Marcus Institute Feeding Program!

On Wednesday, we found out that the Marcus Institute and BCBS NC had finally worked out an agreement to allow Amelia to be admitted to the Marcus Institute day treatment feeding program in Atlanta. We’ve been working hard at Amelia’s feeding issues since the first day of our life and we have been at a point where we can’t do any more at home. Amelia hates to eat. She doesn’t like it. She refuses food. She gags and vomits constantly. Any source of unusual texture she vomits all over the place. It’s plain awful. For about a year now, we’ve been working with the Marcus Institute on an outpatient basis and made wonderful leaps. She is now on 100% pureed food. It’s amazing to remember where she came from, and for that we are so grateful. Unfortunately, she won’t chew and has problems with textures. She has never had a cheerio, a cracker, or even a puff. She is solely on pureed food. We need help, and we are going to get it. The program is a 40 day program, but our insurance company only approved us for 24 days (assholes!). Not sure why we were approved for only 24 days, but maybe Millie won’t need any more than 24 days. That would be nice! The program is in Atlanta, so Millie and I will be living there and Brad, Ben, and Sadie will be in North Carolina. It will be difficult, but I know that this program is exactly what she needs to learn to eat.

Late July post

I can't believe it's been a month. I'm really awful at this whole blog thing. :-P

We are doing great here in Atlanta. That being said, I am excited that school starts for Ben and Sadie in 4 weeks. Ben is going to be a "Robin" and Sadie is a "Sparrow." They will both be going to school 3 days a week and for that I am so grateful. I think Sadie will enjoy spending time away from her brother and give her some playmates her own age. I hope that is the case!!

Amelia is doing well - 8 weeks tomorrow!. She is growing, although probably a teensy bit slower than she should. Last Friday at the doctor, she weighed 5 lbs 12 oz, which is quite an increase from birth, but it really isn't. She's probably only gaining 1/2 oz a day and while that is the bare minimum of growth needed, the doctors would really like her to grow more and gain weight faster. Soooo, we are going to add more bottles of fortified breastmilk and see if that does the trick. My goal is do to 3 per day and maybe 4 sometimes. We will know for sure in 2 weeks if that will work. I hope it will! I surely dread the idea of exclusively pumping and I also dread the idea of all formula. I'm in a happy place (although pumping 3 times a day for her is also no easy feat...imagine three kids crying/running around/getting into trouble while you are hooked up to a pump...yup...enough said) with our feeding regimen.

Catching up

Amelia is doing so great at home. Last Wednesday she went to the pediatrician for the first time and she weighed 4 lbs 6 oz! Her little cheeks are filling in (I hesitate to call them chubby, but I suppose you might say that) and she seems to be livelier. I am still waking her up every 3 hours to breastfeed, pump, and feed her a bottle of fortified breastmilk. The whole process takes about an hour, and while it is exhausting, I am hopeful that we won't be doing this much longer. It is much much easier for her to take a bottle and she definitely doesn't tire as much, but I really want to be able to breastfeed her like a normal baby. I don't want to give up just yet!

My parents are still here (going on 9 days now) with no real idea of when they will leave. They were supposed to leave Saturday and when my dad went to go start the car to start packing it up, it made a wretched sound. Yep, some fool stole the catalytic converter off the car. Welcome to Atlanta. So for now, the Honda dealership is still looking for a replacement part and can't find one. Hopefully they will find one soon so my parents can get home!!

Monday is the day!

It looks like Monday is going to be the day Amelia will get to come home. She is doing so well right now, and while things could change, she is on track to be coming home!! She is now 1875 grams (4 lbs 2 oz) and has no more IV. She is eating well from me and from the bottle and she continues to eat more each day. They decided not to fortify my breastmilk because apparently I am making 26 calorie milk! Apparently, most people only make 20 calorie milk, but not me. I'm the milk machine. :-) The NP today she could see a difference in her body size today and even made the statement that her cheeks were getting chubby. Now I wouldn't necessarily call her cheeks chubby...


