March 11th, 2014- The Homecoming

On Sunday night Russell and I visited the NICU for Ally's 9:30 care time and actually remembered to bring her car seat so they could do her car seat study during the night.  Everyone that we had spoken with the last several days kept talking about Ally being discharged Tuesday as long as she didn't have any more breathing episodes and she passed her car seat test.  Basically, she would be strapped into her car seat for 2 hours with her heart rate, breathing, and oxygen saturation monitors on.  All of these monitors need to stay above a certain level for each for the whole 2 hours- if any of them drop too low, she fails the car seat test and has to wait 24 hours to retry.  If she fails a second time, then she takes a car bed test and she would be released in a car bed instead of a car seat which we can borrow from the hospital.  Usually babies who end up in a car bed stay in it for 3 months.

Monday after dropping off the boys Mom and I showed up at the hospital eager to hear if she had passed.  However, we got some not great news- they hadn't been able to do the car seat test because they couldn't adjust the straps to the right level (you practically have to have an engineering degree to work some of these car seats!).  The nurse for the day was able to adjust them for us and got her set up in her seat around 10:30, so she would be done in time for her 12:30 care time.

Mom and I chose to stick around during the test.  Once the alarms went off when her heart rate went just 1 OVER the requirement, because her hat had gone down over her eyes and she was mad about it!  Then, literally minutes before her test was over, her oxygen saturation level went 1 UNDER the requirement, and Mom and I were terrified that she had failed the test with minutes to go.  However, it only lasted a minute (you can't touch them while in the car seat except to adjust their hat, etc.) and a few minutes later the nurse came over and said she had passed the car seat test!  I guess the rate had not dropped below the requirement, even if it did set off the alarm.

She's ready to rock the car seat test so she can head home!

So as long as there were no episodes the rest of the day and evening, she could go home Tuesday!

Tuesday Mom and I again got to the hospital after dropping off the boys.  I was eager to see the verdict during the night.  When we got in and went to her bedside, we saw a discharge certificate sitting at her station!  She was going home today!

Mom and I had to do a discharge class by video, during which they gave her a shot to fight RSV, which is basically like a cold (which can be very serious for preemies).  They got all the paperwork for me and we went through it together, and then we packed up and Mom met us with the van outside!  We were free!  We picked up lunch and went home to eat, and to try to adjust to this new life.

We had to take Ally with us to pick up the boys that afternoon.  Luke was so excited to see his baby sister out of the hospital, and Ben got to see her for the first time ever.  He didn't seem too interested at first but he's definitely warmed up to her since.  He will kiss her and say "The baby!" (He also steals her hat and paci when we aren't looking.)  Luke has been very helpful, wanting to hold her and even asking to help feed her at times.  He is very good at trying to calm her down when she's crying too (he also did this with Ben, so it's no surprise, just still very sweet).

Our 3 kids- all home!

We will be somewhat limited in what Ally can do and where she can go for the next several months.  Being a preemie, she is more susceptible to illness and the doctors and nurses told us she is not to go out much and we need to be vigilant about germs.  We are not usually those parents who make you wash your hands before you hold our baby (we never did that with the boys) but right now we need to be careful with our fragile girl, so thanks for being understanding.  Thanks to everyone for the meals and offers of help, and your continued prayers.  We have made it out of the NICU, but our Dandy-Walker journey is just beginning.

March 9th, 2014- The First Week

A basic summary of Ally's first week...

Sunday, March 2nd: Happy Birthday baby girl!  (See post on The Arrival!)

Monday: After a fitful night for both Russell and I (me itching all night and regaining my feeling, Russell sleeping on the couch/bed that is sooooo comfy) that afternoon I was freed from all my confines and able to go up to the NICU with Russell, Luke, and Russell's parents.  Luke was so excited to meet his baby sister.  He did really well with following all the rules of washing up for 2 minutes, putting on the gown, and being quiet and orderly the whole time, especially by her bedside.  He was just fascinated with her and so gentle and loving.  After a few minutes, Russell took him out and let his Dad come in, who had been in the waiting room with Ben (he's too young to go into the NICU, and even if he was it would NOT be a good idea!).  She was still in the open crib with a warmer on above her, and had an iv in her left hand and the oxygen saturation monitor on her foot.  She was taking bottles of whatever I could pump and supplementing with formula.  I learned about care times, which is every 3 hours for her when they take her temperature, feed, and change her.  I can be with her 24/7 but care times are the most interactive times- once you put a baby down from care time they ask that you leave them down so they can be resting.

Meeting big brother 'Bubba' in the NICU

They also did a head sonogram on Monday.  I wasn't there for it, but we didn't hear much as a result of it so as of now the hydrocephalus appears to not need a shunt.  We still need to speak with neurosurgery regarding the results and we should be getting another head sonogram and consult with them 10 -14 days from now...whether still in the NICU or as an outpatient.

