Just the Girls

Today is the first day with just me and Leah.  Ty was fortunate to have the first couple weeks off from work.  My mom came up last week to help us and keep me company when Ty went back to work.  Yesterday we had lots of doctors appointments so today is just the girls.  I'm lucky that she's such a good baby and has been sleeping really well at night.  We got up this morning and went out to the pharmacy.  Now she's snoozing on my lap while I get some things done on the computer.  I'll have to feed her again soon and then start thinking about what's for dinner.

Yesterday we had another head ultrasound to check the shunt.  Wow, what a difference!  Her ventricles are significantly smaller, which means the shunt is doing its job.  We had an appointment with our neurosurgeon to look at the ultrasound results.  He thought that maybe the shunt is working a little too well, as it is draining out more fluid than it should.  Her fontanelle (the soft spot on the top of her head) was really sunken in.  In the short term it's not a problem, but long term it could make her skull bones overlap on top of each other and her head will become odd-shaped.  Since the shunt valve is basically a magnet, he was able to adjust her shunt pressure right in his office.  Now her ventricles can have a little more fluid before the shunt starts to drain.   Pretty cool.

He also took out the stitches in her head and abdomen.  Boy, did that tick her off!!  And I don't blame her, that wouldn't be any fun.  He was very happy with the way it's healing but wanted to put 1 small stitch in just to make sure it heals up properly.  She also had a left over stitch in her back from surgery, so he pulled that out as well.  She was a pretty unhappy little girl when we left his office.  We also went to the Spina Bifida doctor yesterday, and we have to undress her to weigh her there, which she does not like.  Poor baby was not having a good day.  He was happy with how she's looking and we'll start seeing him less often as she gets a little older.  He likes to see her more often when she's young, and he likes seeing mom and dad just as often to make sure we're doing ok. 

Overall, we've been very fortunate for her health.  Her incision on her back is healing up very nicely, her head and abdomen look good and so far her shunt is working the way it should.  She also continues to have good bladder and bowel function, so we're not having to use catheters with her.  We've been doing her leg exercises daily and we even saw some movement in her left leg last night.  Of all the things that we could be dealing with, I'm very thankful for how well she's been doing.

The rest of the week is going to be a little busy.  Tomorrow we have our school district's Early Intervention coming over to evaluate her.  EI is a state program that offers assistance to children under 3 who have a variety of disabilities - physical, developmental, emotional, etc.  They will make sure she's meeting her milestones and provide us resources if she's not.  I also have friends from work stopping by to meet Leah.  On Thursday we have an appointment to tour a day care... I suppose someday I'll have to go back to work.   And we need to fit in a little Christmas shopping too.  It's kind of a bummer that it took 5 weeks for things to finally settle down, and my maternity leave is almost half way over.  Hopefully the rest of my leave will be quiet and uneventful. 

4 Weeks Old

Leah is 4 weeks old today, I just can't believe it!  I can see that she already looks different than she did when she was born.  She is more alert each day, and she's starting to get more strength in her neck... all that tummy time is paying off!  I think she's also getting cuter every day.

It's hard to believe that we've actually spent over 1/4 of her life in the hospital.  I thought I'd share a little bit about what our life was like while we were there.   Leah was born at Abbott Northwestern Hospital and then was taken to Children's Hospital, which is connected through an underground tunnel, about the length of 3 city blocks.  We got very familiar with that tunnel, I think Ty walked back and forth 5-6 times a day while I was still there.  I was in for 3 days, and was taken in a wheelchair back and forth.  Once I was able to start feeding her, I was going back and forth between the 2 hospitals... to Abbott for pain medicine, to Children's to feed, back to get more meds, again for another feeding.  It was nice to finally be discharged so I could stay at Children's all day.

Leah spent her first week in the Neonatal Intensive Care Unit (NICU), which is for babies who are premature or have other health problems when they are born.  Once a baby leaves the NICU, they won't come back to that unit, as it needs to be as sterile as possible.  Each nurse takes care of only 2 babies at a time.  When we came back to the hospital for her shunt surgery, she had to go to the Pediatric Intensive Care Unit (PICU).  Even though she was a tiny baby, she had gone home and couldn't go back to the NICU.  Like the NICU, the PICU also was a ratio of 2 children per nurse, so all the patients get a lot of attention.  She then went into the Infant Care Center (ICC), which is the step-down unit for babies under 1.  Most babies come to the ICC from the NICU, but they also get babies like Leah, who had surgery.  All the units - NICU, PICU, ICC - have private rooms, and each room has a rocking chair and futon that pulls out into a bed so parents can room-in with their babies... like I did when Leah was in the PICU.  All the units are also secure and we had to be buzzed in.  They also kept a record of all the visitors who came into her room.

