Shunt Happens

Today is the big day, Leah will have surgery this evening to put in a shunt.  This is the surgery that we have dreaded since finding out about her spina bifida 5 months ago.  I think we were both hoping for a miracle, that we'd be in the 5-10% of people with SB who don't need one.  On Monday she had another head ultrasound that showed increased fluid in her ventricles.  The doctor also measured her head and the size had increased more than normal.  Surgery is tonight at 5pm. 

There is a tiny little straw that goes into the ventricles and a valve attached to it that will drain the excess fluid down a tube.  The tube is run behind her ear and down the back of her neck and into her abdomen where the fluid will be absorbed by her body.  She will have a small c-shaped incision in her head to insert the shunt and a small incision in her abdomen to pull the tubing through, but otherwise there is no visible sign of a shunt once those are healed.  We will be able to feel a small bump in her head where the shunt is and also the tubing down her neck while she's still small.  The tubing is long enough for her to grow into adulthood without needing it replaced, as long as it continues to work.  The likelihood of a shunt malfunction in a young child is very high, so we'll be educated in what to look for.

As much as we've dreaded this, we're also a bit relieved.  We knew that she'd need one and it was just a matter of when.  It's been great having her home for the last 2 weeks and feeling like we're a normal family.  We've also worried when she's been overly fussy that she's uncomfortable, and also worried each week at her doctor appointments that we'd get the news.  Now we can deal with it, have her surgery, and move on.  We've also tried to keep her away from a lot of people, since we knew we'd be back in the hospital, so now we can feel more comfortable having her out and friends come over to visit.

Please keep Leah in your prayers tonight and for her recovery.  We hope to be home in a couple days.  Children's Hospital blocks me from posting new blogs, so I'll have to post an update when we get home. 

Busy Week Ahead

We have a busy week this week, with several important doctor appointments.  Tomorrow Leah will have another head ultrasound to tell whether she'll need to have a shunt.  We've been so lucky to not need one yet, but I know that it's really only a matter of time until she will have one.  She also is going to have her stiches removed tomorrow from her back.  The surgeon did a very nice job on her back repair, and it will leave a nice even scar.  But he did individual stiches so I expect her to not be very happy when getting them removed. 

She also needs a few tests to see how her Chiari malformation is doing.  Because of her spinal injury, the spinal cord pulls on the base of her brain.  This part of the brain controls breathing, sucking and swallowing, among other functions, and some people with Spina Bifida have trouble with these.  I was very relieved when she took so well to nursing and she doesn't have blue spells or other signs that she has trouble breathing.  So tomorrow she is going to do a barium swallow, which will show if she is swallowing down the right tubes.  On Tuesday night she'll do a pneumocardiogram, which is like a mini sleep study.  This is done at home, and we'll hook her up to machines overnight to see how much oxygen she's breathing in and whether she has any apnea while she's sleeping.  There isn't any reason to believe that there are issues with her, as she seems to eat and sleep just fine, but our doctor wants to just make sure that everything is ok.

When I was first learning about SB, I was very nervous that this would be an issue for her.  Even now, when she coughs or seems to take in too much milk, I start to worry a little bit.  I'm sure that "normal" babies also do this and I probably wouldn't think twice about it if she didn't have SB.  It's just one more thing that we have to think about with her condition.

We also have an appointment this week with our Spina Bifida doctor, who will take a look at the results of the barium swallow and pneumocardiogram.  And there may be shunt surgery if her ventricles are getting bigger.  The SB doctor also wants us to have her eyes checked out, so another doctor appointment.  Whew, we better get used to doctor's offices!!

Aside from all the appointments, she's been a pretty normal baby.  She eats about every 3 hours during the day and is going 4-5 hours at night, so we are actually getting some sleep.  She's a pretty content baby, but she does get fussy when she's really tired or hungry.  Sometimes Ty and I look at each other and say to each other how we can't believe that we actually have a baby.  Now that she has more awake time during the day, we love just watching her expressions.  She feels a lot more normal than I thought she'd be.  I know I said it before, but I sometimes even forget that she has Spina Bifida.  All I see when I look at her is a perfect little baby... who's just so darn cute!!

