KTW Syndrome

Jakers and KTW Sydrome

by Erin Castellano on Saturday, March 26, 2011 at 1:01am

 

I know I should have done this a few weeks ago, but I think I have just processed and accepted the situation. As most of you know, Jake was back at Rady Children's Hospital 2 weeks ago. He was screaming again and not eating and very very upset. Mommy intuition, I knew he was in pain. I took him down to the ER and within 2 hours we had been admitted. (I'm coming to the understanding that every time we end up in the ER, we WILL be admitted.) He had an MRI the next day which found a bleed in his bottom. Now that he is pulling himself up and crawling all over, he may have fallen a little too hard on his bottom, which caused a bleed. They immediately took him off of his daily aspirin, which he was taking to thin his blood to stop clotting. They said his body would absorb the bleeding and he would soon be himself. For the meantime, he is on Tylenol for the pain. Which is getting better. The doctor compared the pain to a really bad bruise but always sore and worse to the touch. He didn't sit on his bottom for a good few weeks and is finally acting like himself again.
I'm sure I've mentioned this syndrome before, but this is his for sure diagnosis,  Klippel-Trènaunay-Weber Syndrome. How do you say it??? I'm not sure. So we will stick with KTW syndrome. After a lot of research, Ive found this is pretty much what he has and what the doctors are now calling it. His lymphatic malformation, abdominal cysts, venous malformation, port wine stains, are all associated with this syndrome. Is there a cure? No. Is it treatable? Yes. This syndrome and Jake's condition is manageable. After being discharged from the hospital, we finally had our big appointment that same week. We met with a radiologist, plastic surgeon and his dermatologist from Rady. They sat down with us, looked him over, were amazing and set a plan.
We head to Hawaii in two weeks, YEA!, so when we return, the Dr who is the radiologist will begin Jake's treatments. He will work on shrinking the cysts in Jake's abdomen and Jake will be hospitalized for a week for observation. This will happen twice.
In a year from now, the plastic surgeon wants to work on the extra lymphatic tissue in Jake's leg to bring that under control and help it look not so big. The radiologist will also go back in and cut off the extra blood flow that Jake has.
With KTW syndrome, it is hormonal based. Meaning this will continue to come back and he will continue to have surgery. We may see a larger growth of it when he hits puberty. Luckily he has some awesome doctors watching out for him.
We also have our work cut out for us. There are so many things to watch for. Any slight fever, discoloration of skin, excessive fussiness, etc, will put us in the hospital for MRIs and blood tests just to make sure everything is okay and they can treat any problems. We have such a happy little man and its easy to tell when he is in pain or just not himself.
I am grateful we got the OK to head to Hawaii. ((I am bringing along his medical files tho)).
Thanks for all of the prayers that are sent our way. We are super blessed!
More info....
http://www.medicinenet.com/klippel-trenaunay-weber_syndrome/article.htm

Clinic 9/2010

Jakes Clinic

by Erin Castellano on Monday, September 27, 2010 at 5:20pm

So as most of you know we had Jakes clinic last week. He saw 7 specialists and they all sat down afterward and discussed treatment options. We spoke with Jakes doctor on Sunday night and this is what they have decided. His treatment will probably be life long. Which is something we are prepared for. There is no quick fix for his condition. They will treat it as he grows. Right now their main focus is his right thigh, abdomen and right butt cheek. In this area it is mostly lymphatic. The best way I can describe it is fluid filled cysts. What they want to do is treat the large cysts with injections and possibly surgically remove them after they shrink up. Now with the vascular portion of his mass, the overabundance of veins, they want to cut off blood flow to some. There is a lot of information and it all is hard to understand, but Rady Children's hospital in San Diego are willing to take his case on and help treat him. Our next step is a sit down meeting with the surgeon, radiologists and plastics, and they will decide the first step in treatment. They want to begin treatment before he begins crawling and walking but not too soon because he will have to go under anesthesia.


Anyhow, we are grateful they are willing to treat him and looking forward to it. He has been such a happy baby since being on the children's aspirin. This has thinned his blood and prevented clotting from occurring. We are to continue to look for discoloration of the skin and fevers in case his mass becomes infected again, which it is prone to doing, but they also know how to to treat that when it happens.


Thats it! Thanks for all of our little mans thoughts and prayers. Were so grateful.


Love, erin

His right thigh. What looks chubby us actually part of the malformation

Goes from his toes, ankle up to thigh and bottom

Heres his cute "Big" butt. What can we say, we like big butts and we cannot lie :)

August 2010

Heres what we know...

by Erin Castellano on Saturday, August 14, 2010 at 11:14pm

 

WARNING....Long read...Sorry....