Tuesday: By now the warmer is off because Ally had gotten too warm so she was obviously trying to regulate her own temperature!  She was also increasing her volume of her feeding and really only getting breastmilk and not needing the formula supplement.  Since I was in the hospital too I was easily able to make it up to the NICU for a number of her care times.  I tried to actually breastfeed her once but she didn't really take to it.

Daddy feeding Ally for the first time.  He got her to eat the whole thing!

Wednesday: This was the day I was discharged from the hospital.  I didn't leave until after lunch so I participated in most of the morning care times.  While sitting waiting for one to begin by her bedside I cried a bit since I wouldn't be able to just come up and be with her anytime I wanted- and I was especially limited because I couldn't drive.

Sometime between Tuesday and Wednesday they also put a feeding tube in through her nose.  She was getting somewhat better about eating but she often wouldn't take her whole bottle, so this way whatever she didn't take they could put down her tube to make sure she was getting the full amount (they called it the 'big girl plan').  It was interesting because they would also use the tube to first bring up anything that was in her stomach to see what she was digesting and how much she still had left from the last feeding, then put it back in her stomach and continue with that feeding.

Also, at one point today when I went up for her care time they asked me to wait before going in to see her because they were moving her iv.  I had thought the whole time how hard it can be to put ivs in (after my c-section my first one had gone bad, and it took them 3 attempts to move it- I usually have pretty good veins too!) so I had wondered how next to impossible it would be to get one into an infant, especially a premie!  It turned out they were putting it into the side of her head.  They said she did great for them while having it done, and for awhile she almost looked as if she had a bow in her hair!

Thursday: This was the best and worst day in some ways.  While I was there for her first care times they gave me some really great news- her volume of feeds had increased dramatically overnight, so they were going to pull her feeding tube and unhook the iv, and if she continued that day doing well they'd take it out completely!  I was so thrilled she was doing so well.  At one care time I attempted nursing again and she actually took to it and got some nourishment, but we did give her a bottle afterward.  She did not eat well for me anytime I tried to feed her that day.  I was starting to worry a bit that whenever she came home I wouldn't be able to get her to eat like the nurses could.  The nurses said sometimes they get really comfortable with Mommy- nice and warm and cozy- that they sleep more easily and don't eat as much.  You need to eat girl if you want outta here!

Friday: At her first care time that I was present for Friday her iv was gone!  She also no longer had an oxygen saturation monitor on, so the only 'hook ups' she now had were heart and breathing monitors.  Also, for the first time her bilyrubin levels had finally started to decline- everyday she was tested and they went up and up, but she never got to the point where she was considered officially jaundice and in need of the phototherapy light.  However, they did tell me that during the night she had had an 'episode' where her breathing had declined, causing her heart rate to decline as well.  This is not unusual for premies, (they often forget to breathe!) but this one was severe enough that someone had to intervene (they often bring themselves out of it on their own).  As a result, she is on a 5 day count down and has to stay at least 5 more days.  However, she is doing so well that they told us we could bring in her car seat to do her car seat test and started talking about her being able to come home if she continued to do well!!  I myself also went to the doctor to have my staples removed.  I have been feeling great and am healing remarkably well.

Saturday: Mom arrives (she had left Sunday before it was decided to do the c-section in order to avoid the snowy weather headed our way)!  She was thrilled to hold her first granddaughter.  Since it is tax season, my Dad works 6 days a week and was unable to come, but Mom used their iphones for Dad to facetime with her.  Ally continued to do well that day, increase her volume even more, and she even nursed on both sides for one of her feedings that day!

With her Nanny!

Sunday: Things continue to go well.  I was able to attend church that morning and go see her several times that day.  We learned that night that she was back to her birth weight of 4 lbs, 5.5 oz.!  They continue to talk about sending her home Tuesday provided there were no more episodes like on Thursday and she passes her car seat study.  Russell and I brought her car seat that night in order for them to hopefully do the study overnight.  We saw another little guy a few beds down pass his car seat study and actually leave the NICU that night and I think Ally got jealous- she did really well for the last few care times we were there for that evening! 

She is doing so, so well.  For being a little over 5 weeks early, her progress and condition continues to amaze me.  I truly believe it is because of the prayers of so many that she wasn't in more serious condition and that she has progressed and improved so quickly, to the point where we are talking discharge on a specific date!  Thank you to all who have been praying for Ally.  Russell and I are very different in that he is overly concerned with everything dandy-walker related- her head size, getting with neurosurgery, her sonogram(s), while I have been focusing on her eating and being able to come home- in my mind, it is first things first!  Hopefully we'll soon have a post with her home coming and then continue our dandy-walker journey as an outpatient.  Thanks again for the prayers especially, and the well-wishes, food, and all the offers of help- we are so blessed to be surrounded by such kind, loving, caring people and we love all of you so so much!

