Baby registries

After I returned from my vacation back east, Tim and I were under the gun to get our baby registry done. It was only a month to our first baby shower in Michigan, and the invites had to be mailed. So the first Saturday I was back, we headed to Babies 'R Us (BRU) to check it out.

We were so overwhelmed. We spent three hours and twenty minutes browsing the aisles and selecting items for baby. It was too exhausting to continue, even though we felt there was so much more to look at. When Tim's administrative assistant saw our registry online on Monday, she was shocked: "You have hardly anything picked!" Yep, we knew that.

Before we had gone to the store, we did a little research. We looked at a list of "must haves" and written down the categories, including car seat, stroller, high chair, and monitor. Then we went online to Consumer Reports (CR) and wrote down their highest rated items for those categories.

At BRU, we picked up a scanner to assist in adding things to our registry. Then we headed over to look at car seats. I wasn't too impressed with the colors (day-glo orange?) and we had a hard time finding the top rated ones. So we scanned one that we liked best. Then we headed over to the strollers. Again, it was difficult finding the brands listed by CR but we did find one that came with a car seat. As it turned out, they were both top rated, and we loved the sage green color. But the proof is in the pudding, and we spent about ten minutes collapsing and setting up the stroller, attaching the infant car seat and removing it, etc. It worked like a dream. So then we scanned that to the list. These two items alone took us about an hour! (After I got home, I removed the first car seat from the list.)

In the first aid aisle, there were about fifteen thermometers to pick from. We talked about the different features on them, and finally picked one. A woman standing next to us, with a baby in a carriage, politely asked us if we would mind if she told us that she didn't like the thermometer we picked. Honestly, we were thrilled. She said it wasn't very accurate, and showed us the one her pediatrician recommended, saying it was much easier to use. So I jokingly asked, what else do you suggest?

We went home shortly after that, and then I looked at our registry online. The nice thing about the BRU web site is that it allows people to place 1-5 stars and comments on each product. So we read the comments for the items on our registry, and changed a few things, and deleted others.

We have also opened up a registry at Amazon.com because there are some things that BRU does not carry, like an extra car seat base, so we can have one in each of our vehicles.

There will be another shower here in our town in October, and by then, I hope to add things like diapers and lotions, and who knows what else. I did learn from friends that you don't need to register for clothes and blankets, people love buying those things anyway! =)

Having twins?!

It is funny how many people have said, "Maybe you're having twins!" in an excited way, when they find out we are expecting. They are usually complete strangers, like a young waitress at a restaurant.

But I was surprised that a visiting nurse said that last night. (She was at our house to do some simple tests for our life insurance policies.) I would have thought that a nurse would be aware that these days people have ultrasounds and can tell when you are having one or more babies!

Pretty amusing anyway. But no, we are pretty sure there is only one baby in there!

Daddy feels baby move

Last night after I had turned off the light and Tim had fallen asleep, I could feel baby moving around a bit. So I put my hand on my belly and I actually felt the kick from the outside (to the right of my belly button). I grinned from the experience. A few minutes later I felt the kick again in the same place with my hand.

Early this morning, while a storm was passing through, Tim and I were snuggling on the bed and I told him about the kicks. He put his hand on my belly and got to feel baby moving, too. Baby was very active. (I had jumped up to make sure our sprinkler system was off, so probably woke baby up.) It was so great to share it with daddy! We've got a critter in there!

Here is last night's belly shot, at 22 weeks:
[FYI - We missed some belly shot weeks because of lots of traveling in June.]

How far along are you?

When people ask me how far along I am, I can tell them pretty quickly how many weeks, since that is how pregnant women, doctors, nurses, and pregnancy web sites measure it. But mostly, everyone wants to know: How many months is that?

So to help you out, you can now use this chart to do your own calculating!
So I am near the end of my fifth month, since I am in my 21st week.

Baby kicks

I have been eagerly awaiting the day when I will feel baby kicking inside, and know without a doubt, that it is baby. A first time mother-to-be feels this movement much later than others who have been through it before and know what it is like. I read that I should expect to feel baby's kicks as late as 22 weeks, so I haven't been worried about it. When you've seen your baby squirming around in utero on the "big screen", it gives you patience.