So, its been a while since I've done a "Jake Update". I need to do this because, for one it gets all of this garbled up info in my head onto paper, and secondly we have such an amazing support group, YOU, who are awaiting an update. Jake is well. He was smiling and happy today. Compared to the day we had yesterday, hes great. We came in here on Wednesday for a fever. He had been fussy though out the night and very irritable, but no fever. In the morning he was running a fever so I took him into the pediatrician. (This would be his third fever. His first fever, he was 27 days old and admitted into Loma Linda for 5 days where they pumped him with meds and sent us home. His second fever, 3 weeks ago, we took him to the doctor and treated him with Tylenol and it went away in a few days.) With this fever, I took him into his pediatrician, whom by the way is the most amazing woman ever, and she did not like the way he looked or acted. She asked me if I had gas in the car, told me not to stop and to go straight to Children's Hospital in San Diego. She said he was acting like he was in pain, which happens everytime he has a fever. I thought he was screaming during the night with his fevers because he had a fever, body aches, etc. But with this particular fever, he screamed through the night and didn't have a fever until morning. So we ended up at Children's. We are here rather then Loma Linda because our doctor felt she could contact more doctors and had more pull here.
Once we were in the ER, they took his temp, ran some blood tests, etc. They were ready to send us home because he was acting okay. I called our pediatrician and she said, "They just don't get it do they?" Once she called them and told them we needed to be admitted, they realized that we were here to get help, for the long run. They were hesitant about admitting us because ALL of his previous tests, exams, BIRTH, everything, had been done at Loma Linda. Transferring care can be difficult. The ER doctors came to us and gave us three options. We could go home and head to Loma Linda in the morning to see our doctor we had been working with there. They could transport us to Loma Linda that day and have us admitted there, or we could be admitted at Children's, Not sure if we were making the right decision, Steven and I decided to stay at Children's and see what they could offer us in ways of what is wrong, what he has, and what treatment options they could provide.
So after being admitted, Jake was now on his 3rd IV because his other 2 blew in the ER. They took blood for tests and Jake was still running a low fever. They began treating him with antibiotics for an infection. We met with a hematologist and we were told that Jake could possibly be in pain, due to small blood clots. Some of his blood levels were high so they were going to continue to check it. They scheduled him for an ultrasound to see if they could figure out where everything was inside of him and how it was effecting his organs. ((Jake has clusters of veins that did not form correctly all over his right lower abdomen, his right butt cheek and down throughout his right leg. Everything has looked very swollen since birth, but it never seems to have effected him.)) After an unsuccessful ultrasound, he seriously screamed bloody murder the whole time, they sent us back to the room. The doctors contacted us and said they needed to sedate him for the ultrasound, but what they really want is a MRI. So since they were going to sedate him, why not do the MRI instead. We were nervous but glad they thought of it now. He was actually scheduled for an MRI next week at Loma Linda to compare his first MRI to one now.
Heres where things get weird...
The night before the MRI, Thursday night, I was changing Jake's diaper and I noticed a red blotch on the back of his leg. He had these blotches on his upper thigh when we came into the ER, but never behind his leg. When I touched it, there was a large mass underneath. The mass was the size of a grape. There was another one about a half inch above that one as well the size of a pea. I called in the nurse and she called in the on-call doctor and they poked at him for a while. They tried to bump up the MRI, which didn't happen, but they were thinking it could be a blood clot but wouldn't know until we have the MRI results.
That's kind of where we are now. I spoke with the on call doctor tonite and he said that there are several medical teams working on reading his MRIs and so getting information quickly is not really possible. He said the biggest thing is they want to compare his MRI now with the one he had at Loma Linda at birth. They are having their top radiologist do this and hopefully he will have a report on Monday. With the mass, he said there is great blood flow throughout his leg, and his blood levels are good, so it may not be a blood clot, but that's not completely ruled out until the final paperwork is written up. Jake is now on his medications orally, in hopes that we can go home soon and give him his meds and come back for tests to be ran. I asked what it could be if it wasn't a blood clot. He said that these malformations grow and change after birth before they get smaller, so it could just be growing, or it could be something completely different. He didn't know. I feel like we are in great hands here. Loma Linda was good to us, but I feel like Children's has the resources we need and are truly geared towards us. They actually have a vascular malformation clinic coming up in September. We are scheduled to be there. We will bring in Jake and show him to a team of doctors and they will discuss his case and how to treat him. Of course my biggest concern is that he is not in any pain. They have all been wonderful. Looks like we are transferring all of our care here. A huge thank you tho to Loma Linda. They are just as fantastic.
Jake is resting now. First time Ive had a chance to sit down and get all this out. Poor guy just looks exhausted. Its been a long 5 days. Poor Jakers is going on IV number 8, no kidding, has had blood drawn around 6 times and is over being poked and moved. Just loves to be held and rocked. Steven and Bryce are out here until Monday morning when Steven will have to go back to work. Blah! So visitors are welcome! LOL. The Ronald McDonald house here is amazing. Its a 5 minute walk across the street and a great place to shower, eat and rest. The place is brand new and beautiful. We have been so blessed.
Thanks to everyone who have had our little man in your thoughts and prayers. We are so lucky to have such an amazing support system. Thanks Moms and Dads for taking care of the house and dogs too since we cant be there.
Will keep you posted on results.

