Katharine coming home

It appears that Katharine will be discharged today. Elias is fighting hard and doing well. There is more about him on his blogspot.

Elias Allen is Born!!

Today has been a very long, exciting, emotional day. I am home to get some sleep (and to let mother get some too) and post pictures for everyone. Please keep in mind that he is in the NICU and on many types of apparatus. Mother is recovering nicely as well.



We are also pleased to shift the blog to a new location to focus on Elias and his progress each day through the NICU and his journey home as he fights to conquer all the interesting challenges he faces. He is a fiesty one let me tell you!!

The blog's address is mycarouselofprogess.blogspot.com

Twas the night before baby....

and all through the house, OK so I won't be super cheesy and finish the rest. As Katharine told her mother on the phone tonight, "It's like Christmas eve, I doubt I'll sleep well." The excitement and fear is growing, but we are ready for this day. We will be surrounded by family as we celebrate this long awaited day. You can look forward to the introduction of the newest member of our family tomorrow night. Hopefully there will be a few pictures to share as well. Wish us luck and we will see you real soon!

Final Visit to CAFCA

This morning was our final visit to the Center for Advanced Fetal Medicine for our sonogram and fetal monitoring. It was almost surreal to walk out of there today knowing that we did not have to go back. For almost 4 months now we have been making weekly visits and in the last 6 weeks it has been multiple times per week. The doctors, nurses, and staff there have all been extremely wonderful. They of course want us to bring the baby down once he is out of the NICU. Everyone there has become quite aware of our scenario and is very interested to see how things turn out. While we are thankful that we do not have to go back, still we will miss them all in that office.

Only 3 more days until we begin the next chapter! We both are so ready, nervous, but excited and even a little frightened. We have learned a lot during this journey, but mostly we have learned just how strong our love can be. The next few months are certain to be an emotional roller coaster, but we shall move forward. Please know that you all are welcome anytime to come up and visit, call, email, or whatever. We will need your continued support to help guide us through this extremely confusing period. Everyone take care and we will talk to you very soon.

And the winner of the birth pool is......

THE BABY!! He fooled us all :)~

Today we went in for all of our normal Monday morning rituals with the doctors as well as the amnio for lung maturity. The hope was to deliver the baby via C-section tomorrow if the test was positive. Unfortunately, it came back negative. They did however tell us that May 1, 2008 will be the day we go in for a planned c-section. While this was disappointing news it is for the baby's best health interest, so we will hold our chins up and count down the days.

This has certainly become an ever changing scenario. Each visit brings on something different to consider or be concerned about. We have done a fairly good job of remaining positive, but it is very exhausting to maintain that level of enthusiasm. We are honestly ready to move past this chapter and begin the next. We want to welcome this precious life into this world and conquer these anomalies. It has been a very frustrating path leading us to this point and we thank you all for the support. Right now, more than ever we need you to help push us through our most challenging days. We appreciate all the love, thoughts, & prayers because we certainly would not have made it this far without all of you.

Bless you all, and Bless this Baby!!

It's Getting Closer!!

Today is Katharine's birthday!! She has decided to keep things low key. Going out for dinner and maybe a little baby shopping afterward. Otherwise, things here have been nice and relaxing. We have been getting some things accomplished and wrapped up in anticipation of next week. We are starting to get a little nervous as the day draws near.

This morning we tried to get some pictures of the nursery. The dimensions of the nursery made it difficult to get any good pictures. Here is one that we were able to get of the crib.




We hope everyone has a great weekend. Talk to you all soon.

Photos from Baby Shower

As promised here are some of the pictures from the Baby Shower

Enjoy!

The Clock is Ticking

After our our appt yesterday at the Center for Advanced Fetal Care we sat down with the doctor to discuss the options and game plan. Since they are unsure of what genetic problem the baby has at this point they have decided to play things safe. There is one potential syndrome that could cause problems during a vaginal birth if he has this. We had been working towards identifying certain physical features that could help rule in or out, but were unsuccessful. So the decision has been made to have a planned C-section delivery after another amnio is done to determine if his lungs are mature enough. As of this morning the plan is to do the amnio on Monday morning. If the results are positive then we check into the hospital Monday night with the delivery early Tuesday morning. If they test comes back as not ready then they will be able to let us know which day in the next few weeks it will be. The intent now is to deliver in a controlled and prepared environment to accommodate all of the babies needs with out need to scramble the assembly of the team. Katharine has been placed on bed rest since her amniotic fluid continues to rise. Since this Thursday is week 37, the baby will be considered full-term. Several people have been asking how Katharine feels about the decision for c-section, she is OK with this. She had come to terms awhile ago that this was far from the normal pregnancy and while she hoped for a natural birth, reality was certainly not in our favor. The bottom line is what ever is best for our child.

