Saturday, November 29, 2008

November 29, 2008

Just some of the Crowe cousins!
Our little turkey--weighing 7lbs. 10 oz.!!!
Hi! I hope you all had a wonderful Thanksgiving! Although our Thanksgiving was very different from previous years with Todd taking Cole on Thursday to his grandmother's and me taking Cole on Friday to Aunt Laura's, we realize that we have so much to be thankful for this year! The last few months have been life changing! I have said many times that we had the closest to an "ideal" situation in a horrible circumstance that could be imagined. I witnessed many parents in similar situations who did not have same the love and support that we were so blessed with--I don't know how they made it day to day! We can never say thank you enough, but please know that this year, especially, we are counting our blessings!

We are thankful for our newest addition, Laurie, who is truly a miracle.
We are thankful for our son, Cole, who is curious, determined, and loving.
We are thankful for our parents who continue to give selflessly.
We are thankful for our siblings and their spouses, Kevin, Tammy, Emily, Gray, Laura, Ben, Katie and Jamie who continue to our rocks of support.
We are thankful for our nieces and nephews, Sarah, Addie, Emma, Lydia, Delcy, Jack, Taylor, Brooke, Dana, Jared, Haley, and Peyton who have shared their parents' time, their homes, and their toys with Cole over the last several months.
We are thankful for our grandmothers and numerous aunts, uncles, and cousins who have given so generously their time, money, and love.
We are thankful for our friends, new and old, who have opened their hearts and homes to us.
We are thankful for our church family who has offered prayer, after prayer, after prayer.
We are thankful for the many other churches who adopted and ministered to us.
We are thankful for the dedicated doctors, specialists, and nurses who have and continue to care for Laurie.
We are thankful for the countless friends, acquaintances, and strangers who have posted with words of encouragement.
And finally, we are thankful to the Great Physician who still heals, answers prayers, and loves unconditionally!!!

We are truly blessed beyond measure!
Todd, Leah, Cole, and Laurie

Saturday, November 22, 2008

November 22, 2008 6:45 p.m.

Hi everyone! I apologize for not posting in such a long time!! I keep hearing from family members who see you "out and about" that I need to post! I can't believe that Laurie and I have been home for over a month now! A month at home sure goes by faster than a month sitting at a sick child's bedside in the hospital!!! After being home for awhile, I am finally beginning to get pieces of "normalcy" back! I have enjoyed being able to visit Cole's classroom and have lunch with him, meet his teacher for a conference, spend an afternoon shopping with my sisters, and attending church! Isn't strange how we take for granted such seemingly insignificant things
in our lives!?!

Anyway, for what you all have been waiting update on Laurie! We continue to make weekly trips to her pediatrician, Dr. Brown. Last Monday, 11/17/08, we were only suppose to go for a weigh in, but ended up seeing Dr. Brown because Laurie had only gained 2 ounces in a week (she weighed 7 lbs. 5 oz. and was 19 1/2 inches long). We decided to take her off the HMF, human milk fortifier, since it upsets her tummy and just try increasing the amount of milk at each feeding. This has definitely helped her tummy trouble and we will see on Monday (11/24/08) if she has gained her weekly weight goal (she should be gaining 1/2 to 1 ounce daily). We also saw Dr. Fiest on Friday, 11/14/08, for a follow up to her last Avastin injection. After a long day trip to Birmingham, we left his office not knowing much more about her vision than before. I explained my frustrations to Dr. Brown and he referred us to a retinologist in Dothan for a consult (We are thankful for a pediatrician who is so helpful and attentive to every aspect of Laurie's health!). Dr. Thompson has treated older patients with macular degeneration with Avastin and is familiar with this treatment option in preemies. He examined Laurie's eyes and was very pleased with how she has responded to the treatments. He also provided me with valuable information and further questions to ask Dr. Fiest when we see him again on December 5, 2008. On Wednesday, two ladies with Early Intervention did a home visit and testing. Due to Laurie's vision and hearing concerns, the Alabama Institute for Deaf and Blind is the agency that will be handling her case. They will be back later in December to go over her Individualized Family Service Plan with Laurie's specific resources, supports, services and goals. Hopefully, they will be able to provide us with practical, everyday activities that we can do with Laurie to help her overall development!

This week we only have a routine check-up with Dr. Brown! Please continue to pray for Laurie's weight gain, lung development, vision, and hearing. Also, please pray for Chris and Amanda Martin who had preemie twins at UAB last weekend. Sadly, they lost one of their boys last night. I can't imagine the heartache they have tonight! Also, remember my dear friend Amy Sims, who after five months is still at UAB with Gabe. They still have a very long road ahead!