One thing that is very special about Children's Hospital is that they have a Ronald McDonald House in the hospital.  It is on the same floor as the NICU and ICC.  Normal Ronald McDonald Houses are off-site and only families who live out of  town can stay overnight there.  But this one has 16 private rooms for families of children in the NICU, ICC and PICU only.  It also is not a long-term stay facility, and families get on a waiting list based on need.  We were very fortunate to be able to have a room there each night Leah was in the hospital, both when she was born and when she came back for surgery.  When she was in the NICU after being born, the nurse called me during the night when she was ready to eat, so I could walk down the hall to feed her.  Even though her room had a pull-out sofa, it would not have been an overly comfortable place to sleep there every night.  It was great for Ty too, that he could be at the hospital with Leah and I... even though we live fairly close, he didn't have to drive back and forth every day.

The Ronald McDonald House has a very large kitchen and seating area where families could come and hang out, even if they weren't staying overnight.  Most nights they had volunteers come and cook dinner.  Volunteers also donated food for the stocked pantry - cereal, granola bars, boxes of pasta - so we never had to worry about when and where our next meal would be.   

Life in the hospital is certainly not like life at home, but our experience was as close to home as it could be.  Leah had amazing nurses in all the units, and we couldn't be more impressed with  everyone there.   If there has to be an upside to all the time we spent there, it did help her sleep habits.  She has her days and nights right, so she's up more during the daytime and falls right back to sleep at night after a feeding.  She also sleeps in her crib and has never objected to being there.

I know I'll never forget our time there.  It had a very distinctive smell of hand sanitizer and sterile-ness... I can still hear the beeps and dings of all the machines... I'll always be able to visualize the pattern on the couch and curtains and the paint color on the wall... those sights and sounds and smells will be with me always.  But I also will never forget the kindness of everyone and the feeling that we were well taken care of.

Back Home... Again

Leah's surgery on Wednesday night went very well.  Thank you to everyone who has been thinking about us and praying for us.  We're now home and trying to get back to normal.... as normal as life can be with a baby :)

On Wednesday afternoon we went to the hospital and Leah had surgery scheduled for 5pm.  Her neurosurgeon, who also did her back repair 3 weeks ago, started just before 6 and came out to the waiting room at 6:40 to tell us that he was done and "we'd be very happy."  What a relief!  He truly does have magical hands!!  She spent Wednesday night in the Pediatric Intensive Care Unit (PICU) and I stayed in her room with her.  She was pretty fussy and we could tell she was in a lot of pain.  Every time she moved, she cried.  I tried feeding her and giving her a pacifier, but I could tell that it hurt just to try sucking.  It was incredibly hard to see my little baby be in so much pain.  Finally she got some tylenol at 3am and that gave her some comfort, and I could fall asleep.  At 6:30am she went down to Radiology (in Daddy's arms) to get have a CT scan of her head.  Her neurosurgeon and his nurse assistant came in shortly after to show us the images, and we could see the shunt in her head and the tubing all the way down into her abdomen.  Amazing images!  They also told us that it was working very nicely, the fluid in her head was starting to drain properly.  Relief!

On Thursday morning she was moved to the Infant Care Center (ICC), the step-down unit for babies.  They took her IV fluids down, so she was starting to get hungry and actually wanted to eat.  Thursday was a pretty uneventful day, just a lot of managing her pain and making sure she was eating and making dirty diapers.  On Thursday night she had the 4-channel pneumocardiogram, which we were supposed to do at home the other night but canceled when we scheduled surgery.  This test is to see how well she breathes at night and whether she has any apnea.  Her doctor reviewed the results and found that overall she has good breathing and most of the time her oxygen levels stay high, but she did have a little bit of apnea.  He was actually hoping for these results because he can now prescribe some medication to help her lungs, which he thinks is important for all of his Spina Bifida patients.

