Monday, July 30, 2007

Long update-MRI results

Its been a while since I've posted (I'm sorry) but its for several reasons. First, because my router for my laptop crapped-out on us and we just got it fixed last night. And secondly, its been an emotional week for me and my husband and we needed some time to sort through some things. Let me explain.

I went to TX Children's Hospital for the results and didn't exactly get good news. The MRI & ultrasound concluded that my baby has Schizencephaly (pronounced Skiz-en-sef-all-ee). The pediatric neurologist showed me all the digital images of my son and he pointed out a spot where our son has a small "dip" on the outter side of the left ventrical in his brain. This brain anomaly can not be repaired with surgery, its a malformation in the tissues of the brain. The dr. said that our baby can and will live, but there is a great possibility that he may suffer from paralysis on one or both sides of his body, have a decreased muscle tone, and/or have a seizure disorder. Oddly enough, of these three things the seizure disorder is the only one that doesn't scare me. Because I, myself, suffered from Epilepsy for 10 years. This December will be 13 years that I have been seizure-free and med-free. So if my son is going to have similar issues with seizures I know I can help him and we will be able to get through it together. The pediatric neurologist that gave me these results is partners with MY old pediatric neurologist that still practices in the same hospital. So he said that seeing that I was successfully treated, and my seizures were controlled with meds, there is a good chance that our son's will be too. I asked if my past with Epilepsy had an influence on this pregnancy, and he said "As easy as it may seem to connect the two, no. And there's no real way to know if he'll have seizures (or any of the other neurological issues) until he's born, and he begins to reach mile stones." So basically, we'll just have to wait and see. (Which seems to be the theme to this pregnancy...)
During the appt the dr. told me that he is currently caring for a patient (15 month old little girl) that was diagnosed in-utero with the same kind of schizencephaly (unilateral cleft) on the same side of the brain as my son. And she is walking, talking, shows no sign of having seizures, and she is fully funtioning as a "normal" 15 month old little girl should. She does have a slight turn-in on her right foot when she walks, but its nothing that needs surgery or corrective braces for. It just may be that since she just learned to walk, she may be a little lazy on keeping her feet perfectly straight and she'll more than likely straighten it up on her own. But even if she doesn't, its not very noticeable and it doesn't inhibit her from doing anything. Hearing this positive outcome about the little girl does give me some hope that my son just may beat the odds too. I just pray that this is the last scare for this pregnancy. I can't tell you all how much I just want my son to be here and be ok. We pray every night out loud so God and my son can hear us and know that all we really want is the best for him. We are just going to have to do our best to give him the best life we can, like any other parent would.

I don't doubt that God knows what He's doing, I just wish He didn't have to test us so often.

Since the results appt. I've had an Ob/gyn appt that went ok. I did have protein in my urine and I also had an elevated blood pressure. (Beginning signs of pre-eclampsia) And today I had an appt with my Maternal Fetal Med. Dr. for an ultrasound and my urine tested clear but my blood pressure went a little higher. Which she's associating with my nervousness about the schizencephaly diagnoses. The ultrasound went well. My SIL & 12 yr old niece went in with me. The sonographer was really sweet, she took her time measuring everything, and explaining what it was that we were looking at so my niece really enjoyed the experience. She said she didn't expect to see much and she ended up getting a nice little lesson in anatomy. But anyways... The ultrasound went ok, he is still head down face down so I didn't get but only one picture, and it happens to be of his boy-parts which he's not shy about showing. And we got some video added to our new VHS tape. Ya know, I now have a full 6 hour video of all the past ultrasounds (including 2 attemps of a 3d u/s.) And this visit we started a new 6 hr tape...

Speaking of 3d ultrasounds. I went back for our 2nd attempt for the 3d u/s and he was head down, face down. She did video some of it, but we were unsuccessful in getting him to flip over to face us. We tried everything from sitting with my knees up squishing my lower tummy, to pressing on his legs & feet to make him mad and it didn't work. We didn't get a single picture that time, so the nice girl gave us the VHS video and didn't charge us. She said she couldn't charge us because we tried twice, and in the price we were suppose to get clear pictures, and a 20-30 minute VHS and DVD. And all we got were the 3 good pics (previously posted) and VHS tape. So today I took her a gift card as a little thank you, because she sacrificed a few early hours on a Saturday morning and she stayed late one Friday. Whether she was on the clock or not, I don't know, but either way we were still thankful that she didn't charge us the full price for the 2 attempts.

