Blessings

Until recently I didn't know about "polyhydramnios," but now I definitely do.  Polyhydramnios means that there is too much amniotic fluid.  Basically the baby is supposed to swallow the fluid and help regulate their environment, although because of Makenna's obstruction, she isn't able to do this effectively.  Leaving me with polyhydramnios, which is fairly common in babies with lung defects. With so much fluid unfortunately comes more weight gain and larger belly measurements.  In my case, instead of measuring 35 weeks pregnant, I currently measure 42 weeks pregnant.  So basically my belly is HUGE and I am getting to experience what it feels like to be VERY pregnant for much longer than average.   It is definitely not comfortable having so much extra weight on your body and it impacts my ability to breathe, eat, walk, and sleep--it can also cause several scary issues to arise.

Another thing that adds further discomfort to this pregnancy is the fact that I have a heart-shaped uterus (technically called bicornuate), which means that there is a slight divide down the center and Makenna is forced to stay on one side all the time.  As she gets bigger my stomach is becoming more and more lopsided!  I have this giant bump on my left side (her head and feet) and another giant bump under my right ribcage (her bottom).  This causes the skin to stretch even more than normal in those spots, which burns like crazy.  BUT on the bright side, only 3 more weeks!

So lopsided!

Up until this week, I was definitely dreading being this pregnant and this uncomfortable so far from the comforts of home.  I didn't want to leave Sadie behind for 6+ weeks and I didn't want to move from place to place while down there (which would happen with the Ronald McDonald House and hotels, since neither could guarantee accommodations the entire time, esp. since it will be football season in Gatorville).  I also didn't want to live out of suitcases for the entire trip while eating fast food at every meal.  Rex and I both wanted a place where we could unpack, cook food, be with Sadie, have privacy, and be comfortable while we were down there.  Yes, I know that is asking a lot, but we have been though a lot and little things like having Sadie or eating real (non-restaurant) food make us feel more comfortable.  Given the difficult times we have been though and the even more difficult times to come, we definitely want/need those little comforts and a quiet/private place to escape at the end of the day. 

We looked and looked, but couldn't find anything to meet our criteria.  Then---miraculously as if sent from God another CDH mom, whose little girl was also treated by Dr. Kays, found my blog!  She contacted me and as we were talking she mentioned where her family stayed during their visit!  We called the apartment complex and sure enough they had one vacant, fully-furnished, two-bedroom apartment available- we could rent by the month and they allowed dogs!  Best of all, it cost the same a night as the rundown Days Inn Motel, but offers so much more!  Our prayers had been answered and it was such a relief!

Another huge blessing this week came from my incredible school!  Even though I am not there this year, my amazing colleagues held a fundraiser for Makenna.  They paid money to wear turquoise in honor of CDH and our sweet baby.  I always knew I worked with incredible people, but I seriously can't get over their huge hearts and generosity.  Knowing they are praying and supporting us during this hard time makes me so proud and thankful to be a part of the school family.  I hope I can one day return the favor.

Thank you again for all of your love, support, and prayers.  I know we have each of you to thank for the blessings that are surrounding us every day.   Makenna will be here in 3 weeks (on Oct. 21st) and I can't wait to introduce our sweet little miracle to all of you!!

Normal Stuff!

After several weeks of worrying we now have answers and are able to focus on "normal" first time parent stuff!  This is good because even though we won't have her for another 6 weeks and won't bring her home for about 10, we only have 3 weeks to finish her room, finish some house projects, get packed for a 6 week trip, and purchase everything we need!  With everything that was going on having a baby shower was pushed to the back burner, so without a shower, we need to pick out and purchase pretty much everything ourselves.  It has actually been really fun, but can be quite expensive and overwhelming as well!  Babies need a lot of stuff (or at least our modern day society thinks they do!).

Having worked in daycares and infant rooms for 12 years I have a pretty good idea as to what we realistically need to function day to day (not much!), but it is easy to fall into the trap of getting "wants" because they are cute or getting things that will just make life with a baby "that much easier" (and there is nothing wrong with that!).  However, because we are both so practical and thrifty we decided to make a list of everything we needed using less expensive brands and then add our wants to the bottom.  Next we went on-line and found the price of each item, we added them up, took off 20% and that was our budget. 

Now I am on a mission to get the same items in the high-quality brands I want for 20% less than the basic brands asking price!  I love coupons, I love sales, and I love saving money, so this mission has been a very fun distraction from everything. 

So far we are doing really well and finding great deals.