Finally on Friday we were given the ok to go home.  But first we had to learn about warning signs for shunt failure - things like overly fussy, overly tired, fever, swelling around her incision, and anything that is just out of the ordinary for her.  We also had to pick up a prescription that we'll give her daily for her lungs and Tylenol to help her pain.  The doctors also gave us a special cream that we'll use 3 times a day to massage her lower back, hips and legs.  Since she doesn't have much movement, this will help her circulation. 

We got home Friday afternoon, and I think she knew she was home.  I put her in her swing, and she just vegged out.  She doesn't mind a lot of noise but she does not like having all the wires and tubes all over her and she hates when people come around and poke at her.  She also likes when we walk around with her, and we couldn't go very far when she has 10 things stuck all over her.  And then it was like we had never gone anywhere.

Surgery Update

Jen is still with Leah at the hospital, which blocks this blog site, so today you will be hearing from her sister, Maureen. I just talked to Jen briefly this afternoon so I do not have the whole story, but here is an update.

Leah had her surgery last night and everything went very smoothly. They put the shunt in her right ventricle. She was fussy and in pain last night and this morning, but this afternoon she began to feel better and has been feeding normally.

Thanks for everyone's prayers and thoughts for them. I cannot wait to hold my beautiful niece and I know I am not alone. Check back tomorrow or later this week for a more detailed update once Leah goes back home!

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. 

Spina Bifida Awareness

October is Spina Bifida Awareness month!  I wanted to share a really cute blog I’ve come across.  This mom is featuring the Faces of Spina Bifida, where she profiles a couple kids each day who have SB.  As you can see, they all are happy, healthy kids who just happen to also have this condition.   Reading all these blogs the last couple months has really helped me to realize that we can do this and it’s not as scary as we thought it was going to be. 

http://themclellands.blogspot.com/

Since this is awareness month, there’s also been a lot of attention to the fetal surgery.  This year marks the 12-year anniversary of the famous photograph where the fetus is holding the hand of the surgeon.  I think it’s great that it’s drawing attention and awareness to Spina Bifida.  I certainly hadn’t been familiar with this until we got Leah’s diagnosis.  We were given the option to look into fetal surgery and decided it wasn’t for us.  We’ve had a lot of people ask about it, so I wanted to share what I know and why we decided not to go through with it. 

It’s actually very revolutionary technology where a neurosurgeon operates on the baby in utero.  He basically performs a c-section on the mom, who is under general anesthesia, repairs the baby’s spine, and then closes mom back up and she stays pregnant.  The surgery is usually done while the mother is 18-24 weeks pregnant, so we did have a few weeks to decide whether this was something we wanted to do.  If we were interested, we would have been referred to one of 3 hospitals in the country currently performing this operation – Vanderbilt in Nashville, Children’s Hospital of Philadelphia, or UC – San Francisco.  That would have meant several weeks in one of those cities just determining if we qualified for surgery, then we would have had the surgery, and I would come home after several more weeks, where I could be monitored here by my doctors. 

The benefits are that the baby gets surgery when she’s very young, and there is less time for the opening to be exposed to amniotic fluid.  The results so far show that fewer nerves are damaged and in some cases the Chiari malformation (the base of the brain) is able to be repositioned back into it rightful place in the brain.  But it does not cure Spina Bifida.  And that’s why we had a hard time justifying the risks to me and to our baby.  There is an increased chance that she would be premature, which carries its own set of challenges.  The uterus isn’t meant to be cut open at just 20 weeks pregnant.  And I would be at a higher risk of uterine rupture and premature birth with future children.  If this was a life-saving surgery, I would feel differently.  If Leah was our last child and we decided we didn’t want any more kids, I would feel differently.  If this could cure her Spina Bifida, I would feel differently. 

This was OUR choice, this was what was right for us.  That doesn’t mean I don’t think other people shouldn’t do it.  It is the right thing for lots of other families.  And it also doesn’t mean we’ll be risk averse to all new technologies that could help Leah in the future.  I'm glad we heard about it and talked to several doctors who has just been out in San Francisco at a conference on the surgery.  We just decided it's not for us.