This has certainly taken us a little by surprise, considering last week the judgement was to let baby come naturally with induction at week 39 if he had not delivered. Thankfully there are only a few loose ends for us to wrap up so we are not scrambling around trying to finish things. We are set to relax this week and be set on Monday. Hopefully, either later today or tomorrow we will have some of the pictures up to share from the baby shower. Thank you all for your continued thoughts and prayers. We will keep you posted with all the latest and greatest!!

Baby Shower

This past weekend was the Baby Shower, hosted by Katharine's Mom and Sister Kim. Lots of friends and family were in attendance. It was really wonderful to see everyone. Thanks to all of you again for the amazing gifts. We would also like to say a special thank you to the anonymous individual that placed the monetary gift in our camera bag. We asked and no one claimed any knowledge. It was said to us that maybe they did not want to be known, but we wanted to say thank you, whoever you are. It was appreciated, and put towards something wonderful for the baby.

We are working on getting the pictures processed on the computer, sorted and uploaded online. We will post a link when they are up. There are some really funny shots (think diaper contest) and it is evident that everyone had a wonderful time.

It was nice to kind of get away from everything and get a little relaxation. This morning we were back in the doctors routine. The sonogram went about the same. Still no clear identification of whether he has thumbs or not, they have really focused on that the last few weeks. He just doesn't want to give us a good shot. There was a little humor in his antics this morning. As the Sonographer was following his hands, hoping to get a glimpse, he kept putting out his pinkie finger, as if to tell her "this is all you get babe!!" hahaha (insert villain laugh effect). It's nice that they are able to follow our sense of humor and contribute, it helps us get through the rough patches. The fluid is still high, but stayed about the same compared to last week's measurements. However, we are now going for the fetal monitoring twice a week. This is only a precaution since the fluid is coming near the highest levels they really like to see. It is simply to monitor and ensure that contractions and baby's position are as they should be to not cause preterm labor. This prompted us to ask the question about induction. The answer was vague and he apologized for being such. However, we got a much better sense of their intentions. Essentially, the ideal scenario in their book would be for baby to come naturally. The next step will be to do a procedure to remove some of the fluid. This will help with the baby's positioning (he is swimming around in the deep end of the pool if you will)and encourage "natural child birth." This will be done next week more than likely. It seems as of now the plan would be to schedule induction only if we reach week 39 (Week of April 27th) and he has not yet been born. The doctors suspect we will deliver before then. Until then we are going to wrap up work on the nursery this week and get all the last minute items. Talk to everyone soon!!

A Little Night Music

Just a little something we found that is absolutely hilarious! Thought we would keep it light and fun tonight. Looking forward to seeing some of you all this weekend.

The last few weeks

We have not really had the time the last few weeks to update. It's amazing how fast everything is starting to move. We have been super busy finishing the nursery, taking birth classes, tours of the facilities and of course doctor visits.

A few weekends ago we took a few of the birthing classes the hospital offers. Infant care/CPR & of course Labor & Delivery Techniques. We learned quite a bit and Michael quickly found out there is a lot more to having this baby than pain, breathing and pushing. The whole process from begin to end was way off the expected. Amazing how TV & Movies distort reality :) We both feel excited and prepared now for this big event (and hope it doesn't last too long). We were also given a tour of the labor & delivery/nursery unit. The rooms are a little smaller than we expected, but adequate. Of course our "wiggle worm" will be heading straight to the NICU rather than the nursery so he can receive extra TLC from the nurses and doctors. The NICU is one level down from Labor & Delivery. We are extremely comfortable with everything at this hospital. The staff, nurses & doctors have been nothing short of amazing and have assured us that he will get the best care possible. This has really helped the extra anxiety that could have existed otherwise. They are extremely open to family & friends visiting, this will help as well.

This past weekend we got the crib put together and positioned in the nursery. We are now in the process of decorating and hanging shelves. As for the Doctor visits, we are going weekly now to both the OB and Neonatolgist once a week for monitoring. We had a ultrasound again this morning and he actually cooperated.....that is a first!! I think we caught him sleeping. They did some 3-D pictures particularly of the brain heart and limbs since these are the major areas of concern. We got to see a few good pictures of his face. At one point he smiled, Katharine says he has his daddy's smile. We did get to see some good shots of his arms and positioning of the hands. They are curled & turned in a little, but its hard to tell how much is from the missing bones and lack of space in the womb :), although Katharine has mentioned at times he seems like an octopus in there, but he looked adorable non the less!!