On a more serious note, it was noted that Amelia had a slight murmur upon admission. Apparently it is very faint and everyone thought it was innocent, but still wanted cardiology to check it out. Yesterday, cardiology came by and did an echo and found a VSD (ventricular septal defect). This is a small hole in the heart and could cause problems later on and require surgery. Ventricular septal defect is one of the most common congenital heart defects. The baby may have no symptoms, and the hole can eventually close as the wall continues to grow after birth. If the hole is large, too much blood will be pumped to the lungs, leading to heart failure. Of course, we hope that her hole will close up and will not require surgery, but for now, she will be followed by cardiology. And just to be clear, a symptom of VSD is not sudden death (for those of you who knew Sarah, you should be relieved). 


Amelia also has some funny little things going on with her. She has hypoplasia of her left pinky finger and hypoplasia of her left 4th toe and pinky toe. It basically looks like they didn't form all the way. She doesn't have a fingernail on any of those and the tips are slightly shortened. Because she has three minor anomalies and one major anomaly (the VSD), we will probably be referred to a geneticist at some point. All those things could be nothing, or they could be something. For now, it's just part of who she is. :-)


I do know that I am tired of going to the hospital and am ready to get her home. My other kids are ready to meet their baby sister!!

Frenectomy

Yesterday, the lactation consultant came in and was assessing us for the trillionth time and she noticed that Amelia was tongue tied. Being tongue tied can cause all kinds of problems latching, eating, talking, even kissing! We got an ENT consult for them to assess the degree of tongue tied-ness and they said that she had "quite a bit of ankyloglossia and they recommend cutting it." of course I consented and it was done at the bedside. She fell asleep in my arms and that is where she is now.

Hopefully she won't gets tired now while eating (one pamphlet made the comparison of trying to eat a bowl of soup with a baby spoon...that is what it is like to be tongue tied) and can latch longer and eat more.

On another positive note, Amelia is now 1830 grams!

6 days old

Amelia is 6 days old today! I am sitting in a chair next to her open crib (she graduated from an incubator to an open crib yesterday!) watching her rest. She is now 1825 grams, so just a smudge over 4 lbs, which is pretty awesome. She is just about the cutest thing ever, with her perfectly round head and teeny tiny body. She is literally a miniature baby.

Her main issue is really gaining enough weight and getting some fat on her body to maintain her glucose and temperature. She is still on hyperal, but they dc'd her lipids today. Her sugars have been pretty great lately, high 80s and 90s. With the decrease in fluids, she needs to eat more, which is a problem. She expends so much energy eating, so she gets tired. A tired baby doesn't make for a vigorously hungry baby. She is tired because she is small. It is a vicious cycle.

Unfortunately, we haven't even begun to talk about discharge. We just wait and see.

More good news, she had an eye exam yesterday (which was very traumatic) that showed no problems and no signs of a virus that could have caused IUGR.

Day 4 in the Intermediate Care Nursery

Amelia is doing well. Her main problems are: blood glucose stabilization, temperature regulation, and feeding issues. She also had an issue with high bilirubin and low platelets in the beginning. Amelia is on IV fluids right now with extra protein and lipids. Her little IV is in her foot. She also is in a little incubator. As for feeding, we are working on breastfeeding, but she isn't really all that into it. She take breastmilk from a bottle super great though. Right now, we are trying to breastfeed (and then supplement with my breastmilk) every 2 hours (and then I'm pumping every 3 hours). It's quite a schedule!

She has also gained 43 grams, so now she is 1743 grams (her birthweight was 1700).

Baby Amelia is here!

Amelia Grace Mitchell was born on 06/06/12 at 11:11 am via c-section. She weighed 3 lbs 12 oz (1700 grams exactly) and was 18" long.