We're pretty much in the final home stretch.  My doctors have gone from telling me to call when I have 4 contractions in an hour... to 6... to now when they're 5-7 minutes apart.  That means I'm getting close!!   It's hard to believe that it's now only 3 weeks away (at most) when it feels like we just found out.  We're both feeling a lot of emotions, but I think most of all we just can't wait to meet our baby girl.

Our First Babies

Yes, Leah is our first human baby, but we've had Jack and Jill for about 8 years now.  They have been treated like royalty in our house and I have to wonder just a little bit how they'll do when we bring a baby home.  Jack is incredibly friendly and I'm sure will be very interested in her... that is, until she starts screaming or reaching for him.  Jill is my baby and follows me everywhere.  As soon as I sit down, she's on my lap, which is tough to do these days.  I like to think that I'll be feeding Leah with Jill curled up next to us.  Hmmm, am I dreaming??

They are also very interested in all of Leah's new stuff.  Here they are trying some of it out.  I'm sure we'll get the side-eye from those of you who aren't cat lovers (or animal lovers at all).  But not to worry... I keep the door to Leah's room shut and plan to clean everything again before she comes into the house.


Jack testing the bouncy chair.  He hightailed it out of there when it started vibrating!!

Hey, this looks like a comfy spot for a nap!  (he didn't stay for long)

Ok, so this wasn't the cat's fault.  She clearly didn't enjoy this.  And Ty was just goofing around.  You won't see us walking around town like this. 

Happy Anniversary!

Ty and I celebrated our 9 year wedding anniversary this week.  On October 12, 2002 we said “I Do” and even though we were really young at the time, I know it was the best decision I ever made.  On Wednesday night I was updating our anniversary book, and we had so much fun reading about all the stuff we’ve done in the last 9 years and how we’ve celebrated this day.  We’ve been in 3 houses, traveled to 2 continents, hosted Thanksgiving and Easter in our home, watched 3 of our siblings get married and have babies.  We’ve also had our fair share of challenging times, including this year as we’ve dealt with our baby’s diagnosis.  But the good has far outweighed the bad, way more ups than downs, the smiles and laughter more plentiful than tears, and we still really like spending time together. 

To my husband, I love you more today than ever. 

We set a date!

It looks like Leah’s birthday will be Monday, November 14!!  That is, unless she has different plans to come early.  Here are some fun facts about this date:

• She will be a Scorpio.  Here’s what astrology.com says about this sign: “Beneath a controlled, cool exterior beats the heart of the deeply intense Scorpio. Passionate, penetrating, and determined, this sign will probe until they reach the truth. The Scorpio may not speak volumes or show emotions readily, yet rest assured there’s an enormous amount of activity happening beneath the surface. Excellent leaders, Scorpions are always aware. When it comes to resourcefulness, this sign comes out ahead.”  
• According to the Chinese zodiac, she will be born in the Year of the Rabbit.  The Rabbit is a lucky sign.  Rabbits are private individuals and a bit introverted.  People born in the Year of the Rabbit are reasonably friendly individuals who enjoy the company of a group of good friends.  They are good teachers, counselors and communicators, but also need their own space.
• She will share a birthday with Condoleeza Rice, Veronica Lake, Yanni, Britain’s Prince Charles, King Hussein of Jordan, and Claude Monet. 
• Uncle Marty needs to say some funny things about what happened on this date in history.   

I will continue having weekly doctor appointments until then.  Last week’s appointment went fairly well.  On her growth check, we can see that she continues to get bigger and weighs in around 4 lbs.  Her head size still lags behind a few weeks, but the good news is that she’s continuing to grow.  Everything else looks really good – amniotic fluid, practice breathing, blood flow in/out of her heart and brain, and heart rate.  And each ultrasound technician comments on how much hair she has.  Overall I’ve been feeling really good too.  The doctor commented that my ankles aren’t as swollen as he would expect in someone who’s 34 weeks along… even though Ty and I were laughing about my “cankles” the other night. 

The bigger question is whether we’re ready for this little girl to get here.  I think the resounding answer from her Daddy and Mommy is YES!!!  We can't wait for her to get here so we can see her (and see how much hair she actually has!) and hold her and kiss her and see her wear all the ridiculously adorable outfits we've received.   But as much as we both want to meet her, I hope she stays put for the next 5 weeks.  She’s a little baby and needs to get bigger for her surgery. 