I will post Thanksgiving pictures later this week!

Love to all!
Todd, Leah, Cole, and Laurie

Thursday, November 6, 2008

November 6, 2008

Good afternoon! Laurie and I are enjoying a quiet day at home! I wanted to update everyone on her appointments from earlier this week. We saw Dr. Fiest, the ophthalmologist, Monday morning and the blood vessels in her right eye are growing normally. However, the left eye is not doing as well, so he did do another injection of Avastin in that eye. We will see him again on November 14, 2008. We left straight from that appointment and went to Children's Hospital for her BPD appointment. After having chest x-rays, lab work, and meeting with a nutritionist, respiratory therapists, and several nurses we finally saw Dr. Lorenzo, the pulmonologist (this is a different doctor than we were expecting, but we really liked him). He talked with us at length about Laurie's medications, oxygen support, feedings, and development and then made several changes. He increased her oxygen level to .25 liters (rather than .1) in hopes of keeping her oxygen saturation 93% or greater. If you remember we had been keeping her sats 85%-95%, but Dr. Lorenzo stated that at this point we could be doing damage to her heart with keeping her sats in the 80's. His office is also scheduling an appointment for us with cardiology just as a precaution. The Children's cardiologist group sends doctors to Dothan monthly, so hopefully we will be able to see the cardiologist there (we saw a cardiologist in Dothan several times with Cole when he was a baby with Kawasaki disease). He kept all Laurie's medicines the same, except for discontinuing the sodium. We will see Dr. Brown on Monday and do blood work to check her electrolytes again. Dr. Lorenzo also wants to increase to 2 packets of human milk fortifier (HMF) per feeding in order to increase her calorie intake and hopefully start putting on more weight. The faster she grows, the faster her lungs will begin healing (and get her off the oxygen)! They also are making a referral for Early Intervention, so we should be hearing from that soon. This will be another resource for helping us stay on top of Laurie's overall development.

On Tuesday, Laurie had her second Synagis shot and then we saw Dr. Gannon, the ENT, to check Laurie's hearing. Laurie did not pass the hearing screening in either ear again, but Dr. Gannon believes this could be due to her very small ear canals. He will see her again in four months and then refer us to Birmingham for an ABR if she does not pass at that time. We are continuing to learn the virtue of patience! Dr. Lorenzo reminded us that we must treat this process as a marathon, rather than a sprint! We continue to ask for your prayers for Laurie's overall development and health. We are also so grateful for how far God has brought her and for your continued support!

Love to all!
Todd, Leah, Cole, and Laurie

Saturday, November 1, 2008

November 1, 2008

Todd's Alabama football player and my Auburn cheerleader!

Laurie was tired out after our Halloween photo shoot!

Well, as you can see from the pictures we have had another busy week! Laurie turned 4 months old on Tuesday and we celebrated with a trip to see Dr. Brown. He was happy with her progress this week. Her congestion is much better and she is back on a 3 hour feeding schedule. She continues to gain ounces, weighing 6 lbs. 11 oz. on Tuesday!!! She is also having very few de-sat spells and is going for short periods of time with no oxygen! Another hearing screening was done with Laurie still not passing in her right ear, so we will see an ENT this coming Tuesday (11/4/08) for further testing.

On Thursday night Todd stayed home with Laurie and I was able to take Cole to the Fall Festival at his school. He had so much fun and I enjoyed getting to see many of you! It was so nice to get out of the house again (without going to a doctor's office)! Friday night, Cole suited up again for trick-or-treating with cousin, Jack and again today for the Fall Festival at Mrs. Judy's church. Needless to say, we have enough candy to last until Christmas!

Mother, Mrs. Judy, Laurie and I will go back to Birmingham on Monday for follow-up appointments with Dr. Fiest, the ophthalmologist, and the pulmonologist, Dr. Lyrene. Dr. Fiest will be checking to see if Laurie needs further treatment for her ROP (either another injection of Avastin or laser surgery). This will be our first time seeing Dr. Lyrene at the BPD (bronchopulmonlary dysplasia) clinic. We will be seeing him once a month for now, so that he can monitor Laurie's oxygen settings, medications, and treatments for BPD. Laurie will also have another chest x-ray to see how her lungs are progressing. On Tuesday, we will have two other appointments in Dothan. Laurie will have her monthly Synagis shot and will also see the ENT for her hearing. Please continue to pray for Laurie's lung development, vision, and hearing! Also, please pray for our travel safety to appointments this coming week! We are so thankful for your continued support!
Todd, Leah, Cole, and Laurie