[When pregnant, you are sometimes offered unsolicited advice. I was at a family party at 16w2d when asked about baby movement. When I repeated the above info, I was firmly told by someone who last had a baby over 40 years ago, "No, you should be feeling the baby now." This is when you learn to just smile and change the subject.]

I think I first felt baby move on June 23 (17w4d), the day before we flew back to the East Coast to visit family. I was at the kitchen sink, and felt something like a small tap. Very brief, not repeated, but definitely not one of my ligament pulls or a gas bubble in my stomach. (Or as Scrooge told Marley, "You may be an undigested bit of beef, a blot of mustard, a crumb of cheese.")

Two days later, I again felt a very small tap, deep inside, that I wasn't sure about and guessed could be baby. But it was the last tap I felt for a week, when there again was another something, like a tiny finger wiping at my insides briefly. But with everything getting crunched up inside as the uterus has expanded, who really knew? In the last few days, I would say to Tim, "well I might have just felt baby," and touch Tim's arm with the briefest of touches to describe the feeling. Each of these odd taps would be so brief that I wouldn't notice it until it was gone, and each was never repeated.

But today! Three or four hard kicks in one area! Someone was definitely saying hello! I was lying on my left side on the couch in the office, getting ready to take a nap after lunch, when I felt the movement. Oh this was baby firmly kicking! (The ultrasound technician warned me baby's legs were up by his head, and in prime kicking position!) I felt them one after another in the same area, on the left side of the uterus. Maybe baby was feeling a little squished and pushing himself into a roomier position.

All I could do was smile a big contented smile, knowing baby was there, doing well inside my pregnant belly.

Baby's broken heart

We had our week 20 "big" ultrasound yesterday; Tim came with me to see how the baby was doing. It was so fun to see all the bones in place, count the fingers and toes, and close our eyes when the technician scanned "down there". (She said the baby's legs were closed, so we don't even know if she saw anything.)

But when she went off to get Dr. Lu to do his routine check on the u/s, what had seemed routine soon became obvious was not. Dr. Lu spent about ten minutes scanning the baby's heart. I finally asked him what he was looking for, and he said he was having a hard time looking for something, the baby's arm was blocking one view.

We got a few stats during the scan, and the tech also videotaped a few minutes showing the various body parts. We got to hear Baby's heartbeat at 131 beats per minute, baby weighs 14 ounces, the placenta is far away from the cervix (a good thing), the umbilical cord has all three veins and arteries it needs and looked good, there was plenty of amniotic fluid, placenta was a good size, and baby was moving around. Baby is measuring at 21 weeks, so a week ahead, which means baby is strong and healthy otherwise.

Dr. Lu asked us to come back to his office to explain what he saw and what he did not see. He immediately told us that he believes the baby has a heart defect. He said that he could not find a fourth chamber of the heart, and that the way the blood was flowing indicated it was not flowing normally. (On the u/s, we saw a mix of red and blue flowing together like in a cloud.) He explained that it appeared the baby has "hypoplastic left heart", a Congenital Heart Defect (CHD).

From what we read online, it appears that our baby will require open heart surgery within the first week of life, the first of perhaps three surgeries by the age of four. So sadly, we will not be able to bring our baby home with us after birth. The baby will probably have difficulty breast feeding, and I am saddened with knowing this, that our bonding time will be so disrupted.

Tim and I will need to return to the office on Wednesday, 6 August, for a fetal echocardiogram. A pediatric cardiologist will run a new scan of the baby's heart to determine the severity of the defect and confirm the diagnosis. The doctor is the chief of the cardiology department at Children's Mercy Hospital, which was ranked number ten in the nation in 2003. Our baby should be in good hands.

