Thursday, July 10, 2008

Drum roll please: Today at the GI Clinic Noah weighed in at 12 pounds 13 ounces and Jonah 13 pounds 6 ounces. We were thrilled at their weight. We had our big day today (FINALLY) and the dietitian was shocked we had not yet met with the clinic. I tried to tell her I had fought to get in earlier but we were pushed off because they just didn't have any earlier appointments. Indeed the clinics we go to seem to all have the same issue in that it is so hard to schedule appointments because they are over booked with patients. Talk about serious high demand.

Good news, the dietitian was pleased that both boys are gaining weight and growing proportionately. She said if we looked at an adjusted weight scale for micro-preemies both boys are in the 25th percentile. Not bad. Now of course, they only rank in the 5th - 10th percentile when you look at their actual age but comparing apples to apples, they aren't doing badly.

What a relief!! Especially because I have felt so alone these past couple of months trying to figure out ways to better get the boys to eat. I feel saved by the Yahoo! group I am a member of, I have gotten so many wonderful ideas from other moms, ideas that I know have helped both my sons as well as ideas that have made me a better/more educated advocate for them. I am not happy with our pediatrician and only consider him mediocre, so I really have felt like a crusader in trying to get the things done that need to be done for the boys. I wish I could change the situation with our pediatrician but he was recommended by the head of pediatrics in our area and is contracted with our HMO. The only other experienced neonatologist in the area retired that works with our HMO. Got to love insurance.

Now for the yucky details to come. Jonah is set up for a PH Probe study next Tuesday in Fresno. I'll be spending the week down at the hospital. He goes in mid-morning Tuesday and they will insert a tiny probe through his nose down to where the esophagus meets the stomach. It will monitor for a 24-hour period how often the esophagus is exposed to acid. Jonah can't take his reflux meds for 48 hours prior to the procedure. Oh boy, it is going to be a very "unhappy" few days without those reflux meds.

The only thing I am nervous about with this procedure is that they want to determine what Jonah's baseline is (percentage wise) for reflux issues. The GI specialist did say that if he is refluxing at a high percentage it may not matter how many medications we give it will never take care of the problem and he mentioned the fundo surgery that Shane and I are not supportive of. I did tell him I have done my research and 2/3's of children who undergo this difficult, painful surgery STILL are treated for reflux! That is a ridiculous high number of children that are not helped by the procedure and it is a very difficult, painful process. Plus, most children end up with G-tubes and we dread this route as it will create life long problems that we want to avoid, especially when Jonah is doing so well bottle feeding now (at least well for him!)

So pray for Jonah that his test next week will not show anything that is not manageable with medication. I do have hope that it will turn out ok as for the most part his reflux is under control with medication right now. He still refluxes a bit but not as much as he used to and he hardly vomits anymore AND the medication he is currently on is NOT adjusted for his weight/age as we found out today. The GI specialist today made adjustments to his medications. FINALLY! I have been telling our pediatrician for over a month that both boys need to be up to par on their medications and he basically told me he wasn't comfortable increasing the meds as they are already on high doses. I am so glad the GI specialist put things in order and gave us several refills. Plus we will be seeing him every 6-8 weeks so if I think they need a new dosage or am worried about the medication overall I can review things with him.

Noah is being referred to a "feeding team" to do a full assessment of his eating habits. He has a tendency to fight us like crazy. Just this last week he has taken to refusing to eat after about an ounce or two and it has been difficult work to get him to finish his bottles. We have to play with him and play with him or distract him to get him to finish. It's pretty exhausting. However, the week before he was eating like a horse! He is pooping regularly now with the Probiotics so we know that is not an issue. The GI specialist upped his reflux meds as the dietitian talked with him about Noah's behavior and we decided he may be "silently refluxing" and have more of an issue then we really know about.

So both boys have increased reflux medications (fingers crossed this makes a difference) and Jonah is scheduled for his probe study next Tuesday. We are also trying a different type of laxative to see if it can help Jonah's painful bowel movements. I have my fingers crossed this will finally make a difference, if not we will have more studies on our hands for poor Jonah to try and figure out why he is not pooping normally!

Jonah has a long, difficult week next week and I keep hoping things will work out just fine. It was good to hear that all our efforts have paid off with the boys, so far. I guess we are putting solids off for Jonah. The dietitian wanted him to have more head control and said we really didn't need to pursue that until closer to 10 months (adjusted) anyways so she said we have a few months yet before we need to start worrying about introducing solids. In the mean time we'll pursue physical therapy and hopefully we'll see real progress with his upper body control. Putting of solids is fine with me, I am dreading it anyways. She said to put Noah off for one more month and maybe end of August we could discuss starting him on greens.

We are praying for a good week next week and that Jonah will be strong enough to make it through everything.

Thank you everyone for your prayers, please continue praying as we need the support.

PS--A BIG thanks to Linda for helping out today. We were lifting, pushing, hauling those boys around in 109 degree heat today. It was an exhausting day and I am so grateful she braved the heat to help me make it down to Fresno and back!

1 comment:

wilkinson_fam said...

Oh my goodness, Michelle! What a ride you have been on! I am so happy to hear that your adorable twins are doing better. All it takes is something like this to make you realize just what is MOST important.

We feel your pain. Last November, we almost lost our then 3 year old (Gracelyn) to a rare infection that put her in ICU for a month and quarantined us for another 6 (all while pregnant with Baby #3 and in grad school at Purdue). When it rains it pours, eh? But I - like you, I'm sure - can testify of the "tender mercies" of the Lord that keep your head above water and give you the strength to get up and face it again another day.

Though Gracelyn has some permanent damage that we'll always have to deal with, it is such a blessing to have her precious spirit in our home and family. I am grateful you get to experience the same blessing.

I will send you an invite to our blog (private). I look forward to staying in touch and perhaps getting together when you come back to UT to visit family (David's best job offer was from here and so we moved back to Centerville 1 month ago).

Love you, girl! My prayers will petition the heavens in Jonah and Noah's behalf.

Amanda Kjar Wilkinson