December 29, 2008

Merry Christmas

I can hardly believe it is the end of the year! We have been so spoiled not to have any appointments, tests, or surgeries during this holiday season. We are so thankful. Both girls have enjoyed thier new toys and it has been fun watching them play together.

Whitney is doing great although a little crabby from teething. Still no teeth and her 1st birthday is next Wednesday! Our constant daily battle is her constipation issue. I need to assist her with her bowel movements more times than not. We will have her one-year appointment with the pediatritian next week so I will inquire more of what can be done for the present and future. She sits up very well on her own, can hold herself up on her knees with her arms locked and can move backwards when she is on her tummy. These are all exciting things for us. We continue to massage her legs and feet a few times a day to help increase her circulation.

Brace- She continues to wear her brace full-time. We have an appointment in the beginning of February to check how her hip is progressing. Please continue to pray that it is growing sufficiently enough that we can go to part-time wear. This would enable her to go back to a more intensive therapy.

December 9, 2008

Great Month

I thought I would just let you know how well we are all doing. It has been a great month with no doctor appointments and much travel. We were out of town as much if not more than in town this month. Taking advantage of each moment together. We first drove to Cincinnati. Matt had to be there for work so the girls and I saw the zoo, aquarium, and relaxed at the hotel. The following week we were in Chicago. We stayed downtown and had fun shopping and saw family and friends as well. We are so thankful we were able to travel with Matt. Then we went to New Buffalo with some old college friends. The girls are great travelers!

November 4, 2008


We had a hip appointment this morning. Good news is that the hip is still in the socket! It is continuing to develop. We are so thankful to receive good news that her body is continuing to respond. I was reminded today as I looked at the x-ray how detailed our God is. He made our bodies in an amazing way. They are so complex. She also said that we do not need to go in for another 3 months. I can't believe it. Wonderful news.

On the flip side, for the next 3 months we are to keep the brace on at all times and continue to only remove it for a maximum of one hour a day. Therapy will need to take a back seat as her hip develops. Hopefully we are able to catch up when Whitney is able. I just have this strong desire to want the very best for her and sometimes we can't have it all. (:

Enjoy the day.

October 30, 2008

Neurosurgeon appointment

We met with the neurosurgeon this morning and reviewed Whitney's CT scan that we had at the hospital a few weeks back. The shunt seems to be doing great. We are scheduled for a MRI for January which we will then use as a baseline for her for the future. Unfortunately she will need to be sedated for this since it will be 45 minutes in length. The CT was only 5 minutes. I do not care for sedating her but I will think of it again in the new year. Not something to worry about now.

We have started to think about beginning Whitney's alternative therapy again at the conductive learning center. We have taken a break since her hip surgery and have just been doing physical therapy. They unfortunately can do very litlle with the brace on and the brace is only allowed off one hour a day for bathing etc. We see the orthopedic doctor next week concerning her hip and in the hope that her hip is continuing to develop I will ask if we can begin to have more time with the brace off. We do not want to miss other developmental possibilities such as crawling and standing.

October 27, 2008

Fiona Wants Purple

Fiona informed me this morning that she wants a purple brace. "Whitney pink, Fiona purple brace" She was very serious and I had to smile. It also reminded me how thankful I am to have a healthy daughter. I am so thankful that Fiona does not need a brace and that she was able to point this out to me. There are so many things to be thankful for.
Just thought I would share. Have a wonderful week.

October 22, 2008

Appointments Gallore

We have had a few too many appointmnets this month. Thankfully it is drawing to a close and we only have one so far next month. Just in time for the holiday season. I need to back track a little to update you.

Pediatrician: 20 lbs and 4 ounces and 28 inches long. She is growing well and seems to be on track with language and fine motor development. We were thankful for a good report after her recent hospitalization.

Urologist: We had 2 appointments. The first at the hospital for an ultrasound. They looked at Whitney's kidneys, both front and back, and her bladder. The second appointment was this past Friday where we saw the doctor and were given the results of the ultrasound. Her kidneys are healthy and it appears that no damage was done during this last bladder infection. Her kidneys are growing at an appropriate rate. We are very thankful for this report. She will have many urinary track infections to come but in six months we can start a special yogurt formula and a cranberry supplement to try to control this.

Plastic surgeon: He checked the scar on her back and thought all looked well. The cast had caused her skin to break down along her scar but it has healed up nicely. We do not need to see him until next year! This is great news. I am daring to hope that the appointments are starting to become fewer and fewer between.

Next week we meet with our neurosurgeon and he will check her shunt. I hope he will go over the MRI we had while we were in the hospital. I am curious to hear more information. The first week of November we find out how Whitney's hip is doing through x ray. Please continue to pray that the brace is able to hold her hip in place and that the hip continues to form correctly.

October 7, 2008


The cast is off! We can hardly believe it. I have been smiling all day. Whitney had an x-ray with the cast on to check her hip and all looked well so we proceeded to remove the cast. I was nervous to see what was beneath the cast but the cast itself and her skin looked better than what I had hoped. We are so thankful! The first thing Whitney did was put her toes in her mouth. I think she missed them. We then had an x-ray taken with her brace on to see if the brace was able to keep the hip in place. It worked. The hip had grown sufficiently in the past 6 weeks enabling the brace to do its magic. Whitney and I began dancing a little in the exam room and our doctor reminded me that this is progress in the right direction but we are not out of the woods yet (I still wanted to dance). We compared a before and after x-ray and I was able to see that the cup of her hip is no longer as straight as it once was. It still has a way to go but it has started to develop! Our next appointment is in 4 weeks when we will check how it is doing. Whitney is to wear the brace at all times until then when we can reassess. If the hip does decide to come out of socket again there is little to nothing we can do. Thank you all for your diligent prayers and please continue to pray that God, in his healing hand, will continue to form our little Whitney's hip socket.

One year ago we were in Philadelphia at the beginning of this journey. Thanks for walking with us as we continue.
Matt, Susan, Fiona, and Whitney

September 30, 2008

1 More Week

One week from today we find out how the cast has been working. We will either leave the doctor's office with a cast or a brace. Please pray that we will not have to put on another cast and that Whitney's hip will heal in the correct location.

We saw the eye doctor for the first time yesterday. They were concerned about her optic nerve and this was more of a precautionary visit. Her hydrocephalus put pressure on her eyes before her shunt was placed. Thankfully her optic nerves look normal and are developing well. She is a little near sighted which is common for her age and should go away by the time she is ten. The doctor did a wonderful job and Whitney was only slightly uncomfortable when they dilated her eyes.

September 18, 2008


It is time to remember what we are thankful for:

1. Loving family
2. Solid marriage
3. 2 beautiful girls
4. Helpful church family
5. City with excellent health care
6. Great house & neighborhood
7. Joy & peace from the Holy Spirit
8. Job & insurance
9. Vacation next week
10. Whitney's skin infection clearing up
11. Fully operating shunt
12. More than 1/2 way done with the cast

There is so much. What a mighty God we serve.