March 2nd, 2014- The Arrival!

So we had a pretty uneventful evening Saturday.  I told Russell to take the boys and let them sleep at home- they were obviously exhausted and needed to sleep in their own beds- and let his parents get some rest too because they had been caring for them all day and THEY were obviously exhausted too!  It also gave Russell a chance to sleep at home and Mom stayed with me at the hospital.  My doctor was hoping I would start labor on my own since my water had broken so I was on the monitors and just waiting for contractions to start back up again.

We all had a pretty good night and the waiting game continued on Sunday.  I was allowed to eat a regular breakfast, but before lunch my nurse came in and we spoke with her.  She said if I was not going to be induced, I really should go to another room and not be in labor and delivery, and sometimes these doctors need me to be a bit 'forceful' if I was serious about having a baby (she was awesome, I really liked her)!  I was so torn.  I knew I couldn't stay like this forever, but at the same time I was worried about being so early and how Ally would do after delivery.  She was doing well on the monitors and I almost wanted to just try and buy her some more time if it would help her, but I knew they wouldn't let me just hang out with such low fluid levels.

The doctor came in just a few minutes after we spoke with the nurse.  He told me that since labor wasn't starting he thought we should start pitocin (my nurse swore she didn't say anything to him before he came in!).  So she came back in and got me hooked up.

And then we waited some more.  Every 20 minutes or so she would come in and bump up the pump level, but I still wasn't feeling anything.  After a couple of hours, she came in and told me that the monitors were showing contractions (again, that I couldn't feel) and every time I had one Ally's heart rate dipped, so they were going to pause pitocin.

My doctor came in and said sometimes this happens when there are low fluid levels because when the uterus contracts it squeezes the cord since there isn't fluid around it to cushion it and that causes the heart rate to drop.  He wanted to put in a catheter that would pump fluid into my uterus and hopefully help with that.

After an INCREDIBLY painful insertion of the catheter, we got the fluid pumping in and the pitocin started again.  About another hour later, the doctor came in again and said she still wasn't tolerating the labor with the help of the fluid and it would really be best to go ahead and have a c-section.

I was so crushed.  I had really been hoping that with it being so early I'd be able to go ahead with a regular delivery at least.  My nurse was great and she came in and talked with me about my fears of the surgery and the needle and all.  She told me that the spinal they would give me was easier and less painful than putting in an iv, and the fact that I wasn't very 'fluffy' would give them a pretty straight shot and it would be nothing.

The anesthesiologist came in and told me about what she would be doing, what I would feel, and that she'd be with me the whole time.  Then the nurse took Russell to get him 'dressed up' and another nurse came in to take me to get prepped.

It was the longest walk I'd taken since Friday getting to the hospital.  I was so scared (and cold) I was shaking when they put me on the table and I was afraid that I wouldn't be able to be still for the spinal.  However, as my nurse had assured me, it truly wasn't that bad and was over very quickly.  They had me lay down before I went completely numb and strapped my legs to the table and continued to prep.  Russell was able to come in a few minutes later in his garb.  He asked how I was feeling and I said, "like my body is made of lead."  I asked the anesthesiologist how could anyone possibly push a baby out feeling (or not feeling, in this case) like this?  I was thinking of my deliveries of the boys and thought it would have been impossible to know what was going on down there and how hard (or even if!) I was pushing.  She responded, "Oh, the body does it mostly for you."  Goodness gracious!

Russell took a selfie waiting to come in.

They got started and Ally was out in about 15 minutes or so.  They lowered the curtain enough for us to see Ally just as she was coming out (and not to be able to see anything else...).  Russell said exactly what I had been thinking, "She's so tiny!"  And her head did not look that big at all.  Russell went with her over to the baby bed where they cleaned her up to take pictures and I looked 'over my shoulder' to watch.  I also saw her get weighed, and she weighed in at 4 lbs, 5.5 oz.  So she came in a little under what the estimate was, but not a bad weight for 6 weeks premature.

I could hear her crying and they said her breathing was doing great so far.  They then took her up to the NICU, and Russell went with her while the doctor finished up with me.  He told me the cord had been wrapped around her neck three times, so a natural delivery would never have worked out.  Even though it was not what I had wanted, it was the right decision and I'm glad it all turned out ok.

Meeting Mommy

The c-section itself wasn't so bad...but I'm not eager to hop back on that table again.  The worst part was at the end- I have never tolerated anesthesia well and as they were 'putting me back together' I started getting nauseous and vomiting- only there was nothing in my stomach to come up.  The anesthesiologist actually had to sedate me for about the last 10 minutes so they could finish- I guess the heaving was interfering with putting me back together properly.  I woke as they were wheeling me into recovery.