Coming Home

Jakes coming home tonight!

by Erin Castellano on Friday, June 4, 2010 at 11:03am

 

So I was at the hospital yesterday and as I was leaving I ran into Dr. G (the attending Dr on Jakes case). She asked me why Steven and I had requested a meeting with Jakes team of Drs. I said that we just wanted to know where things stood. We had not been told what to expect out of his vascular malformation. Life and death kinda stuff. I said that we kinda felt in the dark and were just wondering what the next step was. She said that they had opted out of the biopsy. The doctors decided it was not worth the risk to Jake if the malformation is not causing him any problems right now. Dr. G also said that if we wanted a meeting with his team, then it would delay his time of coming home. I said "Coming home? I didn't even know that was an option! No one has mentioned anything about him coming home." She said that there was no need for him to be in the NICU if he was healthy and the vascular malformation was not causing him any problems. She said hes eating well, pooping and peeing just fine and all of his "levels" have been stable since the day he was born. There was just no need for him to be there. At this point I was speechless. She then said, "Oh, he can go home tomorrow". Then I was really speechless. I told her my husband would probably want to meet with her, as he is much better with the questions. So a few hours later, after Steven and I came up with a list of questions, he went and spoke with her. She stated that we needed to treat Jake like any other baby. His malformation is not causing any internal or external problems, its just there. Eventually, as he gets older, we can discuss surgery and plastic surgery, but at this time, it was not necessary. He will be closely monitored by our pediatrician, who has actually worked with Dr. G, Dr. Herwitz in Murrieta and she has followed Jakes case also. We are also taking him in to see Dr Herwitz on Tuesday. So, at that, we are bring Jake home tonight. He is getting circumcised today, poor boy, and we will head back this evening to fill out paperwork and discharge papers.
I cannot believe this is happening. I remember hoping and praying this day would finally come. After all of the stress of the unknown, things are known.
I do know this is only the beginning to a long road in Jakes life. We are going to be sent to UCLA in a few weeks to meet with a specialist who deals specifically with Vascular Malformations. The doctors at Loma Linda have been in contact with her directly and she is anxious to look at Jakes case. His malformation and case is incredibly rare.
Otherwise we are so excited for Bryce to meet Jake and for our family to be together and get our life started. I am beyond grateful for the amazing support system we have. Thank you Thank you Thank you for your prayers! After we are settled in, please come meet our new addition!

Baby Jake

Baby Jake- June 1, 2010

by Erin Castellano on Wednesday, June 2, 2010 at 1:24am

Today was another day. I have a feeling these days are just going to go by, same as the last. Im already bored. Steven had to work an early shift today and go to a meeting so I was on my own for the day. I took the Loma Linda shuttle and visited Jake Baby this morning. I brought three full bottles of milk for him. I dont think hes had to have formula all day long. I am now pumping 90+ ml and his feedings today are 78ml. So Im pumping more then needed which is great. Hopefully I can get him completely off formula by the end of the week. He bottled a full 73ml this morning, wanting more afterwards, and this evening when Steven and I went in for his 6pm feeding, he wanted nothing to do with it and they "gavaged" him. (Tube fed). He was so funny, he would pretend to stretch and seal his lips shut and turn his head. He wanted nothing. The NICU has a strict rule. If the baby takes more the 30 minutes to eat, they tube feed them. They dont want the baby taking more the 30 min to eat because then they get tired and begin to burn calories. Its more important that the baby does not burn calories and gains weight then sucks from a bottle, so Ive kind of backed off of having him breast feed until his tube is out, as long as hes getting my milk, thats all that matters, Ill continue to pump.
While Steven and I were there, we spoke with the resident doctor. (Thank you Greys Anatomy for teaching me the levels of doctors...lol). She said she will be following Jakes case for the next month. Today she followed the doctors around during their rounds and stated that Dr. Brar (the ped surgeon) was going to speak with a plastic surgery doctor to decide the best way to go about getting a biopsy of Jakes mass. She also stated that if the mass were just strictly in the leg, that it would be monitored as an outpatient case, meaning he would be able to come home! But because it goes into his abdomen, it makes it more complicated and they want to make sure it is not causing his kidney any problems. They also want to make a diagnosis and a biopsy would help them do that. Their one concern about going forward with the biopsy is that his mass is very vinous, containing lots of veins, and they dont want to rupture anything and have him bleed. So, this is the next step that will be taken. It is a slow process. Things are looking good, yet I dont want to get my hopes up. I dont think this is life threatening, its just going to be a long process. This is an incredibly rare case and doctors from all over the hospital are working on it. Steven is much better at describing the information we receive. I try not to leave much out, but I know I am. There is just so much scattered information and nothing in stone. At the end of the week we are going to request a meeting with all of the doctors to see where we are and whats happening all together.
Its been so heartbreaking that I cannot take care of my baby. I get to feed him maybe twice a day, change his diaper once a day and Steven is great at giving him his baths. I feel like I am missing out on so much. I dont know how long I can do this and I pray that it is not much longer. I am aching for our family to be together at home. I have two boys and I dont get to tuck either of them in at night. I look forward to the day Bryce meets Jake and I have two kids in the back of the car. I just want my boys again.
More to come...

He's Here!

