Neonatology Consult

This was a meeting with the Chief of Medicine of Neonatology and an RN coordinator/social worker.  We discussed the plan after birth and were given handouts about Aliya's condition.  We also got a tour of the NICU.  We'll be able to hold Aliya right after birth for a few minutes and then she will be taken to the UCSD NICU to stabilize her.  Once she is stable, they will send her to Rady's within a few hours.  I will be able to see her right before she leaves.  I asked if I would be able to discharge early and it sounds like I will be able to be there for her surgery.   They sounded hopeful and positive about her survival.  Today is February so we made it to February! In 2 days, I will be 34 weeks along which is a huge milestone for survival.  Now if the babies are born, they are just as likely to survive as if they were born full-term! My next goal to make is 36 weeks, because then there is a good chance Avery will not have to go to the NICU at all and be able to go home with us.  I have another dr appointment later today so will have another update then.

Growth scan on Jan. 24th

Basically the girls are 3 lbs 12 oz (Aliya) and 4 lbs (Avery).  Their weight has stagnated and they're below average but not where they have to deliver them or anything.  Their heartbeats are good. 
There was an issue w/ both of their placentas.  I guess the placentas are kind of "tough" where the blood isn't as flowing through as easily and there's high resistance in their umbilical arteries.  Normal is 3, theirs is 3.77, and they have to "do something" if it reaches 4.  Besides that, Aliya's other organs are formed and normal so that's good!

I am 33 weeks along today and not feeling that great.  It's just constantly uncomfortable or painful so I have to continually change positions, or I feel nauseous, or I'm having contractions, etc.  Always something! So I'm kinda cranky =/.  It's just about taking one day at a time right now.  I can't believe I will be full-term in just 3 weeks. Crazy. 

Neonatology consult tomorrow!

OB Appt

This week was pretty uneventful except that Saturday I started having some pre-term labor signs like bleeding.  It was continuing and getting worse on Sunday so I went to L&D.  The nurse said to prepare to stay for a few days so I was scared.  Luckily, everything came back really good.  They did a pre-term labor test (fetal fibronectin) that says whether you are likely to go into labor within the next 2 weeks and it was negative! That means I have less than a 1% chance of that happening so it was worth it to make the trip and make the sure the babies are ok and that I have peace of mind for a few weeks.  That means I will make it to at least 34 weeks pregnant which means that one of our babies will most likely be able to come home with us.  We are sooo close... 36 weeks is the average time for twin pregnancies to last. 

At our OB appointment this week, we just looked at the babies' heartbeats and the amniotic fluid to make sure everything is ok there and it was.  And lately we've been talking a lot, planning a lot.  The coordinator there mentioned that we might want to get a postpartum doula to help us out a bit since we'll probably be overwhelmed and exhausted with not only having twins, but one with  a serious health problem.  So I'm going to look into that to see if we can get some help at night so we can get a little bit of sleep in order to deal with our busy days.  It would be so great if my insurance provided something like that.   The dr mentioned that these babies may be born any time now (that's so scary to hear!) but that at this late in the game, they would be fine.  Of course we want them to stay put for at least another 4 weeks but yay!! We've made it to the point that survival is good generally. I have 5, yes 5, appointments to make and be done within the next 2-3 weeks.  Our next appt is Monday, Jan. 24th and it's a growth scan - we will see how big the babies are to make sure they are at healthy weights and probably check to make sure I'm not going to go into labor soon so I'll post again next week. 

Oh yes... we changed the babies' names again.  Aliya Cherene and Avery Blue.  Hopefully this will be the last time.  =)

Fetal ECHO appt

We had a really good appt this Monday.  It seems like the babies have had another growth spurt so they are back on track (see a trend?).  Aliya's heart defects are still the same but they were just able to see them more in detail.  The ventricles have developed to almost normal size and are functioning well.  Although she doesn't have that main pulmonary artery going from her heart to her lungs, her heart has created another connection from her aorta to her lungs so she is still getting the blood flow there.  She has a medium-sized hole in her heart that they just may want to keep open because it's been the reason her heart has been able to function all this time.  They will give her medications to keep that hole and the connections open after birth.  They also finally gave us some statistics - she will 90% certain to have a surgery to place a shunt in her heart after birth.  Her prognosis is 80-90% to make it through this first surgery, which is so much better than we have heard so far.  I KNOW she will make it.  It will be a rollercoaster but she has always been a fighter and has already made huge advancements in utero. 