My nurse was waiting for me in recovery.  She congratulated me on Ally's birth and how well I had done.  (I told you, she was awesome!)  We waited for the effects to start wearing off and then they took me in the bed up to the NICU to see Ally before they took me to my room.

When we got to the NICU they gave us an update at her bedside.  Ally was doing really well.  She was breathing on her own with no help, though occasionally she would 'forget' to breathe.  She was also feeding on her own without a feeding tube in the nose or mouth (did have an iv, though), and her coloring was great too.  She was in an open crib instead of the incubator under a heat lamp, which was also a great sign.  She had very few things attached to her, so we were really happy with her status overall.

First picture in the NICU

My favorite...holding Mommy's hand in the NICU

Afterwards they took me to my room, and Russell and I slept that night (though my night was a bit restless- the spinal can make you very itchy so I was constantly scratching somewhere, plus I was still getting the feeling back in the lower part of my body).  It has been very different from my last 2 deliveries and recoveries, because Ally is not in the room with me.  I have to pump for her, so I have to remember to do this every 3 or 4 hours instead of having a baby screaming at me to eat at all hours.  I have been able to rest at night, though I set my alarm to wake up and pump.  There also haven't been as many people in and out of my room, since all of her monitoring is done upstairs.  I have had a few nurses in and out for my vitals and to check on my incision and bleeding, and of course my food being delivered and vital records to get her registered, but that's been about it, so I've had more time to rest (especially at night!).

I am finishing this a bit late, and there is much to update, but we will save that for the next post.  Thanks so much for all your prayers and support, and for the calls, texts, visits, emails, etc.  We appreciate all the love and support from everyone so much, especially our parents as they have helped us out with caring for the boys and for me too.  If anyone wants the web address for our meal calendar, it is below.

http://www.takethemameal.com/meals.php?t=MNNX5749

March 1st, 2014- The Scare

Well, here we are folks- in the hospital.  *Just a warning...I tried not to be too graphic in my descriptions of things below but I did describe some physical events that occurred.*

Friday was a normal day at school.  It was also Russell's first day at his new job, so our routine was switching again.  Russell now drops the boys off at school/daycare, and I pick them up after school.  So when the school day ended I picked them up, drove them home, and we met Russell there to go meet his parents for dinner.  

After dinner, we were going to his parents' church and the church where Luke attends Cubbies for a family fun night they were having- inflatables, roller skating, cotton candy and snow cones.  As we were leaving the restaurant, I felt a bit of a gush down below.  When we got to the church I went to the bathroom to check it out.  It wasn't too much fluid, but it did soak my through my underwear onto my pants, but a bit later I felt more and went back to check and it had become a bit pinker and contained a bit more mucus.  I decided I needed to call and ask the doctor about it.

The doctor on call returned my call a few minutes later after calling the hospital.  I told him what had happened and he said it sounded like bloody show and not to worry about it, just to take it easy the rest of the evening.  I felt relieved, because I did NOT want to have a baby that night!

Luke was spending the night with Russell's parents that night so we left with Ben around 8 and got him to bed around 9.  Since Luke wasn't there we decided to try him in Luke's bed since he would need to give the crib up pretty soon to Ally.  He got up a few times but he was pretty tired and it wasn't long before he was asleep.

We stayed up and watched some tv for a bit, and a little after 10 I decided to get ready for bed.  I had just finished up in the bathroom when I felt this strange sensation come over me.  I felt lightheaded and dizzy and hot, and then I felt pain in my abdomen.  I went and lay down on the bed and called for Russell.  He came in and I told him what had happened.  He asked what I wanted to do.  I was laying there feeling some contraction-like pains (not too horrible, but it worried me) and said we needed to call the doctor again.

When he returned my call this time, I explained what I had been feeling.  He said since I was at 34 weeks if I was truly in labor they would not do anything to stop it even though it was a bit early, and I could come in if I wanted to be checked or I could wait and see.  My concern was about the fact that they had wanted to do a scheduled delivery and making sure all the necessary people and things were in place.  He said not to worry, there were always the necessary people on call and they would be able to handle it.  I knew this, but I was just so concerned about it being so early...3 weeks before they had even though about scheduling the delivery.  As I was on the phone, the pains and other symptoms went away, so I told him I was feeling better and would try sleeping and see how things were in the morning.

Russell decided to go ahead and have his Dad come get Ben, just in case we would need to go to the hospital.  I felt awful having to do that, especially with his first time in the 'big boy bed' and he was doing so well (he was actually sleeping parallel to the pillows- so cute!) but Russell felt it was better safe than sorry.

I actually fell asleep before Russell's dad got there to get him. I woke around 1:30 to use the bathroom, but did it in the dark (in the middle of the night I usually leave the light off because there is a nightlight in there and it's all I really need to see by).  I went back to bed, but around 2 I felt another gush.  I went back to the bathroom and this time turned on the light and was horrified- I was completely bloody, through the pad, everywhere.

