May 12th, 2014- The Freak-Out

The very night that I posted the last update, I had a very scary mom-moment.  Ally had just finished her bath and she was laying on her towel on the floor.  I was drying her off, and her head was turned to the side, looking toward the wall.  And I saw it.

The hydrocephalus.

I could see the enlargement of her head.  I could see it going up and out the back.  It was nothing drastic, but it was like my eyes were opened and I could see the issue.

Maybe.  Was I just being dramatic?  Of the two of us, Russell is the paranoid one when it comes to our kids getting hurt (physically or otherwise), not me.  Maybe I just thought I saw something.  The only thing I did know was that I didn't know, but it made me feel that we were definitely on the road to a shunt as the resident neurosurgeon had suggested at our last visit, which made me sad for the journey ahead of Ally.  While hydrocephalus can be easily controlled, it can also be very complicated.  Shunts can get blocked or infected, and after awhile in children they are outgrown.  It meant a number of surgeries throughout her life.

I just wept.  With all of the great news we'd gotten on Ally over the short month and a half of her life, I'd become hopeful maybe she wouldn't need the shunt.  Now I didn't see any hope of that.

I was also scared.  The neurosurgeon had put in an order for an MRI, but we had heard nothing about when that would be scheduled.  If I really DID see head expansion, I wanted her to be seen as soon as possible.  I did not think she was in any kind of immediate danger, (no soft spot bulging or anything) but if I could see a difference then it was probably significant.

The very next morning as soon as I got to school I called neurosurgery and told them my concerns.  I asked if she could be seen by the neurosurgeon.  After calling back after talking with the doctor, she said that they really needed the MRI imaging to tell anything, and put in an urgent request to get it scheduled.  (When I told her I wasn't really sure about whether her head was actually bigger and that I might be seeing things, she said, "No, we know you always listen to the Mama.  They have instincts about these things."  Right on sister!)  She asked if I'd measured her head and I said no (not that I would have anything to compare it to, I hadn't written down her last measurement or had access to it).  They also asked if she was having other symptoms (vomiting, lethargy, loss of appetite, change in diapers, etc.) and I said no.  The hospital called later to say they'd scheduled her MRI for the 22nd.  I took down all the information, but in my mind I was thinking "That's almost a month away!"  She had her 2 month check-up on the 6th, so I decided to keep an eye on her and see what our pediatrician said.

I did manage to dial back the paranoia; usually I freak out and then I'm ok (or vice versa) when it comes to things like this where I get really scared or stressed.  Since that day, we've had some more updates that have calmed me more.

On May 1st Ally had her first Early Intervention appointment with the physical therapist and an educator from Easter Seals.  Since it was scheduled in the middle of the day I was unable to make it, so Russell took her alone.  He said she did really great!  Being a preemie she has a chronological age of 2 months, and an adjusted age of almost 3 weeks.  Her physical development is on track for a 2 month old!  So depending on which age you are looking at (chronological or adjusted) she is either on schedule or ahead of schedule for physical development milestones!  While this is great news, delays can start anytime so we will continue to keep a close eye on her and continue with Early Intervention in case she does have a need for therapy in the future.  One of her best milestones is her smiling at us and her brothers.  She usually does it really fast and we haven't gotten a picture yet, so we will be working on that for future posts :-)

May 6th was her 2 month check up.  I was only able to catch the tail end of the appointment, but I was glad I got to speak with our pediatrician.  She is now 8 lbs, 10 oz, so she has officially doubled in size since her birth!  (I forgot to mention in the last post that she was officially out of preemie clothes and in newborn/0-3 month clothes.  I LOVE all the girlie clothes and dresses and headbands we have for her!)  This puts her barely on the charts- first percentile for weight, second percentile for height.  Her head, of course, with the hydrocephalus, is at the 39th percentile.  I wasn't there for the actual measurement, but our pediatrician said that while her head has grown (which, of course, is to be expected) it is still in the same percentile as last month, so the growth is not exponential.  She made me feel a lot better because if she had been concerned I was going to ask her to 'stretch some muscle' and move up the date of her MRI, but she seemed unconcerned about the later scheduling.  One thing that was frustrating was I had requested that neurosurgery send her imaging to our pediatrician, and that had not been done.  Guess I will need to be reminding them of that next time!

