perfectly short

We saw the perinatolgist today. Titus' limbs are still measuring short but they are growing. Still about 3 weeks behind and in the 5th percentile.  They said he would get another echo cardiogram today but the peri said he didnt feel the need to. So they just measured him and the doc messed around with the 4 D ultrasound for a while. That was a treat, I had never had one and wasnt about to pay for one at some private place.  This is still a bit early for good 4 D images. They fatten up quite a bit by 28 weeks but it was fun to see what he sort of looks like. I am 26 weeks today.

Its been decided by the peri that I will deliver at the hospital on the other side of town that is affiliated with my HMO. Because its in network and has an NICU. Titus will need an echo cardiogram as soon as he is born. I asked about the fancy medical school hospital where the pediatric cardiologist guy is but they said they thought it over and its not needed. Im a little disappointed because of my 3 possible places, this hospital is the worst. Its in a posh part of town but as I understand it, their birthing facilities are not as good as the hospital closer to my place or OHSU. At least baby will be well looked after. Its now time to pre register at this hospital and take a tour.

Other than all that, just loving these foster girls. I have the caseworker coming tomorrow afternoon for a home visit. Tomorrow morning I supervise a visit with the girls and their mother as the regular DHS visit assistant is out on medical leave and they cant find anyone to fill in for her. I dont want the ladies to miss out on seeing Mom. This weekend the girls will stay with my parents in Eugene while we head to the coast for a couple of days. Ahh. Car wants servicing and that will have to happen on Thursday, even if I have to cancel some appointments. I hardly ever have time to get my car fixed. I need it every day and its hard to bus around with 3 little ones in tow. My step mom is a child protective case worker for the state of Oregon. She had to sign a conflict of interest form to provide respite care for us. This form had to be signed by her supervisor, the branch manager and some head of the agency in the capital. CRAZY.

My sister in law gave birth to a beautiful baby girl early Friday morning. Jessica Emily H.  7 lb 8 oz.  I wish I could fly to England tomorrow to see them. I might have mentioned before that Brian's sister's husband left her when she was about 14 weeks pregnant. Im so proud of her for doing what she needed to do and being strong these past months. A trip to the UK is certainly in order, whenever Titus gets the OK to fly. Its a long past due trip.

Brian has told the girl's caseworker that they need a new placement by October the 1st. In theory this will give us 6ish weeks to prepare the house for baby. They are on track to be reunited with their bio dad but it can be a long process. This caseworker likes to take things nice and slow. She seems reluctant to commit to moving them in with dad this soon. At present they are still only doing weekly 1 hour visits in a therapy with him. Their non compliant mom is getting 4 hours a week total. It seems wise to me to cut her visits shorter and increase his, as there is limited time and funds for transport and supervision. I will likely start supervising some visits with him just because I want to speed things up a bit.  Anyhow we are really hoping that they can go right to his home, and not to another foster placement  before that happens. We simply cant care for an infant and the 3 special needs girls. Not without help, and we cant afford help. Social services has none to offer.. so there we are.  Ive met with dad and his partner several times now. All I can say is that they seem ok. I know I mentioned most of this before but I just wanted to update and say this is still how things stand. No solid plans for reunification and the clock is ticking. 2 months.

I took the little one to hospital to get tubes in her ears on Tuesday. I had to get her checked in by 5:30 am. Social worker and judge made such a stink about getting mom to these important medical appointments, but she was nowhere to be seen that morning. Fine by me.. stressful enough getting a 3 year old ready for sedation. I met some very nice mothers in the waiting room.. We spent about an hour in a play room while they were getting our paper work in order, so the little one got to play with another 3 year old . This little boy had down syndrome and was so sweet. When his mom asked about my pregnancy I mentioned the baby's markers and she poo pooed. Her son had no markers at all. She is almost 10 years older than I though. We talked about the county services for developmentally delayed children that she gets for her son and I get for the girls. It was nice to have the company and the camaraderie that morning.

Brian and I had lunch at the El Salvadorian place near our house this afternoon. Girls were at their friday visit so it felt like a date. I had chicken Mole and my fill of their fantastic and flavorful hot salsa. The owners brought house made coconut ice cream apon seeing my pregnant belly. It was soo good but now I must have more. Coconut ice cream is not easy to come by in this country. I am getting enough rest. Ive been taking a daily afternoon nap and putting all the girls down. Including the eldest who seems to need the nap almost as much as I do.