Fun Pictures!

We've been busy getting ready for Leah's arrival.  Here are just a few of my favorites. 

Leah's crib and bedding

She already has a closet full of clothes :)

Her room...

Shelves full of books, toys, diapers... probably the neatest it will ever look

Hopefully she'll be entertained by one of these.

Daddy just couldn't resist... isn't this the cutest chair?!?!  Hopefully she'll actually sit in it.



32 Weeks and Counting…

The last couple weeks have been very busy for us.  Last week Ty and I had a tour of the hospitals where I’ll deliver and where Leah will have surgery and stay until she’s ready to go home.  They are 2 separate hospitals that are across the street from each other and connected by a tunnel.  We started out at the birth center with the operating room where I will be.  Right next to that is the resuscitation room where the Neonatal Intensive Care Unit (NICU) team will stabilize her before taking her to the Children’s Hospital.  Depending on how she’s doing, they may be able to bring her back into my OR so I can see her quickly before they take her.   Ty will go with her to Children’s, which means I’ll be alone in the OR while they finish my surgery.  I will then go to recovery until I am stabilized, and then I’ll go on a stretcher to see her in the NICU… It sounds like an NBC medical drama!!  The pediatric neurosurgeon’s team will be called to come and evaluate her for her back surgery, which is typically on that day or the following.  They will also check her brain ventricles for hydrocephalus and determine if/when she will need a shunt. 

The NICU rooms are all private with a couch and chair so we can spend as much time in there as we want.  The rooms also have wireless internet, so we’ll be able to keep everyone updated on her, and maybe even have Skype dates with her aunts and uncles.  The hospital has a Ronald McDonald House on the same floor as the NICU where Ty and I can hang out, cook meals, make phone calls, watch TV, whatever. 

We also got to meet Dr. Marker, who is the Spina Bifida doctor.  He will come to see her in the hospital after she is born and will care for her throughout her childhood.  He’s been doing this for a long time and comes highly recommended by everyone we talk to.  We are in very good hands! 

This past weekend we went to the Spina Bifida Association of MN picnic and got to meet a lot of other families and kids.  There were some kids who were running around with just leg braces and others who used walkers or who were in wheelchairs.  But aside from that, they were just regular kids… funny, smart, sweet and they all had great personalities!!  We really enjoyed talking to other parents about where they go for their care and what kind of equipment they use and how they do in school.  It was a little overwhelming and it definitely makes it feel very real now, but I feel so fortunate that we’ve started to build a network of other parents we can call for advice or information or just to vent.  Leah even won a door prize!  I picked out a big pink bunny for her.

I’m now going to appointments weekly.  Last week she was really moving around and go another perfect score on the bio-physical profile.  Brain ventricles are keeping the same, no change since last time.  The technician could see her ear and it looks just like mine.  She also can tell that Leah has hair… lots of hair!!  We got to see her wiggle her toes, yawn and stick out her tongue… so cute!!  But, her little tiny pea head is still a little bit of a concern.  It’s still measuring about 3 weeks behind.  Last time her belly was measuring small, though that’s catching up..  She is still small, even though I’m gaining enough.  They aren’t overly worried yet, and her head continues to grow, which is good, but just something that will be watched closely.

This weekend I also finished getting all the essentials for Leah’s room.  My friends here in town threw me an awesome baby shower last week.  I had a great time and got stocked up on blankets, crib sheets, books, toys, bath soaps, swaddlers… I love having other mommy friends!  On Saturday I got a mattress and some diapers and did about 5 loads of laundry.  I know I’ll be sick of doing loads of baby laundry in a few months, but it was so fun folding little tiny socks and baby blankets.  We’re pretty close to having everything ready for her.  In the meantime, I just need to fatten this baby up before she’s born.

New Wheels and Good News

I’m down to single digit weeks left of the pregnancy (9!!), and I just can’t believe how quickly it’s flown by.  We haven’t scheduled my c-section yet and probably won’t have an official date for a few more weeks.  But it’s kind of nice knowing that I won’t be a week or more overdue.