Here are a few of our finds!
New Keyfit 30 travel system normally $349, we paid $193 (+ free shipping!)
New Petunia Ergo Carrier normally $145, we paid $65
New wooden highchair normally $220, we paid $150 (free shipping and received $30 Kohls cash!)
6 packs of honest company diapers and 4 packs of wipes - normally $120, we paid $42 (+ free shipping)

It is amazing how much money you can save if you actually take the time to try!  I challenge you to do the same!  :-)
 
Makenna Update: 
Had an appointment yesterday and got to see THIS adorable little face!  She is now 33 weeks and 5 pounds.  She was so active the ultrasound tech was literally having to chase her around with the wand to get anything accomplished.  Another tech that can't get over how spunky she is!  LOVE IT!  <3 

She is also obsessed with holding her feet and putting her hands in her mouth.  She is doing this during every ultrasound so even after 15+ ultrasounds her hands are still considered "suboptimal" on the official report, simply due to the fact they have never been able to see that they are "normal."  I'm guessing her hands are as perfect as she is! 

 
 

I now also have to spend 30 minutes-1 hour each week hooked up to the non-stress test monitor.  This monitors her heart rate and determines if I am having any contractions.  It is actually kind of fun just sitting back and listening to her heart...but the band is SO itchy.  


Her heartbeat was wonderful and no contractions!
Yay!


That is all for now...hopefully we can get her nursery all finished soon and the next update will be a tour of her room!  :-)

Dr. Kays to the Rescue!

At 3:00pm it was finally time to meet with Dr. Kays.  We had been reading all about him for weeks and we were so impressed by his dedication to CDH.  He is genuinely passionate about this defect and has devoted his life to helping children affected by it before, during, and after birth.  People travel from all over the world for his expertise, so we were very excited that he was taking the time to meet with us, review Makenna's case, answer questions, and create a plan of action.

He began the appointment by teaching us all about CDH to ensure we were up-to-speed on the defect.  He told us a lot of what we already knew and some new information as well.   Next, he went over his findings from the ultrasounds and the MRI.  The MRI was remarkably detailed and showed that there is actually more in her chest cavity than we originally thought (all of her intestines, her colon, and maybe a very small part of liver--hard to tell).  Due to the fact that all of this stuff is taking up so much space in the right side of her chest, it is pushing her heart (normally in the center) over to the left.  Her heart is in great shape as far as they can tell; however, because it is being pushed to the left, it also limits the left lung from being able to develop normally as well.   He was able to determine from the lung-to-head ratio that her "good lung" (the left lung) is about 85% developed, but her right lung is not visible simply due to all of the intestines in her chest, so he doesn't know if that lung is developed or how developed it is. 

Next he discussed the spectrum (mild, moderate, severe) and what each of those looks like.  He explained that because Makenna's hernia is on the right side of her body (rare), she is automatically classified as at least a "moderate" case.  This wasn't exactly what we wanted to hear, but he went on to say that as far as right-sided hernias go, he would consider hers "mild" because her liver is all or mostly all "down" (not in the hole). 

After all of that was out of the way he discussed his plan of action for her. He explained that he would be present at the delivery and would oversee her care immediately from the moment she is born.  He will be the only person making decisions regarding her care during her entire stay and he will be on-call to make decisions 24/7 until she goes home, even if he is at home or on vacation.  Once she goes home he will also follow her with check-ups until she is 18!  Talk about going above and beyond! 

Next it was time for him to answer our three burning questions:  "What are her chances of survival?" "What is the chance that she will need ecmo?" and "How long should we expect to be in Gainesville?"

Thankfully it was good news all around!  He said with his care he feels her chance of survival is around 96% and he felt her chance of needing ECMO was only about 10%!  Talk about a huge sigh of relief!  He said she would receive surgery 2 to 5 days after birth and if everything goes how he expects it to go, she should be able to come home after "22  1/2 days."  This means we should have her home by her first Thanksgiving!!  How awesome would that be?!?! <3

We ended the visit with a tour of the NICU, which was very impressive!  They have two rooms dedicated specifically to CDH babies.  The rooms are set up with every machine CDH babies may need and can even be transferred into a sterile operating room (eliminating the need to do risky/unnecessary transfers to a different floor for surgery.)  They also said that she will have a nurse all to herself around the clock until she is stabilized and will share a nurse with one other baby after that.   We will be able to visit 24 hours a day and we can even supply our own natural(disposable) diapers and breast milk for her. 

I can honestly say that with as "at peace" as I felt before, I feel one million times more at peace now! All of our questions were answered, the answers were positive, Dr. Kays is incredible, and I know Shands is going to be the perfect place for our baby girl! 

Oh and the coordinator even offered to let Sadie stay at her house if we can't find a place in Gainesville that allows us to have dogs.  Wow.  Just wow. 

Thank you all for your continued prayers, love, and support.  We are so blessed!

More tests!

Wow, what a day!

After a 5 hour drive, we finally arrived in Gainesville around 9pm.  We woke up at 5am their time (4am our time) and had an MRI at 6am.  As we waited I could feel Makenna flipping and dancing around.  Normally I love this feeling, but this morning I was just praying she would go to sleep.  They said the length of the MRI depends on how still the baby is, I really didn't want to expose her body to the magnetic fields any longer than necessary.  After an hour of waiting and worrying it was time for the MRI to begin.  I've never had an MRI before and expected it to be kind of scary...but it was actually very easy and really cool!  They also let Rex come into the room with me-- I couldn't see him because it was a closed MRI, but knowing he was there made me a lot more relaxed.  We both laid very still for about 5-8 minutes, but then I think she started getting annoyed by the loud noises and beeps because she started moving around like crazy!  Thankfully after about 10-15 minutes total they said we were done. 