Here is the story:

We were scheduled to be induced for a vaginal delivery on 06/06 at 7:30 am and got to the hospital about that time. They set us up in the room and hooked us up to monitors. Immediately they were concerned that her heartrate was staying exactly the same the entire time. There was no variability in her heartrate at all. It's not really an emergency type of concern, but just a concern. It just shows that she is not necessarily happy where she is. She also slightly decelerated once without any provocation. Finally, I was concerned because I felt like her movement over the past 24 hours had decreased. On Tuesday evening, I mentioned to Brad that I felt like she had not moved as much as she usually did and on Wednesday morning before the induction, I was feeling the same. She just wasn't moving as much. Based on those factors, our doctor told us that he thought it would be better to just have a c-section because the likelihood of her actually getting into distress and then having an emergency c-section would have been quite high. We agreed and we were put on the "urgent, but not emergent" list for surgery. I was wheeled away and given my spinal, prepped for surgery, and was staring at the ceiling of the OR suite all in less than an hour.

Amelia was born at 11:11 am. Her initail Apgar score was 3 (although 5 minutes later it was 8). She was a little blue and wasn't really crying at all. And she was tiny - very very tiny. 3 lbs 12 oz tiny. 18" tiny. But she perked up a little bit and had a little cry and was breathing fine on her own. They still took her to the intermediate care nursery to live for the next couple of weeks.

We do have a quasi-maybe answer for the IUGR though. During the surgery, the OB and resident asked me if I knew if I had a fibroid as big as the baby's head. I was shocked to hear this and said 'no, I did not know." About a minute later they realized that they weren't looking at a fibroid. My uterus apparently has a very thin section and in that section my placenta attached. When it grew, it made my uterus jut out (kind of like a mickey mouse ear), which, I guess, looked like a fibroid upon first impression. So, the uterus did not give good blood flow to the placenta which did not give enough nutrients to the baby, which could very well be a cause of IUGR. Unfortunately, the thin uterus is definitely a problem and the OB said that if I had gone into labor or tried to induce that my chance of uterine rupture would have been incredibly high and if that had happened, things could have been horribly bad. So, I do feel fortunate that I had a c-section: we found a cause (perhaps) and I didn't die during labor. So good news all around:-)

6 + 6 = 12

Yep, that's our new due date. 06/06/12.

You may be wondering why...well, here it goes. First, everything is fine still. We had another BPP and doppler this morning and everything looked great. No worries there. Take a deep breath, everyone.

As some of you may know, IUGR is a strange beast. Lots of people with IUGR have answers for discrepency in size - like preeclampsia in the mother, infections in mama or baby, chromosomal disorders, etc etc. Lots of different things can cause problems.  Still, in a lot of cases, no cause can ever be determined and so that makes it difficult to know how to proceed. In some cases, the baby is just plain small. To quote Ben, "That's the way God made it."

We are still crossing the line between baby is just plain small and baby has an issue that we just don't know about. Almost all the literature in IUGR states that if baby is doing well (passing all BPP's, growing, blood flow looks good), you may proceed to between 37-39 weeks gestation. Well, that's confusing if you can get that far...because how far should you go? Should you go to 37 weeks and just take the baby out then (and deal with the baby OUTSIDE of the womb, perhaps in the NICU or other nursery type setting)? Or should you wait until 39 in hopes that nothing bad happens INSIDE the womb (like death...)? See, it's confusing.

Last week was our growth scan. Obviously the baby grew (or else she would already be out of me). She grew 3 weeks worth of growth and was measuring something like 32 weeks 6 days - (4 lbs 2 oz). That is a 3 week growth in 3 weeks; however, it wasn't enough to keep her on the 3rd percentile and she dropped percentiles to the 1st percentile.

We have two different sets of doctors that we see. We see an OB (Dr. Horton) and have seen him regularly since 16 weeks gestation. It's been awesome to have the same doctor every single time (highly unusual for the type of practice Emory is set up to be). We also see MFM (maternal fetal medicine) specialists, who are consultants (more specialized) to an OB. They are the doom and gloom OB's. They tell you your baby is going to die or that they will be messed up or whatever. They aren't the happy OB's. And that's ok - there is a need for that for sure.