May is one of my all-time favorite months of the year.  School is winding down, weather is awesome, we celebrate both Luke and Ben's birthdays (Birthday party extravaganza weekend!  They are now officially 5 and 2 years old!), and now it is Dandy-Walker and Hydrocephalus awareness month.  This must be 'proclaimed' in each state by the governor.  Virginia has had it in the past, but apparently it is a yearly request, which I did not know.  I put in Virginia's request April 26th, but haven't heard anything yet (not surprisingly, since it was so late).  Though it is mid-May, it could still happen!  I saw South Carolina, New Jersey, and Nevada just got theirs recently.  However, it is still unofficially Dandy-Walker Awareness month, so please spread awareness in your school, work, or church by going to this website and printing the poster and displaying it.  http://www.amywaggs.com/CartersRun/wp-content/uploads/2013/10/Dandy-Walker-Flyer-20141.pdf
You could also go to the Dandy-Walker Alliance website to learn a bit more: www.dandy-walker.org and request a wristband or car magnet from this website: http://www.dandy-walker.org/magnet-request/
You could also join us for Carter's Run this weekend www.cartersrun.org or the Dandy-Walker Alliance Day at the Washington Nationals in June.

 The picture above is a common slogan from the Dandy-Walker Alliance.  What isn't shown is the 2nd part of the tag line, which says,

"That's a lot when your child is the 1."

Never has that been more true than now.

Please continue to pray for decisions for next school year for our family.  We have had some questions answered, but still have a lot to figure out.  And of course pray for Ally, especially on the 22nd for her MRI (she has to be sedated for it :-( ).  I will have a few more updates before the end of the month, especially after this weekend at Carter's Run and her MRI next week.

April 23rd, 2014- The Possibilities

Sorry for the delay in updates- since going back to work I haven't had as much time to update the blog as I would like.  Full time work and full time Mommy doesn't leave a lot of time for other things!

First, returning to work.  Today is only my 8th day back, even though I went back on the 9th.  My first two weeks were 3 day weeks (to help ease back in to the swing of things) and then this week is a 4 day week coming off spring break (which was Thursday - Monday over Easter weekend).  It was hard to have to get up early again and get everyone where they needed to be on time, but we made it work, and I only have 34 school days to return for before the end of the school year (I'm not counting or anything...)  Each day has gotten somewhat easier and I enjoy the 'break' from home, though I miss my little ones too.  We are still trying to figure out what to do when the summer's over, so again, prayers in this area would be very much appreciated.

The Friday before I went back Ally had her 1 month check up with the pediatrician.  Overall that went well; she couldn't get her immunization because of the timing of when she got the first one in the NICU, but the doctor said that was okay, she could get it at her 2 month appointment with the others she would receive.  Also, her weight was terrific- 6 lbs 8.5 oz!  She is really growing and gaining weight fast so I am really pleased with that.  She still takes bottles of pumped breastmilk with 1/2 tsp of formula mixed in to take it to 22 calories, and I guess it is really making a difference!  The doctor also wanted her started on a liquid vitamin, which is mixed into her bottle once a day.  I'm looking forward to her next check-up in early May to see what her weight is and how the doctor feels she's doing overall.  The other day I got on our bathroom scale with her, then without her, (as accurate as that is, I know) and it showed a difference of 8 lbs!  My hope is that at her next appointment she will be at least 9 lbs, which means she would have more than doubled in weight since her birth.

The day before I went back to work Ally had a follow-up appointment with neurosurgery.  The doctor was not available, so we saw the resident that we had seen for our consultation when I was still pregnant with her back in February.  He looked at her most recent head sonogram (ordered by the neurosurgeon at our last appointment and done about a week later) and told us some not so great news: the possibility of a shunt is looking more likely.  I didn't see the images myself (which next time I intend to ask them to show me the comparison between images so I can see for myself what they see) and this was a different person, so part of me wonders (and is hoping) that maybe the doctor will tell us something different since at our first appointment he seemed pretty optimistic about her condition.  The resident has ordered an MRI to get a better idea and better images, but we still don't have a date for that yet.  It has to be coordinated with several people, because infants have to be sedated for an MRI so they will be still and they can get what they need (even if a baby is asleep, the machine can be loud and it would probably startle them awake).  I was really disappointed in this news, but we always knew it was a possibility, just one I had become hopeful that we could avoid.  Again, prayers in regards to this would be appreciated.

On Monday we had an appointment with Early Intervention.  This was a preliminary visit to get to know the program and to determine her eligibility.  Because of Ally's diagnosis of Dandy Walker we figured she would be eligible, but everyone has to go through the screening process, and plus we are new to all of this so it was good to find out more about their services.  Right now Ally's 7 weeks old, so a lot of the questions they asked were hard to answer and almost didn't apply to her (Are there certain places she enjoys?  She's a baby, she hardly knows where she is!), but we answered them as best we could.  They determined she was eligible, so in the future she will be eligible for any services needed through them; speech therapy, physical therapy, etc.  She can stay in the program until her third birthday, or until she transitions into a program through the public school system, whichever comes first.  Public school pre-k programs can take students as young as 2 (Ally would be 2 and a half if she went this early) if they have issues like developmental delays, are on the autism spectrum, etc.  We LOVE the preschool Luke attends and already have Ben on the list for 2016 - 2017 before he would start Kindergarten.  We would love for Ally to go there too but realize that she may be unable to attend this preschool depending on her development at the time and a public school pre-k may be the best thing for her.