I had another appointment yesterday.  How lucky that I’ve gotten to see Leah so much before she’s even born!!  First they hooked me up to the fetal monitor machine to measure her heartbeat and had me push a button each time I felt her move.  She started out being a little stinker… she was moving like crazy while I was in the waiting room, but as soon as they hooked me up to everything, she got very still.  After a little bit of poking and coaxing, she started moving around again.  Then I had another bio-physical profile, where, like 2 weeks ago, the technician looks for 4 things: heartbeat, breathing, movement and muscle tone, and she was a little champ!  The tech also took a quick measurement of her brain ventricles, which is important to know if she has or will develop hydrocephalus.  Her left ventricle stayed consistent and her right actually measured smaller than it did last week…. WAY TO GO LEAH!!!  That was super good news to hear.  Now, it may just be that measurements from week to week are off a bit (it’s hard to be very exact), but it’s so great to know that it’s staying constant.  They also weighed me and I’m up 20 pounds… 5 lbs in the last 2 weeks… oops!  I guess I overdid it a little bit on the ice cream and treats lately. 

On a more fun note, Leah and I both got new wheels yesterday.  I traded in my Saab for a Honda Crosstour.  It’s very nice, a little bigger than a sedan with a hatchback, and has tons of room in the backseat.  I have to say, I was a little sad to trade in my little sporty sedan for something bigger.  The Saab was very good to me over the years, but I know I need something to fit a stroller and car seat and all the accessories that go along with a baby.  Speaking of strollers and car seats… Leah’s first set of (many!) wheels came yesterday too, along with her car seat.  I had so much fun driving it around my living room after Ty and I put it together... haha!!  I can't wait for the day soon when we put her in the car seat to go home for the first time!

T-minus 11 weeks...

It’s the last day of August, tomorrow is September 1.  I can’t believe time is going by so quickly!!  I have just about 11 weeks left before Leah comes… yikes!!  On Sunday we got to meet a family with a daughter who has Spina Bifida.  We spent time meeting 5-year old Addie.  She has SB at L4 and hydrocephalus, so she also has a shunt.  We are so grateful for our new friends Missy and Troy for sharing all the good and bad, showing us pictures and telling us all kinds of good information about their hospital stay and all the doctors we’ll meet.  Most of all, we loved seeing Addie run around (yes, she can walk!!!) and be a total normal kid.  Yesterday I met Sarah, another mom who adopted a daughter with SB, and she gave me tons of information about how to apply for medical assistance, which we’ll need to do because equipment is NOT CHEAP.  In a few weeks we are scheduled to take a hospital tour, meet the NICU team, and meet the Spina Bifida doctor who will take care of Leah throughout her childhood.

I had an appointment on Monday again to check Leah’s growth.  Since we first saw her at 20 weeks, she’s been measuring small.  At my last appointment, her head size was almost 3 weeks behind.  I was getting a little nervous because that can mean that she’s not developing appropriately.  But this week, they measured her head, belly, and legs, and everything is measuring about 2 weeks small.  The good news is that she’s not below the 10^th percentile and she continues to grow each week.  Her brain ventricles continue to be within normal range, but her right ventricle is measuring larger than the left, and also larger than last appointment. 

The other good news.... they also did a bio-physical profile, which she passed with flying colors.  She has a strong heartbeat, she made 3 independent movements (lots actually!), the amniotic fluid is good, and she breathed on her own for 30 seconds.  Babies start practicing their breathing around 28 weeks, so we were very lucky to catch her doing that.  And the conclusion is that she will just be a small baby, which isn’t unusual for kids who have neural tube defects.  It’s just funny to think that me, 5’9 and Ty, 6’4 are going to have a small child.  I was very relieved to hear that she is a healthy baby.  I also passed my glucose test, have good hemoglobin levels, and a normal blood pressure, so I’m a healthy momma.

Now we're focused on finishing getting ready for her arrival. 

Leah's Diagnosis

Spina Bifida occurs when the baby’s spine fails to close during the first weeks of pregnancy, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back..  The point along the spinal cord where the undeveloped area occurs is called the level or lesion of the Spina Bifida.  Leah's lesion is approximately L2-L4, which means that it's on her Lumbar region.  Her lesion is fairly high, which generally means that more nerves will have damage.  

