30 weeks!

I am 30 weeks pregnant today!  Here is a picture of little miss Elise in my belly this morning!

Since my last blog post, I had a rough weekend.  My contractions didn't let up even with the change in medication.  I barely slept and couldn't get much done.  I also continued to have occasional bleeding.  I called into work on Monday and Maternal Fetal Medicine was able to get me in for an appointment.  I met a new doctor, and he switched up my contraction medications yet again.  My highest dose yet and also in extended release form.  We also discussed my blood pressure.  The contraction medication is also an anti-hypertensive, or blood pressure medication.  I am supposed to monitor my blood pressure daily to make sure it doesn't drop too low with all of these increases.  However, instead of my blood pressure going down, it has been going up.  I had quite a few higher readings over the weekend, so the doctor ordered some blood tests to check for preeclampsia.  I've been told that preeclampsia is more common in Trisomy 18 pregnancies.  I also got a work order for reduced shifts, so I will now be working 8 hour shifts instead of 12 hour shifts.

With the new dose of medication, I was finally able to get some sleep, as the intensity of my contractions has decreased.  I also stopped bleeding.  I was able to go back to work on Tuesday and made it through the shift!

I had a return appointment with the same doctor from Maternal Fetal Medicine today.  We discussed my labs.  According to the doctor, it appears that "something's a brewin'!" My labs don't indicate preeclampsia yet, but are trending up to the higher end of normal and seem to indicate that I am possibly headed towards preeclampsia some time in this pregnancy.  He said that it's a good thing that I am already on blood pressure medication (and a high dose at that).  For now, he'd like me to be seen weekly to keep an eye on it.  Also, I'll keep checking my blood pressure at home.  He also gave me a list of symptoms to be on the lookout for.  I feel confident that if I do become preeclamptic, we will catch it fairly early with all of the monitoring that I am being given. 

Poor little Isaac has had a rough few days.  The other day he started talking to me about how he was afraid to get sick and die.  I tried to explain to him that most of the time, if he got sick, he would get better or the doctor could help us make him better.  I also talked to him again about the fact that he can't catch what baby Elise has.  We discussed it again the next night at dinner, and he still said he was afraid to get sick and die.  Daddy asked him if it was because of baby Elise, and he said, "yes."  We talked to him again and tried to explain that he would never have what baby Elise has.  We talked for a while and tried to reassure him, but it's so hard to explain to a 3 year old.  My heart hurts thinking that he has to deal with this, but I know that God won't give anyone, including a little boy, more than he can handle.

"God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it." -1 Corinthians 10.13

29th week happenings...

This last week has been eventful and emotional.

I had to leave work early on Wednesday due to contractions.  They started out that morning at about 8 minutes apart and got closer and more painful until they were about 3 minutes apart when I left work.  I called the nurse with Maternal Fetal Medicine, hoping that they could just get me in for an appointment or increase my contraction medications, but she told me to head in to Labor and Delivery triage again.  So, I went.  I was having contractions 2 minutes apart, all showing up on the monitor (unusual for me with my irritable uterus and my extra stomach fat...this is the first time I've had contractions strong enough to show up on the monitor when I wasn't actually in true active labor).  I was checked...told I was "fine," then I asked if I was completely closed as I had been last week, and I was told that I was actually dilated probably about 1 cm, but that's "normal" for someone who has had babies.  I told her that it wasn't normal for me if I was completely closed last week and dilated this week...that meant that my contractions were causing actual changes and weren't just "irritable uterus" contractions.  Then, later, when the consultant came in, she said to him that I was closed.  So who the heck knows.  Based on that, they sent me home, even with my contractions continuing to be at 2 minutes apart.  Well, that was Wednesday, and this is Saturday.  I'm still pregnant, so I guess that I wasn't really in labor.

I called MFM and they prescribed me a new dose/regimen for my contraction medications.  I will now be taking the shorter acting form and will be taking it 4 times a day instead of once a day.  I hope it helps.  So far, I have seen some improvement a few hours a day, but have been continuing to have strong, consistent, painful contractions and occasional bleeding.  My contractions are often 3 minutes apart for hours on end, and I'm just exhausted.  I feel like I must come across as a complete wimp to my coworkers, my boss, and everyone else, but I don't have the emotional energy to deal with that right now.