We have been playing him music through headphones the last several weeks. He really seems to enjoy that especially Earth, Wind, & Fire. Mommy says she can feel him just a dancing!! This is looking like the makings of one active little one....hurray!!

Again thank you all so very much for your continued support. We are fortunate to have such supportive and wonderful family & friends.

31 weeks and counting

This is week 31 of the pregnancy. My how the time has flown by!! It seems as though we have reached a plateau with the doctors and baby, who is now affectionately referred to as wiggle worm by the doctors and nurses :) At this point it appears as though most of what we have been trying to identify through prenatal screening has reached the point where we are in a wait and see when the baby is born mode. We will be continuing the appts, but more to monitor rather than to probe. It will be much easier to evaluate "wiggle worm" once he is born and more conclusive findings will be made.

We met with the Neonatal Intensive Care Unit (NICU) doctors on Tues. They sat down with us and answered questions we had as well as explained how everything would transpire from delivery until it is time to go home. We got a tour of the NICU and were able to see some of the equipment and bedding that "wiggle worm" will be in after delivery.

Since there are so many specialist that will be and are involved with the baby the NICU team acts as the point to ensure he gets the tests and evaluations appropriately and also to be the ones that give us the information. This will keep what will become a very fast moving three ring circus some civility and consistent information and updates. Once the baby is born he will begin some of the test that are critical to ensure his life sustaining functions are fine. Once that is determined the next day or so will involve several different evaluations and screenings to determine how quickly any surgery or treatments will need to occur. The good news is we were told that family will be able to visit the baby in the hospital even while in the NICU. There are some limitations, but at least we know that it is OK, so get your plans ready :) At this point the only real major concern the doctors have is preterm labor. We have been instructed to come in and be evaluated at the first sign of any potential labor. The hope with this measure is to stabilize and prevent preterm delivery.

As for us, we are doing OK. We are taking care of each other and making sure that we do not forget ourselves during all this. We are both very tired as sleeping at night is becoming more difficult especially for poor Katharine who is experiencing the typical "uncomfortable" feelings. I wonder if that is natures way of preparing you for those late night/early morning feedings and changing ;) Thank you all again for your continued prayers, thoughts, cards, and phone calls. It really has helped a lot in getting through this difficult period. We hope everyone is well and hope to hear from you soon!!

Recent Ultrasound Pictures

From 3/4/08

A Pictorial Update (sort of)

This week brought a little bit of good news and a visit from Katharine's Mom & sister Kim. The good news for the week was the results from the micro-deletion chromosome test for Di George Syndrome....this came back negative. Yet another more serious possibility to cross of the list. As we mentioned we had visitors this weekend. We had a great visit and a wonderful time.

This week we have several more specialist to see and a few test. Next week we will be getting a tour of the neonatal intensive care unit. We are really feeling comfortable with our decision to stay with the University of MD hospital. Everyone there has been so wonderful and have really gone out of their way to help. Anyway, we wanted to share a few pictures from the weekend so everyone can see how Katharine (or her belly) is coming along, as well as a few others.


Parents to be



Kat & Aunt Kim



Mother to be & Grandmother







With her "first baby"



Whats in that belly?



Baby's first Disney Clothes









We hope everyone is doing well. We hope to see and talk to everyone real soon!!

Another Sonogram

We know many of you have been anxiously awaiting the news of our follow-up on Monday. I'm sorry it has taken so long to update, unfortunately work has interfered. The main reason for the quick follow up was to get a better look at the babies heart and kidneys, as well as double check the other findings. After the sonogram we met with a Geneticist and genetics counselor to discuss the findings and options.

This is what we know so far:
-The baby has a double aortic arch. There is also a misalignment of the arch, potentially ventricular septal defect (VSD)
-There are missing radial bones in both arms.
-One of the kidneys has an abnormality in development & position.
-The eyes are close together which could potentially signify mental handicaps, severity at this point is uncertain if at all.
-The baby will need to be born in a university hospital setting to ensure all the care needed at birth is readily at hand.
-There is also still a chance the baby could have trisomy 18 mosaicism. Patients with trisomy 18 mosaicism have a less severe clinical expression and longer survival depending on the degree of mosaicism. Partial trisomy 18 varies in its clinical picture from mild mental deficiency and improved survival to being indistinguishable from full trisomy 18. This depends on the extent and which part of the chromosome is affected.