Time Stood Still

Last week we were battling Whitney's constipation. She is predisposed to this as we are still unsure as to her control over her bladder and bowels and were prescribed a laxative. (Her skin is doing much better, by the way.) Sunday afternoon Matt and Fiona left for up north. Matt had to work up there this week and we thought Fiona would enjoy a few days with her grandparents. Little did we know Whitney would begin vomiting on Sunday night. She became fussy and lethargic as well. These are 3 of the signs for shunt failure so Whitney and I headed to the ER. Thankfully Fiona was all set and in great hands. That is the beginning of God's providence shown to us.

We were registering at the front desk of the ER and Whitney promptly vomited again, which was perfect timing. We were able to bypass the waiting room and triage and head right in. We began many tests. The stress level was pretty high at this point as we were not sure what we were dealing with. This is also when Whitney's bowels decided to move. I will spare you the details and just tell you that the smell was bad enough for them to shut the door because people passing our room were asking what that smell was. I also had to apologize to each doctor and nurse who came in. Through this I was distracted with trying to keep the cast clean, Whitney content, and Matt updated via text message.

I was notified that Whitney had a urinary tract infection and they were going to consult the neurosurgeon as well. They admitted us around 2 a.m. Monday morning, after 6 hours in the ER. Needless to say Whitney and I did not sleep very much and she just wanted to snuggle. We continued to snuggle for a couple days. (: Tests continued and we also were able to complete the CT scan without anaesthesia. Through this we learned that the shunt was operating wonderfully! We are so thankful that we did not have to undergo another surgery.

Time went very slow as Whitney and I had a lot of 1 on 1 time together. I did not have too much energy to update people so our visitors were few and far between. Thankfully breastfeeding moms are given meals and the staff was wonderful with keeping me stocked with many forms of caffeine. I did not leave her side and we continued to snuggle.

Many antibiotics, observation, and tests later we were given the option to go home. They still were not sure which antibiotic they wanted to use for her but they were willing to work with our pediatrician. So, Tuesday early afternoon we headed out of the hospital. Two women from church were there to help me discharge and out to the van. I am so thankful that God is in charge of the many details.

We did not go directly home. First, we needed to stop and get Whitney's cast expanded as she was growing out of it. Secondly, we headed to the pediatrician to receive and 12 hour antibiotic shot to tide her over until we knew what they wanted to prescribe for her. THEN we headed home. This is when time began again. I opened the door and everything was just as I had left it.

We are now beginning our normal routine all in perfect timing as Fiona is coming back this evening. What a week.

September 9, 2008

Sensitive Skin

Yesterday as I gave Whitney her daily inspection and bath I noticed she had a rash under her cast on her back. The rash is on the left of her back and all over her scar from her first surgery to repair her spinal cord. When I called the doctor yesterday she wanted us in early this morning. We received some cream which seems to be helping a bit. She said that if it does not clear up soon then we would have to remove the cast to prevent further breakdown of her skin. Please pray with us that her skin will heal quickly and that God will protect it from future infection.

September 2, 2008

New Routine

How are we? I would say we are doing well. Whitney is tolerating her cast quite well. She was a little somber for a few days but she is now back to her good natured self. I am learning better and more efficient ways to care for Whitney each day. I can now change her diaper while she is in her crib in a dark room. We are also all getting used to waking up a few times a night to change her diaper and position so that she does not get pressure sores from the cast. Matt, Whitney, and Fiona now sleep through this new routine. (:

I was blessed to have an 'old' friend come and help us for a few days with this new adjustment and having Matt help this weekend was wonderful as well. We are just taking things day by day and figuring out how things work.

Whitney weighed in today at 21 lbs. with this heavy and awkward cast on. We also had a x ray taken and her hip is still in its correct location! We have our next appointment with this doctor in two weeks to see if there is need to split the cast. Babies grow so quickly that sometimes the cast becomes too tight and they need to split it a little. Then we will see this doctor during the first week of October to have the cast removed and try her brace again. Our hope is that the brace will be able to hold the the femur this time. If the brace does not work then she will suggest putting another cast on for another 6 weeks. We will cross this bridge when we come to it.

Thursday we see Whitney's other Orthopaedic doctor for a check up and see how her AFO's (ankle foot orthodics) have been working on her feet. We hope to get Whitney's brace ready for October on Thursday as well. The next thing on the horizon is an appointment with the ophthalmologist (eye doctor) at the end of the month.

August 25, 2008

Hip Spica Cast

We decided that it may be worth a try to put on a cast. Matt and I were able to pray & discuss this new information on Thursday night and we came to the conclusion that we did not have enough information to make an informed decision. Friday morning I contacted a few of Whitney's specialists in town to get more thoughts on the matter. They all responded very quickly and by mid afternoon it was quite apparent to us as to what decision we should make. The possible pros seemed to outweigh the cons. We are thankful we had to weekend to process this and come to accept the facts.

Our appointment was at 8:30 this morning at the doctor's office. Usually they bring children to the hospital to sedate them but they thought Whitney would be calm enough. She did a great job. We picked out a purple cast and got started. I did have to pull a few tricks out to keep her occupied. Thankfully I did not have to use my emergency trick which would have been to sing. There was the doctor, 2 nurses, and I assisting in the process. It probably would have been a great picture. I brought Whitney's AFO's along and the doctor was willing to stop the cast just above her knee so that she could still use them at night. They also used a gortex liner which looked like a shower curtain when they were putting it on. This will help tremendously if we have any blowout diapers. I need to frequently change her diaper to keep things as dry as possible. She has a smaller size diaper stuffed into the cast with a larger one over top of the cast to hold it all together. I was thankful to discover that she is able to wear an 18 month onesie over top. She is currently in 9 month clothes so, we made a big size jump today. The doctor took an x-ray before we left to check if the hip was in the correct location and it was. We will have another x-ray next week to check again. Please pray that it remains in place and the body will begin to accept it there. Meanwhile my mother-in-law was helping get a special car seat installed in our van while my father-in-law took care of Fiona at home. It all worked out very well and within 2 hours we were headed home with a tired little girl.

It seems that additional care for her will include, frequent diaper changes, changing body position every two hours to eliminate sores, bathing, and transporting her as she is now very awkward to hold and carry.

She is currently taking a nap with her sister and hopefully will begin to accept her new 'outfit'. Thank you for your prayers for us this weekend. We were a little stressed but I think this morning went better than expected and we feel peace about this decision.

August 22, 2008

Disappointing News

We had an appointment yesterday with Whitney's surgeon and after looking at the x-ray saw that the brace is not giving enough support to hold the femur in the correct location. She has suggested that we now place her in a body cast for a period of six weeks and then reevaluate for a possible additional six weeks.