In the last week we've also met with our pastor to discuss baptism and funeral arrangements.  We've also talked to a funeral home.  It's difficult to do these sorts of things, and by no means are we giving up on Elise, but we had no idea what decisions or costs we would be faced with, and wanted to be somewhat prepared.

One thing that I haven't talked about much, is how this is affecting our other two children.  Our 1 year old doesn't understand much.  She will lift up my shirt and pat my belly and say "baby."  She also gives me hugs and wipes tears from my face when she sees that I'm upset.  Our 3 year old is taking this a bit harder.  One day when I was crying, he asked why, and I explained that I was just sad because I don't want baby Elise to die.  He told me that she wouldn't and not to cry.  He has also developed a "boy" in his tummy that he is growing (like I am growing a baby), to protect Elise.  He talks about that boy almost every day.  He says that he protects Ainsley, and this boy will protect Elise.  We try to be open and honest with our kids about what's going on, but I'm not sure there is much we can do to prepare them for what will happen.  Although, to be fair...I don't think there is much Matt and I can do to prepare ourselves for what will happen.

Elise is still moving around in my belly.  I had my glucose test to screen for gestational diabetes this morning, and she went nuts after I drank that gross sugary drink.  Luckily, I passed, so I can continue to eat yummy, sugary food when I want to feel Elise move!  Her movements seem to be getting stronger.  She still has days where she barely moves, but when she does move, she really packs a punch!  I cherish every wiggle, kick, and punch.  I love the times at night when I can lay down and feel her moving and talk to her.  Each little interaction I get with Elise gives me the strength to move forward down this road of "what if's."

"Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint" -Isaiah 40:30-31

28 week ultrasound and appointment

As of today I am 28 weeks and 3 days pregnant!  This past week we had our 28 week ultrasound and appointment.

Here is a little peek at our sweet Elise--

Matt and I had a wonderful time watching Elise move around during the ultrasound.  We were so happy to hear the results, too!  There was plenty of positive news.  First off, no further defects were found (we continue to be excited about this because we were told it was likely that they would find more problems with Elise as she got bigger and her body systems were more visible).  Also, all of the choroid plexus cysts in her brain have completely resolved, we saw her open up one of her hands (she has had tightly clenched fists in all previous ultrasounds), and we saw her practice breathing!  We are also really excited about the practice breathing because we were told that due to her Trisomy 18, Elise's brain might never tell her to practice breathe in utero, or to try to breathe after birth.

Besides the good news, we also learned that Elise's heart defect might be larger, but it is still not concerning at this time as something that should cause death quickly after birth.  We were told that due to her Trisomy 18, it is not likely to improve or close on its own, and would probably lead to heart failure or pulmonary hypertension if she survives long enough.  We will deal with that hurdle when/if the time comes.

Elise is now officially showing growth restriction, or IUGR (Intrauterine Growth Restriction).  This means that she is measuring in less than the 10th percentile in growth for babies her gestational age.  They estimated her weight at 2 lbs, which puts her in the 6th percentile.  While this is not good news, it was expected.  Elise had been dropping in growth percentiles every ultrasound.  Also, IUGR is very common in babies with Trisomy 18.  We are thankful that she did not develop this complication until the 3rd trimester, and remain hopeful that she will continue to grow, even if it is at a slowed rate.

During this visit, we met with Maternal Fetal Medicine and COMPASS, the pediatric palliative care team at our hospital.  We reiterated our wishes for Elise after her birth, and were given materials to begin working on a birth plan to be entered into my chart.

As for me, I have continued to have contractions regularly.  Some have been more regular and painful and have woken me up throughout the night.  I also had a little bit more bleeding this weekend.  However, they checked my cervical length during my ultrasound, and while it has shortened, it is still at an okay length.   I have been able to continue working my full 12 hour shifts at the hospital.

In other news, we were blessed to have a wonderful visit from my mom and sister this weekend!  It was great to see them again, although the time went by way too quickly.

We continue to have good moments and rough moments along the way.  We are trying to remain thankful and in the moment as much as possible, while allowing ourselves to cry and be sad when we need to.  We're making it through one day at a time, every day bringing us one day closer to meeting our precious Elise.

"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." -Deuteronomy 31.8