Tuesday, February 24, 2009

Chugging along....

We’ve had quite a few doctor’s appointments in the last few weeks which netted us some good news and some bad. First, the positive news: both Landon and Logan’s ROP has regressed and is well on its way to being gone. Of course there is a distinct possibility they will have complications with their eyes later in life (ie-need for glasses) and Logan’s peripheral vision is compromised (due to the laser surgery) but his central vision is intact and they are no longer at risk for blindness (a collective sigh of relief resounds through the room).

Landon also had a follow up appointment with the nephrologist and his blood pressure has stabilized since he was started on medication so fortunately they did not need to perform any further tests on him. He will continue to be monitored by both the nephrologist and urologist for the foreseeable future but we are hoping it won't progress into anything more serious.

Of course with the positive comes some negative. We visited the audiologist at CHOP and as we suspected (and dreaded), Landon was diagnosed with severe hearing loss in his right ear. In other words, he is not completely deaf in that ear but close to it. He will therefore be at an even greater risk for speech/language and development problems but we have already started working with the Early Intervention program so I am confident he will get the best help available. He will join Logan in a follow up appointment at CHOP ENT (Ear, Nose & Throat) to determine the cause, though the audiologist said she believes it is structural, not a result of the meningitis or brain bleed he endured in the NICU. (Logan is going to ENT for his weak left vocal cord from being re-intubated for the shunt surgery). I suppose all I can do at this point is to look for the silver lining and be thankful that he can hear perfectly with his left ear, right? Or perhaps that is just the PC thing to say instead of admitting that deep down inside I’m absolutely devastated once again. We have known for quite some time that Logan will have many challenges he will undertake in his lifetime but I have been secretly hoping and praying that maybe Landon would escape this nightmare without any serious complications that would plague him for the remainder of his life. That he might be spared of that burden and my heart may be just a little bit lighter and free of some of the immense guilt and grief that consume it. Alas, no such luck.

On the home front, things are still going well. Logan continues to be our monster eater – at only 5 weeks of age (adjusted age obviously) he’s already eating 7 ozs. every 4 hours or so!! He hasn’t been weighed lately because we haven’t been to the pediatrician in a few weeks but they both have an appt. next week and I’m extremely eager to find out how much he weighs. I will be shocked if he’s not atleast 9 pounds, he’s getting so heavy that my arms ache sometimes from holding him after only a few minutes! Landon is still struggling with his eating as he tires out very quickly and often can’t finish his 4 ozs. His sucking reflex is much weaker than Logan’s and it takes him much longer to take down a smaller volume of formula. Add that to the fact that he has reflux and often spits up and it leaves me constantly worrying that he’s not being properly nourished and not gaining weight at a healthy rate. Or maybe he’s doing well for a 5 week old and I’m simply comparing him to Logan who is eating much more than a typical baby his age would be??

Just to clarify the aforementioned “adjusted age” reference, due to the fact that the boys were born 15 weeks early, the question “how old are they?” will never be a simple one for us. Their chronological age is 20 weeks (born 10/5/08) but their adjusted age (using 1/19/09 due date) is only 5 weeks given that they weren’t even supposed to be born until that date. The latter age is what we will use for purposes of evaluating developmental progress and milestones.

They both sleep relatively well, although of course we will be much happier when they start to sleep through the night! Right now, they usually get a 10-11:00 bottle, one around 2 in the morning and another at 6. Often times though, one or both of them will decide to stay awake for one reason or another in between bottles and that is when the nights (and ensuing days) are rough. Bath time is extremely stressful as Logan absolutely hates it, as he does most things that involve any sort of handling. It scares me to take his oxygen off for a prolonged period of time, particularly when he is wailing so hard he is turning a shade of bright red and purple and is fighting to catch his breath. It makes it difficult to clean him as thoroughly as I’d like and with the attention he needs because I find myself rushing through it out of sheer terror and heartache. Landon, on the other hand, has no problem with his bath and usually just sits there and enjoys the warm water that Daddy makes sure to splash on his belly to keep him warm.
Well, it’s already 10:00 and the little men are due to eat soon so I have to run off. I’m hoping my next post will bring only good news though, as they don’t have quite as many doctor’s appointments in the next week or two. Please continue to pray for Landon and Logan and their well-being.


Me said...

Sounds like your guys are doing so well! I know it is easier said than done, but hearing loss in one ear should not have that great an impact on the speech/language development, especially if you get early intervention. Sometime down the road, you may be able to discuss options like a cochlear implant to give him hearing in both ears, although, with normal hearing in the one ear, an implant is probably unnecessary. In the meantime, I'd suggest using sign language with the boys - it will actually help them BOTH develop language skills early on, and it is one more way to stimulate them.

I'm so happy you've been getting such good news lately. - Tkeys

Jill said...

Hi love, I just want to say that I'm just as proud of you as I am of those 2 miracle boys. The love and dedication you have for them is quite obvious when I watch you with them. You're an amazing mother and any obstacles they have to go through will be that much easier having you and Steve in their lives. We'll all get through it together. Love you and cannot wait to get home and see my little squisheys again!! XOXOXO

Anonymous said...

Hi again! (I'm Liz from the expecting multiples board.) It's so amazing to see how they are growing and doing so well. I'm so sorry to hear about the hearing trouble, but hopefully you will continue to get good news for the future from the doctors and your early intervention team.

I wanted to tell you, since I had a former preemie with reflux, first, I completely sympathize! People have no idea how hard it is when it takes 45 minutes for your baby to eat 2 ounces at 2 a.m, only to spit it up later - the whole sleep deprivation thing takes on new meaning! Do talk to your doctor about medications for that, if he isn't on any, though. My daughter was on reglan and prilosec and was crying, spitting up (once holding her breath and sending her off in an ambulance because her episode affected her oxygen levels- eek). She was truly miserable for about 4 months, until we figured out prevacid was a much better medication for dealing with her reflux than the prilosec they had prescribed in the NICU. So look into that if it continues. Also, we found she slept better in a bouncy seat than in her crib because of her reflux. We did that for probably her first month or two out of the hospital, then once she was on the right medications, she slept well and spit up a lot less, and went back to a crib.

Sorry this is so long - I wish you all the best. Your babies are so beautiful, and you are such a strong mom! Your blog brings me to tears every time I look at it!

Ang B said...

Hi, I don't know you at all but I stumbled upon your blog while trying to navigate to mine (MyLifeWithTwinMiracles) and your story is so similar to mine it's astounding. My boys were born in September 2007, at 24 wks 2 days, weighing 1 lb, 2 1/2 ozs and 1 lb 6 ozs... and while one of our sons has mild right hemiplegic CP as well, the other one is pretty much normal, just small! I have just started my blog, so I haven't actually gotten our whole story up, but check it out sometime if you want, I think you'll find the similarities are insane! Angie