Tuesday, November 25, 2008

A Princess Party

Anna Lee's cousin, Brynlee, had the cutest birthday party I have ever been to last weekend. (I can't believe she is already turning 5!) The party was at a little tea room, and the little girls got to dress up like princesses and have a real tea party (china and all). I was a little worried how Anna Lee would do...but she "princessed" it up right along with all of the 5 and 6 year olds. At first she was a little hesitant, but she eventually figured it all out and joined right in. Here are a few of the pictures we caught of the girls. It was so fun to watch all of them!

To begin, the girls all got to go to a room filled with pink princess dresses and pick out one to wear. Anna Lee was very specific about the dress she wanted. She picked an off-the-shoulder dress that was pink with lace and pearls. After they changed clothes, the girls got a "make-over" of sorts. They all waited in line to get their make-up done and their fingernails painted. We could not believe it, but Anna Lee patiently waited right along with all of the other girls until it was her turn. She sat as still as a rock while the lady in charge painted her fingernails, and then followed all of her directions (closing her eyes, opening her mouth, etc.) while the lady put on her eyeshadow and lipstick. It was too funny!

All dolled up

Brynlee was crowned "princess of the party." She was loving it!

She then crowned each of the girls "princess," and they each got a crown. Anna Lee was the only one who didn't want to wear her crown. Perhaps it was hurting her head...all of the other girls had full heads of hair to soften the combs. (Hopefully she will someday too!)

Just checking out what all of the other girls were doing.
She was working very hard to do what they were all doing...

That included drinking with her pinky held out.

All of the girls had a princess parade at the end, and then had a photo shoot as a group. Anna Lee looked so little with all of them...but acted so big. What a fun, fun day!

Tuesday, November 18, 2008

Quick Maggie Update

From Brant: We are very pleased to report that Maggie went through her surgery yesterday morning in fabulous fashion. The medical team is very pleased with her recovery so far. Maggie's shunt was successfully inserted. The shunt begins in the lateral ventricles of her brain, moves to a valve located under the skin above her right ear, and then travels down under her skin into her abdomen. Any of the cebrospinal fluid that drains down the shunt system into her abdomen will be absorbed by the body there. The surgeons made the tube which goes down into her abdomen long enough that it should still function well even after she grows into adulthood.

Particularly we were thrilled that they were able to remove the ventilator tube from her throat almost immediately after her surgery was completed. This was further evidence of how Maggie's breathing has improved from her earlier struggles.

The last several days we could see Maggie's head gently swelling as the fluid increased and the soft spot on her head became firm. Since her surgery, we can already see a decrease in the swelling, and her soft spot has once again become soft.If all goes well, and as expected, Maggie should be able to come home later this week. We'll have a better view of that plan in a day or two.

*Maggie got to move to a regular room today--out of the NICU! Getting closer to going home!!!

Monday, November 17, 2008

Mascara Mishap

Anna Lee found Kasey's mascara the other day and attempted to put it on herself. This is what we found...

Thursday, November 13, 2008

Little Baby Blake is Here!!!

Some of our very best friends, Paul and Ericka, had a surprise when their sweet baby, Elizabeth Blake, arrived yesterday. We had planned on being in Nashville next week for Blake's birth, but she got here early! I was so sad to not be there, but I am so thankful she is here and healthy!

Big Brother Riley

Maggie's Upcoming Surgery

(The Latest from Brant)

Maggie is continuing to grow and develop every day. Her breathing continues to improve, her feeding is good, and she clearly has some muscle and nerve control in the lower half of her body. However, the CT scan on Tuesday showed fluid is accumulating in her cranium so she is scheduled to have a shunt inserted in her head to help drain this fluid away.

We are very pleased with Maggie's overall health. She has begun taking a very limited amount of bottle feeding and nursing the last few days and has responded well. That is even better news than normal as sometimes babies with a Chiari brain formation can have difficulty sucking. On a related note, her weight has been increasing consistently, even when she was only receiving nutrients from her IV line. In the first few days the staff at Children's would have preferred she actually had lost a little weight, but she has been unstoppable in that regard.