I wonder and worry about what we will do after the girls leave and we are reduced to a single income. I put their government check in the bank today and it sure pads things out. To put it bluntly it pays our mortgage and our car payment. Brian's salary takes care of everything else including their food, clothing, and activities. We have lived on his income alone in the past but we have more bills now. Everything that goes along with owning a car, plus its not cheap to have a baby. We will make it work but I really dont want to go back to work. The money I can earn simply does not justify paying for daycare and having somebody else look after my (long awaited) child. I may take in a couple of kids for daycare in my home. I wouldnt mind doing some light elder care if I could take him with me. Trying to put this on the back burner so I can focus on the girls and taking care of my physical and mental health.

The next perinatology appointment is on the 8th. I have my 25 week OB appointment on the 2nd and will have to finally submit to the glucose screening test this coming week. Just the one hour and Ive been putting it off. There may be no more coconut ice cream for me. Horrors. In other pregnancy news, my ribs hurt. Something awful. Ive gone from a 34 D to a 38 DD. I never knew how your ribs expand. Very weird. Other than that, feeling healthy. Hot.. but thank goodness its not super hot in this part of the country like it is elsewhere. I couldnt take it. I hope my friends in the states are keeping cool.

End Ramble, time to feed the children.

a little lighter

The quad screen results came in this afternoon. 

1 in 1000 for Down syndrome

1 in 3500 for trisomy 18

that sure as heck beats the 1 in 20 they had given me just judging by his heart defect alone. I did get measured today but they cant come up with anything really abnormal about me with those simple measurements. They tried to talk me into agreeing to extensive full body X rays after the baby is born, which they would send to some genetic bone specialist at Ceder Sinai. I'm not sure I see the point though. I guess if they figure it out .. it could save one of my cousins or future generations of people on my dad's side of the family from dealing with the same confusion.  The genetics doctor asked some questions about my fertility treatments and confessed that she had recently had an IVF. She is 13 weeks pregnant. I wanted to hug her for sharing that with me. I like her and her staff quite a bit but I don't really want to go there and see them again! I had to be there once a few years ago for my recurrent loss testing results. That was actually much less pleasant than this visit. Being told that they had no idea why I kept losing my babies.  The office is in a creepy basement of one of their smaller clinics. Original 1950's furniture and feels quite Orwellian.

I feel a little lighter in my heart this evening. I still worry about HIS heart. Of course I do. Genetics doc thinks its better for me to deliver at one of the local hospitals with an NICU...  to be on the super safe side. I will leave this up to them to figure out and hash out with the insurance people. Just so long as they don't leave it until too late.

tick tick tock

I went for the quad screen blood draw today. The lab tech was confused and had to call the out of state lab to confirm they would take a sample from somebody past 20 weeks. This lab does these tests until 24 weeks six days.

They only stabbed me 4 times to get one vial. Not bad. Genetics lady said results would be 3-4 days but my guess is that we wont have a result until next Monday. I know this is just a screening and isnt diagnostic. I know I will feel so much better if it comes back with something better than the current 1 in 20. But if its not better.. I wont know what to think. Oh how I wish I didnt have an anxiety disorder. I expect the worst by nature, by default.

But.. a baby is a baby, and hes coming. I mean it looks like I will deliver a live infant when the time comes. So I purchased a new crib, and am allowing people to bring over baby clothes, and a bassinet. Somebody gave my mom a new stroller and car seat combo still in the box. Not what I would have picked but Im not rich enough to turn my nose up at something new and functional. Im considering signing us up for birth classes and tours of the two hospitals that I can pick from.

My in laws hate the name Titus. Brian said "they are very simple people, Emily". I dont think that his name is that far out there.. but I grew up in a liberal hippy sort of small town. My friends born in the late 60's - mid 70's have names like  Elfina, Orpheous, Shine, Sundance and Rainbow. I knew an Arrow, Aura, and a Pheonix.

The little ladies are still keeping me busy. Time to get them up from their nap and get cracking on cleaning and cooking for out of state company that will arrive tomorrow. My uncle the "chicken doctor" and his OB nurse wife. They are retired now. Driving all the way from LA. My auntie has hand knitted baby items for me, I will post pictures after they arrive.

Ms. Emily's wild pregnancy ride cont..