Well, the MFM's at Emory are in the conservative camp. Get the baby out sooner than risk stillbirth. The OB's are not quite that conservative - if everything looks good, keep baby inside. Obviously, this puts us in a tough position. We were previously scheduled for delivery for June 13th (which would have been exactly 39 weeks), but today that MFM fellow (who was out of vacation last week at our growth scan and we had a different one that day) was shocked and basically told us we were "playing with fire" by delaying delivery. The MFM told us to go home and decided what we wanted to do (which I think is stupid....how can Brad and I make this decision?!?). So, we got good ole Dr. Horton to come and see us and we basically talked it over and split the difference. He could see we were anxious about it. We have never called him and not been problem patients except for this one time today. It was apparent that this is the right thing to do and we were all happy about it.

So 6/6/12. Mark your calendars. Here comes another Mitchell!

Still passing BPP's!

Well everyone, I'm 37 weeks 1 day right now and I'm still passing everything and doing well. Once again, the baby can stay in until 39 weeks and June 13th is the date for induction. Of course, now we're looking at a breech baby again, so we'll have to see if she flips. If she doesn't - it's c-section time....otherwise, we'll try for a vaginal birth.

All for now!

No baby today!

Quick note before we head to lunch....

No baby today. Baby 4 lbs 2 oz. We dropped percentiles again to 1st%, but baby is growing and BPP looks good, so she stays in.

Induction date is set for June 13th.

35 weeks 5 days

All is well. BPP 8/8. Baby stays in a few more days. ;-)

Tomorrow Brad leaves for his final radiology oral board exam, which he will take in Louisville. He'll be back Wednesday evening. Wish him luck!! I know he'll do great. He's the best. :-)

Sadie and Ben

This is typical Sadie. Where did it go?

I'm getting angry now. Where did it go!

Oh nevermind, I forgot what I was looking for. Hahaha!

And now for Ben. I'm so cute!

Brother and sister love. Sort of....

I just liked his cross-eyes. ;-)

35 weeks 1 day!

Perfect score!

Nothing else is new. Next Friday is our growth scan. If the baby drops another percentile point, then the likelihood of delivering is well....imminent. She was at the 3rd% in weight last growth scan, weighing in at 3 lbs 1 oz. You must remember that she dropped from 5th% to 3rd% last time as well. So, in order to stay at the 3rd%, we want her to weight 4 lbs 8 oz. In order to get up back up to the 5th, she needs to be 4 lbs 12 oz. That's a whole lot of growing!

Another perfect score!

Yesterday was uneventful. Another perfect score.

Another week and a half until the growth scan....I honestly don't feel like I'm getting much bigger and the size difference between me and another girl my gestational age is astounding! Perhaps that is the problem...too much comparing. But it's definitely hard when you tell people you are 34-35 weeks pregnant and they look at you like you are an idiot. What??!? How can you be that far along?? You look so small!! Thanks lady. :-P

Ben came with me to the ultrasound and he did fantastic! It was a special "mommy - Ben time" and he loved it. He listened and held my hand all in the hospital and then we went to the aviary inside the hospital and hung out for a little while. Super fun!

34 weeks!

Well, we are now 34 weeks. Pretty cool, huh?

Everything looks good. All my BPP's come back great, so other than the inconvenience of going, it looks like we're still at just having a small baby - which is awesome!

The MFM today told me that we could possibly go to 39 weeks, instead of the previously discussed 37 weeks. I am super elated at this news. She said that there is really no literature that says that 37 weeks is better than 39 weeks, as long as the baby is growing and still doing great. That means that delivery could be as late as the week of 0June 14th!! Super awesome. Of course, that could all change with one bad BPP or one bad growth scan, but the possibility of it is pretty cool.

No baby today!

I say things like it is - and there is no baby coming out of me today. Woo hoo! 33 weeks 1 day pregnant. Woo hoo!

We had our growth scan today (always nerve wracking) and she grew. Yay!! Not as much as between 27 and 30 weeks, but she still grew. At 30 weeks 1 day, the baby was averaging 27 weeks 1 day - so she was exactly 3 weeks behind on her growth. Today, at 33 weeks 1 day, she was averaging 29 weeks 3 days. Her weight is 3 lbs 1 oz (1377 grams), and that is also ok (not great, but ok). She was the 5th percentile for weight before, and now she is the 3rd percentile. Our doctor (the MFM fellow) was good with everything. All the dopplers and everything else looked good, so she is pleased. Keep on keeping on.

