Maggie's First Visit to Children's.

I cannot say enough good things about Children's National Medical Center.The personnel - from the doctors to the administration - are wonderful. I called the genetic counselor to set up an appointment not long after we got home from the hospital. She asked all about Maggie and how we were doing, then asked when WE wanted to come in for a visit and said she would get back to us. When she did, it was to ask about a few dates, so I picked one and then she said she would get back to me to confirm. She called back just a few days later to say that not only did she get us an appointment with the Geneticist, but also had coordinated with the Orthopedic doctor so that we could "head up" after we were done in Genetics. Both appointments were going to be at the DC location so that they would have access to the labs and x-ray machines if they wanted to do any tests that day. She apologized that we would have to drive in to DC, but thought that was the best option so that we could get everything done at once. The whole experience was mind-blowingly awesome! A hospital apologizing for my inconvenience! Someone willing to make all the calls and set up appointments around my schedule! What more could a busy parent want?! It is awesome that we can rely on the genetic counselor to help us coordinate appointments and to work with our insurance to get pre-authorization for things. Plus, everyone gives us their card and encourages us to call with any questions. They even encourage us to email or call anytime - they would rather we ask the question than to work ourselves into a frenzy or google ourselves into anxiety! We are so blessed to have such great doctors essentially right down the street!!!

So, last week we met with the Geneticist (Dr Rosenbaum) and the Orthopedic Doctor (Dr Tosi) at Children's. The genetic counselor for Dr Rosenbaum set everything up for us so that we were able to see Dr Rosenbaum and then go right up to Ortho. Both doctors agree that basically Maggie appears to be a perfectly healthy baby with "limb reduction". Dr Rosenbaum wants to do chromosome testing to see if she has SC-phocomelia, which is on the Roberts Syndrome spectrum. The spectrum is huge, so he cautioned us not to get too caught up in the language of the syndrome because even the doctors have to be careful not to generalize. For instance, Maggie has a stork bite on her nose and also her eyelids and the back of her head, which can be associated with Roberts. But she does not have a cleft palate and appears cognitively on point (she can focus on and follow keys when waved in her face). The bottom line with Genetics is - there is not much for them to do, but they do want to do the Chromosome testing and see her back in 6-8 weeks just to "chip away at the list of possibilities". The geneticist believes her limb reduction was caused by two vascular events, where the blood vessels feeding her arms were pinched or somehow affected during the critical development time period.

After genetics, we went up to Ortho, where they did x-rays of her spine, hips, arms, and hands. Her hips and spine are great. Her arms have the humerus (top half) bone in each arm, some of the bones that make up the palm, and fingers. Each hand is connected at a joint, which is good. The ortho doctor wants to see us back in 6 months for an updated x-ray, but does not see much involvement for ortho. She recommended we see a hand specialist, who thankfully is based out of fairfax (much closer to our house!). But, yesterday, there was a hand specialist at the DC location, who came in to check Maggie out. She agreed the hand doctor would probably be Maggie's primary "specialist" and gave us a hand out with some great websites to check out for resources and community support. 

Maggie can just about reach her mouth with her hands now, so her biggest challenge will be toileting. The hand specialist will likely recommend physical therapy and occupational therapy. According to the Geneticist, there is a great children's therapy center just minutes away from us, which is great too! Through PT and OT, hopefully she will be able to develop her hand/finger muscles to get more use of them. Her right hand can grasp pretty well, but her left arm is significantly more under-developed. We will see what kind of program we get on with PT and then hopefully after a few months will be able to project more of the future. The hand specialist may recommend surgery to "turn" her hands - they are currently like club-hands - pointed backwards. They would also discuss prosthetic options and would be the place to get fitted for prosthesis if we choose that route. At this point, that is very far into the future as we want to develop what she has. Plus, we don't want her to become dependent on something like that when kids born with limb reduction seem to have much success with using what God gave them. 

Thanks for listening!
~Erin

3 weeks old!

I cannot believe our little one has been here for three weeks already. Time flies for sure, but also we have done a lot in these last few weeks. In the hospital, I realized we would probably have lots of appointments and such for her, so I went ahead and made a bunch for me - the dentist, dermatologist - and the kids - well visits and the dentist. We been knocking them out like crazy! I feel like every week my Mint Weekly Summary shows the most used category as "Health/Doctor". Of course, baby Margaret has had her fair share too. The 3-day visit, the follow up for jaundice, the weight checks, and our first set of appointments at Children's.

Our baby is healthy. Very healthy! She spent her first night home eating and pooping every 90 minutes and the jaundice was gone the next day. Everyone who checks her out declares her fine. Her heart, lungs, kidneys, muscles, everything looks good. Bottom line - she is a healthy baby with isolated phocomelia. That is exactly what we were prepared for and everything I prayed and hoped we would get!

