Wednesday, December 8, 2010

It's almost Christmas....

Things have been kind of crazy around here since about the 16th of November... Analeigh had a cardiologist appointment that day that thankfully went very well. They did an EKG and said her heart looks GREAT! We don't have to go back unless the pulmonologist deems it necessary for some reason in the future.

Thanksgiving was a little stressful for me. The day started off badly with the neighbor's dog killing my cat, Screamer. My sister stepped outside to head over to my parents' house and saw him toting her in his mouth across my yard. We never saw her again so I can only assume he killed her. After all that commotion, I had to do baby girl's bath and trach care and get her dressed in her lil Baby's 1st Thanksgiving outfit (a job in and of itself) and then getting her across the street to my mom's was miserable. She didn't like the stroller at all and she was fussy most of the time we were there. We barely got her back home befoe it started raining outside and she, of course, protested the whole way. The funny thing is, as soon as she was back in her own room and her own bed, she was all smiles.

The 30th of November, we went and saw her ENT for the first time. He said everything with the trach is looking good and we're going to leave the size 4.0 Neo trach in for a while longer. We aren't scheduled to go back until the 1st of March at which point he will schedule an outpatient procedure at TCH to get pictures of her airway. We'll have a good idea of her progress then.

December 3rd we went and saw her pediatrician because she's been wheezing a lot lately. He figured it was just allergies so she went back on Proventil and it's seemed to make some difference. She got her flu and synagis shots and I was so proud of how well she did. She barely fussed when they did them and soon after it was like nothing ever happened. I gave her some ibproufen when we got home and she never even ran a fever or became irritated and fussy. We have to go back at the first of the year for the second flu shot and another synagis.

Coming up on December 20, we are scheduled to see her pulmonologist. I'm not sure if we're going to be able to keep the appointment because Medicaid decided to switch her from Traditional to another plan and it requires us to get a referral for every specialist appointment. Hopefully the switch was a mistake and we can get it corrected in time to see him. Otherwise, it will probably get pushed until after the first of the year.

On another note, I enrolled in classes at Lee today... starting Jan 18, I'll begin my semester of pre-requesites for their RN program. I signed up for Human Anatomy & Physiology I, Pharmacology, Intro to Psychology and Health Care Spanish. Should be an interesting semester. Hopefully we'll contine to get 24 hour nursing which will make my going to school much more managable. :)
 

Monday, November 8, 2010

My Baby Girl is Teething!!

Analeigh is growing up sooo fast!! Just the other day, ECI was over and she weighed 13.2 lbs and measured 23 inches long. She's 7 months old tomorrow and I can hardly believe it! She got her first taste of baby cereal in her 6 am bottle and she's teething!! I had noticed she'd been slobbering a lot lately and it looked like I could see some white in her gums but this morning the nurse said she could feel the tooth coming through her gums. WOW!! :)

I don't have much else in the way of exciting news except that I'm happy to report that baby girl has been on 1/4 of a liter of oxygen for the last few days and seems to be tolerating it fairly well. Her sats are not as good as they were on 1/2 liter but an adjustment period is to be expected. Initially I had hoped to have her completely weened off before we go back to see the pulmonologist on December 6, but I really don't think that's going to be possible now. When we changed her to 1/2 liter, she didn't even miss a beat but I can tell that with the 1/4 liter, it's a little bit more work for her. I sure don't want to rush it!

On another note, I am so excited about Thanksgiving! My mom, sister, niece and I went shopping this past Saturday to find the girls matching outfits for the holiday. It's crazy but they're both in 3-6m size now so it was easy just to get 2 of everything. They are going to be so cute, I just know it! :P

Monday, November 1, 2010

Progress

Analeigh finished her Amoxicillin today and now only has the tobramycin/albuterol mix left. She hardly ever needs to be suctioned anymore and we've been able to ween her pressure support on the vent down to 11 from 13. She also has been changed to 1/2 liter of oxygen and is doing well. When I get her supply shipment on Thursday, I will be getting a new oxygen concentrator that will allow me to ween her oxygen further but at a slower pace. I will work her down to 1/32 of a liter before completely taking her off of it in order to giver her more time to adjust.

Things got a little bumpy this past Saturday night because the home health agency waited until the last minute to let me know that we weren't going to have a nurse for the 7p - 7a shift. Michael and I had not prepared with a nap so the 12 hour shift was utterly exhausting. By the time our day nurse showed up at 7a on Sunday morning, I was ready to drop. I crawled into bed around 7:30am (Michael had already passed out on the couch an hour and a half before) and was dead to the world until 3:30pm.