My next Ob appt is Aug 6th, and my next MFMD appt for an u/s is Aug 20th. And I should have 2 more ultrasounds before our scheduled c-section.

Friday, July 20, 2007

MRI & ultrasound 4/19

Yesterday I had my appointment at Tx Children’s Hospital for an ultrasound & fetal MRI. The ultrasound was first. Before we started the u/s tech asked what all is going on with this pregnancy that we already know of. I told her I have a cerclage (stitches placed in wk 10) in my cervix, I’ve had 2 episodes of unexplained bleeding (in wk 15 & 16), strict bed rest for 13 weeks (w/7 more to go), I have 3 fibroids in my uterus, we know that there is velamentous insertion of the cord, and we just found out there is a mild case of ventriculomegaly. She stopped, glared over at me with this smirk and said sarcastically, “So you’ve had an EASY pregnancy, haven’t you?!” I was like yeah, REAL easy. My SIL went in with me, and got to see her nephew-to-be. Of course he had to be in a position where we couldn’t get the measurements that we needed, so she just moved on to measure other parts of him. He was head down, way down in my pelvis, facing towards my back. After about an hour into the ultrasound she was done looking at everything else. So in order to finish the scan she had to measure his head, but the only way to get that measurement was to stand up, and press the u/s probe deep into my pelvis. It hurt so bad. I told her it hurt and she apologized and continued to dig the probe deeper, as if she needed to get under my pubic bone. I could feel the tears wallowing up in the corners of my eyes, it hurt so bad. I took the pain as long as I could and she finally stopped not a minute to soon. She stepped out and got the Dr. to review the pics she took. He then proceeded to rescan and thank God, he was so SO very gentle. And my baby must have appreciated his kindness because he moved a little to face us and we were able to finish the scan.

Once that was done it was time for the MRI. It took about 45 minutes, and it was very uncomfortable. The tones & beeps were so loud it vibrated my insides and it stirred him up inside. The nurse doing the scan kept chiming in telling me to try to stay extra still, and I was, but my baby was moving around so much my belly was moving. It was so hard to stay still for that long, but we made it. I got dressed and the Dr. came in and said if he didn’t call me tomorrow he’d see me Tuesday to review the results. (My appt to get the results had to be rescheduled to Tues. 7:30am) He also told me that he didn’t have exact measurements yet from the u/s or the MRI, but that just looking at the images with the naked eye, but trained eye, he didn’t see an amount of fluid that looked extreme. He said, “IF there is ventriculomegaly, it is defiantly a mild case.” So that made me feel somewhat better, we’ll just have to wait and see what’s to come on Tuesday. Hopefully only good news.

p.s. Today at 4:30 we're going back to my MFMD's office for another try at a 3D u/s.

Monday, July 16, 2007

3D ultrasound

Saturday morning we did our normal morning dr. appointment ritual. We stopped by the donut shop for donuts & chocolate milk, since that's what seems to get our little one bouncing around (which makes for a fun ultrasound.) Then once we were at my Dr.'s office and started the ultrasound she noticed 2 things, 1. He was facing my spine, so all we could see was the back of his head & spine. And 2. He was asleep! That little stinker. All that sugar, and he was still asleep. So she pushed on my belly to give him a little tap on his feet to try to stir him, and he kicked back but was not showing any signs of being ready to wake up. He had his hands behind his head and looked so relaxed. Finally after about an hour he turned a little to where we could see his face, and she was able to get a few pics, but not very clear ones. So, she didn't charge us and she is going to call me sometime this week to reschedule another 3D ultrasound for Friday or Saturday so fingers crossed that he'll be awake and will cooperate. So here they are. They're not as clear as what they could be. Hopefully next week I'll have some better ones.