Happy Thanksgiving

Ty and I had a relaxing Thanksgiving day this year.  We took a walk down by the lake and brought Leah in the baby bjorn.  I cooked a turkey with mashed potatoes and stuffing and we celebrated our first holiday with just the 3 of us.  We've had a pretty busy 2 weeks with lots of doctors appointments and visitors so it was nice to be just our little family.  We certainly have a lot to be thankful for this year!

Pictures

Here are a few pictures of us leaving the hospital and hanging out at home with baby Leah. 


dressed and ready to go home

car seat time

snuggling with Daddy

first bath

look at those baby blues

Home!

It feels so great to finally be home!  We were discharged a few days ago and have pretty quickly settled into a normal routine.  We mostly are just enjoying our time with Leah outside the hospital, where we can pick her up and walk around with her anytime we want.  And I don't have to be so far away from her at night, she's on the other side of our wall instead of the other side of the hospital floor.  Leah seems to be enjoying her vibrating chair and wearing clothes and snuggling on the couch with mommy and daddy. 

Before we left, Leah had a few tests to check out her kidneys to see if they are working properly.  She had an ultrasound and that showed that they are normal.  She also had a VCUG, which shows whether her urine backs up into her kidneys when her bladder is full.  That showed that everything is normal, so her bladder empties properly.  We were concerned that we would have to use catheters on her to help empty her bladder, but since she's going to the bathroom on her own, we don't have to do that right now.

She also has had several head ultrasounds to check for fluid in her brain ventricles.  At some point we're pretty sure she will have to have a shunt, but it's great that she doesn't need one right away.  Every day we can wait increases the chances that the shunt will work and decreases chances of infection.  Nearly every infant who has a shunt will have it malfunction at some point before they turn 1.  Babies have a high level of protein in their spinal fluid, which can clog a shunt and lead to a malfunction.  The longer we can wait, the better.  Her ultrasounds, including the one this afternoon, show that her ventricles remain stable.  For now, we're thankful for everyday that she remains shunt-free.

Visitors!

Leah has had a few visitors already in the hospital.  All 4 of her grandparents have been in to visit.  She is so lucky that they all have been able to meet her when she's so young.  My parents live out of town, so my mom drove up on Thursday and got in late, so she came to the hospital on Friday morning.  My dad surprised me by flying in on Saturday and spent the day at the hospital with us before heading back home Saturday night. 

We had a skype date with Aunt Maureen, who attends Purdue.  We also had skype dates with Uncle Dan and Aunt Jamie and cousins Bailey and Drew, and Uncle Brad and Aunt Mary Beth and cousin Shane (my brothers).  Aunt Jamie and Uncle Jeff (Ty's sister) and cousin Shay skyped with us from Nashville as well.  

Bailey, who's 2 1/2, told his teacher at school the next day that "baby Leah is so cute."  I love that!  And Shay, who's 20 months, was blowing kisses to her.  I wish we lived closer to aunts, uncles, and cousins, but technology is amazing and it's so awesome that they can see her across the computer screen.  Hopefully we'll be able to get together in person very soon.  She is one loved little girl!

The First Days

First of all, we finally picked a middle name.  Her full name is Leah Jillian Severson.  We chose Jillian because both Leah and I had nurses named Jill who were wonderful, amazing people who helped us through the first couple days.  Also, we want to thank everyone for their thoughts, prayers, texts, calls, and support.  We have some awesome friends and families!

I will do my best to recap the events of the last 5 days.  What a crazy time it's been already.  Our days seem very long but also seem to go by quickly.  I woke up on Thursday morning around 6 and realized I was going into labor.  I was a little freaked out because I was planning on getting some things done this weekend.  I called my doctor and he told me to come on in and they'd check it out.  So I called Ty, who had just left for work a little bit ago, and told him to come home.  So he did get a little bit of the drama he was looking for!  We got to the hospital at 7 and hooked me up to all the machines, and saw that I was having contractions every 3-4 minutes and that we were having a baby today.  That's when the first Jill came in and got me prepped for surgery.  They told us that we were bumped up to the front of the line and it was just after 9 that I walked down to the operating room.  I remember going in right at 9:14.. that was the time on the big board.  The spinal tap hurt like crazy because they had to numb me twice, that was really the worst part.  Ty came in, and then we waited for the NICU team to arrive.  It felt like forever, but the doctor announced at 9:45 that baby was out and she had lots of hair!!!  She went into the room next door to capture vitals and have her back dressed.  Ty went in with her, and then came back into the OR carrying a little bundle.  I was so thrilled that they let him carry her to me.  We had a few minutes of snuggle time before she had to leave and head across the street to Children's.  Ty left and went with her, and that's when Jill sat with me through the rest of surgery, and helped get me into recovery.