As for our home life, things seem to be calming down.  We had delicious meals delivered to us every other day for a month (THANK YOU to our wonderful friends who did this for us) and are just now finishing up the leftovers, which means we will have to start cooking and buying meat at the grocery store again soon.  Ben has actually somewhat transitioned to the big boy bed (though last night was somewhat questionable, but the other nights he has done pretty well) so we can soon move Ally into her room and the crib anytime we feel she is ready.  She started taking tub baths and LOVES them (she would scream her head off during her sponge baths, but she enjoys having the water poured on her and cries when she has to get out and dry off!).  Luke and Ben are doting big brothers, and Ben especially has transitioned well.  He enjoys being face to face with her when she is on the floor (he practically lays on top of her, which we have to watch and make sure he doesn't squish her) and kisses her often ('kiss kiss').  He even tries to be helpful when she cries by saying "It's ok Ally" (except in his toddlerish way which is super cute) and occasionally trying to give her her paci.  Luke often gives her kisses too and is helpful when we ask him for help.  Ally is lucky to have such loving, protective big brothers.  We hope to make it through the last month of school for both Luke and I, and then enjoy our summer together with swimming, library storytime, and playdates with friends.  And maybe an impromptu vacation and trips to see family thrown in there as well.

We are also excited to get more involved in the Dandy-Walker Alliance events and supporting them.  May 17th we will be walking (wish I could run it, but I'm not in shape- maybe next year) the Carter's Run for Dandy-Walker 5k with my family, and Luke will be doing the 1K kids fun run.  Afterwards we will be hanging out at the family fun festival.  And it was just announced that June 22nd is Dandy-Walker Alliance day at Nationals Park, so $6 of your ticket cost goes to the alliance.  We plan on purchasing our tickets very soon and would love for more friends and family to join us!  We look forward to getting to meet other DW families at these events and learning from their experiences as well.

Thanks for your prayers and support.  Please keep them coming.  We need them more than we can describe here, especially as summer approaches and goes by SO fast.  Hopefully summer will also afford us a chance to get to see many of you who we do not regularly get to see, and you can meet Ally in person for yourselves and we can all catch up!

April 5th, 2014- The Newborn Pictures

Courtesy of Portrait Innovations- for your viewing pleasure!  (not exactly a 'new' newborn but she's small enough you'd never know!)

 Still tired...

 The winner- and the outfit we brought her home in!

 The whimsical photo...love it!!!

 The ladybug!

We have one of all 3 of our kids like this in white frames.

We get pictures done every year at Portrait Innovations and this time had the best photographer we've ever had...I'm requesting her when we go back for family/boy individual/kid group photos next month.  We've had so many people- family, friends at church, and complete strangers- tell us how perfect she is.  Though we know no one is perfect, including our girl, and the circumstances surrounding her diagnosis and early birth have made things far from perfect, I keep trying to remember that our God is good and He has richly blessed us with not only our Ally, but with many outcomes that could have been far worse thus far than they have been.  He will get us through- whatever lies ahead.  For now, in this post we celebrate with you in Ally's birth and the life the Lord has prepared for her.

March 20th, 2014- The Follow-up

Before we had left the NICU, the nurses had made sure we had scheduled our first pediatrician appointment and had also made a follow-up appointment with neurosurgery for Ally as well.

The first night was...the first night.  In the NICU while we were there Ally rarely cried unless it was getting close to her care time and she was obviously getting hungry, she slept so well otherwise.  I guess she was on her best behavior for the nursing staff, because she did NOT sleep well that night at all.  Every time I would try to put her down in the crib, she would cry.  I ended up sleeping with her most of the night on my chest (I did this quite often with Ben too), which the doctor the next day at our appointment was NOT happy about because it isn't safe.  Not much has changed over the following weeks, she often during the night wants to be with me somehow to sleep, and since I also want to sleep I allow it (don't tell our pediatrician!).  The doctor had suggested that maybe using the crib wasn't the best thing since it was so big and she was used to a smaller bed in the NICU.  This was just as well, because trying to keep Ben in the 'big boy bed' did NOT go well the first night- he got up countless times and tried to climb the ladder to the top bunk where Luke was several times as well, so we ended up putting him to sleep in the crib and then moving him to the bed after he was asleep.  Putting Ally in a bassinet solved 2 problems for us!

