|Little Baby toes|
|His Christmas/New Years decor|
Braeden is losing wires and tubes each week and is FINALLY at the point where it is considerably easier to move him from the bed to be held (or I am more adept?). The past week has been a week of growth because he hit that 8 week mark on Monday and I was bound and determined that this kid was going to start nursing. I've had it with the pump, I am soooo sick and tired of having to pump every 3-5 hours a day times by 7 days a week times by 8 weeks...well, it sucks (ha ha, literally and figuratively). Each time I hold B for our skin to skin time he is rooting like crazy. That's good right?? Right, but put him near a nipple and he really doesn't get it. That's fine, I've the patience of a saint, (...uh, maybe not) so I've been coaxing him a little bit each time.
Here in lies the problem(s):
1) He has an extremely high palate which is so high there was concern it was actually a cleft at first. So I think that the height is caused partly due to genetics (Ry has a high one), and partly due to being intubated (especially since he's got a groove going the opposite way on his tongue). If I have one more nurse being negative (which I am mostly certain they are not trying to be), and telling me he probably won't be able to nurse properly I might smack someone (did I mention hormones are a little on the edge these days as well? Yikes).
2) He has been tube fed through either the nose or mouth directly into the tummy this whole time (well, when he's been on food that is), so he thinks he cries and his tummy gets filled, no work needed.
3) With all of the swelling it is hard for him to open his mouth as wide as needed, but that is coming down now.
I realize these are obstacles, but I can work around them, right? Look at what this kid has been through just to survive this long! I can do this! So we had an OT (Occupational Therapist, they work on gross and fine motor skills for the most part) come and do an assessment on him. I've been waiting for her to come by for a few weeks now to give me the okay to go ahead and nurse and got tired of waiting (hence the start this Monday). I found out today she only works one day a week and visits all FOUR hospitals in that one day...not so helpful! Her assessment found that he shouldn't take ANY fluid (ie: milk) into his mouth. Uh...what?! DAMN! Because Braeden isn't consistent yet on a soother (before you Mom's get mad for my sake that they gave him a soother already, it is proven that it offers comfort to preemies because babies inherently need to suck. Thanks for the Mommy backing though), she feels like he's not ready for more. There is also the issue with his vocal cords not working (more on that in a sec) and she feels that he may not be able to swallow with aspirating some. What happens when they aspirate? Fluid into the lungs and pneumonia, been there done that already. So her suggestions are to put a gloved finger around his gums and if he is inviting then I get to stimulate his tongue and see if he'll suckle and to continue to use the soother to see if he can become consistent on it. The frustrating part is he'll take the soother for me (super Mom) but not really anyone else but I do have to admit, he is lazy with it in his mouth certainly. As for the breast feeding? Off for now (still), but he is allowed to 'explore' with a freshly pumped breast but not permitted to suckle yet. Let me know tell you how my morning went after this assessment...NOT WELL! Braeden and I did our skin to skin and his nurse went out for her coffee break and he was inconsolable to the point that I had to call for help (never happened before). He was desperate to nurse and so frustrated that he couldn't get it. The nurses have been putting drops of milk on his tongue since day one of eating so he is very used to the taste and now he know where it comes from! I didn't think it would be such an issue because he had a pretty full belly but he felt strongly otherwise. When I finally called the nurse I asked her to bundle him up (swaddle) so that he could be less stimulated by me...that sucks. It did settle him for a time but he was still rooting on me and trying to suckle, which I again let him try but it again ended in frustration on both sides. All the issues I cried through with trying to nurse my first two properly? Nothing at all compares to this. I guess I had figured that if I suffered through the breast pump long enough that I would be able to switch over to nursing him. I wouldn't want or stress about it nearly so much if I didn't want to get this kid stronger and healthier, not to mention the bonding it would give us both. The thing that makes the most annoyed?? Is that I've persevered with the damnable pump even though I am still producing such a tiny amount of milk!!! I am now pumping only about a third of what Braeden needs each day and they are increasing his feeds daily...SIGH. Not only am I fighting this losing battle (so it feels most days) but they are having to give him formula anyhow. Now, not to worry, Michael has given me many (and very sincere and thoughtful) pep talks about how I am giving everything I can, but it is still so frustrating not to mention mentally and emotionally draining. Of course when I look back on this I'll certainly think, "really, with everything going on that is what you complain about??", but it is hard, no question, to keep going at the pump each day. It is apparently a very 'cultural' thing to measure our breast milk output as most cultures just go with the flow (I'm on pun-fire tonight). It is hard to not notice the amount when you know a) that it's not gone up and b) how much he needs to get his daily intake. Okay, all together, "Suck it up Buttercup!!!". Thanks, I needed that!
So what about the vocal cords??? Well I got an interesting tid bit of info today about them. Braeden was extubated the 25th (11 days ago now) and still has no voice unless he's really really mad then he can let out a small squawk. I found out today that it is very common (although never conveyed to me that I can remember) for kids that have the coarctation surgery that they can temporarily paralyze the vocal cords on the left side. Now most kids get it back in no time...Braeden? Well he seems to do everything else that is in the 'only a small percent of kids may...category'. We will find out tomorrow when the ENT (Ear, Nose and Throat) Specialist scopes down his throat. They are also looking for abnormalities and any excess swelling of the cords or surrounding areas. Yup, something else for this poor kiddo.
Other things to report on are his EEG (brain wave scan) was done earlier in the week and I've not talked to a Neuro (which is actually a good thing because if it was truly concerning they would find me) but the Neonatologist reported that there are some concerns on the report but 'nothing new that we didn't already know'. Um, great? He is eating more and more (as mentioned above) which means we should see him starting to gain weight in a good way for a change. His swelling has come down considerably but he is still quite edematist in his chin/neck area (also mentioned above with the vocal cords). They are figuring he is still about a pound/pound and a half away from his dry weight but are starting to dose and feed according to his weight of 3.4 kilos now. He may not fit those preemie clothes that we (and others, thank you) bought for him by the time he comes home. I've decided to take in a few small sleepers I have and he can wear them on two or three of his limbs so that he can get used to wearing something. He hates having his bum changed now, wait till he gets to enjoy the clothes on and off process with it! Is it wrong to torture him just to try to find some normalcy here?? Lastly, I was told today that the Neonatologist thinks he might be bored...yes, BORED! How freakin funny is that?! It didn't cross my mind that at almost 9 weeks he might be looking for other stimulation outside of laying in his incubator all day...sheesh. I am taking him in a swing (thank you Sumyu) and a bouncy chair to see if these give him his much needed (apparently), party time. Who wouldda thought that a few weeks ago?
I say saddle up kiddo, you're in for a rockin good time (sorry, I couldn't resist one more!)!