the walls. These feature squares made by family members that showed a child who has passed away.

Two weeks later, we met with the second surgeon, James O'Brien, MD, Assistant Professor of Surgery. (Barb had told us in the previous meeting, "I love Dr. O'Brien!") This was a quick visit. We have explained to everyone that we wanted to meet with both surgeons because we just don't know who will get assigned to do the surgery, if baby ends up coming during the holiday week (Thanksgiving), and one is on vacation. Neither surgeon thought it was odd, but I think at first Dr. O'Brien wondered if he'd just be repeating everything Dr. Lofland said. Although he did to some extent, he also showed us something new and told us a few things we hadn't heard. It was a worthwhile visit. The thing that seemed new was that he showed us a picture of a left ventricle which he said was barely formed, so very small. He also said that they still didn't know how well formed the veins and arteries leading to and from the heart were in the baby. The better off they were, the stronger baby's heart would be able to operate.

The following Wednesday, the 24th, we returned to my OB's office for the second fetal echo cardiogram. Dr. Rajan again used the ultrasound to examine the baby's heart. While we were in the waiting room, it was pretty funny, baby did not stop moving! There were even hiccups! But when we got into the scanning room, baby laid perfectly still for the most part, chest up, a great position for Dr. Rajan to examine the heart, arteries, and veins. Afterwards, he met with us in the conference room and told us that the diagnosis has not changed. All the structures are the same as what they observed before. He did note, as Tim was also able to observe, that the blood flow in and out of the heart was very strong. So baby has good veins and arteries, and that is good news.

Dr. Rajan noted that we had seen both of his surgeons, and wondered if we had a preference. I actually have none, I thought they both seemed pretty similar. Tim, however, thought Dr. O'Brien was more outgoing. Dr. Rajan said that if we had no preference then they will just simply schedule the surgery with whoever is working that day. (Or something like that.)

After the conference was over, the hospital coordinator (who is due three weeks before me!) brought us on a tour of the St. Luke's NICU. She also showed us the Labor & Delivery ward, so we got to see one of the smaller rooms which was empty. All rooms are private. Things were more dated than the children's hospital, but she said the interior rooms were much larger and comfortable. They fill those up first. Most women labor and give birth in their rooms. But due to our special situation, I will only labor in the comfortable room, then be transferred to an operating room (for vaginal births) where they have room for a lot more people and equipment. That was disappointing, but not unexpected. The labor rooms have private bathrooms, CD/VCR/DVD players, birthing balls, and couches. There are waiting rooms and even a little snack area for expectant fathers where they can go and get (for free) mini deli sandwiches, drinks, and snacks. I actually had a Nutrigrain bar from one of the mothers' snack carts since I was very hungry at the time. We still have to go back for a formal tour of L&D, and do all the pre-admitting paperwork. But it sure was nice to get a glimpse of where baby is going to arrive!

The NICU looked very much like the PICU at Children's, with glass walled rooms and curtains. There are two bassinets per room. She showed us the ventilator that baby will probably be put on. (They call it "aspirating.") The transport group from Children's will stay with the baby in the NICU until baby is stable on their own equipment, then wheel baby out. If I haven't seen baby yet, they will bring baby to my labor room where I will be recovering. It was suggested a few weeks earlier that Tim could stay with me for the first hour after baby leaves since they will need that time to prepare for baby's arrival in the NICU at Children's.

I had meant to write about all this as it took place, but I got lazy! I am hoping I remember most of what we were told, although I know we've probably forgotten plenty.

We bought the furniture!

We finally found our nursery furniture. We have a membership at Direct Buy, so we headed there today to see if we could finally pick out a crib, armoire, and dresser. We brought our copy of "Baby Bargains" - a book that reviews all sort of items you might purchase when you have a baby, from cribs to diapers. It is an excellent book, and they wrote it to help you save money, giving tips on what is a waste of money, what is a good deal for a case of diapers, etc.

At the showroom, we went through all the various manufacturers' catalogs, looking to see how they were rated by Baby Bargains (BB), before pulling them off the shelf to browse. We've had a hard time finding a nursery set with white furniture, and in fact, some of the ones we saw in the catalogs looked great until we saw that their finishes were limited.

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.

After we got home from lunch, I compared the prices we spent with ones quoted online and we saved about 50% on the Veneto collection and 25% on the glider. We have to wait until November for the furniture to be delivered, but that should still work out fine. (As much as we want it in and set up already!!)

Thanksgiving outfits

Some days it is hard to resist the call of baby clothes!