Monday, Maggie was evaluated by a team of physical, occupational, and speech therapists. She does have movement in all parts of her body. However, they did say she may have some difference in the muscle tone of her legs. We're watching and looking at everything she does a lot. Maybe too much sometimes. We know it is really hard to know what her capabilities really are at this point, but we are encouraged. Today, the therapists started a regular program of therapy with her to help assure maximum development of her muscle control.

Tuesday morning Maggie had a CT scan on her head. It showed that she is slowly accumulating fluid in the ventricles of her brain. The ventricles are a series of four cavities within the brain that are open to the central canal of the spinal cord. The Cerebrospinal Fluid is created in the ventricles and then flows through the ventricle system into the spinal column. The cerebellum portion of Maggie's brain is sitting so low in her head (the Chiari malformation mentioned in earlier emails) that Maggie has restricted flow of her cerebrospinal fluid from the ventricles into her spinal column. Consequently, her ventricles are slowing increasing in size as more fluid accumulates there.The danger from the accumulation of fluid on the brain, usually called Hydrocephalus, is too high pressure on the brain tissues. Overtime this can cause issues such as headache, nausea, vision issues, mental developmental issues, and just lots of other bad stuff. If untreated, Maggie's skull could also expand abnormally. So Maggie is currently scheduled for an operation next Tuesday to insert a shunt system. This shunt will be a small tube that will go from the brain ventricles to a one-way valve which sits outside the skull, but under the skin behind the ear. The tube then travels down the neck into the abdominal cavity. We are extremely thankful that Maggie is being treated by this particular group of Neurosurgeons at Southwestern. They are simply excellent, excellent at this procedure, and clearly one of the best in the country at shunts. This shunt may last her a lifetime, but children who receive a shunt this early in life frequently need a revision to the shunt as they grow in size.

The medical staff wants to wait a few days to let her lungs develop stronger first. They have been slow to develop, given her early birth, but are doing better all the time. Day by day she has been weaning from Oxygen and air pressure being supplied to her mechanically. This morning they finally removed the last of the devices to assist her breathing, so she is now breathing entirely room air, on her own. Over the next few days we expect her lungs to grow stronger. During her shunt surgery she will be intubated again and her breathing will be assisted by a ventilator. One of the goals of the medical staff is for her breathing to strengthen before surgery so she is able to both generally recover from surgery sooner, and specifically to be able to get off breathing assistance from the ventilator without difficulty.

Brooke and Matt have now been able to take turns sleeping at home, while the other one sleeps in the room with Maggie. They are slowly becoming better rested. The 3 Cole boys seem to be doing very well, thanks to the excellent care that Russ and Susan Cole, Matt's parents from Denver , have been providing to them.

So our thankfulness, our desires, and our hope all remain. We are thankful that there are answers and potential solutions to the issues that Maggie is facing. We are thankful that she is receiving such excellent care and we are confident that she is getting the best care possible. We are thankful that her path and our decision seem clear. We are thankful for the movement and healing that has already been seen. We are thankful for the excellent surgery and results from the surgery to close her spinal defect. We are thankful for the tremendous love and care that has been given to us abundantly. We are thankful for your prayers, thoughts and concerns as we believe they matter.We desire for her to have normal ability to move, think, and function. We desire for her surgery to go well and the surgeons to do excellent work. We desire for her fluid levels to remain low and not rapidly expand. We desire for her urological functions to continue towards normal functioning. We desire her to breathe well and her lungs to be strong.

And, we are nothing if we are not people of hope.

Sunday, November 9, 2008

The Latest on Maggie

Here is the latest email I have received. I texted back and forth with Brooke this morning. She sounds like she is in good spirits. She got to hold Maggie for the first time last night---for almost and hour and a half. I think this was such a wonderful step for all of them. I am so thankful she and Maggie finally got that time together.

If any of you would like to leave a word of encouragement for Brooke and Matt, just leave it in the comments and I will be sure to get it to them. I know it is such a blessing to them to hear about/from all the people who are keeping up with them and praying for them---whether you know them or not.

Here is Brant's last message. He included some great thoughts at the end about the body of Christ.