Here he's a little covered, but you can still see some of his face.
Looks like he's doing the "Elvis lip!"


Little sleepy head.



Oh those cute little cheekies



He gave us a little smile, I love this one!

Friday, July 13, 2007

3rd trimester: Nesting vs. Anxiety

I don't know which one it is... And its very possible it may be both. But I'm getting really anxious. Yes anxious-excited, but more of me is starting to feel anxious-nervous anxiety.

Monday will be my 13th week on bedrest, and the plan is to be here another 8 more weeks. So I haven't gotten a chance to see any baby items in the stores. Before I was pregnant I was anti-baby aisle in the stores, and when it came time to buying for my sister's or friends' baby showers I went straight for gift cards, or I'd shop the end caps. Anything to keep me away from the dreaded baby aisles. But now that it's me that is possibly having a baby (in less than 2 months) I'm freakin out. I don't have anything, and worse I can't GET anything myself. I want so badly to go to BBiesRUs for a shopping spree, but I know that's outta the question. I lay here in bed thinking all day about the the things we need before our little guy makes his big appearance and its overwhelming. Beside 2 packages of diapers and the little clothing my sis gave me (pics shown in a previous blog entry) that's all I have. That's It! I was so anxious Wednesday night I found myself still awake at 1:30am just thinking of the necessities we gotta get. So the next morning I told Richard to please go out and get us a... I think its called a "pack-n-play." It serves as a co-sleeper next to my bed, then it has a changing table attachment, and once the baby is a little bigger it can be a playpen. I just need somewhere safe to lay this baby down once he's home. And Oh, we also need a carseat, and hooded towels & wash cloths, baby shampoo! Oh gosh, I can go on & on... I'm tellin ya, I'm really getting nervous here. My mom is throwing our baby shower after our baby is here, and I was fine with that because I don't want to be laying down at my shower. But now that time is dwendling down, its putting pressure on me and I'm putting that pressure on my husband to get everything ready. He's working on the weekends on the baby's room, but I can't help him and I want to so bad... UGH, I didn't know it was gonna be so crazy. The baby isn't even here yet and I'm already losing sleeptime over this. My sister says I'm nesting. But is it still considered nesting when I'm physically laying here not allowed to get up and clean, shop and/or prepare my house for this baby? What do you think?

Thursday, July 12, 2007

3 hr GTT

This morning I went in for a 3 hour Glucose Tolerance Test. Talk about feeling like a pin cushion, I got stuck 7 times! SEVEN! Now, don't get me wrong I'm no weenie. I have a pretty high threshold for pain, coming from my experience with fertility testing, surgeries, and giving myself fertility injections and progesterone shots. I'm not scared to be stuck. But These. Were. PAINFUL. The phlebotomist warned me by stick #5 that the last ones were gonna make me jump outta my chair, but thankfully I didn't. It hurt like crazy, and now I look like a junkie with bruises on both arms but its all over and I couldn't be more glad.

When I got home I got a call from TX Children's and got good news & bad news. Bad news, they were not able to coordinate the MRI & ultrasound and the consult for the results for the same day. Good news, I won't have to wait to long for the consultation, I can go back the next day to see the Neonatologist & Pediatric surgeon. (I was so worried they'd make me wait & worry the whole weekend.) The scheduling lady said during the consultation the doctors will let me know if surgery is necessary, and if it would need to be done inner-uterine or after the baby is born. (Hopefully neither will be necessary.) So its set.

MRI - Thurs. 7/19 12:00
Ultrasound - 1:30

Consultation - Fri. 7/20 12:45

Monday, July 09, 2007

GTT & MRI

I got my test results from my Glucose Tolerance Test, and it came back a bit on the high side. So I'll have to go back sometime this week to do a 3 hour GTT. But on a better note, my Torch Titers (bloodwork) came back negative for any infections.

I also got a call from Texas Child.ren's Hospital to start my preliminary paper work over the phone for my upcoming Fetal MRI. Now I just have to wait for a call back from the scheduling department to set up an appt. I was told to "be prepared, this is going to be an all day affair." More than likely we'd have to be there at 10am-5:00pm!!! She said it takes at least an hour and a half for most parts of the day. Which include:
Sign-in & prepping
the Ultrasound
then the MRI
and lastly we'd have a sit down consultation with a Neonatal and Pediatric Surgeon.