Russell came running when I yelled, and I told him we 
needed to get to the hospital.  He got me new underwear, a towel, pants, socks, and shoes.  I sat there and tried to clean up and put my contacts in, then finished getting dressed.  I got my coat and got in the car and started it while I waited for  Russell to come out from using the bathroom himself.  Then we took off.

I was terrified.  I thought for sure I had just lost her.  Why else would there be so much blood?  I also wasn't feeling any movement.  We didn't talk much on the short trip to the hospital but I did tell Russell my fears and tried not to freak out and over analyze what was taking place.

Russell dropped me off at the ER and left to park while I went in.  I told the front desk what had happened, filled out a short piece of paper with info, and started crying.  The woman asked if I wanted to walk or be wheeled and I told her I didn't care, just get me where we needed to be.  

I walked behind her crying the whole way.  She took me to the staff elevator.  When it opened we got in and she was trying to press the button to take us to the labor & delivery floor.  It was giving her a hard time for a few seconds and all I wanted to do was scream 'Make it go!  My baby is in trouble!'.  I know it was only maybe 20 seconds or so but it felt like forever and I wanted to find out what was going on.

I got up to the correct floor and they took me back and put me in a gown.  The nurse was really nice and was asking me what happened as she was hooking me up to the fetal monitor.  I got so distracted as she was doing this it was hard to keep talking, especially as she moved it around trying to find where to position it.  By then Russell had come in and we both breathed a huge sigh of relief when we heard it pick up the heartbeat.  What a great sound!  

My doctor then came in.  I had called him on the way to the hospital to tell him briefly what had happened and that we were coming in.  He looked and checked...the leakage was mostly water with some blood mixed in, and I really wasn't dilated at all.  Basically my water was broken and so I would be admitted and probably have a baby fairly soon.  He ordered a sonogram and they took me to a room.  

Russell decided to go home once I'd settled in.  I told him not to worry and I would call him if anything changed.  I wasn't in any pain or feeling contractions so probably nothing was going to happen right away but I would call him if it did.  The nurse caring for me that the monitors were showing that I was contracting about every 2 minutes!  I wasn't feeling a thing so I could hardly believe it.

I was tired and tried to sleep, but it was difficult.  Around 4 
the sonogram tech came in with the machine.  The fluid is definitely lower but everything else looked ok.  Ally's heartbeat monitor shows she isn't in distress (except for the occasional dip, which is normal) and she's handling this well.  
Around 7 I called home and told my mom what was going on.  She said she would come down and could leave around 10:30.  Russell came back around 8 after a fitful bit of trying to sleep at home and had called his parents to let them know (since nothing major happened during the night, we didn't want to wake anyone needlessly).

The rest of the day has been a rather boring waiting game.  I wasn't allowed to eat since I was 'in labor' and no one seemed to be able to tell me much about what was next, except that 
they were not going to give me anything to stop labor since I had made it to 34 weeks (and 1 day).  

Russell's parents brought the boys to see me around 12, which was a great distraction for me.  Luke immediately asked if Ally was here yet, which we had to tell him no, not yet.  I also explained to him that since Ally was a bit early she would have to go to a special part of the hospital and he might not get to hold or even touch her right away, and he seemed to understand that.  He was fascinated by my iv and the monitors on my belly and was terrified at the noise it made when I shifted in the bed- he wouldn't even hug me goodbye because of it.

Mom made it down around 1:45 and she came in and we had a chance to catch up.  My doctor came in around 2:30 to tell me what was going on.

Basically, my labor had stopped.  I never felt the contractions to begin with so I had no idea.  Since my water had broken they felt like they wanted to give me up to 36 hours for it to start on its own, then after that they would start probably start pitocin.  They actually wanted to try to keep her in for a bit if possible to help her with lung development.  She will definitely be in the NICU since she is early, but the length of her stay will depend on her status at birth, plus any complications that develop  as a result of the dandy-walker and hydrocephalus.  The sonogram tech's measurements show her to be 4 lbs, 11 oz., which isn't a terrible weight, but of course it is an estimate.  

So, right now we are playing the waiting game.  We are very thankful to Russell's parents for helping with the boys and mom for being here for a little while to allow Russell to rest some to before the show starts!  Hopefully the next time we update will be with pictures and some real answers to the many questions we have had for the last 13 weeks.

Thanks for the prayers from everyone.  I can tell you all have been praying because this week I've had a real sense of peace that everything was going to work out for our family, I just had to trust and be patient.  This obviously wasn't part of that plan but we will take things as they come.  And obviously many of you have been praying for a natural delivery, because at this point that is what it looks like we will be having unless there are new developments (but obviously some of you forgot the part about 39 weeks!  Just kidding.).