(I will try to include some new pictures of Maggie next time.)


Since our last message on Thursday evening we have been blessed with Maggie continuing to enjoy slow improvement with her breathing. Otherwise all other areas continue to be stable or slightly improved. We are truly thankful and feel very blessed today.

When we sent the last email we were very pleased that Maggie was showing movement and activity in her lower extremities. That movement has continued, and seems to perhaps even be mildly increasing. This includes motion of her legs and the ability to pressure her bladder some so she urinates.

There really has not been any new development concerning her cranium and the fluid she has there. The staff is regularly measuring her cranium to be sure it isn't expanding due to increased fluid pressure, and it has not. Maggie is scheduled for another CT scan on Tuesday. After that scan Matt and Brooke will consult with the Neurosurgeons to determine if Maggie should have a shunt inserted to help drain fluid from her cranium and reduce the pressue there. They regularly remind us that most children with this condition do require a shunt sooner or later.

The immediate concern Thursday was, and continues to be, Maggie's breathing. She was clearly attemping to breathe. However, her breaths were not very deep and were not adding much Oxygen to her blood stream. Consequently the amount of Oxygen in her blood was dangerously low. The medical team determined this was primarily due to high pressure in her Pulmonary Artery which did not allow blood to flow into the lungs where it could be Oxygenated. For the last few days Maggie has been kept very still and quiet. The lungs needed to grow, open more, expand, and develop.

Thursday evening Maggie's ventilator was supplying about half of her breaths (30 per minute) and Maggie was also supplying about 30 per minute. She was being supplied with air that had just been reduced from 100% Oxygen to 90% Oxygen. Since then the staff has been slowly weaning her off the ventilator, by gently decreasing the percentage of Oxygen in her air and slowing reducing the number of breaths the ventilator was providing each minute. We were thrilled late this afternoon when they were able to finally remove her ventilation tube and replace it with oxygen supplied by a nasal breathing tube. Maggie has responded wonderfully and seems to be holding her own right now. Although in the overall scheme of things, still being in a NICU unit and simply moving from a ventilator to a nasal breathing tube may not seem like a huge move, at this point it is wonderful for her and us.

The staff at Children's expect Maggie will spend the next few days resting and slowly strengthening. This is simply one step in her path. The very earliest they might consider releasing her would seem to be towards the end of next week. If she has a shunt inserted next week that would delay her release further. Whenever she is released, we expect she still to have health issues that will require time, attention and prayer.

So today we feel some relief, some victory, and an abundance of thankfulness. We are thankful for the excellent medical care Maggie has received. We are thankful for the great comfort and support so many have given. All of us have been blessed with strength and healing from a God on whom we depend. We know that Maggie's journey is not yet over. Her journey has just begun, as have some of her struggles. But, the same could be said for all of us. Some of her issues are just a little clearer than are some of the issues we might face.

If you will pardon a brief theological side note, we truly do not believe that in any way God sends problems, like spina bifida, to any of us. God has not sent this to Brooke, Matt or Maggie. Satan is the source of failure, defect, death, and all problems. Like a mad scientist in his lab, Satan works his devilish best to create schemes and creations that are designed to cause havoc, hurt, and pain. He takes his best shot and then launches his evil designs from his hellish hole into the world aiming at us. But perhaps the greatest power God has is his amazing ability to take Satan's very worst and find a way to turn that evil creation into a blessing for us. This is one of the great ways God shows that he is God.

Maggie's spinal defect is not of God, but we can clearly see one thing that God has already made good from of it. The Coles and the Bryans have been incredibly blessed by so many already. We know that this community itself is one of the ways God is responding to bless. This community gathered around Maggie is in and of itself a great thing. We have been so comforted by the care and affection that you have shown. We know that much of the good health Maggie has is due to your prayer and your faith. We have felt tremendous love and affection, far beyond what we deserve. And, God has used this community as a source of power and strength. A good friend of ours often says this world is far too difficult for any of us to get through it by ourselves. That is why God gave us groups, communities, in which we live. So we thank you for being part of this wonderful community that is one of God's blessing back to us and we pray that you continue to pray and have faith for Maggie.

