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...
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