Baby Jake- 5/29/2010

by Erin Castellano on Saturday, May 29, 2010 at 11:15am

 

Jake is here! He is doing well. Jacob Anderson Castellano arrived 5/27 at 12:09pm. He weighed 8.8lbs. He came out screaming. C-section went well.
Jake is in the NICU. He is not allowed out of NICU to nurse or be in my room with me. As soon as I was able to, I was out of bed and visiting him. It seemed like forever before I was able to do that, but it was wonderful when I finally did get to see him. The only visitors allowed to see him are parents and grandparents, who must be accompanied by a parent. They are very strict with their rules.
He is well. He had a hard time feeding on night one, so he ended up having to be tube fed. He pulled the tube out twice yesterday and is now bottle feeding formula again until my milk comes in. He is a hungry boy every 3 hours on the dot. I have been pumping every 3 hours, trying to get my milk to come in, which is frustrating, but I know it can take a few days before it does. They have been running tests on Jake since Thursday night. Yesterday he had a head to toe ultrasound. It lasted about 2 hours and he was exhausted afterwards. They were concerned with any bleeding near his brain but it turned out there were no problems there.
Jake does have three Port Wine Stains on his right leg. His right abdomen is swollen and his right butt cheek is swollen and large. Looks like a mass under the skin. His right leg is swollen also. The doctors are looking into a few lymphatic related syndromes and are contacting a few specialists, but nothing is set in stone. Due to the holiday weekend, we wont have much more information until next week.
Overall, Jake is doing well. He is one of the largest babies in NICU because many are preemies. He is breathing room air, not on ventilators, pooping, peeing, crying, moving, eating, looking around, strong heart and lungs, and overall healthy. He will be in the NICU for a while tho. Once a diagnosis is made, a plan of action will then be the next thing we discuss. I don't think the outcome will be life threatening, but it is serious and something he will deal with for a long time, if not throughout his life. They are most concerned about the internal portion of the lymphatic problem because it is near organs.
I will be discharged tomorrow or Monday. From here, we have a referral to go to the Ronald McDonald House (Thank you Dave and Deb). We will stay there while Jake is in the NICU.
I will update again next week. Until then, please pray for Jake. The NICU can be a scary place, but we have a tough little guy. I am hoping to go in this afternoon for some cuddle time, which I have not had a chance to do yet. He has been under the lamp for Jaundice so they want him there rather then being held. Understandable but hard.
Thank you everyone for all of your thoughts and prayers. I don't have enough Thank Yous!

I will also post some new pictures of Jake in the Baby Castellano #2 file. I know some are curious as to how things are looking.

Last Update before C-Section

Last Baby Jake Update...before Baby Jake arrives

by Erin Castellano on Tuesday, May 25, 2010 at 11:26pm

 

Had my last NST and pre-op today. Asked several questions regarding the c-section and Jakes after care. As long as the c-section goes smoothly, Jake will be delivered and passed on to the pediatricians. He will be checked over and if he is good, I should get a chance to see him before I go into recovery. He will be taken for immediate tests and his "lymphatic malformation or SCT" will be diagnosed. Our doctor said that by Friday we should have answers. I should be discharged Saturday or Sunday and we are hoping from there we can go straight into the Ronald McDonald House. Depending on Jakes condition, determines how long his hospital stay will be in the NICU. Its it all unknown...and Im so glad the "unknown" wont be much longer. I am so anxious for him to be out and get the help he needs. The sooner he gets help, the sooner he can come home!
I cannot believe I have carried Jake this long. From the first diagnosis, I truly thought this was it. I read stories about very early deliveries and very sick babies. The diagnosis was not good, and the doctors were concerned. Abortion was also mentioned as an option, but was never an option for me. Unbelievable that things have turned out the way they have.
Bryce has been so sweet and loves hugging my belly. He says, "Hi Baby Jake". I cannot believe hes going to be a big brother! It just makes him seem to grow up so fast. He heads to Kikis tomorrow. Its hard because he cannot even visit the hospital. So Im sure I will be anxious to get out and see him.
Stevens mama is also here from Seattle and she has been a ton of help. Thanks "Damma"
Please pray for a healthy baby Jake and a quick recovery for myself. I just cannot believe this is here. I thought it would be here long ago. I am so glad I have carried him this long. Means less complications. Also means the diagnosis of it being an SCT is not likely. Meaning possibly no surgery.
Love you all and thank you for everyones prayers. We are staying positive.
Thursday May 27th@ 9am!

36.6 Weeks

Baby Jake update #11 36.6 weeks

by Erin Castellano on Tuesday, May 11, 2010 at 2:13pm

Not too many of these updates left! (As in pregnancy updates.) Todays appointment was fine. Dr. gave us an article she found where another lymphatic malformation was mis diagnosed as an SCT. Which seems to be what has happened in our case. I tried to get more information out of her about what we were dealing with here. She said that lymphatic malformations are very rare. They are mainly found in the neck or armpit of a baby, so with Jakes in his abdominal area, it makes our case that much more rare. The article she found is very similar to our case. Parents were told the child had a SCT uo until he was born and once he was born and tests were conducted, they concluded it was a LM. Lymphatic Malformations are more of a chronic disorder, meaning this is something we could be dealing with for a long time, if not throughout his life where an SCT would require a very high risk surgery and could be malignant yet usually does not reoccur. So either way, there are pros and cons to each outcome. LM does not seem to be as life threatening as an SCT tho. Anyhow, I have one more appointment next week. We will also be meeting Dr. Block who will conduct the c-section. The following Tuesday I will have my pre-op and then we will deliver on Thursday the 27th. It will be here before we know it, I hope. Thank you again for those that have kept us in your prayers. It is amazing how long I have carried, considering when we were told the news of Jakes condition, it didnt look like the outcome would be positive. We are so grateful!