The genetics lady phoned around 4 pm yesterday. We spoke for an hour. She took a detailed family history and since each of my parents has 6 siblings and nearly all of those siblings have children, it took a while.  She was nice enough to phone the cardiologist and get the results of the echo, as they had only been sent to the peri and the OB. It was her feeling that with the heart defect alone, baby's chance of Downs is 5% and that the short arms and legs are curious but cant easily be factored in to the risk assessment. The reason for that is, most babies with Down syndrome have short femur and humerus bones. All of this baby's long extremity bones are short, including the tibia, fibula, radius and ulna. Her feeling is that this looks more like a mild skeletal disorder that runs on my Dad's side of the family. So.. shes having me "examined" by the medical genetics guy in her office. Brian couldn't help but laugh when I told him that I would be measured. We thought of Victorian scientists with an interesting ape skeleton with all their calipers and equipment. She told me to bring in as many of my dad's family members as possible but none of them live in town except for my older brother who seems to have normal limbs. He is coming along anyway in the interests of moral support and science. She went over the whole detailed anatomy scan from head to toe, telling me about all the soft markers that Titus does not have. That made me feel quite a bit better.

I asked about an amnio and she said that its not safe at this point in a pregnancy. Too great a risk of preterm labor and baby is too small to survive. She did ofter the second trimester blood screening. I thought it was a couple weeks too late for that but she knows of one lab out of state that will take samples as late as 24 weeks. Its pretty unusual to do one after 20 weeks but the need does arise every so often. She had a couple of questions for her supervisor about this but I will get the blood work done either today or Monday. I am 22 weeks 3 days. Her hope is that this will come back with a much lower risk of Downs than I currently have just based on the hole in his heart. If not, she suggested an amnio later in the 3rd trimester to know for sure.

Ventricular Septal Defect (VSD)

The little area of concern that the peri had turned out to be fine BUT the cardiologist found a ventricular septal defect. A moderate sized hole in his little heart. Often these close up/ heal on their own, but not always. The larger they are, the less likely to close from what I understand. If  it does not close it will probably require surgery when the baby is 3-5 months of age.

The main reason they sent me to the pediatric cardiologist was to totally rule out a heart defect. Short arms and legs combined with a congenital heart defect points to Down syndrome. Baby boy has no other markers for Downs.. but I'm not sure if that means a lot. We are still unwilling to do an amnio. I intend to speak to the genetics lady in the next couple of days.

This particular heart defect does occur with Downs, but it isn't the kind most commonly associated with it. It is the most common sort of heart defect for all babies, otherwise healthy or not.

The pediatric cardiologist does not want to see me again while I'm pregnant. He said they will give the baby another echo shortly after birth and see where he is at. I am free to deliver at my regular hospital (on my HMO plan) or he said he could arrange it so that my insurance would pay for me to deliver there, at the world class hospital with all the specialists. I guess I will discuss that with the peri or the OB.

This brings up that age old question.. WHY ME? These defects might be common but its still only 1 in 500. Why the shit end of the stick for me, again? I guess one can always be thankful that it isnt worse but that only goes so far.

edit to add some good news

I came home to a new mattress set today. A simmons beauty rest firm pillow top. It feels like heaven. Im prepared to say goodbye to the sacro illiac joint pain thats been waking me in the night. Nice surprise from Brian. Bless him.

The baby has a name. Titus Sebastian Holt.  A strong manly name for a runty little guy with a bad heart!

home

We made it back from California on Sunday morning. The drive was quite a bit longer than I had expected. The girls managed the road trip like champs.. me not so much. That much sitting hurts my back these days.  A pleasant time was had by all. The middle girl is a real dare devil in the water. Little one wanted nothing to do with that f^*king lake and made it very clear. The eldest was cautious but eventually enjoyed herself. Having my parents around was a nice break for me. Some weekend very soon Brian and I will drop off the girls at their house and head to the coast for a couple of days.

I am feeling fantastic. I nasty virus/ head cold had me pretty much wiped out for several days before the trip and several days into it. Now that its gone I have more energy than Ive had for months.  I want to eat everything in sight. Presently craving meatballs and mashed potato, gumbo, onion rings, watermelon, and any sort of fish stew. Lets not forget lamb kabobs.

The baby is active and has a lot of room to wriggle right now. One moment kicking the cervix and the next up near the belly button.

Tomorrow is pediatric cardiologist day. Cant say that I am looking forward to it in the slightest. My feeling is that his heart is fine. I just hate the scan and wait for specialist process. It can ruin the better part of your day and take forever.

just had to take a break to deal with the older girls' temper tantrum. Shes screaming and blubbering because I caught her lying and gave her a time out. DX emotionally disturbed, I think its getting worse instead of better. Her therapist is pretty much worthless. I do feel for her everything is a tragedy.  20 min later and she is still going strong.

I have family coming from out of town and out of state early next week so time to harness some of my new energy and get my house and yard looking decent.

Sorry for the dull post. This is about all that is going on. I will update after I see the cardiologist.