Okay, so grab that cup of coffee. ummm maybe a christmas cookie too....or two....while you catch up about the boys. I apologize in advance because when it comes to the boys, I'm hardly ever at a loss for words....
The boys are doing well. We continue to go back and forth with feeding issues. Same story, except the baby changes. During the last couple of weeks Nicholas is taking his bottles with vigor and quite easy to feed. He's chugging 5-6 ounces without stopping at times. Alex on the other hand is fighting us every step of the way after about two ounces. He'd rather chat or play or lately try to get both of his fists in his mouth. I know well meaning friends and family say not to stress, that babies will eat when they are hungry but with our little ones it seems to not be the case. Alex can sleep all night long and wake up and still only want 2-3 ounces, then he won't have a wet diaper. His doctor gave us a guideline of roughly how many ounces the boys should be getting each day and Alex is no where near that during his "bad" days which unfortunately has been for about the last two weeks.
I'm not sure if this is partly a preemie thing or not but it does seem like we are constantly fighting one of the boys or the other at any given time to get enough ounces in them. I've talked with other preemie parents and it does seem to be a larger issue in general for many of us. I am wondering if the boys are starting to teethe and that may be part of the problem, Alex especially is constantly shoving his little hands in his mouth to chew lately. The last few days we are really trying everything to encourage him to eat better, such as distraction (sorry Mark but he really DOES love when I sing him country), either that or maybe he just keeps drinking to try to tune me out...hmmmm....anyway...doesn't matter the reason I guess. We're also trying a faster flow bottle so he doesn't have to work as hard but still get more in him and that seems to be working a bit as well.
The good news is that the boys are closely monitored for their weights and vital signs every week with home care nursing visits and they are both still gaining. Not as rigorous as we'd like but not losing ground either. I think the extra high calorie formula that they are still on is giving us a safeguard. Nicholas is 11 pounds, 6 ounces and his brother for now still does have the lead at 12 pounds, one ounce! I just can't believe they are 7 months old now. We look back at their first pictures and we are reminded again how incredibly far they've come.
The big news this week is Alex had his scan and measurements completed for his molding helmet. This is literally a helmet that he will wear to help re-shape his head. Because of that "bubble" that he had for so long, he really only preferred to lay on the other side of his head and this caused severe flattening on one side of his head and almost comes to a point in the back. His forehead is also pushed too forward due to this. Coming into the world three months early with his head still so malleable also didn't help. We are told that babies tolerate the helmet very well, and they have to wear it really 23 hours a day (one hour off to bathe, wash the helmet, etc.) We are told that it will be for a minimum of three months, possibly up to six months depending on how things go.
We were already pretty anxious about the thought of Alex needing this, but then came the discussion of his shunt and then my anxiety went way up. They were concerned with the fluid around Alex's shunt. Apparently they have worked with many babies with shunts but almost never see the fluid build up like Alex has. This gave me a lot of angst because I've already worried about this quite a bit. We've taken Alex back to his neurosurgeon three times since his new shunt was placed and thats our number one question to him every time, IS the shunt working properly, should we be concerned about the fluid, etc. He reassures us each time that it is doing what it needs to do just fine and that the reason the extra fluid is there is just because Alex had the temporary shunt first, which basically created another "space" for fluid to move around. He believes this will lessen as Alex grows and is not at all concerned about it.
Back to the helmet: They explained to us that NO part of the helmet can press down on the shunt track or it may cause complications with the shunt (basically blocking it off and the shunt not being able to work effectively). They have no problem carving out the back of the helmet along the shunt to give it the space needed, the issue becomes if the fluid varies at all. How do we know when they make the helmet if the fluid is at its maximum, making sure we give it enough space? We THINK that the fluid is relatively stable, but what if it changes? They stated that initially we will only let him wear the helmet for an hour, and then off for an hour to check for any redness or issues, and slowly work up. They also stressed that when the helmet arrives (in about two weeks) if they have ANY concerns about having him being able to wear it safely with the shunt, they will not give him it. Ofcourse then they said on a scale of 1-10 in head severity, Alex is about 7-8. So now I'm not sure what I'm more stressed about at this point, whether he gets the helmet, or whether he doesn't. ugh.