I trying to stay optimistic everything is going to be ok, but the thought of speaking with a Neonatal & Pediatric Surgeon has me shaken up. Right now its just a sit down consultation, but really the thought of surgery on my baby... I can't seem to swallow that. I guess my hormones have me a bit on the emotional side, but I'm still trying really hard to hang on to the chance that this will all blow over and our son will be ok. God, I hope its all gonna be ok.

Thursday, July 05, 2007

little rewards

Finally, a little good news. I just got an exciting phone call from my MFMD's office.

Monday I left my info with one of the front office gals, and I finally got a call back regarding a 3D/4D ultrasound. She said the best time to do it would be 27-30 weeks, and she asked if we wanted to do it tomorrow! I was thinkin, "Oh my Gawd!! Tomorrow? Its to soon!" Then it dawned on me, "Hello ding-dong I AM 27 wks 1 day."

So I asked if we could do it next week. I wanted to put it off for a week because I really wanna see pudgy cheeks, and cute fat baby face. Monday he weighed 2 lbs 1 oz and ya can't expect much pudge yet. So its set. We have our appointment for our ultrasound to be done next Saturday the 14th @ 10:15am. I know that still won't give him much time to pack on the lbs, but since I got pics from Monday's u/s, next week will give him a little time to grow.

I am so excited. I mean, I'm really, REALLY excited. I know we've had tons of ultrasounds with this pregnancy already, but this will be my 1st 3D u/s and I SO can't wait!

Monday, July 02, 2007

(Mild) Ventriculomegaly???

My plan for this morning was to get my Glucose Tolerance Test done, in time to go to my Maternal Fetal Medicine Dr (MFMD). appt for an ultrasound, then see my Ob/gyn after to discuss my previous appt & do a Ob check-up.
It all started out well. I got the GTT done, went in for the ultrasound and the baby's heart rate was good (146 bpm) and he weighed in at 2 pounds 1 ounce. His foot, from heal to toes, measures 2 inches. He was showing off as usual, and gave us a big opened-mouth yawn, he even had his eyes open! Oh, and my Dr. gave us a picture of the strands of hair that can already be seen on top of his head! SOoo cute! (I will post pics later.)
My dr. measured everything, and all was normal except for the fluid around one of his ventricles in his brain... The normal range of fluid is a 1, and he's measuring a 1.2-1.3. Right now its a "mild case" but the lets just say there are a lot, A LOT, of scary things that can become of this... Absolute worse case scenario, we could lose him. I'm going to make this next part of my blog entry vague because I'm trying to keep my stress level down, and trying not to cry. If you want to learn about what he (might) have you can goo.gle it... Its called "Ventriculomegaly." I will say, I am scared. I love his little boy with all my heart, and as his mommy I want nothing more than to protect him and for him to be ok. I DO have extreme faith in God, that everything will be ok, but that doesn't stop my tears from falling. I hate that this is even an issue we are up against, but I know that if "He leads me to it, He will lead me through it." I know you all have been praying, and I couldn't be more thankful. Please keep sending up the prayers for my little boy.
My last appointment that we went to (that wasn't planned) was back to the lab for more extensive blood work. My MFMD needed "TORCH titers-pronounced 'tighters' " drawn and this was to see if I have any kind of bacterial or viral infections present in my blood that we don't know about, that may have crossed over into the baby therefore causing this elevated level of fluid in his brain.

My next step is: My MFMD is going to refer me to have a Fetal MRI done at Texas Child.ren's Hospital in a week. That way we will be able to see what this fluid is going to do from now until then. Two weeks from then, I'll be going back to MFMD for another ultrasound to see if there was any change from the MRI till then. I guess so we can try to detect a pattern to see if its getting worse, better, or staying the same over a 3 week period of time.

My job for the next few weeks is: Try to stay calm, optimistic, pray. And try not to stress about the unknown. God has His plan for him, we just have to trust Him.