35.6 weeks

Baby Jake Update- 35.6 weeks

by Erin Castellano on Tuesday, May 4, 2010 at 10:19pm

So today's appointment was good. Considering news about his "tumor" is changing. I'm not even sure what to call it. At first I was frustrated that the doctors don't know whats happening and why its changing, but now I think it must be the divine grace of God and the power of prayer if there are truly no answers. The tumor that was on his backside externally is now looking as if it as shrunk. He looks like he now has a swollen bottom and right leg. Internally, the cystic mass seems to be the same size. Due to it being so cystic, and making things appear to be "swollen" they are leaning towards a lymphatic malformation like last week and further away from an SCT. If it is lymphatic, he will not need surgery right away, if at all. The doctor stated that it would be something they would just keep an eye on and he could possibly come home sooner. I asked her about draining the fluid and she said that would not be necessary unless it was causing any internal problems. Which is has yet to do so. Today the doctor said that if it continues to look this way, it may just go away on its own. But....the lymphatic malformation can also be related to a syndrome. This is something they will not know for sure until he is out and they can run blood tests and get a real idea of what they are working with. As in what kind of syndrome? I don't know. She mentioned a few today, that I cannot remember off the top of my head. So I don't want to get my hopes up thinking everything is going to be A-Okay, its still a waiting game, but things are looking up. The doctor also mentioned that Jake is now head down. Amazing considering he has been breach for the past two months. I did not know what a concern this posed until today. The doctor stated that the fact that he is now head down goes to show that neurologically, everything is working. His brain and body are understanding that labor and delivery are near and that is a pretty big deal. Which I think leans us away from him having any sort of syndrome. So, we'll see. We now have a delivery date of May 27th. I am feeling a little anxious and relieved all at the same time. I have two appointments a week over the next 3 weeks and then he is here! Amazing. I can only pray appointments continue to get better and better.

34 weeks

Baby Jake Update- 34 weeks-Surgery appt.

by Erin Castellano on Thursday, April 22, 2010 at 4:40pm

 

So todays meeting was informative. The surgeon we met with, Dr. Gollin, was great. Looked like Bill Nye the Science Guy. He said they discussed our case on their last meeting. After throughly reviewing our file and talking with his wife, Dr. Gollin the Radiologist, he came to the conclusion that it did not look like a sacrococcygeal teratoma (SCT), as previously diagnosed, it looks like a Lymphatic Malformation. He was not 100% sure that this is what it is. But if he had to choose between the two, this is what he would say it was. He believed it was not an SCT because what looked like the external portion of a tumor, does not have a large vein connected anywhere to it supplying it blood. It just looks like a large amount of fluid filled cysts coming off his backside. The internal portion of the "tumor" also does not have a vein anywhere near it. When a tumor grows, it also grows as a mass. Jakes internal "tumor" actually is growing all over the inside of him in as fluid filled cysts, wrapping around his kidney and down into his leg. It is not a mass. At this point my heart was racing because I knew what was coming next, was this better or worse? It has its pros and cons, but it is not as life threatening as as sacrococcygeal teratoma. What a relief! But Im not about to get my hopes up that this is what it is. Dr. Gollin even said that it could end up being something totally different or could still be an SCT, just so we dont settle on this. But he is leaning towards a lymphatic malformation. The downside of this is that it is something Jake may have to deal with throughout his life. The upside, he will not need surgery right away. He can even come home not long after delivery and go back and forth to Loma Linda as treatments are needed. Its still a "play it by ear" situation.
So....a lot of information, but a lot of good information. Dr. Gollin said if it hoped it was one or the other, he would hope it would be a lymphatic malformation, which is what he thinks it may be. So we are hopeful. The plan is to still deliver me at 39 weeks (end of May). Once Jake is born, tests will be conducted and they will know for sure what is going on. Need to hold out another 5 weeks.
Next Dr. appt and ultrasound on Tuesday.
Thanks again for everyones support.
erin

A few websites to help explain a lymphatic malformation:

http://www.childrenshospital.org/az/Site1256/mainpageS1256P0.html

http://www.lpch.org/diseaseHealthInfo/HealthLibrary/ent/lympmalform.html

Update #8

Baby Jake #8- 33.6 weeks pregnant

by Erin Castellano on Tuesday, April 20, 2010 at 3:12pm

 

So I feel like I am a bit on information overload. Had an NST (Non Stress Test) this morning where they just hook me up to monitors and watch Jake's heart rate and my contractions for 20 minutes. I was hooked up for 40 minutes because they were busy. Had a few contractions during that time. Jake's heart rate looked great.
Next went into my doctors appointment. I was told that our case was discussed again in the surgeon/peds doctors meeting this morning. The radiologist brought up the swelling in Jake's right leg that was found last week. They are saying it is "lymphatic". Now this has never been known to be related to an SCT (tumor). So...now they are saying that they actually don't know what's wrong with Jake and if he even has an SCT. They discussed delivering me now, but all agreed that it would be better if he can wait until 39 weeks and his lungs are fully developed and he can breath on his own, one less complication. So as long as Jake remains stable, he stays in. I honestly don't know what all of this means. I don't have any answers because the doctors don't have any answers. Its all a waiting game until Jake arrives and they can see for themselves whats going on.
This pregnancy feels so normal and I feel him kicking a lot that sometimes I forget that there is something wrong with him. Yet we are tired of waiting for our lives to be turned upside down. Whatever Jake has going on with him, I am trying to trust in the doctors that they know what is best. Its just hard to do that when they have no answers.
I also had an emergency meeting today with the anesthesiologist. I had such insane complications with my last epi that I wanted to make sure they were aware of it and had paperwork from Inland Valley. They said I will have a spinal during the c-section, so hopefully that works out fine too. We meet with the peds surgeon on Thursday and he will give us an idea of what they plan to do with Jake if it is an SCT and what they plan to do if its not. Hopefully he can explain a little more what we are dealing with. I have another ultrasound next week and that should determine where we go from here. Whether he stays put or comes out. Its all a waiting game and I'm so ready for it to be over. Patience........

