Lots to go over...its been a busy day but everything went soooo smooth. Thanks to the Ronald McDonald House, we were able to come down last night and stay. We then just had a quick drive to UCSD. ((Seriously, if there were ever a charity you wanted to volunteer or donate to, this one is amazing. They provide so much for us. I would be a very stressed out mama without them!))
Jake was treated at UCSD by an interventional radiologist Dr. Pokboz. He loves Jake, I think its because he mostly treats adults. We sat down with him before the procedure and he said he was going to do a few injections in to Jakes bottom to shrink some of the unwanted veins. He injects alcohol into the veins and they then shrink up over the next few weeks. There were several risks but he felt the benefits outweighed the risks and that this was one of the best treatments to start out with. He then went back for Jakes MRI, flushed colored stuff through Jakes veins and was able to see where he wanted to directly work. Because there is so much going on in Jakes abdomen, bottom, and leg he needs to be careful where he was placing the injections. The MRI lasted about an hour, the Sclerotherapy lasted about another hour, then I was able to go up to recovery with him. The anesthesiologist was from Children's Hospital. She called in a nurse from Children's to be with Jake for the entire morning, through the whole procedure, since UCSD doesn't see kids often. She was great. After Jake started to wake up, he was given pain medication. Dr. Pokbaz came in and went over everything he had done. He even did a small injection in Jakes big ankle, hoping that helps with the swelling of it. Everything in his bottom and leg were very very swollen and very hard, which is expected. It should be this way for the next few weeks. The doctor said it may be uncomfortable for him to sit for the next few days because of the location of the injections.
After he was in recovery for an hour, a transport team from Children's came to take him. We loaded up and I went along for the ride as well. Jake did great. Was awake the entire time and not a sound out of him. Once we got to the hospital room, he took a great nap, woke up in a little pain, was given more meds, and took another nap. Jake woke and ate a HUGE dinner. Mac and cheese, peas, applesauce and cheerios. Along with 2 bottles. His pain tolerance seems good. He was even sitting up. He just wants to be held and seems to have very restless legs. They are giving him Tylenol around the clock and may give him something stronger through the night to keep him comfortable. My mom is amazing enough to stay with him for half the night tonight, so I can get some rest at the RMH...which Im not because Im doing this. :)
I was concerned about getting him in his carseat tomorrow to come home, so were going to bring it up to the room and see how he does sitting in it. Praying he can do it, its a long drive. We will be able to go home tomorrow, Im pretty sure, and will be back for a post-op in a few weeks. If Jake takes this Sclerotherapy well, Dr. Pokboz wants us back in 6 weeks to do it again. Makes me sad that Jake will have to go through it again, but Im learning this is what his syndrome is about. He is in great hands. Dr. Pokboz also wants to send Jakes MRIs to a doctor friend of his in Denver who specializes in these cases to get a second opinion in treatment options. Looking foward to going home. Missing Bryce. Steven heads out early Monday morning for the east coast with some work buddies for some classes. Just the boys and I for the week as we prepare to celebrate both of their upcoming birthdays!!!
Thanks for the prayers. We have a tough little man!
Wikipedia had a pretty good description of Jakes treatment today
http://en.wikipedia.org/wiki/Sclerotherapy
Friday, May 6, 2011
Monday, March 28, 2011
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
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.
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!
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...
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.
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.
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