Brant for the Coles and the Bryans

Saturday, November 8, 2008

Halloween Night

I haven't gotten a full update yet today about Maggie, so I thought I would post a few of the fun Halloween pictures we had. I will be sure to add more about Maggie as soon as I hear more. Over the past two days, they have been turning down the oxygen levels that Maggie was receiving, for her to begin to breathe more on her own. The prayer continues to be that the valve in her heart will close on its own, and that she will be able to breathe without assistance. As I was writing this, I just got a text from Brooke that they are about to take Maggie's vent out! What an awesome answer to prayer! Please continue to cover this sweet little baby and her family in your prayers. God is continuing to be faithful.

On Halloween night, we decided to take Anna Lee to the Owen's Pumpkin Farm and carve a pumpkin, instead of trick-or-treating. We felt like she had disliked her costume enough at Trunk or Treat, that she shouldn't have to wear it again. She seemed to have way more fun at the Pumpkin Farm anyway. They had a petting zoo and a barrell ride that Anna Lee and I took together. I may not be that far along in my pregnancy, but that barrell was an uncomfortable ride! Anna Lee loved it, though. She was very frustrated that she didn't get to ride on the actual tractor.

Not quite sure of the jumping goats.
At the pumpkin farm, Anna Lee got to choose a pumpkin for us to take home and carve. We read the book The Pumpkin Patch Parable, and then carved a jack-o-lantern like the story. Anna Lee thought it was very interesting. We weren't sure if she would get into it or not, but she dug right in...literally. She was very proud of the finished product, although the picture we caught does not show that.

Trunk or Treat

Anna Lee had a lot of fun at our church's Trunk or Treat the Sunday before Halloween. She was dressed up as a puppy dog---"Lady" to be exact. She was not the biggest fan of her costume, and the poor thing was so hot the whole time. But she loved the fact that she got candy just for dressing up like a dog! She had a lollipop in her paw or mouth almost the entire time we were there. She collected candy in a cute little dog bowl we had gotten her...that she pretended was a potty.

Anna Lee thought it was really funny to sit and talk to the "real" doggie while she was wearing her costume.

When Kasey got there, she could not stop laughing at Anna Lee's costume. I think it is the hardest I have ever seen her laugh! Anna Lee was so excited to see her---I think she thought she was "saved" from wearing the costume when Kasey arrived. Nope!

Some of Anna Lee's buddies at church. Too cute! It took Anna Lee a long time to figure out who MacKenzie (the clown) was.

It was so fun to see Anna Lee enjoy this year's festivities even more than last year. Crazy to think that next year we will have two in costumes!

Thursday, November 6, 2008

Maggie's Heart and Breathing

From Brooke's dad tonight:

Our big concern about Maggie remains her lungs. Her lungs are not working efficiently. For her back surgery, Maggie was intubated. Even before then, she needed an oxygen tube to keep her level of blood oxygen sufficient. The ventilation tube she had initially turned out to be too small a diameter, so today they replaced that tube with a larger tube. Kind of a tricky procedure with a child that produces a whole lot of mucous. Since they put in the new tube, her respiration has improved and she is now supplying about half of her breaths and the ventilator supplies the other half. Maggie is breathing at a reasonable pace, which indicates her brain is telling her lungs to work. That is good news, for a child with a Chiari malformation of the brain.

This afternoon Maggie had an echo-cardiogram. From this it was determined that her heart is generally functioning well. However, blood is flowing at a reduced level into the Pulmonary Artery, which leads to the lungs and then back to the heart before it is sent back around the body. The Pulmonary Artery takes the blood from the heart to the lungs where it receives and loads up on Oxygen. Instead of a normal function, much of Maggie’s blood is by-passing the lungs and slipping thru an opening, the PDA, which normally closes after birth. Before birth, blood by-passes the lungs, as it already has oxygen and goes thru the PDA back around into the body. Maggie’s Pulmonary Artery now has a very high level of pressure, too high. This is called Persistent Pulmonary Hypertension. The blood from the heart cannot force itself into that artery. Instead it is slipping back around into the body, before it is oxygenated. It is likely doing this for one of two reasons: either the lungs are insufficiently developed and she is exhibiting Respiratory Distress Syndrome or she has a mild case of pneumonia. While they are giving her antibiotics to protect against pneumonia, the suspect Maggie’s lungs are just not sufficiently developed. Because she was delivered prematurely, her body has not yet begun producing Surfactant, which it normally does at a full term both. Surfactant promotes normal lung development.

