We Have Been So Blessed!!

Things with Analeigh have been going pretty well since she's been home. We changed her trach on the 15th of this month and by that night I noticed she was needing to be suctioned... I suctioned her and discovered her secretions had a foul odor. Not even five minutes afterward, she sounded like she needed it again. By the next morning, the odor had become worse so I called her pediatrician. He wanted to do a tracheal culture before prescribing any meds so the nurse from home health brought the supplies and took the culture the following morning. Cultures are read at 24, 48 and 72 hours so I knew it would be a little while before we had results. I was upset with the pediatrician because I KNEW it was a bacterial infection and she should be put on antibiotics immediately... that's how it was done in the NICU. Anyway, we had an appointment with her pulmonologist on October 21st which proved to be much more helpful to us.

The pulmonologist prescribed Amoxicillin and a Tobramycin/Albuterol solution to be given via nebulizer. I had no problem getting the Amoxicillin filled but getting my hands on the Tobramycin proved to be an aggravating venture. The pediatrician's office finally called me back the day after we saw the pulmonologist to inform me that her tracheal culture indeed revealed an infection... HOWEVER, they had no plans of prescribing any medication since she was not runing a fever. I was furious! How could they allow a bacterial infection to continue developing and go untreated?? The last time she had an infection, it led to her being intubated again and another three months in the NICU. Thank GOD for the pulmonologist. We started her on the Amoxicillin almost immediately and have seen a great difference as a result. The blood that had showed up in her secretions disappeared and her appetite, mood and overall appearance improved. After some problems with the insurance/pharmacy, I finally managed to get her Tobramycin today and she's just had her first dose. Surely after the 10 day course of these antibiotics, she'll have managed to get rid of the infection completely.

On another subject... I read a woman's blog today about her child who has Trisomy 18 aka Edwards Syndrome. This is the presence of an extra 18th chromosome. It is defined as "incompatible with life" and only 5-10% of these babies live to see their first birthday. I read about all the things this precious little girl and her family have been though since her birth and I have to say... it really made me realize just how blessed we have been. I followed a link from her blog to that of another mother whose little girl had the same condition along with other medical problems and REALLY saw just how easy things have actually been for us. This little girl (who I will refer to as "M") just recently passed away and as I read about the pain her mother felt, it broke my heart. I can't even imagine going though all the surgeries this poor baby needed, the hope the heartbreak and then losing her.

When the doctor first told us that Analeigh needed a tracheostomy, I thought it was the end of the world. All I could think about was how I was going to be cheated of those "first words", belly laughs, so on and so forth. Knowing she could cry without us hearing her or be upset without anyone noticing and the possiblity of starting kindergarten with a trach was almost more than I could take. I cried the whole way home and all the way through sharing the news with Michael and my family. I was scared that taking care of her with her "special needs" would be more than I could handle. I knew there was really no option NOT to allow the surgery because otherwise she would be forced to gasp for air, be denied peaceful sleep and possibly die of respiratory failure.

After the surgery, we waited to see the "huge difference" the doctors promised us and it just didn't seem to be the case. We were getting so impatient and aggravated after so many months of treks back and forth to the hospital for what always seemed like bad news. It wasn't until a month or so afterward that we began seeing the real difference. She slept better, ate better and SMILED! I started learning from the nurses there at CLRMC and it wasn't long before I realized that I could handle it. It also helped to know I was going to have home health nurses 24 hours a day too. 

Since reading those blogs, I now realize that having a "trach baby" is such a blessing compared to what could've been. She could have had more complex problems that doctors consider to be "incompatible with life"... she could have required multiple surgeries and neverending doctors' appointments. She could even no longer be with us... THANK GOD for the miracle of her life! She will eventually have healthy lungs and a fully developed airway and no longer need the trachea or the ventilator. She might be a little behind according to her actual age, but she'll catch up. Most importantly, she'll LIVE! 

It's so great how when we start feeling sorry for ourselves or buried by our situations and circumstances, God shows us that we aren't alone and that there are other people out there whose situations and circumstances far outweigh our own. I spent too much time wondering why I was given the baby who had "special needs" and everyone around me had perfectly healthy newborns. Now I know that despite her "special needs", she is still the blessing God had in store for me. She may even be the one thing to show me what I'm supposed to do with my life. I now have plans to start nursing school in the Spring.. maybe to become a Neonatal Nurse. I would have never chosen that profession in a million years but thanks to her, I know I can do it with the proper education and training. 

So, just a word from the newly wise.... if you start feeling sorry for yourself, just turn on your computer and search for blogs about women with "medically complex" children. It will break your heart but it will teach you that no matter how bad it is for you, it could be worse.

Falling Into Place

     Our baby girl finally made it home on Monday, October 4th around noon. She was a mere 5 days away from being 6 months old. I can't even explain the joy we felt to finally see her in her own crib that sat empty in our home for so long. Things have not really been quite as hectic as I first anticipated. Analeigh has seemed to adjust to home life pretty well so far. We had our first pediatrician's appointment only 2 days after getting home but since then we've been able to stay here. The nurses from home health have been wonderful thus far and as expected, she has them all wrapped around her little fingers.
     I've been keeping myself busy around the house with cooking, cleaning, washing and sterilizing bottles, mixing formula and doing laundry. I often help the nurses with Analeigh's baths and trach care because I feel it's very important that I not become too dependent on their presence. You never really know when Medicaid might decide they no longer want to pay for 24 hour care anymore. I am quite confident I could handle it without their help but it's definitely a lot of work for one person and I can't be awake all day everyday. 
     She's doing some things now that are new and I'm so excited. One of them is this thing where she takes her paci out of her mouth, holds it in her hand for a minute and then throws it toward the foot of her crib. Sometimes she just kind of drops it next to her side but usually she gets a kick out of throwing it. She also will now stand up in your lap with assistance. She'll straighten her legs out and then bounce a little. It's so cute!
     All the nurses seem to be very amazed that she takes all her feeds by bottle and that it's very rare that she needs to be suctioned. Apparently all their other experience with vent/trach babies is frequent suctioning and G-buttons or NG tubes. She's still on a rate of 10 bpm from the ventilator but her sats stay in the 95-100 range for the most part (she does tend to dip into the 80's when she's throwing a fit). I'm hoping that after our pulmonologist appointment next Thursday, they'll let us start weening... I don't really care where we start as long as we start a weening process. It's not that I want to rush her, I just feel like she's doing SO well that maybe we could afford to make a tiny change or two at a time until eventually she won't need the vent or the trach anymore.
     I do so appreciate every bit of support from everyone who has been involved in our lives and Analeigh's the last 6 months. We couldn't have come this far without the nurses at Clear Lake Regional NICU, our social worker Georgia and our friends and family. We have been so blessed by so many with kind hearts! 

 Michael and I in the lobby of Clear Lake Regional Medical Center on October 4, 2010 to take our baby girl home for the first time at nearly 6 months old.

 Heading out of the NICU to the service elevators.

 Going to the ambulance waiting to take us home. This was the first time Analeigh had ever seen the outdoors.

 Dad, Me and Georgia waving goodbye to the hospital after Analeigh was loaded.

 Getting everything ready to place baby girl in her own crib in her own room for the first time.

 Analeigh all dressed and ready for her first pediatrician's visit on October 6, 2010.

 Analeigh at her pediatrician's office... she got warm so we took off a layer. lol

 Home on her play mat looking all cute.

     Daddy feeding Analeigh her 6pm bottle - Oct 13, 2010.

     I'll try to post a little more often but it's just been so great not having to drive an hour away everyday to see our baby girl and I'm enjoying every minute! Doing that mommy thing is so nice! :)