Thanks for listening!
~Erin

The "end" of the race

In so many ways, getting to the delivery seemed like a race we were trying to finish. Once we had the baby we would know how healthy her organs were, we would know what her arms look like, we would know what to do, etc. The truth is, in most respects, her birth is the beginning. Now that she is here and we know what she looks like, we know what she looks like - that is it! The point is, in so many ways, we know nothing more than we did two weeks ago! Obviously once we get scheduled with the Genetics and Orthopedics teams at Children's, we will have some more information and will know more than we do today. I talked to the Genetics counselor yesterday and she is going to call Orthopedics, get dates for their availability and give me a call back today to confirm everything.

I cannot even express how amazing I think Children's National Medical Center is. To have someone making all these calls and coordinating the appointments to ensure both doctors (and any others they may suggest we see) know who we are, why we are being seen, and what we need is amazing. Not only do I not have to be responsible for all of those calls, etc, but I also know that it is well coordinated. We will not arrive at the doctor wondering if they have seen the results of a certain test. Everything is kept on record and all the doctors review these records before seeing you, they know what is going on when they walk in the room. And the "charts" are not random notes that may/may not make sense to another doctor. Every visit results in a 3-5 page report sent to all relevant doctors, including the pediatrician, and the parent. If we were to move or switch doctors, I would have 10 pages of information to take on the munchkin's "short stature" from her various endocrinology visits.

Right now, we know she is gaining weight like a champ - thanks to my muscle milk! Her heart and lungs sound good. She looks perfect, all her other bone structures look good. Both arms are short, approximately half the length they should be, her right arm has three fingers, and her left has two fingers. Once we get the x-rays done, we will have a better idea of her bone structure, things like whether or not she will have a palm or just fingers, how much bend she will have, etc. I am certainly excited to move forward with the testing so we know what services she needs. But, right now, I am just thankful she is as healthy as we hoped she would be.

Thanks for listening!
~Erin

She's Here!

When I was pregnant with my other two kids, I could not wait to hit the end of the pregnancy. I was SO ready! With the munchkin, I felt like I was dragging a bowling ball around my crotch for about six weeks before she came. This time, however, I was not ready at all! In terms of preparation, there was little for me to do aside from getting organized and washing the clothes, plus with all the doctor appointments and unknowns, it was easy to push the preparation off for a while. Then, we hit the holiday season and with two little kids, shopping, pageants, and visiting family, time seemed to fly by. Thankfully, I was not "ready" to kick the baby out until just a week or two before our due date. We wanted to her to develop as much as possible in utero even more than the others!

My OB scheduled our induction for five days before the due date, and thankfully my cervix progressed enough on its own that we did not have to go in the night before for the cervadil. We arrived at 7:30, dilated to about 3cm, and by 8:30 I was getting the pitocin. Around 12:30, I had only made it to 4cm, but the baby was down, so the OB broke my water. Over the next couple hours, I layed on each side, got the epidural, and barely made any progress. I could not progess past 5cm. We were having some issues with the baby's heartbeat, where we were having "lates" instead of "earlies" - basically the heartbeat should drop during contractions (early), but our baby's heartbeat was dropping after contractions (late). So, the OB decided to put a couple of monitors on the baby directly, one to measure her heartbeat since she was not staying in place for the monitor to keep good track of the heartbeat and a second to measure the strength of the contractions. Turns out, the baby was bouncing up and down and would not really lock into place. So, they pumped my uterus full of fluid to "float" the baby back up hoping she would re-engage. The nurse left saying she would give it about 30 minutes before checking me again so we wouldn't be disappointed if I was still at 5cm.

Not 10 minutes later, I looked at my husband and said "I think the nurse should check again", so he ran out to get the nurse. She lifted the blanket, took one look, and said, "no need to check, I can see your baby's head!" Then, she called another nurse to help her prep the room, the doctor to rush over, and the neonatologist. When the OB came in, she said she wanted to wait for neonatology, but that the baby was coming quick so I was not allowed to sneeze, cough, or laugh! As soon as neonatology arrived, I gave it one good push, and voila! Baby!!!

Margaret ("Maggie") Catherine

Born January 17, 2012 at 5:44pm

6 pounds 15.5 ounces

19 inches

Thanks for listening!
~Erin

What is it if you don't have a head?

My kids are inquisitive. The princes especially so. Her questions amaze, confuse, blow me away, and drive me crazy. I try to answer her questions honestly and completely because I know she genuinely cares about the "why"s and will retain the information. But sometimes I just want to say "why do you care????". Usually I will just cop out by saying "I don't know" or "maybe daddy knows". That last one backfired recently when she asked why "daddy knows so much more than you?". Lately I've started to realize, as exhausting as it is for me to answer all these questions, it must be ridiculously more so exhausting for her brain. I mean, how can a person want to know everything about lighthouses (a 10 minute conversation consisting of at least 15 "why"s) and then immediately ask how dinosaurs became extinct only to switch over to why we have boogers when the dinosaur conversation is over? Those things are not related. And yet they were all swimming around her head, probably among a hundred other things she did not ask that day. It is just truly amazing.

