2 Months Old Today

Our baby girl is 2 months old today!  My goodness, the time has flown by.  I am so happy to report that Leah is doing amazingly well.  We had her 2-month check-up yesterday, and she is up to 9 lbs, 5 oz, so she is 50% bigger than she was at birth.  She is also 22" long and her head is 36 cm.  She is in the 45th percentile for height, 20th for weight and 15th for head size.  Before she was born, I remember being so worried about how small she was, especially her head.  She was even below the 5th percentile and the doctors were saying she could have microcephaly.  And I look at her now, she's starting to get a double chin and her legs are fattening up.  It makes me want to cry tears of joy to know that she's a healthy and growing baby. 

She went through a big growth spurt last week, eating every 2 hours and even more often in the evenings.  I think she had spent so much energy the last 8 weeks on trying to survive out in the world on her own and recovering from 2 big surgeries; now she kind of has the hang of it and can start packing on the pounds. 

We were a little sad at her appointment, though, when the doctor checked her reflexes and she didn't respond.  He tapped on her knees and her legs didn't move.  She also had several immunization shots in her legs, which she didn't feel either.  The nurse warned us that most babies let out a scream like they've never done before, and first-time parents are often shocked by the noise that comes out of their kid.  But Leah just laid there looking around like nothing was going on.  She was way more upset about getting naked for her weight check.  We were prepared for this, since she didn't have any response when she got a shot at 2-weeks, but it's still breaks my heart a little to be reminded that her legs don't work. 

However, we do have much to be thankful for.  Leah is meeting all of her development milestones... she is responding to our voices and following us around the room.  She's watching our faces when we talk to her, and she is oh-so-close to sucking her fingers.  And she has a lot more alert time, sometimes she doesn't nap much during the day, though that makes her a fusspot by the evening.  She also gave me her first real smile this morning when I went in to get her up.  I even got a little laugh with the smile... so cute!  Ty and I thought she'd smile for the first time at a stranger.  Hopefully Daddy will get one tonight when he gets home :)

Other than her check-up yesterday, we don't have much for doctors appointments for the rest of the month.  We'll go back to the Cranial-Sacral Therapist next week, but we don't have any Spina Bifida check-ups until February.  It is nice to have a mostly empty calendar for a few weeks.  Top priority is spending as much time with her as I can, feeding her and watching her grow. 

Trying to get better at more posts :)

It has been so nice outside here in Minnesota, it does not feel like January.  Last January we had something like 3 feet of snow on the ground.  Today was 45 degrees and sunny.  Ty got home from work a little early and we got outside and went to Trader Joes, Macys and even had time to grab an early dinner.  I think Leah likes being out and about, especially in her Baby Bjorn, because she just looks around at all the lights, and she even fell asleep at the restaurant.  It's so fun taking her out because everyone comments on her hair and her big blue eyes.  It makes us feel so proud!


We also had a little excitement tonight during tummy time.  She was propped up on her tummy time mat and got herself onto her side.  She was wiggling her little butt and pushing really hard on her arms.  We were so excited to watch her try to move on her own.  It won't be long before she is rolling around.  I already have to hold onto her if I lay her on my lap and I would never leave her alone on the couch or bed because she shimmies and twists around.  I know that even though she might not have a lot of movement in her legs, she's going to be mobile!! 


We had a busy week this week.  I took Leah into work for a going-away party and she got to meet some of my co-workers.  That was so much fun!!  She also had an eye doctor appointment.  Since she has hydrocephalus, our spina bifida doctor wanted to make sure her eyes aren't affected by the increased pressure.  He also noticed some drifting of her eyes that he wanted to have checked out.  Thankfully, everything with her eyes looks great.  She has no residual damage because of the hydro and the eye doctor thinks that her drifting will clear up in a month or 2.  She'll go back to the eye doctor when she's 6 months old and then will see him 1-2 times a year going forward.  Add that to the list of doctors she'll need to see regularly.  Ty thinks we should just write a check to our insurance company to cover our deductible now... not a bad idea!

I have also started taking Leah to a Cranial-Sacral Therapist.  CST is a bodywork method that focuses on gently stimulating the Cranio-Sacral system (membranes and fluid that surround the brain and spinal cord) to heal the body by improving the functioning of the central nervous system.  It's a more natural and holistic method of healing.  Our therapist has seen her twice and has done some pretty amazing work so far.  Leah's little body works so hard to grow and accommodate her spinal injury, and this therapy will hopefully help the spinal fluids and her nerves connect better.  I know it's not going to be a miracle cure, but if it helps her - even just a little bit - I think it's worth trying.  If it helps her to walk, just for 1 days, it's worth it.  If it saves her a shunt revision, even for 1 day, it's worth it.  She deserves every chance she gets to be healthier and for her little body to work better. 

Being back at work yesterday reminded me that my maternity leave is quickly coming to an end.  I want to make the most of these last couple weeks because this is time with her that I'll never get again.  So, Leah and I were super lazy and stayed in bed until 11 am.  She woke up at 7:45 and I wasn't ready to get up, so I brought her into bed, fed her, and we snoozed until she was ready to eat again at 10:15.  It was heavenly!  I can't wait to do this everyday until I go back to work!

Good Bye 2011... Hello 2012!

Wow, I can't believe 2011 is over already!  What a year it was for us.  When I look back at 2011, I think of how life changing it was, in so many different ways.  We truly went through a roller coaster of emotions this year... the incredible joy of getting pregnant to the gut-wrenching, earth-shattering news of a baby with spina bifida and then the greatest joy of getting to meet and hold our baby.  Can I say WOW again?  As hard as it all has been, it has absolutely been worth it.  I just can't love this little baby any more.

Leah and I are trying to settle into a routine now that Ty is back to work.  She's normally eating every 3 hours during the day but going 5-6 hours at night, which is working out very well for us.  I don't know what I was expecting, but Leah seems to be a normal newborn.  Most days are spent feeding her and changing her and snuggling with her.  I do check her head a lot throughout the day to make sure her soft spot is still soft, but otherwise I don't think about spina bifida much.  But we did have a little moment last week when she spit up her dinner... all over me... and we both got concerned that it was a sign of shunt failure.  One of the signs is vomiting, and it scared me to see that happen.  But she seemed fine otherwise and it didn't seem to bother her nearly as much as it bothered us.  It's just one of those things that we are more sensitive to because of her condition but it probably just normal newborn behavior. 

Last week we had our regular doctor appointments - head ultrasound, followed by meeting with the neurosurgeon and then the spina bifida doctor.  Everything looks great, and they told us we don't need to come back for 4-6 weeks!!!  That is absolutely amazing news.  Hopefully we'll stay far, far away from the hospital until February. 

On a more fun note... we celebrated Leah's first Christmas!  She actually slept through pretty much all of it, but she was so cute in her little outfits.  I'm sure next year will be way more fun when she's old enough to open her own presents and enjoy her gifts.  It was such a fun Christmas this year.

2011 was a year of highs and lows, but I think last year has also taught us a lot about love and friendship and generosity.  We have been so overwhelmed by how supportive people have been.  We have received gifts from people we don't even know.  I know there are a lot of people out there who read this blog and who pray for us and who support us, and we continue to be amazed at the support from complete strangers.  Thank you to everyone who loves and supports us, who prays for us, and who are rooting for us and our little girl. 

We're looking forward to 2012, to watching Leah grow.  I can't wait for her to start smiling - it should happen any day now.   And then she'll start laughing and hopefully saying a few words.  She's already getting bigger and looks older than she did just a few weeks ago.  Here are a few recent pictures of Leah.  Happy New Year!!

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!