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.
Tuesday, December 13, 2011
Thursday, December 8, 2011
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.
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.
Saturday, December 3, 2011
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.
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.
Thursday, December 1, 2011
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!
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!
Wednesday, November 30, 2011
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.
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.
Sunday, November 27, 2011
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!!
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!!
Saturday, November 26, 2011
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!
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