32 Weeks!

Next appointment was another level 2 ultrasound.  The tech was incredible and very thorough.  She was willing to talk us through everything she saw and answer all of our questions!  She was also very impressed by my ability to identify most of the gray blobs on the screen, proof  that I've had a *ton* of ultrasounds.  She took pictures for about 45 minutes and then another tech came in.  He looked around and took pictures for about 20 minutes and then the high-risk doctor came in and did the same.   By this time they were all 3 in the room and were working together to get Makenna's lung-to-head ratio as accurately as they could (the lung to head ratio is supposed to help identify the chance of survival). 

After the tests were over, it was time for my third appointment of the day -- first high-risk OB appointment in Gainesville.  At this appointment we just discussed medical history and I became established as a patient of Shands.  Pretty non-eventful.  Although they did say that due to the CDH I am at a higher risk of preeclampsia.  I am pretty confident that won't be the case since the doctors are always impressed with my blood pressure numbers (around 96/64 or 112/70), but good to know they will be watching for it anyway.

After these appointments we went back to the hotel to rest. 

Position: Variable

It's really no secret that Makenna is going to be a very sick little girl when she is born.  I have weekly (sometimes bi-weekly) appointments that make this fact impossible to ignore.  Between my regular OB, the two high risk doctors (one here and one in Gainesville), various ultrasound techs, the genetic counselors, the CDH coordinator, and the pediatric surgeon we talk about her organs, fluids, genes, and chromosomes a lot--but one thing they never talk about is Makenna.  The conversations are always about her liver, her heart, her bowels, her organs....but never just her!

Until yesterday!   

Yesterday's appointment was great.  It just felt normal and right now normal feels so amazing.  All morning I kept telling Makenna she had to face forward because I wanted to see her face on the ultrasound.  For the last several we've done she's always looking towards my spine in the transverse position or hiding her face under my ribs in the breech position.  This doesn't allow us to see much more than an "ear" shot or slight profile.  Rex and I definitely wanted more than that this time, so I begged her to get out of the breech position and let us take pictures. 

Wouldn't you know it, my smart girl listened!  While we were in the waiting room I literally felt my whole stomach shift and BOOM Makenna was head down!  Amazing.  When it was finally our turn we went in and I expected it to be like the last several appointments where they would focus on her bowels, heart, and everything that is going so wrong.  The tech placed the wand on my belly and immediately began looking for Makenna's CDH.  She hadn't seen it yet and wanted to assess the situation herself.  She found the top of her head and moved down kind of quickly towards her stomach and then suddenly shot back up towards her head.  She announced "Wow! Look at that beautiful face!!  Does she have a name yet??"  We told her the name and she pointed out how cute Makenna's adorable full lips are and kept saying over and over again what a pretty little baby she was.  She didn't take CDH measurements, instead took a ton of pictures of our baby.  Not our babies organs...but our baby!  The whole time she took pictures she kept saying how cute it was that she was playing with her feet, opening her eyes, and even pointed out that Makenna already has a head full of hair!  Next she took measurements of the things that really matter, no not her CDH or her lungs, but of her feet (a perfect 3 inches!), her body (a perfect 32 weeks!), and her weight (3 lb. 13 oz--again a perfect 32 weeks!).  She then confirmed what we already knew by announcing that Makenna was - PERFECT!

Once she took about 25+ pictures of our adorable little girl she began doing what she was suppose to do, but unlike the other techs, she actually walked us through everything.  She showed us on the screen roughly where the hole was and pointed out the organs that had gone through the hole - then BOOM.  We watched on the screen as Makenna did another flip and was back in the breech position.  At least she humored my request long enough to get the pictures!  Once she was finished the tech asked for my phone.  She said the pictures were so cute she wanted us to have some of them in "color" (rather than just grayscale).  I don't think she did it on purpose, I think it is just her sweet personality, but it really meant a lot to us that the tech focused on Makenna and not her defect. 

As she filled out her form all about Makenna she got to the "Position" field and instead of typing breech or head down, she typed "variable."  She said Makenna is probably going to be a very spunky little girl because she still changes positions so often (at least 5 times a day), while by 32 weeks most babies have found a position and pretty much stay in it!   This made me happy.  I love spunky.  As a teacher I often request students with huge spunky personalities --- if my child ends up exactly like Punky Brewster or Pipi Longstocking I will be a happy camper.  

After our appointment we celebrated our perfect baby girl with Applebee's and ended the night snuggled in bed with Sadie, watching and feeling my spunky baby bump as she reacted to a yummy chocolate desert and few sips of Rex's hot cocoa.