Off to hopefully get some rest and contractions going.  Come on Ally girl, lots of people are ready to meet you...especially Mommy.  

February 21st, 2014- The Update

On Friday yet again I left work about an hour early to make the drive back for my appointment at MFM.  Russell met me there, as usual.  It didn't seem as busy as normal, and we didn't wait long this time to be taken back to the sonogram room.  We had a different tech this time, which I was a little disappointed in- one of the things our doctor had said to us was that our sonogram techs would be able to kind of 'get to know' our baby and be able to tell if and when something seemed different or didn't seem right.

The sonogram didn't take too long, and after she checked with the doctor to make sure all of the images she had gotten were adequate she took us to the doctor's office.  I was disappointed yet again- our regular doctor was out sick so we were seeing a different doctor that day.  It was especially disheartening because we would be getting the results of the MRI and I really wanted to hear from our regular doctor since she has dealt with our case exclusively there.

The other doctor was very nice and answered all our questions.  He told us that the MRI really didn't show us anything significant that we didn't already know.  The one new piece of information that we got was that Ally does appear to have her corpus callosum, but it appears to be small.  Again, they will get a better idea of this from imaging she will have done after she is born and we will have to just wait and see how it may effect her development as she grows.

From the sonogram images from that day we learned that Ally's head is, of course, still measuring large.  The doctor told us there are 2 ways to measure head size- across the top from ear to ear, and then the entire circumference.  From the circumference measurement, Ally's head size is in the 97th percentile- meaning her head is measuring larger than 97 percent of babies at her age.  He told me that he would not be at all surprised if she was delivered by C-section (sigh).

One of the last questions we asked was when we would know about the date of the delivery.  We keep being told that delivery would be scheduled for sometime between 37 and 39 weeks, which is anytime between March 21st and April 4th- a fairly significant window of time.  Apparently I am getting a long term sub for my current position at work and I need to let my administrators know approximately when I will be out.  I would personally like to wait to as close to 39 weeks as we can get, because that means less time at the end of the school year I will have to return for after all of my leave runs out.  The doctor told me that at this point they would probably wait until closer to 39 weeks since there are no other significant issues but that would be more likely determined at my next appointment in a few weeks.

The next day Russell and I attended a prayer summit gathering our church was holding.  At this gathering we both confronted some issues God brought up with us, both together and for each of us personally.  Also, our church body came together to pray for us and for Ally during this time as well, which was very moving for both of us.  As a result of this time, I have come up with 3 things that I am personally  praying for in dealing with the path life has brought us to at this point.

1.  A natural (though induced) delivery at around 39 weeks.  I am not a naturalistic, at-home birth, anti-intervention type of person, it's just that natural deliveries have gone so well for me in the past and honestly the thought of a C-section is scary to me.  It would also mean a longer, harder recovery and some complications with my leave and ability to work when I need to.  I am still holding out hope and praying that a natural delivery is possible. 

2.  My job.  Right now there are so many 'what ifs' about work next year I am so confused about what to do and how to feel. At the same time we have been toying with the idea of one of us staying home next year to care for Ally.  I go back and forth about how I feel about all of the possibilities and am torn to pieces about making the right decision for me, for Ally, and for our family life in general.

3.  I feel really silly about sharing this one, but it's the truth- a close friend.  Not to say that I don't have friends, but I feel that it's been a few years since I have had a 'best friend' to share with and do things with.  My closest friends from high school and college are across the country and across the globe, my Mom lives 3 hours away, and my husband is great but he's also a guy (love you Russell!).  I am praying for God to send someone close in proximity and close in life to me that I can relate and share with.

Thanks so much for your continued prayers and support of us.  This next week should be pretty quiet and then we have an appointment with Terry next Monday and with the neurosurgeon Tuesday to look over the results of the MRI and what it may mean for Ally's hydrocephalus and shunting possibilities (though I have a feeling they are going to say that there's nothing definite they can tell us right now...) and then we head back to MFM on the 17th.

February 14th, 2014- The MRI and the NICU

It's been a busy(ish) couple of weeks, so I'm going to include two updates for you in one (with a few fun bonuses!).

On Tuesday the 11th I went to the hospital to have the fetal MRI done.  After a confusing round of finding a place to park and figuring out where to check in, I made it to the imaging unit of the hospital.  After being asked a ton of questions about my health history, getting into a hospital gown, and making sure there was no extra metal in my body, I was put onto the table on my back, headphones on my ears, emergency squeeze in my hand, and some foam imaging thing over my belly, and inserted into the tube.  I had asked how long the MRI usually took.  They said it depended on how well the baby cooperated; the average was about 30 minutes.