Obviously, there is not much to do in regards to the growth. At this point, she is just a really small baby. Perhaps when she is born we will have more answers (and perhaps more questions) in regards to her growth and size. At 36 weeks, for us to get back to the 5th percentile in weight, she'll need to weigh around 4 lbs 12 oz, which is a lot of growth in 3 weeks. So we'll see. Luckily, our next growth scan is AFTER Brad's boards (1 day after, but it's still after), so it looks like we will make it to then.

Yay!! No baby!!

32 weeks 5 days!

Can you believe it? Almost 33 weeks! I am so excited to say that I am going to make it over the 33 week mark. I have no idea if that is some sort of magic number in development, but to me it's a magic number. Woo hoo!

Today was another BPP and it was great. Perfect score! Baby likes to move alot and once again, she is breech. There must be some sort of physiologic issue with me or my uterus because all my babies prefer the breech position. I think of all the ultrasounds I've had, she's only been head down maybe 3 times. Oh well.

I also got my first installment of my steroid shots to help the lungs develop, just in case we do deliver this week after the growth scan. I was expecting her to give me the shot in my arm, but the nurse said that she was pulling the curtain for me. I was like, "what???" She gave it to me in my bootie!! Apparently, she thought my arms were too skinny for the IM shot. Boo. Brad is going to give me my second shot tomorrow. The MFM was super nice and is letting him do it, instead of me driving up to Emory again. I bet he's looking forward to giving me a shot there. :-P

That is it for now. Til another day.

Still looking good!

I didn't realize that I actually had some readers on this blog, but when I didn't post anything yesterday, I got a couple of emails wondering what was up. I promise, if something really important happens, you will get an email. You will hear about it. Facebook. Email. Blog. Phone call. Something. I promise!

Yesterday's BPP was perfect yet again. 8/8. Next week is our big growth scan. This will once again determine whether or not we will continue on with the pregnancy. I really do feel like I have grown, so I'm not particularly worried. I am having trouble bending over and getting up and down, so I know my belly is getting bigger. I am anxious to know "how much" she has grown. I would love for her to have caught up, that that's talking about like 6 weeks worth of growth in 3 weeks, which I don't think is possible, but I can still hope for it, right? ;-) Realistically, we just want her to stay on her growth curve - 5th%.

I am getting steroid shots on Monday and Tuesday to help develop the baby's lungs more - just in case we do deliver next week. It's kind of a one time thing (like you can only do it once during pregnancy), so the doctors had to decide when was the best time and this is when it was decided. We actually convinced the MFM fellow to let Brad give it to me at home so I don't have to go in three times next week. I'm sure Brad is looking forward to shooting me up.

One sad bit of news is that the MFM fellow we have been seeing every Monday and Thursday is changing rotations starting next week (such is the life of a resident and fellow), so we're going to get someone new. I really liked our fellow and am sad we'll have to change. I had the other fellow that is coming on next week in the very very beginning of pregnancy (like at the 6 week ultrasound where nobody thought the baby was going to make it), so I have met her before. I doubt she remembers us, but at least I have seen her before, you know?

Ok, that's it. Other than that, Ben is skipping his naps and being a big mess of a 3 year old. Sadie had her 18 month check up and has quite the spunky side (especially when it comes to her brother). We had our carpets cleaned yesterday, so we are now going to start getting ready for the baby. Yikes!

Ben is riding a bike!

That is right people...Ben is now training wheel free on his little bitty 12" bike. He is quite a bit wobbly and has trouble starting and stopping, but he is riding by himself. We couldn't be prouder. Check out this video.

http://www.youtube.com/watch?v=EJMUKIdfEAo

And on a pregnancy related note, I am still pregnant. Another perfect BPP this morning. I love that I can walk through the doors of the office and have the receptionist say before I even step two steps in, "good morning, Ms. Mitchell. You are checked in." :-)