At this point we are being referred back to a Pediatric Cardiologist for consultation on how quickly the baby may need surgery for the double aortic arch and to explore the other potential abnormalities. There has also been a test ordered from the cells retrieved through the amnio for
Digeorge syndrome. There is a good chance that we will also be consulting a pediatric orthopedic surgeon.

The geneticist was wonderful. She explained as best she could the various paths this could take us. She was also very upfront about not being able to provide us with a lot of answers at this point, if at all. The truth is we may not be able to determine the cause of these abnormalities, only time will tell. So far the team of Doctors at the University of Maryland Medical Center have really helped us to feel more comfortable. Their communication is very honest and too the point. Even though we are still a little frustrated with the lack of knowledge, it is nice to finally have some direction. This is still going to be a very rough road all the way to birth and potentially beyond. We are preparing for this as best we can. We continue to hear from many people with words of comfort and compassion. It certainly helps to know that we have so many people in our corner helping us through this battle. Thank you all!! We love you very much!!!

I would like to leave you with the prayer I have written to get me through each day so far:

"Oh God, I thank you for the day you have given me and the strength to get me through it. Please give me the courage and insight to face each new hurdle through this long and difficult journey. I pray that you watch over my unborn son and help him to understand just how much we love him. Grant me the ability to see as much positive as I can, and see clearly through the fog of confusion that surrounds us. I know that you are making me a stronger individual somehow but it is hard to comprehend how. I ask that you bless our child and help him to have a fruitful life. Bless the doctors and individuals assisting with his care. Thank you for my loving wife as she stays strong and continue to watch over her. Continue to show yourself to us through your will and not our wants or desires. May your love embrace our family and raise us above the fears we are feeling. May tomorrow be a brighter day as it is one day closer to holding our son that you have granted us. In your son's name I pray. Amen!"

Second Opinion

This morning we had another appointment for a sonogram at a different hospital to see if we could confirm the findings of the first. They indeed found many of the same abnormalities, but need to conduct further test to really give us a clearer picture. It was frustrating to leave there not knowing much more than we did going into the sonogram, but as Katharine put it, "at least we have some direction."

The biggest concern that they found for the moment is a potential double aortic arch in the heart. This potentially surrounds the trachea & esophagus which could cause breathing and swallowing issues. Unfortunately, the baby was not in a good position to properly diagnose so we have to go back for a follow-up next Monday. If they find this to be accurate then surgery will be needed shortly after birth. At this point the Dr. has suggested that we consult with a team of specialist to help piece together potential "syndromes" that may be present. This will be coordinated by another genetics counselor. There are so many different scenarios on the spectrum of potential syndromes/abnormalities that they cannot give us many answers right now. That is the most frustrating part, but by partnering with this team of physicians we will be able to have some answers soon.

Thanks for listening and all of your concern. Keep the positive thoughts & prayers coming. We should have another update next Monday.

Amnio Results

We received a call from the genetics counselor yesterday with the results. She told us that the test came back negative for trisomy 18, that it is a little boy (which made Katharine's day) and it was also negative for spina bifida. This of course is a huge relief. There are still some areas of concern with the baby and having ruled out the trisomy they can begin to focus and narrow down what potential defects may still exist. One of the other concerns the Dr. told us about on Jan 3 was VACTERAL Association (click for more info). There are several of these associations that appear to be present (kidney, trachea, esophagus & limb) so our next step is to have another sonogram by a different hospital (second opinion) to determine if these elements still appear.

We thank you all so very much for your love and support through this process. It has been a blessing and helped us so much through this. The road ahead is still rough, but there is light at the end of the tunnel. We will keep everyone updated as usual. Please continue all of your thoughts & prayers they are obviously working :) and remember "A Dream is a Wish Your Heart Makes"

Music to calm the soul

boomp3.com

Update Part 2: Pediatric Cardiologost

We actually had an ultrasound done by a pediatric cardiologist @ John Hopkins on Thursday. We received some good news here. He said that he could not see any abnormalities. That does not mean that there may not be issues after the baby is born, but it would more than likely be a smaller reversible problem. So that was a sigh of relief. We are now awaiting the results of the amnio which we should be getting next week sometime more than likely next Wednesday.