When Mark and I struggle with these "oh my gosh, are we doing the right thing(s) for our boys, are we advocating for the right things, are we advocating hard enough, what should we ease up on, what will THEY care about in the future and wish we would have done for them now?" All the things parents struggle with really, well these are the moments that I have to take myself down a little and remind myself we are not in this alone; God is lining up people in our lives like he always has that help guide us. A very pertinent example: I met a mom a couple months ago at an outing for moms with children with health issues, and special needs and I"m grateful that we still keep in touch. Well, it just so happens that she has a beautiful daughter who also has a shunt and also needed a helmet. Except when her helmet came in, they could not get it to fit where they were comfortable that it wouldn't impact the shunt. Our childrens stories are not exactly the same but long story short, she ended up needing to get a second opinion for her daughter's shunt in Syracuse and now has a plan to get the shunt replaced, and a new helmet. I don't think its a coincidence that I met this mom (or the other moms that night) and I keep that information tucked in the back of my mind. I will certainly take Alex to Syracuse (or wherever) to get a second opinion should we need to, and can even call on my friend to get started on a name should it come to that.
Right now we are comforted by the fact that besides the eating issues, he is very well. He is such a happy baby, babbling, smiling, alert, reaching for toys. He is not displaying any issues that would suggest his shunt is not working properly (these include extreme tiredness, throwing up, irritability). Otherwise we would not hesitate to push in a different direction. So for now, we will continue to take it one day at a time.
The other good news is that our babies are a little less drugged up!!! :) Both boys are off of one of their GI medications (reglan, which is the one that the FDA had black boxed and I was very stressed about). This was a medicine we had been giving to both boys every six hours since they were in the NICU and with our GI doctor's help, we weaned away one dose every week and now they are both off!!!! Its been two weeks now since they had their last dose and I am very excited and relieved about this!!!!
Also excellent news: We made a trip to the pulmonologist this week and Nicholas was discharged from the clinic!!!!! He is doing excellent and he is now off of his last pulmonary medication (another 4 times a day less medicine) and is doing great!!!! They said they ofcourse love to see him but don't want to see him anymore, ha,ha. They cautioned us to keep doing what we have been to keep the boys protected from colds/flus this winter to protect his lungs because that is when babies tend to have to go back on the meds and monitoring with them but knock on wood!!!! We reminded them ofcourse that as long as Alex has to keep coming, its a two for one deal with them, ha,ha.
Mark and I couldn't resist these shirts awhile back and just recently remembered we had them. This does bring up the question we get asked a lot. Are they identical? We go back and forth about this. During my pregnancy, the doctors stated they were identical, because they were sharing the same placenta instead of having two separate ones. However when we asked further, the specialist did say that there was a small chance that they started out having two placentas and they could have fused together making it look like only one on the ultrasounds. People are surprised to hear that we are still not entirely sure. The only way to be 100% sure is to pay several hundred dollars for a genetic test.
To be honest, we kind of like wondering still, and watching how they grow and change. Whether they continue to grow more alike or end up having many differences, their our babies, they certainly are and look like brothers. For now thats all we really feel the need to know :)
4 comments:
As I was reading your post, I wondered if you and Carleen had kept up after that meeting. If not, I was totally going to reconnect you. YAY FOR MOMMY GROUP!!!!!!!!! :) I hope to see you for another meeting soon!!!!
And ohmygoodness your boys are so handsome! I can't believe the change in them since we met. Amazing!! Keep up the good work, mama.
Annabelle had her shunt put in at birth last August. She would accumulate fluid under her skin around the base of her shunt valve. It was a constant source of stress for us. We asked every single doctor and nurse we had if the fluid was a concern and they all said "no". Some days the build up was big, other days small - it seemed to change hour by hour some days.
At about 8 months or so the build up disappeared and never came back. It never did cause any complications.
Hey Holli! I loved your post. I am always here and will always try to be a support. Our stories are not identical but they do overlap quite a bit. Besides their medical issues, the mom issues will always overlap. I loved what you said about trying to make the right decisions and predict what will be important to them and their future. It is SO true. Dave and I question that ALL the time!!!! What procedures should we put her through and would could we spare her yet still give her the best quality of life that we can. Mia will be having her 6th surgery in the next couple of weeks. AH!! We pray we are doing the right things.
The boys look GREAT! They don't even look like preemies. I think their weight is fantastic. Actually, we are also having a problem with Mia's weight. She has been fluctuating between 17 and 17.10 ounces since August.
As usual, your posts give me inspiration and a sense of calmness. Your writting is beautiful and I hope you are printing a hard copy for your boys (I haven't done that for Mia yet) :)
Hope to talk to you soon,
Carleen
Hey Holli - always so nice see the boys! Love those shirts - how cute! We miss you guys...can't wait to see you again.
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