I was in recovery for about an hour sucking down ice chips and I think I asked 5 times if I could go see Leah.  FINALLY Jill and I went through the tunnel (which I would soon become very familiar with) and I got to see Leah.  I was surprised to see Ty holding her when I got to the room, as I was expecting that she'd have to stay in her bed for a while.  She came to me and was pretty fussy until she heard my voice.  I was able to hold her for a few minutes and give her lots of kisses and I was sad when I had to head back to my recovery room.  I wasn't in recovery long before Ty came in and he and the nurse were getting me out of bed and standing up.  Holy hell, that hurt!  But I just kept thinking that I want to see my baby and I need to be able to get into a wheelchair to do so.  We went back to Children's again to spend a little bit more time with her Thursday night.  And then another trip back through the tunnel to get me back to my room.  *sigh*  That was a long day.

On Friday afternoon Leah's surgery was scheduled for 2:30.  The team came up to get her at 2:00, and I got pretty emotional when I came into her room and saw the big transport incubator.  My little baby was going into surgery when she was only 1 day old.  It's hard to prepare for that, even though I knew it needed to happen.  We asked the nurse to call when surgery started, and we got the call just after 3:00 that the doctor had just gone in.  I went back to her room and was a little startled to see the surgeon at her door not even an hour later.  He had a big smile on his face and told me that surgery went beautifully, and that they were removing her breathing tube and she'd be back up in no time.  Wow, what a relief!!  He was able to repair her spine and there was enough skin to close everything up, and she'll have a 3-inch scar running vertically down the lower part of her spine.  They had taken an ultrasound of her head to check the brain ventricle sizes and had determined not to put in a shunt, which was really great news for us.  We know that at some point she will likely need one, but every day without one is a good day.

She came out of surgery hungry and fussy.  She definitely doesn't like all the wires and tubes and tape stuck all over her and she was not afraid to let everyone know about it.  I'm sure she was also hungry, as she wasn't able to start nursing until after surgery was over, so all she had to eat was given through an IV.  Friday night we were able to try nursing, and she took pretty much right away.  We still had a few bumps in the road on Saturday while we were trying to get used to each other, but she is doing exceptionally well now.  The rest of the weekend is a blur of visitors and doctors coming in and out and just trying to get to know Leah.  I was so ready to be discharged on Sunday, and Ty and I have been staying at the hospital every night since.  It's weird that this has become very normal to us and we've gotten to know the NICU floor and the hospital parking ramp as if it was our home.  I've only been home once, Monday morning, for a quick shower and repacking of our bags.  I thought I'd want to spend more time at home, but it doesn't feel right being without Leah and I miss her when I'm not with her. 

On Monday morning she had a head ultrasound and showed that her ventricles were more enlarged, which we believe was from her back surgery.  At this point it's more of when, not if, she'll have another surgery to do the shunt.  The neurosurgeon wants do another head ultrasound to see how the ventricles look on Thursday, and then decide about the shunt.  She also had an ultrasound this morning on her kidneys to see how they are working.  We haven't heard on results from that, but her kidney doctor wasn't expecting anything to show up.  The nurses cathed her on Monday to see if she is able to empty her bladder on her own, and she is.  That means that her urine isn't backing up into her kidneys, and she's been having full diapers, so we're very happy with her bladder and bowel functions so far.  We're just waiting on shunt surgery at this point. 

Whew, that's a lot but not even anywhere near the full story.  Sadly the hospital blocks my blog site, so I haven't been able to get on here and post updates as much as I'd like.  Thanks to my sister Maureen for updating this for me today.  Hopefully she'll be able to post my updates until we're able to come home.  We know we have a long road ahead of us, but it seems pretty easy to face when I look at that sweet little baby.  When I look at her, I only see Leah, my daughter, my little girl, who has a head of hair and blue eyes, and who looks me and has Ty's head.  She has a scar on her back and may have one on her head for a while too, but spina bifida is not the first thing I think of... it's not even the 10th.  It's just something she has and something we'll have to deal with.  But I wouldn't change her for anything.

