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

Home

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.

Pictures

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!

1.07.08


1.09.08


1.13.08

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.

Surgery

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.

Pictures



January 7, 2008

Visiting

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.