So for the next few days Maggie will rest and have minimal stimulation. We are waiting for her to produce Surfactant and her lungs to develop and continue to expand. They may encourage her blood system to increase its pressure. This should help force blood flow into the Pulmonary Artery which in turn should help the lungs expand and develop. The doctors are concerned about this condition of hers. They told us children with this issue can get really sick and require more medication before they get better. Then she quickly said that Maggie is not anywhere near there at this time, but this should be a very interesting 72 hours. Once Maggie does get better, she said it will likely happen quickly.

Please continue to pray.

Maggie Update

Here is the latest on Maggie, from her Aunt Lauren. Thanks for checking in on her.

Hey friends...
Can you all take a moment to pray for Maggie this afternoon? Apparently she had a bad morning today, and they were getting pretty worried about what direction she would be taking. She seems to be coming out of the trouble, but they will did an MRI of her brain today & will be going over the results in a an hour or two. What we learn here could determine a lot of her future. Also, they are checking her hearts to make sure it is not leaking.

These are both major hurdles. If we can clear them, we will be feeling REALLY REALLY good! Please pray that her brain is draining the fluid & that she will not have to do the shunt. Also, pray that her heart is strong & leak free!!

God has been so good to us throughout this whole process, and we know he will be faithful. He has plans for this little girl, and we can't wait to see how he is glorified with her life & healing.
In case you haven't been around or in the loop entirely- these are some things God has done for her in the past three days since she was born:

-A membrane protecting her spinal cord from the amniotic fluid appeared when they delivered her. The best eyes in the country had told us she would not have this after looking at it closely on several occasions- but God had different plans!

-Feet that are perfectly shaped & not clubbed!

-Legs that move & kick, and get really mad when you try to put an IV in them. This morning they were trying to put an IV in her foot & when she would yank them out of the nurse's hands when she felt them start rubbing the alcohol on her foot.

-An amazing closure surgery with a beautiful closing. Like a zipper! (Most are horrible & require skin slitting & graphting). The unit at children's say it is the best they have ever seen.

-Doctors that are hopeful that she will retain leg movement & minimal nervous system damage.

-She has control of her number 2's: )

- As of a few hours ago, we were told that the last thing we should hope for is bladder control. It's THE trademark of spina bifida- but she can pee when she wants! She just wet her diaper over the catheter, so they are going to remove it this afternoon!! Yay!

God is good! He loves Maggie more than I do, more than you do, and even more than Brooke & Matt. Let's ask that he continues to listen to our cries & heal our pretty baby!

Tuesday, November 4, 2008

Maggie Update

Maggie had surgery today to close the opening in her back. Here was part of the newest update we received this afternoon from Brooke's dad:

"About noon an opening came up in the surgical suites here and a team was available to operate and close Maggie’s spinal defect. One of the partners in the neurosurgery team, Dr Sacco, was available. Brooke had identified him earlier in the process as one of the better members of this neurosurgery team. The other option was to wait until late tonight for the operation. In order to minimize the risk of infection to the spinal cord, and to let Maggie healing continue as soon as we could, we elected to have Dr Sacco operate. At 12:30 they moved Maggie to the surgery suite to begin preparation for the procedure. They estimated the anesthesia prep and operation would take about 3 hours. But, after about 2 hours and 15 minutes Dr Sacco came in and told us the operation was completed and he was pleased.

The procedure involves separating the spinal cord from the displaced tissues (muscle, dura, etc) and then re-forming those tissues into the layers of tubes that normally surround the spinal cord. These layers of tissue are each sewn together to make a tube. The skin is then glued together for the final connection. He, and we, are really pleased that the incision is a clean, straight line. Importantly, he said that he feels whatever nerve function she had before surgery should remain after surgery.