More....

Baby Jake Update #?- 32.4 weeks

by Erin Castellano on Tuesday, April 13, 2010 at 10:57pm

 

Had a busy morning at Loma Linda. Started with an ultrasound. Jake's blood flow and heart rate looked great. The external tumor is measuring the same as two weeks ago, 10cm in diameter. Not growing much if at all. The internal tumor is a bit more difficult to measure but is growing a little more and causing some problems. Rather then the tumor coming off his back externally like a "rabbits tail" it seems to go up the right side of his back a bit. The tumor on the right side is causing his right leg to swell up due to it pushing on an artery. The radiologist was not too concerned about it, as it is not causing him pain. It just looked a bit swollen. Now that we are counting down the weeks, Dr. Gollin, the radiologist, and doctor who knows the most about Jake's tumor and our case, is calling a meeting next week with all of the pediatric doctors and pediatric surgeons to create a plan of action. (Her husband is also a pediatric surgeon at Loma Linda). After that meeting, Steven and I will get a chance to meet with her husband, Dr. Gollin, and learn about how they plan to remove the tumor. I told her today that it was important that we had some information about this process. After Jake is born, everything is going to happen so fast that I want to be prepared.
I have not had any contractions and Jake's heart rate is looking great. Getting very uncomfortable and very ready for Jake to be here. We will schedule the c-section soon for the mid-end of May. They want to take him between 38 and 39 weeks, when his lungs are fully developed. I am also finally getting over my bronchitis and able to sleep better at night.
I also have to share a story about a friend I met on facebook who just delivered her baby girl Evalee. Evalee is an SCT survivor and has given Steven and I so much hope. She was delivered around 30 weeks gestation and is doing amazing. Just like Jake, she is an amazing fighter. Thank you Shannon for sharing your story with us. We continue to pray for you and your family and baby Evalee. She is amazing.
Thanks everyone!
erin

Update #6

Baby Jake Update #6 30.4 weeks

by Erin Castellano on Tuesday, March 30, 2010 at 4:16pm

 

Had an ultrasound and Dr appt today. All looked well. The ultrasounds seem to get harder and harder each time. I tend to get light headed and anxious a little faster and then need to roll onto my left side, which then put the technician lying across me to get the images they need. When I lie on my back, the baby ends up lying on some artery or something going to my brain which makes me feel that way. Today there was a student in the ultrasound room and the technician was letting him practice on my tummy, which I usually don't mind, but its getting so uncomfortable and I just want to get it over with. The internal tumor seems to be growing upwards more into his diaphragm, although it is not bothering the lungs or heart. He is breach at the moment and in a "frog like" position with his legs bent up on either side of him. They said this could be due to the tumor being in the way of him putting his legs together in front of him. They didn't seems too concerned about that either. The doctors tend to point out things that may seem a little "off" and then act as if its nothing. So if they're not worried, I'm not...kind of. :)
The doctor said everything seems to be "status quo". We were a little frustrated because the doctors seem to ask us the same questions every time we come in. "Are you aware you will need a repeat c-section? Have you met with the surgeons yet?" Steven asked the doctor if I would end up carrying to 40 weeks if Jake remains stable. She said, "Oh no! Not at all. She should carry to 39 weeks." We thought, okay, not much of a difference. So, as long as Jake remains stable and healthy inside, my c-section should be scheduled for the end of May sometime. We also asked how stable Jake would be after he was delivered. The doctor said with any delivery, its unknown how the baby will react to having the umbilical cord cut. Will their heart and lungs continue to work as they should? Will they breath on their own? In Jake's case, will the amount of overflow of blood hes been receiving and pumping through the tumor cause him distress? There is a complete unknown, but their hope is that he will come out stable enough to be able to breath and survive on his own until surgery. We also determined that the external portion of the tumor is about 4in in diameter. Not as big as we had once thought, which is positive. Its the internal portion causing the most problem.
Anyhow, that's about it. I head back weekly now to see the doctors. Every Tuesday morning. Kiki has been amazing with taking Bryce for us and they have fun play dates each time. Thanks Kiki!!!
I'm about to go take some of the recommended Robitussin for this awful virus and head cold I have. No fun. Thanks again for everyones thoughts and prayers. We will never be able to thank you enough :)

Fetal Echo

Fetal Echo 3/19

by Erin Castellano on Friday, March 19, 2010 at 11:14am

 

Had a fetal echocardiogram today. Heart looked great. It was pumping well and not overworking. The internal portion of the tumor still goes up to his mid spine, but is not bothering the heart at all. The cardioligist did say they sometimes there are little things that they may miss within the heart, but from the fetal echocardiogram and what he saw, it looked great :)
It was funny because even though the ultrasound tech took all the pictures and his heart was fine, the cardioligist came in and looked over the tumor and asked questions, along with another doctor. Im fine with that. The more they learn from this case, the better.
Thanks Sandy for going with me!