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 bought newborn size (on right) and 3 months (on left) - hoping baby will fit into at least one of them! I plan to bring them to the Children's hospital and get at least one pic wearing an outfit!

So this brings a total of five purchases of clothing I have made! First one was a "baby's first Christmas" set I got on super clearance at Marshall's last January, before baby was a gleam in our eye. Then I got a cute little onesie at a genealogy fair in May. In July, at a going-out-of-business baby shop, I picked up that adorable Sweet Pea coat and hat, and a little suit, and in August I got several outfits for a few dollars at a garage sale. Good thing I do not know the gender!!!

Contractions and appointments

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.

This has been a different kind of week for me. I have been having a lot of Braxton Hicks contractions. These are sometimes called "false" or "practice" contractions, since they usually aren't painful and don't cause dilation. They started Monday night, the night of the full moon. The uterus tightens up all over for about thirty seconds. I can feel them coming on. If you have more than five in an hour, you are supposed to call the OB, however. And that happened Tuesday morning. The remedy is to lie down and drink lots of water for an hour. So that helped. After that, I just got them about once or twice an hour. But Wednesday evening, as I was preparing to shower, I got about seven in ten minutes! After the shower, I lay down, but still got another six. The doctor on call wasn't too concerned after I described everything.

I find I get them if I go to stand up, if I'm sitting at the computer, or running a quick errand like picking up milk. So basically, any time! I don't feel too good though after I get a few of them, and I think it has curbed my appetite. But baby is still moving quite a bit.

So at the OB appointment yesterday, when the nurse examined me, she asked if I had been having any contractions. I said, surprised, "Oh, haven't you heard?" So she asked me if I would want an internal exam to set my mind at ease that I am not dilating. And I was grateful, I said yes. She was very gentle with it, first saying, "And this is your pelvis" as I could feel the pressure against one spot, "and now I'm feeling baby's head" which was amazing to hear, and finally "and this is your cervix." She said it was barely indented, so pretty closed, right where it should be at 30 weeks.

My weight hasn't changed in the past three weeks, so it was good to hear that baby was growing well and is in the 50th percentile which they felt was perfect (i.e. won't be too big). And they did say baby is very symmetrical, all body parts measuring in symmetry.

Today we have our second consultation with a pediatric cardiac surgeon. I will eventually post about the first consult, too, and the tour we had at Children's.

Baby belly (and birthing plans)

This is my belly at 28 weeks (last Thursday night)! Baby is lying at an angle, head is down and to my lower right, rear end is up and under my left ribs. I mostly feel the arms thrashing about, although there is some squirming.

Tim and I have signed up for "hypnobirthing" classes. This is a fairly new birthing method that allows a woman to approach birthing without fear of pain. The majority of babies born to women who have used this method arrive calmly, without stress. We are doing this to give us a chance of having baby delivered (or "breathed out" as they say) without distress so we can have a few minutes to bond with baby.

We are also hiring a birthing doula. We have asked Lynn, my yoga instructor, to be there with us at baby's birth. As she describes it, "I draw on my knowledge and experience to provide emotional support, physical comfort and, as needed, communication with the staff to make sure that you have the information you need to make informed decisions as they arise in labor. I can provide reassurance and perspective to you and your partner, make suggestions for labor progress, and help with relaxation, massage, positioning, and other techniques for comfort."

I'm confident that with Lynn there, and having had the hypnobirthing training, I am doing all I can control to make this birth as smooth and natural a process as possible. Everything else is in God's hands.

Wallpapering done!

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!

Nursery update

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:

She will make a little cushion for Tim's white baby rocking chair, too; I sent her a tracing to use as a pattern. And she will sew a table topper for the table we will (hopefully) have in one corner of the room, near the glider and ottoman. She ordered an extra yard and a half for these little accessories. Plan is to have white wooden blinds for privacy, and then two side panels with wooden rings hanging from a matching wooden rod that is painted white with little specks of aqua and green.

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.

We still need to purchase the furniture. We would like a standard crib, an armoire with a hanging rod, and a dresser, all in white or off-white. We would also like a reclining glider and ottoman. The office desk will remain in the room, along with the matching file cabinet, which we can use as a changing table since it is the perfect height. There is going to be a lot of stuff so we have to figure out how it can all be arranged. Lastly, we plan to make a 3- or 4-panel screen which will be wallpapered in a matching trellis pattern. This will hide the office furniture from view when you first walk towards the nursery.

We are getting there! It is pretty exciting!