While at Disney we went over to Cinderella's wishing well and made a few wishes. Just for good luck Michael rubbed water from the well on Katharine's belly. It seems silly we know, but after the results at the cardiologist it kind of makes you think.....doesn't it.

As for the Disney trip, it was a welcomed break from all that was going on. It was a chance for us to reflect on things in a place that makes us happy. We had a good time, the weather was great, and it all went by too fast.

Michael was able to find a teddy bear for baby. As soon as he saw it he knew it was the one. Just in case you don't know Michael still has his "teddy" he got the day he was born. So buying one for baby was important to him.



Katharine and baby took time to pose for a picture with Pooh and the gang.



Thanks again to everyone for keeping us in your thoughts and prayers. We will keep you updated as we get more information.

Update on Baby: Part 1; Amniocentesis Test

This morning was the next phase in our journey. We had an amniocentesis done. The results of this test will not be ready for 10-14 days. Tomorrow, we have an appointment with the neonatal cardiologist for an EKG to help identify what the abnormality with the heart might be. This will impact the birthing plan depending on the results. This test is completely unrelated to the amniocentesis, which is testing for genetic disorders, primarily trisomy 18.

Many of you have called or written to us with your words of support and compassion. We thank you all for your thoughts and prayers. We are both hanging in there and are doing as well as can be expected. As we said before, we are trying to keep an upbeat mindset. We discovered a quote this past week, by Walt Disney (imagine that) that we have embraced as our mantra for this particularly rough time...

"Happiness is a state of mind, it's according to how you look at things."
-Walt Disney

We will update again tomorrow with info on the EKG.

Sad news about the baby

This is an email we sent out to our family and friends, but we also know there are some of you who read our blog that we do not have info for, but read our blog. We have posted this here for you.

We received some news today about our baby. Unfortunately, it is not good. During the sonogram they discovered several abnormalities. There appears to be some sort of heart malfunction, although it is not clear we are being referred to a neonatal cardiologist. It also appears as though one of the baby’s kidney is underdeveloped and not functioning properly, if at all. There were also some noticeable problems with the arm/hand development. It seems as though one of the two bones that connect to the hand are missing in both arms which are also shorter than they should be at this stage of development.

What is next……………?
The doctors have suggested and we have agreed to an Amniocentesis. This is a test that will draw fluid & cells from the womb and cultured to determine if there is a chromosomal disorder. They are particularly leaning towards Trisomy 18, which is an extra chromosome on #18. Many of the abnormalities we mentioned above are unfortunately associated with this syndrome. This test will help to rule out or confirm the Trisomy. We will be scheduling the test early next week and it takes about 10-14 days for results. So we anticipate knowing more the end of January or early February. We will keep you updated as we know.

What does all this mean..............?
It’s very difficult to say for sure at this point. We are trying to be strong and positive as best we can. The reality of this depends a lot on the results of the Amniocentesis. If it is negative then it is likely that the baby will be born with some form or forms of handicap. This could be mental, physical, or a combination of the two. However, if the results are positive then the prognosis is unfortunately grave. There is a small chance that the baby will survive, but not likely. Trisomy 18 is usually fatal, with many babies passing within days of birth. However, a small number of babies (<10%) live at least one year.

Our decision…………….!!
We talked with a genetics counselor yesterday after finding out the news. She laid out all the choices we had and the steps we would take with each of these. One of these is of course termination. This is NOT an option for us. We know and understand that many people may not agree with this decision, but we ask that you please support us. We are fortunate enough to both come from very loving and nurturing families and we have decided that we want our baby to experience that as well, even if it is for a few short hours. We will take what God will give us and cherish every second of it.

What can we do to help..................?
We know that everyone will be shocked by this news and will want to help out in many ways. We truly appreciate this. We appreciate you wanting to be here, to help and support. There may be a time in the near future that we will need to take you up on that, we will definitely let you know. Do feel free to call us and talk and please do not be afraid to ask questions. We do plan to cherish the rest of this pregnancy and all the wonderful memories it will create. The next four-five months will be very up & down emotionally for us and we are preparing ourselves for this long and difficult journey. We ask that you keep the baby in your prayers and continue to support us. We believe that God will grace & bless our family as he has so many times before. He knows how important family is to both of us and has touched us all with his love through each other. Miracles can happen, and if there ever was a family deserving, with all the love that exist within, it is ours!

Promotion Interview

I have my interview tomorrow for the District Manager of Retail Operations. Wish me luck!!