Yesterday we were talking about disabilities. Her class read a book about being deaf and is doing a bit of sign language, so the princess wanted to know what it is called when you cannot hear (deaf), when you cannot see (blind), and when you cannot talk (mute). Then she asked "what is it if you don't have a head?" Weird, but okay. It took a while for her to get how critical a head is, but I think she finally did. I am interested to see what she comes up with next!

Thanks for listening!
~Erin

Perfect Little Saturday!

Our weekends seem to fill up so fast with birthday parties, family events, house projects, errands, etc that we rarely have a weekend or two looming with nothing on the schedule for Saturday. This weekend, however, was one of those fabulously empty weekends! The princess has been talking about flying and asking how things fly recently, so I decided we would get up Saturday and head downtown to check out the Smithsonian Air and Space Museum. It was just the four of us, no schedule, no worries about meeting up with anyone, so we got up slowly, packed up some lunch, and hit up Dunkin Donuts (or "DD" as the kids call it!) for breakfast.

The museum was awesome. It was our first museum experience and we made it very low key, bypassing the tours and shows, just letting the kids walk around and look at stuff. Obviously they cannot read and we did not spend much time reading the placards to learn. But, they did learn just by looking and hearing little snippets. We got to check out the lunar lander, see astronaut suits, touch a moonrock, look through telescopes, check out planets, play with a prism, and tons more. The kids favorite part was seeing Amelia Earhart's REAL plane! When the princess was a baby a friend of mine gave us a book "You Can't Do That Amelia", which is a kids book about Amelia Earhart from childhood through her infamous plane ride across the Atlantic. We have read the book probably a hundred times and every time we talk about being brave, Amelia Earhart is the reference we all use for bravery! It was awesome to see how excited the kids were to see her statue, her flying goggles, and of course, her red plane.

After walking around the museum (we only stayed about an hour to an hour and a half), we headed back to the car to get our lunch. Turns out the parking space we got was right next to this gorgeous, big autumn tree. So we sat under the tree with the brown, orange, and yellow leaves and ate lunch, played in the leaves, and ran around the beautiful buildings of DC. It sounds cheesy, it felt cheesy, but it also was amazing. Taking the time to enjoy beautiful weather and beautiful scenery with no cares to the time or a schedule was phenomenal.

After getting a second wind from lunch, we headed up the street to the Natural History Museum to check out the dinosaurs. There is so much to see in this museum, we will definitely be heading back there sometime soon. But, for Saturday, just the one exhibit was enough.

We are so blessed to live so close to DC that we can make a quick trip down to check out all of these (FREE) museums. I am glad we took advantage of this on Saturday. It was the kind of day that was "nothing special" yet one of the best days I have had in ages and I am glad to have a place to document this memory!

Thanks for listening!
~Erin

The Selection Phase

I love our daycare/preschool, I like the school, the administration, and most importantly all of the teachers. At this point we have been there almost 3 years and while that seems like a short amount of time, we have really had an opportunity to grow a lot here. The munchkin started out in the infant room, moved up to the mobile infant room, then over to the toddlers room, which is where the princess started her journey at the school. They had the same toddler room teachers, the same two-year old room teachers, and they will have the same three-year old room teachers. But because of teachers moving around to different rooms and the fact that the classrooms of same ages come together on the playground, in the morning, and in the afternoon, we have been able to get to know all of the teachers. And we love them, I could not be more thrilled that we found this tiny little church daycare. Sadly, we are hoping to move next summer, which means big changes. The baby will never go here. The princess will leave her friends and start kindergarten. The munchkin will have a totally new school for pre-school, one where she does not know the kids or the teachers, one where her sister never paved the road for her. I am scared because she is the shier child, the more reserved one, whereas the princess  had no problem making a name for herself (in a good way!). The truth is, she is will be fine. And if she is not, we will find a different preschool. The problem is me, how will I keep my fear and my reservation from holding her back? I have noticed more and more recently that I feel more affected by things that happen to or around my kids than they do. If a child tells one of my kids they do not want to be friends, I hear the story in the same tone of voice as I hear about playing on the playground. So I try not to pry and make a big deal about it, because if it is not a big deal to my kid, I am not going to push that on them. But inside, my heart is racing. Why does that kid not like mine? What did she do? Is that kid a bully?

I asked today at the princess's parent teacher and they said it is normal, a part of the selection process, where kids select people they want to be friends with in life. It is totally normal. And all of the kids are friends and get along. There are no cliques, no issues, no bullies. It is just life.

Thanks for listening!
~Erin