This has been very disappointing news for us to hear as we were hoping that this brace and surgery would be effective. We are concerned with the breakdown of her skin under the cast, her loss of muscle tone, and her developmental progress. There is a less than fifty percent chance that this cast will work and it is hard to know what decisions to make for our dear Whitney. If the cast would work this would be very beneficial to her in the long run for walking and to hopefully avoid scoliosis (curvature of the spine).

Please pray for us as we make this decision as we strongly desire to make the right choice for the well being of Whitney and need God's wisdom. It is comforting to know that our God is a God of all knowledge and He will sustain us. We are open all and any encouragement today. (: Thank you once again for caring for us and Whitney, we covet your prayers.

August 16, 2008

Going Home

Whitney's doctor just released us to go home! Whitney will be ecstatic to lose the IV in her right hand and regain access to her comforting thumb.

As Susan mentioned, the surgery went well. It lasted about an hour, and when we got into the recover room, Whitney was crying and ready to be held. She had that unique cry that told us that she was scared and disoriented. The anesthesia is a real bear. The doctor showed us x-rays that demonstrated that Whitney's leg is in the hip after surgery. Now we pray that the pelvis responds and the hip socket develops.

Last night was a bit rough. Whitney was getting used to her brace and feeling a little discomfort from the surgery (the pain and swelling have been rather mild). At about 10:40, after we had settled her down twice, the IV pump started beeping for no apparent reason. It took the staff (who are exceedingly polite) about an hour to figure the problem, but which time Whitney was disgruntled and upset, and her dad was too. Fortunately, she snuggled back to sleep on my lap and slept relatively well for the rest of the night.

This morning, she seems to be her normal self, smiling and babbling away. The doctor was happy with how her incision (it's very small) looked and ordered our discharge. It will be nice to get Whitney back onto a normal schedule.

After the surgery, Whitney will be wearing a brace for a few weeks to a few months. Longer is actually better here--it means the hip is developing, so the brace is providing additional support. She'll wear it 24/7 for the next week until we follow up with the doctor. We should know next week whether the hip is responding.

We are so blessed that the surgery went well and our only problems were minor inconveniences. We praise God that we are being discharged on schedule and heading home, and we are praying that God will cause her hip to respond. It's amazing how many things have to go precisely right in the right order for a baby to develop into an adult, and yet we take it for granted.

August 15, 2008


A quick update for you. Thank you for your prayers today. The surgery and recovery went well. It has been a long day for us all. There has been much stress and little sleep. Thankfully we had a few visitors throughout the day to distract us. Matt is currently at the hospital with Whitney and I am home to get a few hours sleep and then we will switch. We will write more details later on.

August 6, 2008

Whitney's Hip Surgery

As Susan posted a few weeks ago, Whitney will, Lord willing, have surgery on her left hip next week Friday. I had no idea, but when babies are born, they do not really have a hip socket. The ball joint between the pelvis and the femur begins developing around six months. The ball on the head of the femur is cartilage. When the cartilage comes into contact with the growth plate on the pelvis, the cartilage begins to turn into bone (ossify), and the pelvis begins to develop around the head of the femur. Whitney's right hip is developing properly, but her left hip is not because the femur is not in contact with the pelvis (i.e. it is dislocated). The doctors hope that by cutting one of the tendons in Whitney's hip, it will relax her hip and permit the femur to come into contact with the pelvis. The doctors believe that there is about an even likelihood that the surgery will be successful.

The fact that Whitney's hip is dislocated would not be a major issue if her right hip was also dislocated. But the imbalance created by having one hip in the socket and the other dislocated hinders walking, standing and sitting. The possibility of significantly improved mobility for Whitney made this surgery worthwhile to us.

The surgery seems relatively simple compared to her shunt and back closure surgeries in January. Nonetheless, we'll be staying overnight at the hospital. Please pray that the surgery is successful--the doctors have said that they'll know within a week whether it has triggered the appropriate development of the femur and the pelvis!

After surgery, Whitney will wear a brace to stabilize her hip while the tendon heals (it will grow back together, hopefully without as much tension). We have the brace already. Apparently, it's a big deal that it's pink. Our surgeon's office had not seen one in pink before. We hope to post some pictures of Whitney wearing it (we have it already) later this week.

August 1, 2008

The latest

This morning Whitney had a 7 month check up at her pediatrician. I love this doctor because she is so encouraging and sincere. Whitney is now 18 lbs & 1 oz and almost 27 inches long. She is following the 70th percentile for both height and weight. She is ready to make the move out of her infant car seat and into the 'big girl' seat. We were told again today that she is developmentally ahead which is music to my ears. Shots were uneventful as previously however now I am getting used to her lack of response. Now I may need prayer for when I bring Fiona for her 3 year to prepare me for the screaming. (:

We also went to a summer program for the children at Conductive Learning Center. It was fun to imagine Whitney in a few years being part of that program. It was also great to see so many families and a healthy reminder that we are not alone in this journey.

I received a call today that the new hip brace has arrived. We will get it fitted on Monday morning and have a pre-surgery appointment on Tuesday morning to prepare for the big day.

July 26, 2008

Mommy & Whitney (and new picture with Fiona)

We have had a number of requests for photos, but our hard drive is full, so we cannot download our pictures from our camera. This picture is from last month at a friend's cottage. Susan doesn't know that I (Matt) am posting it.

July 22, 2008


What is spina bifida teaching me? That I have some pride issues to deal with. I have been enjoying this 'honeymoon' stage, the general public not knowing that Whitney has spina bifida. She appears to be a happy, cute, healthy, baby girl and no judgements are made. Having the surgery also means having a hip brace for an extended period of time. I have had to work through this and determine that in large part it has been my pride standing in the way. It is hard not to care what other people think. I hope that I can continue to learn and grow not only with this experience in my life but also with many others. I have a long way to go. Needless to say we have decided to give Whitney the 50/50 chance that this may work. If it works it would be a huge benefit to her long term. We are planning on a 7:30 a.m. surgery on August 15th. Her new hip brace is being fitted this Thursday and we should be ready to go. Please pray that our other fears would also be put aside as we prepare for surgery.

We have had a few other appointments recently and all is well. In therapy we are working hard on rolling over more and sitting up. Hopefully we can get a little further along on these two before surgery. Recovery and the addition of the brace may set her back a little.

Thanks for thinking of us.