This week I reach 31 weeks, which is 8 months pregnant! I have small goals for myself and 32 weeks is a huge milestone for baby survival so that's the next goal I am looking towards.  I feel very sure I'll make it to that.  I have good and bad days but have felt great this week for the most part.  My life has slowed down a lot.  I pass the time studying nursing, playing Cake Mania, watching a lot of TV shows and movies, whittling down my to-do list to nothing, and learning Spanish with Rosetta Stone at home (ok, so I've gotten so far as installing it but I WILL become fluent in Spanish).  Cheryl helps out so much with chores, errands, and driving me around. 

The last week or so I have gone through the huge emotional change of feeling very excited and just emotionally preparing for the babies' births.  I think I have held off on "letting go" and allowing myself to get excited, because Aliya's physical hurdles just seemed too overwhelming up until now. 

Next up is we are working on getting our next fetal ECHO set up in 4 weeks.  They want to make sure no fluid is building up around Aliya's heart, etc.  We are also working on setting up a time to meet with Aliya's surgeon to discuss that whole process.  And my next OB dr appointment is next Tuesday, Jan. 18th.  Talk to you next week!

Nearing the End

About a week after the last appointment, I was driving Jordan to school and after I dropped him off, I was feeling a lot of pain from driving.  As I was getting on the freeway, my heart started racing, I started sweating, and then my vision went from blurred spotty to completely black.  Luckily, I had the time to pull over to the side and then started throwing up everywhere.  It was very scary.  I called the dr's office and they told me to go to Labor & Delivery right away.  They found my heart rate high and thought I was dehydrated. 
Since then I've been getting progressively more uncomfortable.  I really don't feel like doing anything anymore.  Even walking from the living room to the kitchen makes me out of breath.  Walking gives me contractions so what else is there to do?

The last few weeks I've been getting almost all of the early labor symptoms.  The last week has been especially intense.  It feels exactly the way I felt about 2 weeks before Jordan was born.  3 weeks in between appointments feels way too long.

Our Fetal Echo was cancelled this Monday, which was so disappointing.  I wanted more information about Aliya's heart.  It was rescheduled for next Monday, the 10th. 
Our appointment today was very informative.  Heart rates for both babies are good.  Rianna is 3 lbs 1 oz and Aliya is 2 lbs 15 oz.  Although they are growing, they are still kind of small and the dr will keep an eye that they continue to do so. 
Both babies are very low and head down.  It sounds like this positioning may be causing cervical changes and contractions because my cervix shortened by 1.5 cm.   They gave me steroid shots to mature the babies lungs in case they are coming early.  I have to have another one tomorrow that Cheryl has to give me and I'm scared! But it can't be much worse than what the nurse did to me today! 
I mentioned my black out episode to the dr and he knew exactly what I was talking about.  He told me that all of those symptoms are because of diminished red blood cells.  That my body is increasing my blood volume so much that when I'm driving, the blood all pools in my legs and can't get pumped up to my heart.  He told me that passing out can happen very quickly so I am not able to drive anymore.  I am still trying to figure out how to see Jordan because that drive is 2 hours round-trip for me to pick him up.  I am also supposed to be resting at home and laying down as much as possible.  This is all very hard because I'm used to being so independent and there is so much left to be done around the house, in preparation for the babies and just in daily errands and chores. 

The goal set by the dr for now is to make it 4 more weeks.  I feel I can do this, I hope I can keep them in there.  Next ECHO is Jan. 10th.  Next dr appt is Jan. 18th.  