Leah has plans of her own....

We are overjoyed and beyond excited to share that Leah was born on Thursday, November 10! Our little baby girl weighed in at 6 lbs, 4 oz and was 18 inches long.  She has a head of dark hair and has a set of lungs on her!!  We are so in love with this little girl :)  She had her surgery this afternoon at 2:30, and everything went very smoothly.  They only did the back surgery because didn't need a shunt yet (YAY!!).  The doctors will continue to watch her ventricle sizes to see if she'll need one soon.


Thanks to everyone who has been supporting us, sending texts, calling, and praying for our little baby girl.  She is just beautiful, and I can't wait to share more details.  We've had a pretty exciting and exhausting and emotional 2 days and we're both just ready to crash.  Stay tuned for more.  Here's a sneak preview of a couple of our favorite shots of our favorite girl.


Love, Ty and Jen

Single Digits!

Officially we have 9 days left!  It doesn't seem that long ago that we were in single digit weeks and pretty soon we'll be counting down the hours.  Ty and I were really productive for a Saturday.  He installed the car seat bases, and then we went to Target this morning and stocked up on laundry detergent, toothpaste, soap, and other stuff we don't want to have to run out and get.  I also got the laptop set up with my webcam so we can skype with Leah's aunts and uncles from the hospital.  I asked Ty what he wants to do for the rest of the weekend and he said "be quiet"!!  He said he wants to do nothing but sit in silence for the next 9 days... LOL!!! 

We also had a pretty exciting weekend last weekend.  Ty had planned a trip to Columbus, Ohio on Saturday with his dad to see the Ohio State-Wisconsin football game, so my mom had planned to come up with me for the weekend.  Then when the World Series went to Game 7, he flew to St. Louis on Friday afternoon to catch the Cardinals beat the Rangers... YAY!!  As a Cardinal fan, I was both excited and jealous that he got to go.  My mom and I had a fun time doing some shopping... I bought Leah's Christmas dress and picked up a few other things for her.  We also put shelves up in her room and finished decorating.  It's now ready for a little girl to come home. 

Now we sit and wait (in silence, for Ty).  She could really come any time.  I'm now 38 week pregnant, which is full-term and the doctors won't stop labor if it happens.  Even though we have a c-section scheduled for the 14th, if I go into labor, they'll just take her then.  The hospital knows that we have a lot of doctors who need to see Leah when she's born, and if I go sooner, then they'll call everyone when we get there.  Ty told me last night to just have her right now so we don't have to wait anymore.  I think he secretly wants there to be a little bit of excitement to get me to the hospital like you see on TV!!

Here are a few pictures of her room all finished.

Holy $H*!, It's November!!!

Wow, it's November!!  Wasn't it just March?!  We now have less than 2 weeks left until Baby Leah makes her debut.  I’m starting to feel more nervous and anxious.  I still cannot wait to meet Leah and see her and hopefully hold her very soon after she’s born.  It’s just that all of that excitement also comes with concerns about her health and her hospital stay and surgery.  We had the chance to meet Dr. Nagib last week, who is the pediatric neurosurgeon.  He will perform the initial surgery to close her back, and then will also check her for hydrocephalus and put in a shunt as needed.  We will continue to see him throughout her childhood to monitor her shunt and any other neurological things that may come up.

I know I’ve been concerned about her small head, and Dr. Nagib mentioned a new word to us… microcephaly.  That’s where the head is very small, and it can be a sign that the brain isn’t developing correctly or stopped growing.  Dr. Nagib didn’t seem too overly concerned about it, but it’s hard not to worry.  Once she’s born, they’ll be more concerned with her developing hydrocephalus and determining if/when to do a shunt.   They’ll also watch her head size and do an MRI if it’s really small to find out for sure if she has microcephaly.   I think this is the part that scares us the most.  And why sometimes I wish I could just stay pregnant forever, so we don’t have to worry about things like shunts and microcephaly and leg braces and many doctors visits and everything else that comes with Spina Bifida.

Ah, but I know that's not possible.  In just 12 days (or less!), Leah will be here, and we truly couldn't be more excited.  Now that we're so close, it's starting to feel so much more real.