July 7, 2008

Hip News

We had our second opinion to discuss Whitney's hip on Thursday and Matt was able to join us. The visit went well as we peppered the poor lady with questions. We also had another x-ray taken as she was unable to feel the hip correctly and that was helpful to see where it is currently. We are in a crucial time frame as her hips have not yet fully developed. Her right hip is on the right on course of development however her left hip is not. They hope for a 20 some degree for each hip socket. Her right is 17 which is good and her left is somewhere in the 40's. It is also very important that she is as balanced as possible as we look to the future. We are still having conversations about this surgery. The tentative surgery date is set for August 15th. We are leaning towards doing it but have not made the final decision as of yet. They would be severing a tendon in hopes the body would 'repair' itself and the growth plate would continue to grow with the hip in place. She would have a hip brace for the extended future as long as it seems to be working. If it does not work then there would be no reason for the brace. We would not need a cast and for this we are thankful. Please pray with us as we continue to make decisions on Whitney's behalf.


We had a great experience at our clinic appointment. I did not know what to expect going into the day so we were the first to arrive. I just wanted to be prepared. We were put into our own exam room and everyone came to us. It was excellent. I brought a bottle of water and a small snack for myself and hardly had time to eat it. We ended up seeing about 10 different people and they just kept filtering in. People ranging from an orthotist to a social worker. There was someone obviously behind the scenes making things go so smoothly. We were also able to get Whitney's braces (AFO's) in the same visit which saved me a trip. The best part of the day was having a few odds and ends questions I have had waiting for someone to answer and I am happy to say they were answered. Overall a wonderful visit and I am so grateful to be living in a city that has so much to offer Whitney.

June 19, 2008

Over due update

I have been dragging my feet updating all of you. I apologize for that. My mind has been processing and processing some more. I may be thinking too much. We had an appointment at the beginning of the month at the Orthopedic surgeon office. We started with having x rays which we have not had since Whitney was born. Unfortunately they showed that her hip is out of socket on her left side and seems to spend the majority of the time out not in. Seeing the x ray film was a blow to me. This is very common for those with Spina Bifida because of their muscle structure or lack there of. I knew this but to see it on your little girl is another thing. Our doctor has recommended a surgery/procedure to lengthen a tendon in hopes that the hip will migrate back in. She would have a hip brace to help with this. The surgery/procedure has a 50-70 percent success rate. She also suggested that we get a second opinion which is now scheduled for the first week in July. If we decide this is best for Whitney it will happen in the next few months. This is a hard decision to make not knowing if it will help. When we look long term it is important that she is balanced to eliminate other issues that could come into play such as scoliosis. Much of what we do now is preventative.

The other addition we have is that she was fitted for her first Ankle foot orthotics (AFO's) This is another one of those things that is not uncommon. She can pull her feet up at the ankle and rests them straight up. These will force her feet in a downward position. She will only have to wear them during naps and during the night. For some reason this was hard for me to process as well. I love her so much that I strongly desire what is best for her. Accepting her differences is all part of this process and I have thoroughly enjoyed this honeymoon stage of just enjoying her being a baby without many props.

Tomorrow we have a clinic where all of the doctors come to one location and you basically have an all day appointment going from doctor to doctor. It seems like a very efficient way to do it so I am excited to go. I may not be excited at the end of the day tomorrow. (: The waiting room will be filled with West Michigan Spina Bifida children. I will let you know how it goes. We will hopefully receive our AFO's tomorrow as well.

May 30, 2008

Stats & Shots

Whitney is now 15 lbs and 8 oz which is in the 65th percentile. Her height is 25 3/4 inches which is in the 75th percentile. We are so grateful that her growth is right where it should be. She is ahead a few months cognitively and with her upper motor skills and her legs are obviously behind. So, we have much to be thankful for. The shots went as the first time. I was prepared this time around and it went fine. Thanks for checking up on us.

May 28, 2008

Neruosurgeon Appointment

We had a good report again yesterday at our appointment. Whitney's shunt seems to be operating as it should and he said that we can wait 2 months to see him again. I just love to hear that! When she turns one we will have a CT scan taken to be our base line scan for the future. I mentioned to him that she has been in a growth spurt as of late and has been a little more cranky than normal. He suggested that she may be teething as well and he is right. I was not even looking for that because Fiona's teeth came in so late. They are so different from each other. I think they have conspired together to keep us on our toes.

We see our pediatrician on Friday so I will keep you posted. She is going to receive shots again. We will see how that goes second time around.

May 24, 2008

Progress is seen

We began this 'new' therapy not knowing what to expect and thinking we would try it out. Well we are happy to report that we have already seen some improvment. Much of what we do is stretching and massage. We have also been showing her how to roll over and going through the crawl motion. The first sign of improvment was last week. When she lays on her tummy I bend her knee to stretch her quad muscle and her leg has been like a little wet noodle then one day she began to resist me. It seems that her brain is catching onto the motion and as soon as I feel a hint of muscle reflexion I drop her foot so she can sense cause and affect. I am not sure I explained that very well... The other exciting thing is that she rolled over yesterday. This is important in the fact that we want to keep her on track developmentally and we are so excited about any new 'trick' she has for us.

Fiona Turns Two

We now are proud parents of a 2 year-old. Her birthday was last week Friday on the 16th. We had a wonderful time celebrating with both sides of the family and even a cupcake with Fiona's neighbor friend. She is at such a fun stage of learning to communicate and testing the waters of independence. She continues to be our delightful girl and I think her biggest fan is Whitney. Whitney immediately lights up when Fiona talks to her. We are blessed.

April 24, 2008

Conductive Learning Center

We are pretty excited to be involved in this program. It is great to connect with another place that seems to know quite a bit about spina bifida. We have added many new stretches to our list. Whitney does not seem to mind them too much. We are doing them 2-3 times per day at home and going to the center once a week to start with. Their goal for Whitney is to stay on track developmentally. This means that instead of her sitting up whenever, which could be when she is 1, they get her to sit up around 6 months like normal. The short term goal is to increase her circulation and for her to kick her legs more. The long term goal is to potty train her and have her walking with a walker. It seems to me that her goals are realistic we just need to help her reach them. I am excited to watch Whitney continue to develop and grow. I know God has big plans for her life.

April 21, 2008


It is time to catch everyone up on Whitney. The urologist appointment went well over all. It was a little discouraging. What it boiled down to was that there are two extremes: catheter every 4 hours the rest of her life or constant bladder infections, of which neither is good. It took me awhile to not look at the extremes and to think of it in terms that Whitney will fall somewhere in between. We will discover this overtime and in the meantime we do not have to cath her which is great news. We did discover that she does have her first bladder infection which we have begun to treat.

We also had an appointment with the plastic surgeon. This went really well. Prayers have been answered and her skull is not fusing together prematurely. For this we are very thankful. Whitney's head shape is doing great as well. Her heard was beginning to get too long as a result of being on her side for the first months of life. We have had her sleeping on a special pillow to minimize this, which she did not appreciate. She was happy to hear that she is no longer in need of it. One less thing to worry about.