Jordan had a great Christmas break and we all had so much fun together.  New Years Eve was very mellow and we went out for dinner and watched the festivities on TV but fell asleep by 11 pm.  We should have partied it up last New Years Eve while we had the chance ;)
Cheryl is thinking about re-enlisting in the Navy and will probably do so.  She will probably have to apply for re-enlistment next month.  Her previous plan was to get out and go to school but she doesn't feel like she wants to do it at this time.  Of course we'll support whatever she decides. 
All for now!

The Best Dr Appt

We finally had a great dr appointment! It was a difficult 2 weeks worrying about Aliya not growing and wondering what they would do this time if she had continued not to grow.  I was not expecting good news because I have gained very little weight in the last month, no matter how much I'm trying to eat.  A possible delivery was one of the options the drs had thrown out there, which is definitely not ideal.   But in just 10 days, both of these girls had a huge growth spurt! Rianna is 2 lbs 4 oz and in the 63rd percentile for growth (big!) and Aliya is 2 lbs 2 oz and in the 48th percentile (almost right on target).  We were elated to hear this and the dr was amazed by their growth and didn't even know what to say! We're so lucky. 

We found out that Cheryl can be put on the birth certificate right away (some hospitals require gay people to leave it blank and then be amended after the adoption process, which may take about a year).  She will also be considered the other parent and will be able to see the babies whenever she wants in parent status.

The dr said that a final diagnosis for the baby will probably not be made until the baby is born and they can see better what is going on.  I can't believe that we are getting near to the end of this crazy journey.  I feel different the last few weeks.  Just getting very uncomfortable, sometimes in pain... it just feels like my body is changing very quickly all of a sudden.  Next up is the fetal echocardiogram on Jan. 3rd.  They will be able to take a better look at the heart and will start making a  plan for what they will do as soon as Aliya is born.  Jan. 4th is the growth scan and high-risk dr appt.  That will make sure the babies are still growing, doing well, and I'm not near labor.  Hope everyone had a wonderful Christmas, as we did.  =)

Update

We have been really bad about updating this the past month so this will be a short, short update on everything.  Cheryl had  her thyroid surgery and they took out half of her thyroid.  It took a week to get back results and they came back negative and so she is cancer-free! She has healed well, although it took awhile for her to feel back to normal since the cyst was so huge and hidden.  That Sunday, I was sweeping and mopping and started bleeding.  We had a fetal ECHO to be done the next morning.  It's complicated because she has 4 heart defects - her heart is in the middle of her chest pointing to her right side,  she has a hole in her heart, no pulmonary artery or valve directiing blood from the heart to the lungs,  and abnormal tricuspid valve.  She will need many surgeries.  An operation in her first days of life, one when she is 6 months old, one when she is 5 years old, when she is a teen, and an adult. 

I was in Labor & Delivery twice that week for bleeding or contractions 3-5 minutes apart.  They gave me medicine to stop the pain with the contractions.  At our next dr appt, we talked a lot about planning for everything.  After our next fetal ECHO on Jan. 3rd, we will meet the surgeons and they will devise a plan for us based on those findings.  Then I had a growth scan... the first appointment that Cheryl couldn't make it, too.  It wasn't a good appointment.  Although Rianna is growing right on target, Aliya is not growing at the same rate.  50th percentile is the average (and where Rianna is) but Aliya is in the 10th percentile overall, and her tummy is in less than the 3rd percentile.  They also told me that her umbilical cord is inserting on the side, rather than the front, and this could be compromising how much nutrition and oxygen she is getting in.  Her lack of growth could also be related to her heart condition.  They will have to closely moniter her and if she starts showing other signs of distress or stops growing, we will have to deliver both babies.  The dr made it seem like the goal is to make it to 30 weeks pregnant, which would be the first week of January.  Very scary.  It's hard to relax at this point and it's terrifying to think that this birth will be happening soon and don't really know how to emotionally prepare for it, especially since we feel like we are going through it alone. 
Next appointment is Tuesday where we have another growth scan and see if Aliya will amaze us and grow a huge amount!