I am so sorry it has been so long since we have posted an update. It has been a little crazy as we adjust to our “new reality” of jumping between hospital and home. I wish I could say that it has been easier than I thought it would be, but in all honesty, it’s been harder. I think I’ll need to vent about that at some point, but for now, I’ll just give you the scoop on our little Brooklyn.
Overall, she is doing great! She has been out of the NICU since last weekend and has been hanging out on the neurology floor. Since her vitals were so good, they actually wanted to move her out of the NICU even sooner, but there were no beds available on the neuro floor. Now that we are finally here, we love it! The nurses on this floor are absolutely amazing. They all make a big fuss over our pretty little Brooklyn and take great care of her (and us too!). I am convinced now more than ever that nurses have a special place waiting for them in heaven. They make such a difference.
The best news is that so far, Brooklyn doesn’t need a shunt (a tube to drain the fluid from her brain). This means that although she was born with fluid in her brain and larger than normal ventricles, her head has remained relatively stable since her surgery. To check this, they are measuring her head daily and then sending her for ultrasounds a few times a week. Although it looks good so far, our neurosurgeon isn’t quite convinced that we are in the clear, so we are waiting it out until we get some hard evidence one way or the other. And, unfortunately, even if we do go home without a shunt, that doesn’t mean she might not need one down the road. With Spina Bifida, you literally need to take it day by day. We can celebrate meeting our milestones, but sometimes there are setbacks down the road. It’s a waiting game. But as my wise Grandma has said: When we get good news, we will praise God, and when we get not-so-good news, we will say, “He is in control.”
Brooklyn is eating extremely well and gaining weight. She is nursing when I am in the hospital with her and drinking bottles of breast milk when I can’t be there. Pumping has become a full-time job, but I am determined that Brooklyn will get the same benefits as her sisters did, even if she can’t get it directly from me all the time. So far, we are finding a way to make it happen, which makes this Mama very happy. She will have a swallow study with a speech therapist tomorrow, but that is more of a precautionary measure. Brooklyn has shown absolutely no problems sucking or swallowing. She latched on right away and barely spits up – even without being able to get burped!
Her urological tests have come back okay, but she does need to have a catheter four times day. She can go to the bathroom on her own, but some of her tests have shown that she’s not getting rid of it all, so we need to help her out so that she doesn’t get backed up. She doesn’t seem to mind it though and usually sleeps through the whole ordeal. That is, at least for now… ;)
Physical therapy and orthopedics keep trying to sneak in to see Brooklyn, but our neurosurgeon keeps pushing them off so we can focus on her back and her head. Jeff is anxious to get going on her therapy and casting, but until Brooklyn’s back is totally healed and they decide if/when she needs a shunt, we’ll just have to be patient.
Right now, they are categorizing Brooklyn at as an “L3” or “Lumbar 3,” which means she has some leg movement and above-average quadriceps and hip-flexor strength. She might be an “L4” (which is even better), but we aren’t sure if she has hamstring strength. Because her quads are much more developed than other babies her age, it’s hard to tell if the hamstrings are functioning or not. The same thing with her glutes, although our therapist thinks it looks like Brooklyn has a booty. ;) Only therapy and time will tell exactly what Brooklyn is capable of and what her muscles can do. Again…we have to wait and wait some more.
Our sweetheart’s legs and feet are little “twisty, twisty” as we like to say, but our therapist seems to think most of that will be corrected by casting (as opposed to surgery). We’ll have to wait until our neurosurgeon says “go” before we get specifics on this aspect of her care. Until then, we are just rubbing those piggy toes and praying over those legs every chance we get.
I wish I knew when they expect our peanut to come home, but we have no idea. One nurse speculated early next week, but we will wait to see. I admit, I’m guarding my heart on that one…unless I hear it from the neurosurgeon directly and she has discharge papers in hand, I am not going there. I just can’t take the possible heartbreak.
We are, however, working toward that goal. Jeff and I are taking a mandatory infant CPR class tonight, and I have been learning a lot from the nurses to prepare me for when we get home. I’ve learned how to feel for her soft spots (to make sure they are not bulging or filling up with fluid), how to measure her head (to check her ventricle size), how to change her diaper (her legs and surgery site make this an art form!), and how to catheterize her (yep, I did it...twice!).
Before she goes home, Jeff and I will have to stay overnight and care for her without the nurses’ help, and Brooklyn will have to pass a “car seat challenge.” This means she’ll have to be able to handle sitting in her car seat for the time it takes to drive to and from the hospital.
So that’s about it for now. We will be sure to update you if there are any new or big developments, but right now we are just waiting it out. Please continue to pray that Brooklyn’s head won’t swell and that her legs will have as much movement as possible. We also ask you to pray for our family as we try to adjust to lots of time apart. The girls are hanging in there, but it hasn’t been easy on them. Jeff and I are also emotionally and physically exhausted. Please pray for our strength!
Thank you all for your support these last 9 days. Jeff and I feel so blessed that our baby girl has such a loving community surrounding her. Much love to you all!