It was hard to tell time in the tube, but after about 20 minutes or so the tech told me he was going to send the images they had up to the doctor to see if they had everything they needed.  About 5-10 minutes later he told me they needed to do some more, so after another round he told me they were going to contact the doctor again and see if they were done.  He then asked if I needed anything.  I asked if it were possible I could sit up out of the tube- my lower back was really starting to bother me with all the weight of Ally and fluid and all on my back.  He said that would set them back, so it would be best if I just stayed put but hopefully they were done.

I guess Ally didn't feel like having her picture taken that day, because we went for round 3.  After sending those pictures to the doctor we were finally done.  Again, it was hard to tell time, but I was probably in the tube about an hour, and it felt like it took another hour for me to sit up on the bed, shuffle to my shoes and get my clothes on- my back hurt so bad and I was very stiff.  Even a week later when I am doing a lot of lifting (mostly Ben, especially in and out of the car) it bothers me much more easily.  I was afraid I would be chair bound the rest of the day, but sitting in the car on my drive to work really helped and I was ok all day.

Friday we were supposed to have an appointment at MFM and find out the results or the MRI, but as most of you know Wednesday and Thursday we got 22 inches of snow!  We were homebound from Wednesday afternoon/evening until Friday, and that was only because Russell's Dad could make it down our street in his 4 wheel drive Expedition.  The MFM office was closed Friday, so the appointment has been rescheduled for this coming Friday.  We will update this coming weekend with those results after the appointment.

However, since the NICU doesn't close, we were able to keep our consultation appointment on Friday.  Russell's Dad drove us and came with us to the top floor of the hospital where the NICU is located.  We arrived a little early (we weren't sure how all the roads would be and where we'd be able to park) so they were scrambling to get our paperwork, but it all worked out.  They took us on a mini tour of the unit.  There are about 5 or 6 'pods', which are large crescent shaped rooms with about 6 NICU beds in each, with a private area next to each that can be curtained off.  We saw 2 of the pods, and both were pretty full.  It made me sad to see the babies in their little beds, many with lots of tubes and things going in, as well as the families there with them.  We didn't see any baby up close, but it just made me pray that this would be our first and last visit up to the top floor of the hospital.

Afterwards, we spoke with the doctor there that day in a conference room.  He looked over our records and we filled him in on the basic details as well.  We asked the questions that we had, which wasn't a whole lot.  There is no guarantee that Ally will be in the NICU at all after birth; if we make it to at least 37 weeks unless we discover or she develops some other problem after birth she will stay with me and go to the regular newborn nursery.  Even if the hydrocephalus turns out to be severe enough to require the shunt placement surgery, unless she has it before leaving the hospital after birth her recovery would not be in the NICU.  This is another area that has a lot of unknowns, but at least we will be somewhat familiar with the NICU if we do end up there.

On Monday I had an appointment with Terry at my regular doctor.  She said things were looking fine, and she told me that she has seen much worse cases of hydrocephalus, so we are trying to remain hopeful that perhaps Ally will not need the shunt...again, we will have to wait and see.  (It also has me holding out hope for an induction in place of a c-section!)

Also, with our 6 day snow vacation (Wednesday to Monday) I was able to give in to my nagging nesting instinct and clean the entire house.  I just did one room a day, cleaning up and cleaning out, and it is now SO much better and we are much more prepared to add one more to our cozy home!  (I just have to stay out of the basement, where a lot of stuff ended up...)

 Thank you for all your prayers for us...Russell got a new job (after many months of applying and interviewing)!  Starting the 28th he will be working at a college in their financial aid/collections department.  This means a lot more stability for our family (both financially and in scheduling), and he will be able to continue his part-time job as facilities director at a local church as well.  We praise God for His provision for our family and pray as continued changes may still be coming for us in the next few months that everything would work out for us in HIS timing (and as we make our contingency plans for various situations we may find ourselves in).

February 5th, 2014- The Neurosurgeon

On Tuesday we had the long-anticipated consultation with the neurosurgeon.  Russell had requested off that day so he would be able to attend as well.  We got up slightly later than usual, got everyone up and ready, and Russell drove the boys to school/daycare.  I would have gone with him but since I had to go to work directly after the appointment we needed both cars, so we decided to meet there instead.

Our appointment was at 8:30, so I got there around 8:10.  I got checked in and sat down to wait, and no sooner had I got out my knitting than they called me back.  I texted Russell to let him know to ask for me when he got there, since he wasn't there yet.

I went into the room with the nurse.  She asked me some verification questions about myself and my health history.  She then asked if I had any imaging from outside the system to show the doctor.  I told her no, all our imaging had been done in house, and that I was scheduled for a fetal MRI next week and all of my sonograms should hopefully be in the system with my records for them to look at.

She looked at me a bit strangely.  "Are you sure you're supposed to be here?  In neurosurgery?"  I answered yes, that the unborn child I was carrying had Dandy-Walker and hydrocephalus and we were there for a consultation about the surgery to place a shunt. 