Dr. Lu also mentioned one other thing that shook us both. Having a heart defect is a symptom of a chromosonal disorder, "DiGeorge Syndrome." He probably mentioned it because he has to. But it is like this analogy: all apples are fruit, but not all fruit are apples. So every baby with DiGeorge Syndrome has a heart defect, but not all babies with heart defects have this disorder. When you think of the statistics on babies being born, there are almost 1:100 with CHD. The prevalence of DiGeorge syndrome is debated; the estimates range from 1:4000 to 1:6395.

Tim and I spent the afternoon in a daze. Just the night before we were joking about the baby registry and he was urging me to make a decision on what color paint to use on the nursery walls so he could finish that task. The pure joy of our smooth pregnancy was still intact. Now here we were, making phone calls to family members and coping with the bad news we uncovered on the Internet.

This fetal echocardiogram will be scheduled for the day before we leave for our week in Michigan. The baby shower is three days later. Although it seems like the shower should be canceled, Tim and I decided we would prefer to have the shower. One of my internet friends who was expecting twins, but whose son only had two of the veins and arteries in his umbilical cord, shared her experience, "We also had to go to our shower out of state on a Saturday knowing Monday's u/s would be our big day to find out if anything was going on with our boy. It was a good weekend and we were able to get it off of our minds and focus on the wonderful gifts everyone had bought for our new family members." It is through other people's experiences that we learn how to cope and deal with our situation.

Another internet friend has created this blog for her family: Rebecca's son Jasper's heart journey. She is due six days before our baby, and her son Jasper has also been diagnosed with a CHD. By writing to each other, we help each other out.

As I've mentioned before, our next door neighbor is due about three weeks ahead of me. She had her big scan Thursday, too. She called me before she left to see how mine was, and of course, I could not bear to answer the phone. She called again that evening, and this time I told her what happened. I didn't want to worry her during her own scan.

Well she told her husband who came over and rang our bell. Can you believe this? His fourth daughter was born in 1982 and was the tenth baby in the world to have the shunt installed right after birth, with all the follow up surgeries until age 13 (which they told her father was now being done to 4 year olds). She was born with the same CHD that our baby has preliminarily been diagnosed with! His words were so reassuring on such a bleak day. The daughter is now 26 and he says she is the kindest person due to her experience. He said she does get the flu more often than other people, but otherwise is very healthy. He told his daughter to live as full a life as she wanted to, but not to run in any marathons! He wanted to let us know so that we could have some hope at this time. He also added that he bonded with his baby daughter in the hospital by letting her hold on to his pinky. She knew it was his and not a nurse's and felt much calmer.

After living with the diagnosis for 24 hours, I called Dr. Lu with a few questions and went over the answers with Tim. I asked Dr. Lu if he saw anything else during the scan that would seem to indicate our baby might test positive for "DiGeorge Syndrome" and he said no, it was simply having a heart defect that caused him to mention it. I asked if a 3D scan of the baby's face would help us to recognize any facial disfigurements that would indicate a chromosonal disorder, and he said that the doctors don't find 3D ultrasounds to be helpful in diagnosing facial features. Scans are more useful after 27 weeks, when a baby's face has more fat and liquid in the tissues, which helps to plump out the facial features. For example, he stated that 3D ultrasounds only pick up 10% of all cleft palates prior to birth. I asked him about the rates of miscarriage for performing an amniocentesis at their clinic. (The national average is 1:300.) He said that they average between 1:400 and 1:500, but that complications arise in 1:200. They perform several amnios per week and are quite experienced with them. If I was to do an amnio, I would need to speak with a genetic counselor beforehand who would discuss the information that would be found and the rates of false negatives, etc.

Since Tim and I wouldn't be terminating the pregnancy, it seems pointless to us to risk a miscarriage, even though the rates are much better than nationally. And the odds of just having a CHD and not the Syndrome are in our favor. So for now, we have chosen to wait until the later stages of the pregnancy and request a 3D scan then to look at the facial features, then go with an amnio if we see something suspect. If a baby is born after 35 weeks, it has a much better chance at being fully formed and healthy.

In the meantime, we choose to believe our baby's path in life will follow that of the healthy daughter of our next door neighbor.