Spina Bifida causes pressure on the entire spinal column, therefore the brain tends to be positioned further down into the upper spinal column than it should be.  This change in position is part of a condition called the Chiari Malformation.  The brain tissue displaced into the upper spinal canal blocks the normal flow of cerebrospinal fluid, leading to a build-up of fluid within the ventricles of the brain, called hydrocephalus.  Right now Leah's ventricles are within normal range, but they are at the high end of normal. 

Very soon after she is born (within 48 hours), Leah will have surgery to close the opening in her back, and she will be in the NICU for about 2 weeks in recovery.  The surgery disrupts the flow of spinal fluid, so it is highly likely that she will develop hydrocephalus soon after surgery.  This can be fixed with a shunt that will help drain her fluid. 

In terms of her development, we just have to wait and see.  A lesion at L2-L4 generally means that she'll have movement in her hips and maybe down to her knees.  The Chiari Malformation affects the cerebellum, a part of the brain that controls swallowing, breathing, and fine motor skills.  BUT all kids with SB are different, and there is no way to predict what she will and won't be able to do. 

One of the best pieces of advice we got was not to go out and Google any of this.  There is a lot of information out on the internet that is outdated or that paint an overly grim picture or just plain wrong.  Technology has come A LONG way in a short period of time for people with SB.  I try to stick to the sites of medical hospitals that specialize in SB research, like UC - San Francisco, Vanderbilt, and Children's Hospital of Philadelphia (CHOP), and the SB Association. 

The good news is that carrying a baby with Spina Bifida is no more risky to me than a "regular" baby.  Spina Bifida doesn't affect her time cooking, so she should go to full term.  And in fact, my doctors want her to develop for as long as she can, so she can be strong for her surgery.  The other good news is that she's already developing a little personality.  She likes when the cats lay on my lap and purr.  And she doesn't like getting her picture taken at my regular ultrasounds.  What else will she be like?  We just have to wait and see.

Welcome to Holland

When I was starting to read about Spina Bifida, I came across "Welcome to Holland" and I wanted to share.  I don't have a special needs child yet, but already I can relate.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."  But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It's taken me a while, but I very much look forward to going to Holland!

First Blog Post

This is the first post here and my first blog.  It's definitely a work in progress!  This is the story of me and my husband, Ty, and our first baby.  We found out I was pregnant in March 2011 and we were so excited.  We decided not to find out the baby's gender and we weren't going to share names... oh, how we changed our minds a few months later.  In June we went in for the 20-week ultrasound.  I thought it would be a fun way to see our baby but we were in for a surprise when the technician told us she saw something of concern on the baby's lower lumbar spine.  She sent us upstairs to talk to my doctor right away.  After waiting an hour... and panicking... the doctor took us back and told us that she saw "many anomalies" on the baby, especially on the spine, the heart, and the neck.  That was the worst day of my life.

The next day we went to have a Level II ultrasound, which shows the baby in greater detail.  The technician was able to see the baby's heart and could tell that the heart is very strong, but she confirmed that the baby has Spina Bifida.  Later that week we met with a pediatric neurosurgeon, who gave us a lot of information on this diagnosis and what it means for our baby.  As hard as it was to hear it, I did feel a bit of relief to hear what it is and prepare for our life with a special needs child. 

It was sad to tell our parents and our friends about Spina Bifida, but we couldn't be more blessed with people who love and support us.  And then we did the unthinkable... we found out the gender and picked a name... and shared it with the world.  It was funny, I found out over the phone that we would be having a girl.  I kind of knew it, I had always felt a girl vibe.  I came home from work and told Ty.  Then we decided on Leah.  Early in my pregnancy we had discussed names, and Leah was the girl name we both agreed on.  And then we called our parents and siblings to tell them the good news. 

The last 6 weeks have been kind of a blur of vacations and baby gear and enjoying summer that I haven't had a chance to really think about Spina Bifida.  But I now have doctor appointments every other week and will soon be going weekly.  We need to tour the hospital where I'll deliver Leah and where she will be after she's born.  So with only 12 weeks left of my pregnancy, we'll start thinking more and more about what's in store for us.

I hope to post here often enough to give family and friends updates on Leah.  Ty and I are so excited to meet her, but we're also nervous about what's in store for us.  It's the unknown that is the scariest.