The latest news is that we had Whitney assessed by the Conductive Learning Center which just happens to be 5 minutes from our home. A friend had mentioned this to us before Whitney was born but our plates were full at the time. Conductive learning is an alternative physical therapy which was founded in Hungary in 1945. It is very common in Europe and is still getting a name for itself in the US. We are still learning all that is involved but we have decided to begin the program and see how it goes. This involves going there once a week for an hour and will increase over time. They mainly work with Cerebral Palsy and Spina Bifida children to help them become as independent as possible. Our first appointment is tomorrow. We are so thankful that this is available to us near our home. There are families that have moved here and others who fly in frequently for conductive learning. Here is the link

Thank you for checking up on us and keeping us in your prayers.

April 7, 2008


Whitney is now 3 months old and we are doing wonderful which is why we have not posted. Just to let you know, it is a good sign when we do not post. (: All is well. We did have an appointment last week with the neurosurgeon and it was very encouraging. He reminded me of the signs of shunt failure which was a good reminder. Because things have been going well I have not been stressed about her shunt and honestly do not think of it much. So, he encouraged me to continue to be observant. A healthy reminder.

Today we went to the hospital to have a renal ultrasound done. This was an ultrasound of her bladder and kidneys. I tried to 'read' the ultrasound while it was being done but unfortunately I could not decipher what I was looking at. Wednesday we will go to the urologist and he will interpret them for us. My understanding is that they are checking to see if any urine is backing up into the kidneys and if so how much. I will tell you more later this week. She has not needed a catheter up to this point so our prayer is that we would not have to begin and that her bladder and kidneys would function properly.

March 19, 2008

4 years

Today marks our wedding anniversary. As we look back on the past 4 years it is amazing to see all that God has taught us through each other including this new growth experience. I think I can speak for us both in saying we are very thankful for eachother and knowing there are many challenges ahead in our marriage, dedicated to walk through them hand-n-hand. Marriage is a gift, isn't it?

March 17, 2008


Whitney had her two month appointment at the pediatrician today. This means that she recieved shots. I was curious to see if or how she would react them. She did not react at all. I think she may have flinched a little with her right thigh but I could have imagined it. I wanted her to feel it so badly. When Fiona was 2 months old I remember crying because it was so sad to see her in pain and with Whitney I cried because she did not feel anything. I think that if God blesses us with another healthy child I will be happy and thankful when he or she cries.

Overall she received another positive report and for that we are very thankful. She now weighs a whooping 11 pounds and 12 ounces and is 23 inches long. This puts her in the 75th percentile in both length and weight. My many questions were answered and my mind was once again put at ease.

We have a little break again with the doctors and then we are hit hard in April. We will keep you all posted.

March 7, 2008

Two Months Old

We pause today in thankfulness. Thankfulness to our Heavenly Father for bringing Whitney so far in two months time. He has been so good to us protecting her from every angle:

1. Back surgery
2. Shunt Surgery
3. Weeks in the hospital
4. from infection in her back incision
5. from failure of her shunt
6. from many virus' this time of year
7. from her mom's flu
8. from her sister's attacks

I am sure there are many other ways that I am forgetting. God has been so faithful to us I wonder why I still worry. We are so thankful for our little gift, Whitney.

March 5, 2008

2 Doctor Appointments

I have been a little behind on updating you. My excuse is that I had the flu last week. Thanks for praying for Whitney's protection. We are so thankful that the virus did not spread to anyone else.

Last week we met with our plastic surgeon. Her back is looking great and there is no concern there. She also is now able to lay on her back. This is great news for Whitney's comfort. It also confirms for me that all is well with her incision. He wants to see her back next month to check her skull. He is concerned that her skull may fuse together too early. This would cause her brain to run out of room to grow. This is something that can happen when a newborn is shunted. The skull bones are somehow tricked into thinking that its job is done and fuses together.

This week we met with Whitney's neurosurgeon. He came to the same conclusion about her skull and also reassured me that this does not always happen but it is something to be aware of. This calmed my nerves about this a little. If it does fuse early we will have to have another surgery but we will pray that her skull fuses together at just the right time. Before our appointment Whitney had a ultrasound of her head and we viewed the results at the doctors office. I love technology! No more waiting 2 weeks for results. Just go down the street and have them explained as you look at them. We looked at the images from her last ultrasound right before her shunt was placed. The difference between the two was amazing. The first on had two huge black spaces where her ventricles were and in the other they we smaller than a pea. I am truly amazed.

We have next week off in the doctor appointment area. A much needed break.

February 28, 2008

February: Month of Firsts

Whitney has had a big month. She has begun to roll over, smile, and sleep through the night as of Sunday the 24th. I think that being the star of the show Sunday tired her out enough to begin a great new tradition: sleeping. The baptism went wonderfully. Fiona was a little restless sitting up in the front row but with a little sweat we made it through. While we were up front Fiona wanted to be baptised as well but thankfully we started singing a song and she forgot about it. The reception was a lovely time of fellowship together, celebrating Whitney, and a chance to thank many people who have been a great support to us these past several months.

February 23, 2008


We could not wait 5 more weeks to have a party for Whitney. So, we are bending the rules and bringing her to church on Sunday night to be baptised and have a reception after. We wanted to celebrate her birth and the gift that she is to our family. Hopefully, she does not catch any viruses flying around the sanctuary.

All is well at our home. We are settling into a nice routine. Matt will be out of town for the majority of the week next week for work so my wonderful mother-in-law is coming to save the day once again. This coming Thursday we have an appointment with Whitney's plastic surgeon. He will check her back incision and hopefully tell us that we can start laying her on her back. (Whitney tells me that she is tired of being in her bouncy seat crooked.)

February 16, 2008

Good Report

The weeks are flying by and I can't believe Whitney is going to be 6 weeks old on Monday. We were blessed this week again by the presence of Matt's mom. She was only going to come for a few days and ended up staying the week due to weather. I love the snow!

We had an appoinment at the neurosurgeon this week. He was very encouraging and reminded me that every week and every month without an infection is a milestone. Her incisions look so good that I didn't think infection was a great risk any longer. He said that infection can fester for months and not show itself right away if bacteria got in her body during any of her surgeries. Needless to say please still pray that she is continues to be infection free. I asked many questions, as I am sure every mother does, and I was reassured on all of them. I still worry but I am not crazy about least I don't think I am. We scheduled a head ultrasound for early March to check on how things are working with the shunt.

The physical therapist came for her weekly visit. As you many remember Whitney's lesion on her back was located at L-3 to L-4. This tells us aproximatly which nerves were damaged so we know what the outcome looks like is regaards to the future. She noticed that she has more movement on her left side and stated that she thought that her left side function was the equivalant of an L-5! This means that she has more nerve sensation on this side. I did not know that there was a possibility for the sides to be different but the nerve damage can be more severe to some nerves than others. We were greatly encouraged by this and look forward to seeing how else God surprises us.