We almost had the same problem again on Sunday night because the home health people had confused our nurse. One guy told her she had to work and then another came behind him and told her she didn't have to... so 7p came and went and no one showed up. I called the agency and they called her in but she didn't make it until around 9:30. I was relieved because I really don't think I could have handled it for two nights in a row.
Needless to say, our Halloween was very calm and uneventful. We watched a little television, ate some pizza and called it a night. :)

Tomorrow afternoon ECI is coming for their initial visit. I really don't know exactly what to expect because I don't have any experience in dealing with them. All I know is little bits and pieces the nurses have told me about their experience with them so I'm hoping it's going to be a positive and productive visit. From what I gather, they are supposed to help monitor Analeigh's skill development and teach me ways to work with her on her motor skills so she isn't too far behind. I guess tomorrow they will just observe her to see where she's at in terms of corrected versus actual age and what needs to be done.

Well guys, that's it for now. Thanks for reading and hope you all had a safe holiday... personally, I'm looking forward to Thanksgiving!!

Monday, October 25, 2010

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.

Thursday, October 14, 2010

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! :)

 

Tuesday, September 28, 2010

5 days and a sleep left!!

Things are really starting to come together now. Our home assessment was completed by the Care Group (medical supply company) today and we passed so that's a relief. I was worried with us just moving and the house not completely put together that it would affect us negatively, but since we have ample space for her equipment and supplies now, things went quite smoothly.

I spoke to the social worker today and the plan is this: Medical equipment and supplies will be delivered to our home on Thursday. Either Thursday or Friday we have to take the car seat to the hospital for Analeigh to complete a car seat challenge. This will determine whether or not she'll be able to be transported via car seat not only home but to future doctors' appointments as well. They'll put her in it after a feeding for an hour and a half while monitoring her sats. If she doesn't do well and a car bed is necessary, they'll send us home with one of those. Friday after Michael gets off work, we'll head up to the hospital to room in that night through Saturday night. We'll come home at some point Sunday for a little rest before heading back to the hospital Monday morning. She'll be discharged before noon (probably somewhere around 11am) and transported to our home via ambulance along with Clear Lake Regional's NICU transport team. We aren't clear yet on whether or not there will be room for us to ride in the ambulance with her or if we'll have to follow in our own vehicle. Once we arrive home, home health nursing will be waiting for us along with our Care Group rep to get her in the house and settled.

The social worker finally managed to find a pediatrician willing to take her with her special needs and her insurance... the only thing is, we'll have to drive all the way to Beaumont. On the upside though, she says he comes highly recommended. Thankfully, she'll have had her 6 month immunizations before leaving the hospital so we won't have to immediately take her to the doctor to get them. :)

I've been sick the last few days so I haven't been able to go see her... they don't like to let you in with a cough and runny nose. :( Michael has been going by himself but tonight we chose to stay home and get in some R&R before the craziness sets in. I called to check on her though and was told she's had a great day... been getting all the nurses to play with her! She's taking between 3-4 ounces per feeding every 3-4 hours, which is great. She weighs 11 lbs, 7.3 oz now. Our baby girl is getting big so fast! 

Okay boys and girls, that's all for now! :)

Saturday, September 25, 2010

9 More Days!!!

We're getting closer everyday to bring our sweet baby girl home.... 9 more days to go! Today is a busy day for us because we're moving into a bigger place in order to accommodate Analeigh's medical equipment and supplies as well as having an additional person in our home at all times. Where we are now just is just too small! The place we're moving to is next door to my parents, has a yard, a covered car port and 3 bedrooms. We'll have a much bigger living room and bigger bedrooms.

After the move this weekend, the Care Group will be coming to do their "home assessment" on Tuesday, then Thursday they'll deliver all the supplies and equipment she'll need. That Friday and Saturday night will be spent rooming in at the hospital in order to ensure we know how to provide all the care she requires (ie: preparing bottles, giving required medications, breathing treatments, suctioning, cleaning and changing her trach and operating the ventilator). Sunday will be our "day of rest" and then she'll come home sometime during the middle of the day on Monday, October 4th by ambulance.

It's exciting but I suppose a bit scary at the same time. It's not that I don't feel like I can handle her care, I just wonder if we really have everything we're going to need for her. I've tried to get things over the last several months as I thought of them, but from time to time someone mentions something I never even realized I needed. I guess all new moms encounter that, not just ones with "medically complex" babies like me. LOL. :) The dietician said they'll send me home with a case of formula and I know I have diapers and wipes to get started so I'm trying not to panic. 

Keep our family in your prayers, please. Pray for a smooth transition home and peace for not only us but her doctors and nurses as well. I know they are nervous about sending her home on the ventilator but they also know she needs the love and attention she'll get at home. Plus... she can't stay in the hospital forever. I know she has them all wrapped around her little finger but they've had her for 6 months... it's our turn now!!! :)