Thursday, November 5, 2009

Six months

Its sooo hard to choose which pictures to post when they are all sooooo cute, but here's a few of my favorites.....

Alex and beginning of a smile.....

Pensive Alex

Please Mom, just no more photos

shhhh, don't tell him I took another.....just couldn't resist

Nicholas looking very guilty....
Happy, Happy Nicholas

Its hard to fathom that the boys are now six months this week. SIX months. Incredible. They've been home for almost three months and our lives are simply unrecognizable in a challenging but also beautiful way.

Things are going overall quite well. Alex is still doing well post shunt surgery with his newfound energy, voice and appetite and we are loving that. In the last week we have visited Pulmonary, GI, cardiology, Ortho and neurosurgery for follow up. Alex will likely be keeping his oxygen on for awhile because it is thought to help his lungs (obviously) and his heart to not have to work so hard. His oxygen levels have been very stable on the small dose he is on so we actually got permission to disconnect the actual monitor during the day while I am with him and just use that at night primarily. This is actually a big deal since the monitor can create quite a bit of extra stress, and tends to set off the alarm just when the actual sensor gets loose or he moves too much, and not for any kind of emergency (even though it gets the adrenaline rushing when we hear it). He has not needed an increase in his oxygen in quite some time which is great. We obviously know the signs to watch out for during the day if there is an issue, and ofcourse we "plug him in" every night so we can hear the alarm if anything God forbid happens at night.

I actually thought I'd have a harder time being without the monitor to look at anytime I wanted to double check his numbers but its really more of a relief not to have it 24/7. Our comfort level is much better in this regard and shows now that we've moved him back upstairs to his room with his brother, so now Mark and I can both sleep in our room as well. (When Alex came home initially on oxygen and monitoring in September, we were taking turns sleeping with him downstairs so one of us could always be right next to him just in case).

The other news for Alex is his "bump" is coming back. Mark and I were surprised and confused when the new flat spot on the side of his head started filling back up this week, along with some other swelling near his catheter site on the back of his head. The neurosurgeon was able to reassure us that nothing terrible is happening but apparently the site where the previous shunt was placed must still be somewhat open and the fluid is just finding its way back there. We are not sure how much it will re-fill but if it becomes too large again, the only course of action is another surgery to try to close that site. Mark and I were very disappointed to hear this and hope that it won't come to that.

Due to the fact that Alex has had that bubble for so long, it caused him to lay on the other side of his head all of these months, resulting in very tight neck muscles and a misshapen head on the other side. Neurosurgery wants to see him back in three weeks and then is recommending that he get fitted with a special helmet to re-shape his head. Apparently this is something that he will need to wear for 23 hours a day for several months. He said the extra fluid and shunt site make this more challenging and might require him to wear the helmet until he's about a year old but time will tell. Wearing this to he's about a year old? That seems soooo long.

With everything else that he has been through, this is the least of our worries but still saddens me for some reason. I worry about him being uncomfortable, having to wear something on his head all day/night for months on end. In my heart I think, "hasn't he been through enough already, can we give him a break already?" I know he will likely sail through this challenge like he has every other one before him. But I can't stop thinking about how much he hates the oxygen in his nose and how he gets agitated about it and trys to get it out, and now thinking about something on his head, It just feels like there is one thing after another for him and it makes my heart heavy.

In other news Nicholas has taken a little step back with the feeding issues and we've been in touch with GI several times this week. We tried decreasing one of his GI medications and even one less dose seemed to prove havoc. His appetite is back down, we've had to try numerous remedies (none of them pleasant) to help him "go" and he has lost several ounces from last weeks weight. It is a very powerless feeling when your baby doesnt' want to eat and when you know they are not getting enough to grow, or even maintain their weight. I have to say the constant feeding issues that we've had taking turns with either of the twins all of these months is one of the most chronic stressors we face. I used to long for the day that I could feed them both at the same time, now I just long for the day that I can take out a bottle and not feel like I have to fight with one of them just to take the minimum for their health.

Lastly it looks like Nicholas's hernia is back and likely contributing to or the result of some of the issues above. We spoke with his doctor tonight and they said its not "common" to have them return after surgery but apparently it can happen. The concern is that the part of the bowel that has fallen down could get "stuck" and result in a partial or full obstruction of the bowel so she says we are likely looking at another surgery for him very soon to correct this. We will be consulting with the surgeon again asap. In my head I'm adding up the surgeries that my babies have gone through in their very short lives (4 surgeries for Alex, 2 already for Nicholas) and praying for some peaceful time ahead.

I guess it shows that I'm feeling a little weary tonight. I'm sure with some sleep, a "nap" as it may be and some prayers, I'll be feeling more upbeat tomorrow but I thank you for "sitting" with me when I'm not always at my best, and sending us your love and support. I admit that I often feel like I "should" only write when I'm feeling optimistic and strong, yet I think it helps sometimes to have an outlet the moments that I'm feeling anything but so thank you for that (not that you really had a choice, huh? but I guess you could just stop reading sooooo.....I guess if you ARE still reading, THANK YOU!

(I'm going to turn in now but will add some updated pics of the boys to the post tomorrow because really, isn't that the best part?)


Anonymous said...

Holli, I am so glad that Alex is starting to do better with his oxygen levels. Don't worry about the helmet. So many kids do just fine with it. Alex will to because at least it isn't something up his nose all the time. Also don't feel bad about not being up in all of your posts...I think it is a good thing that you let people know what it is like to really have twins that have some issues along their way. As you found there was not a whole lot of information when you were looking for it. Maybe something like this will help someone else. Having a baby is not all about the fun times. Having a baby with issues is not all easy, and then you double that. We think of you often, and continue to pray for you and Mark and both of the boys.


Mark Rissberger said...

Thanks for leaving out the part where I (and half the room) got sprayed while trying to help him 'go'. It was definitely a 'highlight' that I could stand to forget. I'm just thankful that I was wearing glasses and had my mouth closed at the time.
(sniff, sniff) I swear I can still smell it sometimes.

Anonymous said...

Just read your update and wanted you to know that the down times are just as important as the up or good times. I am so grateful for all the updates you post. It helps me feel closer to you even though I am so far away. I love all of you very much. Wish I could be there to help.
Love Grandma

cfallone said...

Holli, I am crying!!! I can relate on so many levels. Mia just finished her 5th surgery and is likely going to have another fairly soon. I also know how you feel about writing on the down days too. It does help!!! We all understand. You are doing a phenominal job!!! Your love and strength just jump off the page as I read. Hang in there and call me anytime!!!! I'd love to chat.

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