We are now halfway through our incubation period at home. 6 more weeks! Please feel free to visit if you are healthy. I thrive on the adult interaction. (:

February 8, 2008

Whitney Update

Whitney visited the pediatrician earlier this week. Great report. She now weighs 9 pounds, 4 ounces--she was 8 pounds, 1 ounce at birth. We are pretty excited.

Wheelchair Backflips

A friend of mine just told me that ESPN was running a story today about a teenager with spina bifida who does backflips in his wheelchair. The story is encouraging--click on the headline above to see it.

February 2, 2008

Happy Birthday Matt

Matt's birthday was Saturday. We had a small celebration for him while his mom was still here. We have been home now for two weeks. It has been wonderful to have us all under one roof and not driving back and forth every day. Whitney has adjusted well and is a very good natured little girl. She wakes up twice a night and usually lets me go right back to sleep.

Fiona is also doing well. Her daddy was home with her for the first week home and grandma came this past week to spend time with her so daddy could go back to work. I am not sure I would have made it thruogh these last two weeks without them. I have been able to rest, nap and just take care of Whitney. It has been a wonderful gift. Fiona is missing her grandma's attention this week and it appears that she is more fun than I am.

As I mentioned Matt is back to work as of Monday the 28th. He was more than ready to return and told me a few times that he did not want my job. I found this quite amusing and thankful that I do not have competition for my position at home.

Since returning home we have had seven doctor appointments. This has been much more than I anticipated. It looks like we will have an average of one per week from here plus physical therapy. The good thing about having so many is that I get out of the house. The doctors have strongly advised us not to take Whitney in public for three months. The reports we have received from these appointments have been positive and a few of them even encouraging. She is healing very well. We have had her evaluated and she does not need any braces or casts right now. This is great news and makes us very grateful. We have a physical therapist coming to our home once a week. I am so thankful that this is one appointment that comes to us. Her tone and flexon in her legs is already improving as I do the therapy daily. This is also quite an encouragment.

We continue to take things day by day as things are still quite overwheming. Thank you all for your continued prayers and encouragement.

January 24, 2008

Shunt Pictures

A few more pictures--this time of the shunt. The first picture is of Whitney's head before they put in the shunt. The second is after the shunt surgery. The shunt is somewhat hard to see in the picture. In person, it is pretty easy to see because it is a small ridge on the side of her head. That said, we are thankful for her head full of hair because it camouflages the shunt pretty well. The doctors have told us that after Whitney develops a thicker layer of skin and more hair, people will generally be unable to see the shunt. They also warned us that some people will make insensitive remarks about the shunt. I think those comments, whether they are about Whitney's shunt or some other aspect of Whitney's spina bifida, are going to be those kind of remarks. We pray that we will have the self-control and inspiration to respond appropriately.

New Pictures

January 20, 2008

Whitney's Care

Many have asked me what special care Whitney needs now that she is home. She came home with needing dressing changes on her back for 24 hours, a diaper rash, and stitches behind her right ear, above her right temple, and a few in her abdomen.

The dressing changes are no longer necessary as her back is almost completely healed. It is amazing how fast her skin has healed and how great it looks. This Thursday we will have a check up with her plastic surgeon to make sure it is healing as it should.

We are trying to get on top of her diaper rash. She has very limited control of her bowels and so she always has a dirty diaper. We did find out that her kidneys look good over all. One kidney is a grade 0, perfect and the other is a grade 2 out of 4. They say this could get better or worse with time. This also meant that we were able to leave the hospital without a catheter. We have a appointment with a urologist in April.

The stitches for her shunt should disintegrate over time and we will see that doctor this Friday. The main concerns with the shunt are infection and failure. They have given us many signs to look for but some are as simple as crying. Please pray for protection for Whitney that the shunt with not need to be revised and that there will be no infection.

We also met with a physical theripist before we left the hospital. This was very encouraging for me because now I have some thing tangible I can do to try to help her. We have many stretches to work on with her for her hips, knees, ankles, and toes. All of these joints are very stiff and she can not straighten them. There are also appointments set up for this at the Spina Bifida Clinic and there will also be a theripist who will come to our home to work with Whitney. We are so blessed to live in an area with so many resources.

January 19, 2008


We received a phone call yesterday around noon telling us the Whitney would be discharged. Once we got over our surprise we began to get excited. We had meetings all afternoon with what to expect with her overall care and specifically for her shunt. Thankfully, Thursday the physical therapist placed a piece of foam in her car seat with a hole cut out of it to relieve the pressure on her back. We packed up all of her things, put her in the car seat and headed home. We are also thankful we live close to the hospital as Whitney should not be on her back for more than 20 minutes at a time and only if necessary.

Last night was a bit rocky as Whitney was missing her noisy neighbors and favorite nurses but today was better. All four of us continue to adjust but I am sure it will get easier day by day.

January 16, 2008

Rough Day

I think today was the hardest one we've had since Whitney was born. Last night around 5:00, we found out that Whitney would have surgery to place a shunt this morning at 8:30. The nurses suggested that we should probably get there as much before 7:30 as possible. So we were up before 6:00 and at the NICU before 7:00.

Whitney's surgery went well, and she was back in the NICU from surgery by 10:30. Whitney woke up slowly. As she woke up, she was in significant pain. She started crying uncontrollably. We tried to console her, but nothing worked. It took the nurses at least fifteen minutes to start her morphine, and it felt like an eternity before it worked. The whole time, Whitney was crying and wimpering. The feeling of helplessness was heartbreaking. It was the worst experience we have had since finding out about Whitney's spina bifida.

They finally got Whitney's pain under control, and she snuggled with Susan all afternoon.

Shunts, Surgery & Such

The shunt placement surgery this morning was successful. Our pediatric neurosurgeon placed a roughly two inch long shunt in Whitney's head above and slightly in front of her right ear. Now we pray that the shunt functions properly and does not become infected. Please praise God for a successful placement and petition Him that the shunt both works and is long-lived.

For more than you ever really wanted to know about shunts, and how we got to this point, please keep reading.

What is a shunt?
A shunt is a straw like device that is placed beneath the scalp and inserted into the brain to relieve pressure in the brain. Whitney, like many kids with the myelomeningocele form of spina bifida has hydrocephalus (sometime referred to as "water on the brain," although this term is not accurate). Hydrocephalus develops as cerebro-spinal fluid is unable to properly circulate from the ventricles inside the brain up and down the spinal cord and around the outside of the brain. As a result, the cerebro-spinal fluid builds up in the ventricles, placing pressure on the brain. Shunts are designed to relieve the pressure.

To my understanding, the shunt has three parts: the portion that is inserted into the ventricles, a valve, and a catheter. The three pieces fit together like a flexible child's straw with loops (the ones my parents only let us use on very rare occasions). The piece that extends into the brain in infants is inserted between sections of the skull. The valve is attached to the former piece and is outside the skull. The catheter attaches to the other side of the valve and runs under the skin to the abdomen. The catheter empties into the abdomen through a small incision. The upper portion of the shunt is visible as a raised area on the head. The cathether is about the thickness of a spaghetti noodle and is not visible.

