Archives for 2010

As most of you know, we are home!! As in, all 5 of us are now under one roof. I apologize for not posting the last several weeks, but, honestly, we have been busy being a family. 🙂

I also admit that these last several weeks have left me with a lot of raw emotion I am still working through. When I decided to start writing about Brooklyn and our journey, I made a promise to myself and to God that I would only write when I felt lead to do so. I didn’t want this to be contrived or sugar-coated. I didn’t want to put on a show or write what I thought people wanted to hear. I wanted to be honest and share what God wanted me to share when He wanted me to share it. (Got all that?!)

So I haven’t written. But that is about to change. God revealed a lot to me today, and I am encouraged to share again.

Because it has been a few weeks, there is a lot to tell, so I think I’m going to do a little “mini series” on how God has answered our prayers. Brooklyn is truly a testament to His power.

So stay tuned the next few days for updates on our little rock star and all that God has done because of YOUR prayers.

So good to be home again!

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!

Hi there everyone!

Just a real quick update to let you know that Brooklyn’s surgery was a total success, and she is doing great! The neurosurgeon said she lost very little blood and that the surgery went about as smoothly as it could go. Praise God!

She slept peacefully last night, and today they will finally get to feed her some of my milk. Because she was having surgery, they were only able to give her sugar water and IVs. Now comes the good stuff!!! I’m not sure when I’ll be able to nurse her myself, but I am pumping as much as I can in the meantime. Of course, the most important thing is that she is getting my milk, but I do pray that I get to nurse her soon. My heart is aching for that bond so very much.

My OB is supposed to come in first thing this morning to authroize discharge, and I CAN’T WAIT!!! I am so excited to get to Children’s and see my little trooper. God (and your prayers!) got me through yesterday’s separation, but I am MORE than ready to move on from that and get to lovin’ on my girl!

I do have to say it’s been really cool to see Jeff form such a strong bond with Brooklyn. I can hear it in his voice…he is totally and completely in love and is just soaking in all this Daddy time. He told me yesterday how she likes to be soothed, and I could just feel the pride oozing through the phone. Boy do I love that man…

Our next milestone is seeing how Brooklyn’s body responds to the surgery. There was a small tear in the membrane surroudning her defect, which means fluid had been leaking out when she was in my womb. Now that we’ve closed that tear, as well as the open defect itself, there is nowhere for the fluid to escape. It will build up as her body tries to find a way to absorb it, and depending on how that goes, a shunt may or may not be needed.

However, because Brooklyn’s ventricles were already measuring big (which means she already had fluid build-up in her head before the surgery), a shunt is looking like a very real possibility. This is not shocking news, but we are still hopeful God will find a way to absorb the fluid. Pray, pray, pray!

Jeff did meet with an orthopedic surgeron for a little while yesterday, and we got some AWESOME news that I just have to share. When Brooklyn was born, one of her legs was completely straight with no bend at the knee. This wasn’t a total surprise since several of our ultrasound photos showed this; however, inititally they thought that this meant her bones were actually fused together, which would mean she would never have bending in her one leg. Of course, this was hard to hear and challenged the possibility of her walking successfully in the future.

BUT…after the orthopedic surgeon evaluated her yesterday, he was able to reposition her legs and massage the area and HER KNEE BENT! Testing also showed that she has “good muscle tone” and strong blood flow in BOTH of her legs. Can I get an AMEN?!!!! 🙂 Needless to say, we are all elated and beyond thankful. God is so awesome!

She will still need xrays of her legs to give us more information, but right now, the focus is on her back and her head. Any casting or orthopedic surgery will most likley happen after she is home with us. They think she’ll be able to come home in 2-3 weeks — which is way too long for this mama — but is what we had expected all along. Just pray that she heals quickly so that we don’t have to add to that timeframe!

So that’s it for now. So much for my “quick” update. 😉 I’ll post some more photos soon, but if you can excuse me…I AM GOING TO SEE MY GIRL!!!!