The "long and short" of it is... we brought Cedric home from his 2nd NICU "home" on October 14th.
He was transferred from the first NICU on October 6th. I got to ride in the ambulance with him on our little trip. It was kinda fun, seeing how I had never ridden in one before. Cedric didn't seem amused, but, that is ok!
Cedric was moved to the other NICU because he was continuing to "fail to thrive" on his own, and it is a higher level care facility. After much consideration, the doctors decided to have a G tube placed so we could take him home. Before the surgeon would do the surgery, he wanted an "upper GI tract" study done. They found that Cedric has intense "silent reflux disease". Basically, my baby was quietly suffering from GERD. Because of this, he would also have a Nissen Fundoplication done, a procedure I am still not sure I like.
October 6th was surgery day. It went well, no complications with anesthesia and so on. After a week of slowly introducing tube bolus feeds, the doctors felt it was time to send Cedric home. I was trained, for an entire day, on the in's and out's of tube feeding, caring for the site and even what to do if... gasp... the tube comes out! (Which is to actually stick the tube back in, tape it for good measure, call the surgeon and get to the ER... stat...)
Life with a little guy with a feeding tube was a little awkward at first. I couldn't quite figure out how to hold the feeding tube and connect it correctly. There were other issues as well. But, now, I feel like a pro. It is funny how that happens, time really does help... a point I forget all too often.
The most unfortunate thing that has happened so far is that Cedric is not eating anything by mouth now. It was a pretty quick decline after he came home. This is the complete opposite of what we hoped for. Thankfully, there is a program to help us with Physical, Occupational and Speech therapy.
Right now, we are trying to figure out why Cedric will not or cannot eat on his own. We have been "playing" with formulas. We began with Similac Sensitive which was making the baby uncontrollably angry at every feeding. Then we switched to Similac Alimentum. I made the mistake of mixing it up, and sticking the bottle in his mouth, without tasting it first. Let's just say this, imagine the most disgusting thing you have EVER drank... now multiply that nastiness by 100,000,000 and you will have a vague idea of what it tastes like! His eating skills really went down hill after that. So, we went to Similac Soy hoping that the absence of cow milk would help. Nope. At that point, the Alimentum had agreed with his tummy the best. So, then we decided to let him nipple the Similac Soy and then we would tube the Alimentum. After about a week of diminishing feeds, he stopped eating completely.
For the last 2 weeks or so, we have been tubing the complete meal of Alimentum. However, about a week ago, the old symptoms of extreme fussiness, yucky stool (ummm... hello, stool is nasty... but YES there really is even NASTIER stool), retching, gas, and extreme uncomfort ALL the TIME came back. Great... what are we going to do now?
As we were going in for his 2 month appointment on Tuesday, November 30th anyway, I decided I would push this then. The great news is he is gaining weight, even though every meal is a horrible experience for all involved. After discussing it with his pediatrician (who I really like) we decided this was something a GI Specialist needed to take over.
So... fast forward to today.
Our agenda for the day included two doctor appointments for Cedric. A follow up with the Pediatric Cardiologist and the GI Surgeon to have his MIC-KEY button fixed and his "granulation tissue" removed.
When we got to the heart doctor, he was doing really well. He was incredibly patient while the nurse got his blood pressure, took his measurements and weighed him (which took about 20 minutes... babies are tough to get a BP on... blasted teeny tiny arteries...) During the "interview" he started to get upset, which turned into angry which elevated to being completely inconsolable... for about 20 minutes. During his rampage of tears, the doctor came in to attempt to talk to me and do the exam. After a couple of minutes, the doctor asked to feel his belly. He told me even though he was incredibly upset, he did not like how "rigid" his little tummy was. He asked when his last pooh was and said he was concerned about a possible impaction. He then decided to call the Pediatrician, get her thoughts and go from there. After talking with her, they sent us down to Radiology to have his abdomen filmed. Then, we got to go upstairs to see the pediatrician.
Thanks to modern technology, the Pediatrician was able to see the films immediately which did not indicate an impaction! Yay for Cedric.
I did not mention this before, but at his appointment on Tuesday, we discussed using an even more broken down formula. We (I use this broadly, as I feel I am just as involved in getting to the bottom of this as the doctor) were going to consult with the GI Specialist first to see if they had any other ideas. However, with current events, the doctor got a hold of them today. We left the Pediatrician with the understanding she would contact the GI folks and something would be done today at the later appointment.
At 2:00 we went to his GI appointment. I feel really bad for his nurse. As she asked me how I was doing I told her "I have had better days"... then she asked what was going on... and bam... I unloaded on her! Poor gal, but she did go tell the Surgeon I was "not happy"... so that was good... I guess! Anyway, he came in and we chatted. (He did offer to "keep" Cedric for me! At one point he and the Nurse Practitioner left the room and took Cedric with them. When they came back they told me they had found about ten people who would take him. I guess that is what happens when you are so darn cute). He decided to not do the procedures today because we really need to get this "gut" issue or issues (unclear to the moment) figured out.
So then, we walked across the hall to the GI Specialists. We spoke with the offices Nurse Practitioner (who I really like so far, she made me feel a little better). Her hypothesis is that this is a protein allergy and that his GI tract is so irritated that is causing all these other issues. So, we are going to try Neocate. It is a formula built from pure amino acids that does not contain any type of protein, soy or animal. We get to try this for the next four days. I will give her a call on Monday to follow up with our observations and will go from there.
And that, my friends is where we are now...
Labels: Failure to Thrive, G-Tube, Stories