The valve in the shunt opens when the pressure in the ventricles increases to a certain point and bleeds off cerebro-spinal fluid into the catheter (and consequently into the abdomen) until the pressure is reduced to a point where the valve closes. The cerebro-spinal fluid is reabsorbed by the body from the abdomen.

Shunts have a limited lifespan. According to the Spina Bifida Association of America, "[a]bout 40% of shunts will malfunction and need to be changed (or revised) within 1 year of insertion, 60% will require a revision within 5 years, and 80-85% within 10 years. About 20% will require multiple revisions in their lifetime." Typically, only the top portions of the shunt need to be replaced.

Why Did Whitney Need A Shunt?
Approximately 80% of children with a myelomeningocele require a shunt. When we were at CHOP, the chief neurosurgeon told us that he was positive that Whitney would require a shunt based on the swelling of her ventricles at 24 weeks. Since that time, ultrasounds have shown that Whitney's ventricles continued to grow.

Our pediatric neurosurgeon in Grand Rapids is very conservative. Although we encouraged him to implant a shunt and close the lesion on Whitney's back at the same time, he wanted to wait to see if the hydrocephalus subsided after the closure before deciding to install a shunt. During the last week, Whitney's head size increase by two centimeters, suggesting that her ventricles were continuing to expand. The soft spots on Whitney's head were tense from the internal pressure, and her eyes rolled slightly downward (called "sunset eyes"). Finally, Whitney had CT scans last Wednesday (1/9) and on Monday (1/14). The CT scan definitively showed that the ventricles had grown.

We had been told to plan for a shunt surgery on Monday, then Wednesday (today), then Friday. Early yesterday evening, the pediatric neurosurgeon told us that he would perform the surgery this morning at 8:30. Again, we didn't have much time to prepare.

After the surgery, the surgeon reported that Whitney's cerebrospinal fluid was under significant pressure. This was reassuring because it demonstrated the necessity of the surgery. Whitney is currently recovering in the NICU.

January 15, 2008

Shunt Surgery

After a week of waiting, our pediatric neurosurgeon had seen enough evidence that Whitney's hydrocephalus was severe enough that it required a shunt. Whitney's surgery is scheduled for tomorrow morning at 8:30.

Loaded Question

Matt has asked me to post on how I am doing. The quick and easy answers are 'fine' and 'better'. I will try explain a little more for you. I will start at the beginning. The first few days I felt as though I had just had major abdominal surgery and my family was coming to visit me. It was hard to imagine that I had a baby because I only got a glimpse of her. The first time I was able to go see and hold her for a moment it was as if I did not recognize her. I am thankful that within a few days from those moments Whitney and I have had many opportunities to bond and there is no doubt in my mind which baby in the NICU is mine. It has been difficult to have the nurses tell me what Whitney likes or how she cries before a feeding. I am looking forward to taking her home and knowing these things for myself. It is just not natural. I find myself having unjust anger/jealousy towards her nurses for knowing her better than I do (I am working on this). I have to say that my calling as a mother has been solidified by these many hours of not being able to be a mother to my girls. I hope I am able to remember this in the future when I am ready to pull my hair out of frustration.

Currently, Whitney and I spend every afternoon together during Fiona's nap. If you have been wanting to visit us for a few minutes this would be a good time. I may be nursing so you may need to wait a little bit but they will let you know at the NICU front desk.

January 14, 2008

Noisy Neighbors

Whitney got moved across the nursery yesterday. There are five other babies in the nursery with Whitney--2 boys, 3 girls. Whitney had been on the boys' side and was enjoying it. They were good neighbors--generally quite, no excessive noises.

Yesterday, they needed Whitney's spot for a new baby, so they moved Whitney into a new bed across the room. Her new bed is not an incubator. Instead, it is a metal crib with "cute speckled paint" (not my words). Unfortunately, the upgrade in accommodations was accompanied by noisy neighbors. The two little girls next to Whitney set off noisy equipment that beeps loudly at random intervals. The beeps have been waking her up, and she's been letting everyone know that she's not happy about it.


A lot of people have been commenting on Whitney's chubby face. You'll see that her face has thinned out since last Monday. We are starting to see that the shape of her face resembles Fiona's face--that's about the only similarity we've seen so far!




General Update

Since we last posted, not much and a lot has happened. Susan was discharged on Thursday. I'll let her post about how she's doing, but the first night home was rather rough. It's hard for us to remember that even though she's feeling better, she's not 100%.

Whitney doesn't know it yet, but she's been treated like a celebrity. Her distinguished visitors include her grandparents, all of her aunts and uncles (including the ones in Indiana), a great-aunt, her ministers, and such lesser distinguished persons as multiple perinatologists, her pediatric neurosurgeon, her pediatric plastic surgeon, her pediatrician, and umpteen wonderful nurses. Despite her father's protestations, several of the aforementioned distinguished guests as well as sundry well-wishers have labelled her "princess."

Whitney no longer has an IV (for the time being, at least). Whitney's veins are so small that each IV tended to last for only a day before it became blocked. After the IV in her head, she had three more IVs--another in her head and two in her arms. All told Whitney has had six IVs and about a dozen different holes in her head, hands, and arms. After the sixth IV failed, the nurses were unable to find a suitable vein and attempted to place a central line in what remains of her umbilical cord. Those of you who have had babies know that after six days, there is not much left of the umbilical cord. We were happy to learn last night that the attempt to place the line failed and the doctors decided that Whitney did not need an IV. I got to feed her this morning without an IV in the way for the first time.

Whitney is glad that someone finally paid attention to the fact that those needles hurt, and she does not appreciate them. Why her very loud protests while the nurses were placing all those IVs were ignored remains a mystery.

Whitney stopped receiving morphine and fluids through the IV on Wednesday or Thursday. We kept the IV in place so that Whitney could receive antibiotics to prevent an infection at her surgery site and to prepare her for the shunt surgery. Because the shunt surgery has been delayed (more on that later), the IV is not currently necessary.

Who knew that I could spend 3 paragraphs on IVs? In any event, we thank the Lord for these small things. The removal of the IV is a small step toward Whitney coming home.

Sorry for the delay in posting.

January 10, 2008

Coming Home

Big day today--Susan's coming home. I've been posting so much about Whitney that I haven't said much about how Susan's doing. Her incision is healing well--Lord willing, the staples will come out today. She's been in a maternity room two floors above the NICU, about as close to Whitney as we could get.

It has been harder on Susan than on me that we cannot simply hold and snuggle with Whitney. She did not sleep well the second night, so last night she received a little help and slept well though the night.