The NICU staff had told me to try to keep her on the same care time schedule she'd been on while in the NICU, at least for now.  I did my best, but it was hard to want to wake her after finally getting her to sleep, so since then we've just kinda been winging it- feeding on demand and changing her whenever needed.  She seems to be getting hungrier, because when she cries she usually wants to eat.  I can remember with the boys feeding them and an hour later when they were fussy Russell would be holding them and would say, "He's rooting" and I would exclaim "I JUST fed him!"  I feel like Ally's getting to that point with eating as well.

On the 20th we went to the neurosurgery follow-up first.  This time we met with the actual surgeon and not one of his residents.  I wasn't sure what to expect at this appointment.  Before we went I was changing Ally's diaper and looked at her tiny body laying on the blanket in front of me.  For the first time I started to get worried- without the layers of clothing and blankets, her head did seem a bit large for her scrawny body.  So sitting in the doctor's office I was concerned for the first time about what the doctor would have to say.

Some friends of ours have 2 boys, both of whom have had surgery on their hands and feet around the age of 1.  Their youngest just had this done a few days ago and she posted before and after pics in the hospital on facebook.  Both times I wondered how hard it must be to watch such a young child go into surgery alone, and then I looked at my tiny girl.  She might need a shunt, which would mean cutting into my baby's head, through her skull, into her brain, put in a tube that would be run under her skin down her neck, over her collarbone, and into the chest cavity, where there would also be a small incision in the chest to 'catch' the tubing.  Although shunt surgery is fairly routine, doesn't take long, and recovery is not terrible, it doesn't mean that it will be easy to watch.

The neurosurgeon came in and measured Ally's head.  We discussed briefly her diagnosis of Dandy-Walker and how she had had a head ultrasound at 1 day old in the NICU, but we had not been present for it and not spoken to anyone in neurosurgery about it, but since nothing had come of it thus far it obviously didn't show anything alarming at the time.  Then he was quiet for a few minutes, clicking around on the computer.  I sat there quietly, wondering what he was doing and why he wasn't saying anything to me.  I wondered what he was seeing on the sonogram pictures (that was what I was assuming he was looking at, along with perhaps all the notes from MFM and the NICU) and was getting increasingly paranoid about what he was about to tell me.

He finally finished with the computer and gave me the verdict.  Her head size was within the normal range for her age and gender.  He could definitely see the Dandy-Walker gap that had been seen in countless sonograms in utero; however, he would not consider her to technically have hydrocephalus at this point.  Not to say that it couldn't develop over time, but for now no shunt would be necessary and we would just need to continue to follow up with neurosurgery to watch it, and hopefully over time those follow up appointments would become less and less frequent.  He scheduled Ally to return in 2 weeks, and also scheduled another head sonogram to be done before this appointment in order to analyze and compare them.  We are not out of the woods yet (and may never be, because hydrocephalus could develop at any point, as we discussed- it could take a lot of time for the fluid to build up to a dangerous level) but for now he is not concerned.  I was so relieved!  He then asked me what I did, and I told him I taught high school math.  He said it sounded like I really knew what I was talking about, and I told him I'd just done a lot of research and reading.  Another demonstration of my new ability to advocate for my child.

That afternoon we went to the pediatrician for a follow-up on the follow-up.  The appointment went great, we were able to fill in the pediatrician on the good news that the neurosurgeon told us earlier.  The most exciting thing, however, was when we weighed Ally.  At the appointment last week, she weighed 4 lbs. 7.5 oz.  I told the nurse as I went to put her on the scale that I was hoping she had broken 5 lbs but I wasn't getting my hopes up.  But my hungry girl not only met my goal, she beat it- 5 lbs, 2 oz!  She gained 10.5 oz. in 8 days- more than an ounce a day!  I was ecstatic!  Part of this may be due to the fact that she still mostly takes pumped breastmilk and it is being fortified with some formula.  The NICU staff started doing this to take the 20 calories in 2 oz. of breastmilk up to 22 calories.  While it doesn't seem to be that significant, it appears to be making a huge difference!  I'm hoping to get to 6 lbs. by her next appointment and with the way she's growing she'll be out of preemie clothes and diapers pretty soon!

Prayers would be very much appreciated for our family.  Ally's early arrival has thrown all our family off quite a bit since not all of our affairs were in the order we would have liked them to be and we are all scrambling to adjust, especially now that Ally is home.  I will be off until April 9th and then we will have to readjust to a new normal for 2 months.  Thanks so much for all your love and support to this point, and your continued interest in our girl. 

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