Update #5

Baby Jake- Update #5 28.4 weeks

by Erin Castellano on Tuesday, March 16, 2010 at 6:41pm

Not much to post today. Had an ultrasound this morning with a very upbeat radiologist from Hemet. He was really nice. Checked out Jake. We are starting to really have the ability to read the ultrasounds now. They are shown on a large screen in front of us while he is taking his measurements. The external tumor is easier to recognize and is getting larger, but not too big. We determined it was approx. 4.5 inches in diameter. About the size of a softball. It is still very cystic, so it is not growing too fast which is positive. The doctor then came in and gave everything a look and said his blood flow is looking good. Because our radiologist liked us so much, he gave us some great pictures of Jake. :)
I go back on Friday and they will do a Fetal Echocardiogram on Jake. They want to check out his heart and make sure it is in perfect working condition before they deliver him.
I have almost made it to 30 weeks, which is a huge milestone. After 30 weeks, his lungs are fully developed, so delivery can be at anytime.
Thank you again for everyones prayers. It is truly what keeps us sane and from stressing before there is anything to stress about.
:)

Update #4

Baby Jake Update #4- 27 weeks

by Erin Castellano on Tuesday, March 9, 2010 at 1:51pm

 

So today we had an "unscheduled" visit to Loma Linda. I have been having some contractions after meals and have been very uncomfortable. I called the doctor yesterday and they had me come in this morning. I was given Prozardia to take when these occur in hopes that it makes me a little more comfortable. Our radiologist came to us and stated that she was a little concerned about what she had seen on the last ultrasound. She went home after our last appointment and researched the "fluid-like" cysts she saw in Jake's abdomen. She was concerned that it may actually be urine backing up into him, thinking the tumor is blocking him from being able to urinate. She did another ultrasound to check it out and saw that everything inside looked pretty much the same. My amniotic fluid levels were also normal, which means he is urinating normally. (We had no idea that amniotic fluid was actually his urine. Weird.) She did not seem concerned with anything and said she would see us for our ultrasound next week. Afterward we finally met with the NeoNatoligist in NICU. This meeting was by far the most productive meeting we have had thus far at Loma Linda. The doctor sat down with us and went over everything we basically already knew. She answered any and all of our questions and was very open with us about what she knew and what she didn't know. We talked a little about Jake's surgery and that it would probably take place a few days after he is born. He may have a front and rear incision, depending on all of the scans that are conducted and when decisions with surgeons are made with how they want to go about removing his tumor. We discussed rules and expectations at what is available to us after Jake is born regarding his care and the part we play in his recovery. We were told to be prepared that Jake will probably be on a ventilator after he is born, if not after surgery for sure. He will be given medication for the pain and sometimes babies stop working on breathing on their own due to the medications. He will be hooked up to a ton of wires and tubes, which is good to prepare ourselves for, as best we can. We then got to go to the other side of the 3rd floor and had the main tour of the NICU. She started by taking us into the c-section room. Showing me where I will be, where Jake will go immediately after my c-section, and where Steven will be for it all. Steven will be right at my side for the c-section and afterward he will be with Jake the entire time he is monitored and treated. Once he is delivered, he will be taken into the NICU, which consists of 14 rooms, all in one large room. The babies are in large incubators with staff all over the place. Each baby has around the clock, 4 doctors and nurses monitoring them at all times. Parents are the only ones allowed back to see them and spend time with them, which is highly encouraged. They encourage immediate skin to skin and nursing, as soon as that is possible. The NICU is equip with breast pumps and private rooms to do so. They seem to have everything at your fingertips and everyone was so friendly as if it were one big family. Steven and I felt so at ease there and confident in Jake's care. We also saw the rooms I will recover in. They are large rooms with one bed, a large window seat, couch and table and chairs. They are welcoming and inviting and so private. They are down the hall from the NICU, so I will be close to Jake. Made us feel so good knowing Steven did not need to leave and could stay with us until we get into the Ronald McDonald House. The only downside is that no one under the age of 18 is permitted in the NICU. Not even siblings. It will be some time before Jake and Bryce can meet and I will have to travel downstairs to see Bryce while I am staying in the hospital.
Overall, a ton of great information and I feel like I know what to expect now. I am looking forward to our care there.

Update #3

Baby Jake Update #3- 26.4 weeks

by Erin Castellano on Tuesday, March 2, 2010 at 3:44pm

 