I guess that was acceptable to her, so she finished up and as she left, said, "Good luck honey."  I know she meant well, but it just really got to me.  It made me really aware that this was a hard, sad situation and not normal at all.  After she shut the door, I just burst into tears.  As much as I'd been 'looking forward' to this appointment in hopes of getting some answers to many of the questions I had, the fact that we were here, in the neurosurgery office, made it all too real.  This was really happening.  Ally really had hydrocephalus and would very likely require many surgeries in her life, especially as a child, and all I wanted was it to not be real or at the very least, for me to be able to take her place.

I was able to calm down a few minutes after my breakdown, before Russell got there.  And then we waited.  I knitted, Russell played with his iphone, and we waited.  We talked about various odds and ends, wondered what was taking so long, and waited.

Finally the doctor came in.  He is a resident, which is why I couldn't find him on the website.  He basically told us what little he could, which was mostly that there wasn't much he could tell us for sure.  A lot would depend on Ally's condition and imaging after she was born, though some things may be clearer after the MRI next week, but even that would probably not give definite answers unless there was some blantantly obvious issue.

We asked all the questions we had about hydrocephalus, the surgery itself, and maintenance and life afterward.  There wasn't a lot of new information because we had read up a lot on the topics, although he did put some of our fears at ease (the internet can give a wide variety of information, you know!).  The biggest thing to me was we found out that the surgery is usually between 45 minutes and 90 minutes long, recovery time is pretty minimal (patients often leave the next day unless they have other medical complications) and resulting pain is minimal.  Also, revisions of a shunt are usually due to the shunt failing and not so much the fact that they have 'outgrown' it seeing as they put in extra tubing so the shunt can grow with them (to an extent, anyway).

We had read a lot of 'scary' effects of hydrocephalus and shunting, but he put our minds a bit more at ease about it all.  There are many different ways hydrocephalus can affect a person, but just as we are encountering with everything else, these effects are varying and we won't know what Ally develops as a result until it happens.  However, she probably won't develop EVERY symptom, which can sometimes be hard to realize when you are trying to research and prepare yourself for what is to come.

We are going back in 4 weeks to look over the results of the MRI and see if they tell us anything else.  Right now it is up in the air as to whether or not Ally will actually need a shunt; it will depend on the severity of the hydrocephalus when she is born and what her sonograms/MRI/CT scans show.  If she does end up needing it, when it will be done is also up in the air; again, it depends on the severity.

I left feeling somewhat discouraged.  I was hoping to get answers and have an idea of what to expect.  While I definitely understand some things much better, I have finally come to the realization that we will know almost nothing for certain until Ally comes (and even the timing of that is up in the air!) and she is examined and tested further.  At this point, we feel that not many decisions are going to get made until the end of March/beginning of April, and then we are going to be overloaded and overwhelmed.  We are trying to come up with plans, but being the type A person that I am it is extremely frustrating and unsettling to not know what the future holds.

Most days I pass a church sign that says "Trust your unknown future to a known God."  It has been on the sign for some time.  Obviously God is trying to remind me that I need to put my trust in Him, and that everything will work out in His timing.  I am pretty stubborn and have a hard time learning this lesson (obviously).

The next day I had an appointment with Terry at the OB's office.  That went fine, there was not much to tell.  We discussed the possibility of a c-section yet again but I told her that my doctor at MFM knew how much I wanted to have a regular delivery, and how the delivery would be scheduled sometime between 37 and 39 weeks.  I also had them fill out my maternity leave paper work for school.  I have come to the unfortunate realization that regardless of when I deliver, I will not have enough leave to last through the end of the school year, so unless I want to take time off without pay (not good), I will have to go back for at least 3 weeks until the school year ends. 

After my appointment I took Ben for his checkup.  That went fine, and it gave me a chance to talk with the nurse practicioner about Ally's condition (we were not able to schedule with our regular pediatrician).  She also made me feel at ease, saying that they took care of several children with shunts and our pediatrician would work with us to keep an eye on her development.  It made me feel better to know that Ally's pediatrician would be able to work well with us and the neurosurgery team (not that I doubted her abilities, just knowing there were other children in similar situations in the practice that they cared for made me feel a little more at ease).  She also told me about some various programs that are available for young children to help them with their various developmental issues.  I have already started researching this as well but it is good to know that they will be able to help and guide us along as we need it.

Thank you all for your love and support!  Please continue to pray as the weeks pass by.  I can tell at this point that the wait is going to be hard, since we probably won't know much (even when delivery will be!) until the delivery, and then it will all be upon us at once.  It is somewhat overwhelming at times, but as I said we are trying to do our best to prepare and make plans and educate ourselves so we can make the best decisions possible when the time comes- for Ally and our family as a whole.