Until yesterday, we had so many visits from doctors, nurses, and family that we did not get a chance to talk. Yesterday, we had a chance to spend a few hours talking and sitting in Susan's room together. We thank God for the small blessing of a few hours alone.

I'm rushing around trying to get the house ready for Susan. Thank you to everyone for your prayers and kind words.

January 9, 2008

Whitney's Surgery (Now Illustrated)

Whitney's surgery to repair her myelomeningocele took about four hours today. As we mentioned yesterday, Whitney's lesion was a little larger than a half dollar. It was slightly wider than it was long. The area under the skin was somewhat larger yet. I took the picture to the right shortly after Whitney was born. You can see that there is a membrane over the lesion and that there is no cerebro-spinal fluid escaping from the site. That was good news. From birth until the surgery, the nurses in the NICU kept the lesion moist.

Our pediatric neurosurgeon operated to place the spinal cord back in the spine. That part of the operation took about two hours. The pediatric plastic surgeon took the better part of an additional two hours to close the skin and muscle over the wound. You can see what Whitney's repair looks like in the picture on the right. The doctors said that Whitney will not be able to lay on her back for about two weeks to allow the wound time to heal. Because of the heat from the incubator, the wound is covered with a piece of moist gauze to keep it cool.

Both surgeons gave us positive reports. The pediatric neurosurgeon reported that the injury to Whitney's spinal cord started around L3-L4 (lumbar vertebrae 3 & 4 or roughly near her waist), which is slightly lower than we expected. She retains a small measure of nerve function below that point. The pediatric plastic surgeon reported that the skin closure went well. If Whitney did not have enough skin around the lesion, the plastic surgeon would have had to make additional incisions to gather more skin from Whitney's sides or use skin grafts. Praise God that the plastic surgeon was able to pull her skin together without resorting to either process. In the picture above, you can see wrinkles in Whitney's skin (they look like they're covered with plastic). The doctor assured us that those wrinkles will disappear as the wound heals.

Whitney is back in the NICU. Shortly before the surgery, her IV malfunctioned and they had to remove it from her hand (again). They were unable to start it in her hand or arm, so they had to place it in her head after shaving a small amount of her hair. We were warned this might happen, but it still made us feel queasy. After the surgery, she remained on a ventilator until about 8:30. We were told to expect that Whitney would be on the ventilator for up to 48 hours. So we were very pleased that she was off it in less than 4.

Whitney continues to lie in the ventilator with small rolled towels under her waist to prop her up. Her feet are angled up against her legs, and her knees are locked into a shallow "V" position. Her hips, as we mentioned yesterday, are slightly drawn towards her. She seems comfortable now, but we will be taking her to physical therapy to hopefully loosen her legs. We were told to expect that she will need pediatric orthopedic surgery to improve her comfort and the stability of her hips. No idea when that will be yet, but we'll find out soon enough. Frankly, I'm going to try to get out of the scheduling business because the Lord has taken all of that firmly in hand over the last few days!

January 8, 2008

Whitney's Surgery

Whitney's surgery to repair her myelomeningocele took about four hours today. As we mentioned yesterday, Whitney's lesion was a little larger than a half dollar. It was slightly wider than it was long. The area under the skin was somewhat larger yet. Our pediatric neurosurgeon operated to place the spinal cord back in the spine. That part of the operation took about two hours. The pediatric plastic surgeon took the better part of an additional two hours to close the skin and muscle over the wound.

Both surgeons gave us positive reports. The pediatric neurosurgeon reported that the injury to Whitney's spinal cord started around L3-L4 (lumbar vertebrae 3 & 4 or roughly near her waist), which is slightly lower than we expected. She retains a small measure of nerve function below that point. The surgeon explained that Whitney will need to lay on her stomach or side for roughly two weeks until the wound heals.

The pediatric plastic surgeon reported that the skin closure went well. If Whitney did not have enough skin around the lesion, the plastic surgeon would have had to make additional incisions to gather more skin from Whitney's sides or use skin grafts. Praise God that the plastic surgeon was able to pull her skin together without resorting to either process.

Whitney is now back in the NICU recovering from surgery. We are going down to see her in a few minutes.


We learned this morning that the pediatric neurosurgeon had found a way to work Whitney in for surgery today at 1:00. Please pray for a successful surgery.


January 7, 2008


We appreciate the support, prayers, cards, phone calls, and other expressions of support that we have received during the last few months. We have been asked by a few people regarding visiting us or Whitney in the hospital. Visiting Whitney is a bit tricky: The NICU rules require a parent to be present with any visitors at all times and prevent any children other than Fiona from visiting Whitney. Because Whitney is going into surgery soon and will need some time to recover, we have decided to limit visitors to Whitney to family and ministers for the time being.

Susan is recovering well, but needs to rest and recuperate from the C-Section. We ask that only family, our ministers, and our district elder visit at this time. We welcome visitors to Susan after Whitney's surgery on Wednesday afternoon.

We thank you all for your interest, prayers, and love through this time!

Whitney Has Arrived . . . Early

Whitney was delivered this morning at 7:52am by c-section one day early. Whitney is doing fine in the Neo-natal Intensive Care Unit (NICU). Praise the Lord for a complication-free delivery and a healthy baby girl!

Whitney weighed in at 8 pounds, 2 ounces and just about 20 inches long. By comparison, Fiona was 8 pounds and 20 inches long. Whitney has a full head of brown hair--don't know about the eye color yet. Pictures to follow this evening after I get home.

The Delivery
We woke up this morning at 5:00 to the realization that Susan's water had broken. By 6:00, we were on our way to the hospital. I didn't mention it to Susan, but the low fuel light was on the whole way.

We were expecting to deliver tomorrow, but God and Whitney had other plans. Because we assumed that there was no way that Whitney would come any earlier, we hadn't packed our bags or made plans for where Fiona would go. Fortunately, I was able to run around a pack a bag, and our brother and sister were able to come get Fiona.

The hospital staff got us into surgery with remarkable speed, and it seemed like just minutes later, we heard the cries of Whitney. She's got a pair of lungs. Contrary to our expectations, I had a chance to hold Whitney before she was wisked away to the NICU. Susan handled the surgery well and is sleeping comfortably.

The Spina Bifida
Although we have been praying that the Lord would completely heal Whitney, we praise Him for giving us a daughter with spina bifida. Whitney was born with a medium size lesion (myelomenengocele) on her lower back. The lesion is small than some that we have seen depicted in material on spina bifida that we have reviewed. Whitney is scheduled for surgery on Wednesday morning to repair the lesion. Please pray with us that the surgery would go well and that Whitney would heal quickly.

We have seen some positive signs--Whitney's feet respond to touch, her feet are not clubbed, and her head is not oversized because of the hydrocephalus. We haven't heard anything from the doctors yet about brain function or intracranial bleeding, but we are hopeful that Whitney's brain is well. I think we'll find out a lot more tomorrow and Wednesday.