Maggie will be coming back to Intensive Care about 4pm today. She will remain intubated for most of the evening, perhaps until the morning. A near term concern for us is for her breathing to improve so her blood oxygen levels can increase. Also, over the next few days the neurology team will be observing her head shape and size, with imaging likely to occur in a couple of days so we can discern how much fluid is being retained in her cranium.

We have been repeatedly told that the next week is our critical time to learn what Maggie’s breathing and brain issues might be. It will be in this time period that we learn what direction her brain functions might be.

We truly ask that your prayers continue to be bold and intense during this time as Maggie needs help."

Update on Baby Maggie

Here is a letter that Brooke's dad, Brant, sent out yesterday after a long day. Praise God for good news! Please continue to pray for this sweet family.

Monday, November 3rd:

This morning Brooke and Matt went to Brooke’s weekly visit with her OB-Gyn, Dr Ehmer. When they took a look at Maggie with the sonogram they immediately noted some significant changes in the past week. Brooke and Matt were immediately sent to the office of Dr. Magee, her perinatologist, for a 2nd opinion.

Three problems were noticed in the sonogram today: First: the amount of fluid in her cranium and the resulting pressure had significantly increased. Second, the amount of amniotic fluid had increased and that indicated she may not be swallowing properly. Third, there appeared to be some change in her feet which made the doctors think they may have starting moving to become more club-like form.

Brooke and Matt went directly to the delivery unit of Baylor, here in Dallas. Dr. Ehmer decided he would finish his day’s work and then perform the C-Section about 4pm. Through the afternoon, family and friends have been gathering until a group of about 25 were present at the time of delivery.Brooke’s C-Section went very well and the medical staff seem happy with the procedure. We were able to briefly see her as they wheeled her down the hall from the operating room to take her to the Baylor NICU unit. The team from Children’s came over to Baylor to receive her, stabilize her, and then prepare her for transport to Children’s.

Once Maggie was delivered we received good news on several accounts. Maggie’s feet are not clubbed. The opening is very low on the Sacrum, S4 to S5. This is lower than we had expected it to be, and may indicate less risk of damage to the nervous system. Her breathing seems to be good. Also, it appears the opening was covered by a thin membrane, which none of the scans and sonagrams had shown. That is fabulous news as the spinal cord appears to have had protection which wasn’t known. But that is probably true in many, many respects. This membrane does have a very small, pinprick, opening that is leaking a little bit of the cerebral spinal fluid.

Because Maggie’s condition is not as severe as expected, primarily due to the existence of the membrane protecting the spinal cord, Children’s has moved her to a lower risk category. The Transport from Baylor to Children’s will occur very soon as is on it’s way to Baylor now.As I write this, Brooke is about to move up to the NICU floor, where she will be able to see Maggie before Maggie heads off to Children’s. She won’t be going alone, as Matt will be accompanying her.

We thank you for all your prayers, comfort and support. Especially for the intense pleadings you have made to God on Maggie’s behalf. It is our belief that your prayers and support have helped her heal.

For those of you that have a Facebook account and are members of the group "Praying for Maggie Cole" there have been some new pictures of her added! Enjoy!

More later as we know what happens!

Brant, for all the family

Monday, November 3, 2008

Please Pray for Baby Maggie

Some of our close friends, Brooke and Matt Cole, have been awaiting the arrival of their little girl, Maggie. Maggie was diagnosed with Spina Bifida a few months ago. Brooke was supposed to have a c-section last week, but it was postponed until this coming Thursday. At their doctor's appointment this morning, the doctors found some troubling signs during the sonogram and decided to go ahead and perform the c-section today. Maggie is scheduled to arrive today at Baylor Hospital shortly after 4 pm, and then will be transported to Children's Hospital within a few hours. She will have surgery on her back to close the opening to her spine within 48 hours of being born, and then possible surgeries later. Please pray for Maggie and her family today and in the next few weeks. Brooke and Matt (and their three precious boys) have already been amazing examples of faith through this situation. Please pray that God continues to give them peace and strength through what is to come.