I'm writing this update with a bit of frustration. Its been an extremely LONG day and does not feel very successful. We met with our surgeon at 9am. She was a bit out of it and looked as if she was half asleep. I kept telling Steven we cant expected too much, they don't have hair and make-up people like the Grey's Anatomy stars, but none the less, her bedside manner was kinda crummy. She didn't give us much information about how Jake's surgery would go. She said they would have to wait until he arrived, take pictures then and make a plan of action from there. She also said that because the tumor is cystic, she was hoping that it would move downwards in Jake's abdomen as he grows. She had not read our file before our meeting, so we spend most of the 20 minutes with her in silence so she could read our file. So again, its a waiting game.
Afterward we headed over to the hospital for the ultrasound. The radiologist asked us what we thought of the surgeon. She reassured us that yes, her bedside manner is horrible, but shes an incredible surgeon. The radiologist said things looked pretty much the same as before. The tumor does not look as if it has grown drastically. The umbilical cord is still enlarged with a cyst on it, but it didn't seem like it was anything to be concerned about. The only difference is the internal portion of the tumor, the cysts were fluid filled. This was good because the tumor gives way to the organs, rather then pushing on them. She noted that was the only difference since the last ultrasound. Jake weighs 2.4 lbs and is in the 59th percentile. Growing good and strong. Steven mentioned that we were concerned about coming in for an ultrasound and them saying they needed to deliver that day. The radiologist said that is something we need to be prepared for. Its so unknown. (Frustrating).
After the ultrasound we met with the doctor. She was fantastic. She put in a request for Jake to have an ecocardiogram. They will check his heart and everything around that to make sure it is all pumping and working normally.
Our last appointment was supposed to be with the NeoNatoligist in the NICU. I have so many questions about Jake's care after he is born and about my delivery and recovery. I was really looking forward to this meeting, but the doctor was called away and couldn't meet with us. Granted, we didn't find this out until after we had waited for over an hour. Seriously, don't piss off a pregnant woman. So that will be rescheduled.
All in all, not too much new news. My mom said "No news is good news", so I'm trying to remember that. The picture below is of Jake, spine at top of picture. Head on right and rear on left. The external portion of the tumor is on the left, cystic looking. The dark parts are the tumor.
Next appt is on the 16th.
Thanks for everyones thoughts and prayers!!!

Update #2

Baby Jake Update #2- 25 weeks

by Erin Castellano on Thursday, February 18, 2010 at 1:21pm

 

Had our second ultrasound with Loma Linda today. They noticed that the umbilical cord was abnormally large with some sort of mass on it. This could be due to the internal portion of the tumor putting pressure on the cord but they were not certain. I asked if the baby was getting the nutrients he needed and the doctor said yes, it just looked backed up. They did not seem too concerned. The tumor does not look like it has grown too much. The internal portion of the tumor is what they are concerned about the most. It seems to be pushing on the liver a bit. They will monitor its growth and the location of his organs to make sure it does not cause damage. The doctor told us that our case was discussed at their conference, so all of the doctors and surgeons in Loma Lindas NICU are aware of our case and are working on a plan. We meet with the surgeon and NICU team in two weeks to discuss what the procedure will be after he is born. Our next appointment is March 2nd and we will have another ultrasound and meeting with the doctor. Jake has been VERY active. He is kicking and moving a lot, so that makes me feel good.
Thanks for all of your support, thoughts and prayers. It is the reason I am able to stay calm.

Upade #1

Baby Jake Update #1- 23 weeks

by Erin Castellano on Thursday, February 4, 2010 at 3:41pm

 

So as most of you know, we are prego with baby #2. At my 20 week ultrasound, the radiologist found what looked to be a "mass on the tailbone." After coming home to research "mass on tailbone", I found the word Sacrococcygeal Teratoma (SCT). Trying not to think too much into it, I waited until our following ultrasound with another OBGYN/Radioligist in San Bernardino. Once he looked at the ultrasound he conducted, he also said the same words I had found online, Sacrococcygeal Teratoma. He said he thought thats what this was and was looking for a second opinion with Loma Linda. I truely thought the worst. Our doctor didnt seem to know much about them and I just felt that this was the worst thing that could happen. After talking with several people though facebook and support groups, I have read about so many successful stories and am feeling very optimistic.

Loma Linda- I am now a high risk pregnancy and all of my medical care has been transfered to Loma Linda. We had our first appt at Loma Linda on 2/3. This is what was said.
The baby...is a BOY. (Which is ironic because SCTs are mostly seen in girls. We would have sworn it was a girl. lol). His name is Jakob Anderson Castellano. Baby Jake has a Sacrococcygeal Teratoma, tumor, on this tailbone. It is internal and external and very large, which makes it more complex and difficult to remove. The tumor comes off his tailbone, externally, and internally it goes up to the thoracic portion of the spine and wraps around the right kidney. The good news, if good news can come out of this, is that the tumor is mainly cystic. This is good news because it does not have a lot of veins. A vascular tumor, with a lot of veins, makes the baby's heart work harder to pump blood through the tumor, possibly making the baby become anemic and go into heart failure. So, baby Jake's heart is hopefully not working overtime to have to push blood through his whole body and the tumor. It is also promising because the tumor is not getting a lot of blood, there is a chance it may not grow much more. Also, good news. So, from here, the doctors will keep an eye on the fluid levels around Jake to ensure he is getting what he needs.

Plan- I will be monitored every two weeks up until 28 weeks, then it will be weekly. Our doctors hope is that I can carry up to 36 weeks and they will do a c-section (which puts his delivery at the beginning of May). If Jake shows any signs of distress, they will c-section right away. I just need to carry as long as possible. In two weeks we head back to Loma Linda for another Ultrasound, consultation with the NICU Surgeon and meeting with the NICU doctors and staff that will be caring for Jake after he is born.
Jake will have major surgery after he is born to remove the tumor. (Not looking forward to that). But the hope is once its gone, it doesn't return. These tumors are usually benign.
Loma Linda staff was wonderful. These are rare cases and I feel as if they were very interested and willing to give us everything we needed. Its a learning process for them also.
Thanks for everyones support. I will continue to update as we know things. This seems like the best way to keep our close family and friends up to date. Pray for Baby Jake.