March 3, 2009

Laurie's 1st Valentine's Day!!

Laurie loves playing on her mat and is learning to reach for her toys!

March 1, 2009--Cole and Laurie enjoy watching their 1st snowfall!!!

Hello everyone! We celebrated Laurie's 8 month birthday this past Saturday!!! She continues to progress, but we have had to slow down the weaning of her oxygen. She did well coming off the diuretics, but when we went for the audiologist appointment on February 11, 2009 we learned that she had fluid in both ears. This caused some discrepancies with the ABR readings, so we will be retest later this month. A few days after the appointment Laurie began having trouble sleeping, eating, coughing, and having more frequent de-sat spells. We were afraid this was due to the weaning of her diuretics. The pulmonologist started Laurie on a steroid and said to hold off on weaning her oxygen for two weeks. After several fussy, irritable days, we saw her pediatrician and discovered the fluid in her ears had developed into ear infections. So we also started on an antibiotic. During this time Laurie also had her monthly synagis shot and blood work. She weighed 11 lbs. 15 oz. on February 23, 2009.

This week we have completed all medications and have begun the weaning process again. Laurie is doing well with 30 minute intervals off the oxygen. We will steadily increase the time periods later this week. We will also see Dr. Thompson, the retinologist, on Thursday this week. Please pray that we are able to hold Laurie for the examination (without sedation) and that normal blood vessels have completed developing in her left eye.

Thankfully, our doctor appointments are slowing down. Later this month, we have her regular synagis shot appointment, second ABR appointment in Birmingham, and her 9 month check-up. Thanks for continuing to check in and pray for Laurie! Hope you enjoy the new pictures!

Love,

Todd, Leah, Cole, and Laurie

February 5, 2009

Laurie loves her spinning light that Miss Susie with AIDB brought!

She also likes sitting up in her "Bumbo" chair!

Hello everyone! Sorry it's been so long since I last posted--I hear many of you are anxious for an update. January was a month filled with doctor appointments and we received encouraging reports at most of them.

On January 12, 2009 we saw a pediatric cardiologist from Birmingham in the Dothan office. This was just to check Laurie's heart to make sure there was no damage from her extended time on oxygen. All reports returned normal.

On January 26, 2009 we returned to Birmingham to see the pulmonologist. We are currently working on a plan to wean Laurie off the oxygen. The first step (we are currently doing) is to slowly wean her from her medications. Then we will attempt taking her off the oxygen for short periods of time and steadily increasing the time, until she only has oxygen during naps and night time sleeping. We should be able to get to this point by the end of March or the first of April. We also saw a nutritionist while in Birmingham and have started feeding Laurie cereal. She currently weighs 10 lbs. 12 oz.!

We also saw an audiologist, retinologist, and had several routine visits to the pediatrician's office in January. We will be doing further testing on Laurie's high frequency hearing with an audiologist in Birmingham next week. This is the area of the preliminary screening that she did not pass. The retinologist reports that there is still an area of Laurie's left eye where no blood vessels have developed. We will see him again in a few weeks to continue monitoring this area. At this time the right eye continues to develop normally. Please pray for normal blood vessels to begin growing in Laurie's left eye. At her pediatrician visits Laurie received her monthly synagis shot and flu shots. Dr. Brown is pleased with her overall development. She is rolling over from her tummy to her back, reaching for toys, and smiling when her big brother makes funny faces for her!!! Cole is so good with Laurie and loves entertaining her!!!

Hope you enjoy the latest pictures! Thanks for your continued love, support, and prayers!

Love,

Todd, Leah, Cole, and Laurie

January 10, 2008

Cole enjoyed opening his and Laurie's presents!!

Hello everyone! I hope you all had a wonderful Christmas! We had a very special Christmas at home with Laurie. It's hard to believe that she was discharged three months ago today --she has made so much progress since then! Todd and Cole returned to work and school this week, while Laurie and I spent the week at doctor appointments. Here is a quick update!

On Tuesday, we saw Laurie's pediatrician in Dothan for her 6 month check-up. She weighed

9 lbs. 8 oz. and was 22 inches long (she is now double her birth length)! Laurie also had her 6 month shots and a flu shot. Dr. Brown is happy with her growth and development.

On Wednesday, we went to Birmingham for a follow-up appointment with Dr. Feist, the ophthalmologist. Laurie's right eye is developing normally, but there is still an area of her left eye where no blood vessels have grown. Dr. Feist does not believe that the left eye needs further treatment at this time, but wants to continue watching the area. He felt comfortable referring Laurie to a retinologist in Dothan to continue monitoring this area in her left eye in order to help limit trips to Birmingham. However, we will probably go back to Dr. Feist if treatment is needed later. We will see Dr. Thompson in Dothan in three weeks. After her eye appointment, we took Laurie back to the RNICU and CCN units at UAB to visit her nurses, therapists, and doctors. It was wonderful to see everyone who took such great care of Laurie during her first months of life! Todd and I will always be thankful for those who cared for and loved Laurie while she was hospitalized. That evening we also saw my friend, Amy Sims, who was also at UAB while we were there and another one of Laurie's night shift nurses. We enjoyed the time we able to catch-up with friends!

Then on Thursday, we took Laurie to the Newborn Follow-Up Clinic. This is a clinic for babies who had extremely low birth weights and other high-risk conditions. We saw a team, consisting of a developmental pediatrician, developmental therapist, nutritionist, and audiologist, who specialize in the care of premature babies. The pediatrician was very happy with Laurie's growth and was able to answer questions about developmental milestones and feeding. The therapist did lots of physical tests and gave us several activities/exercises to do with Laurie to help with rolling over, head and trunk control, and her ability to bear weight on her arms. The nutritionist discussed when to begin cereal and other options for helping Laurie continue to gain weight daily. Finally, the audiologist repeated the hearing screening and Laurie passed for the first time!!! The screening did show there is a loss at high frequency levels in both ears. We will do further testing to determine the degree and further options. Overall, we were very pleased with Laurie's development and it appears that she on target for her "adjusted age" of almost three months. We will go back to this clinic in May. Although the trip was long and very busy, we got good reports and enjoyed seeing all our Birmingham friends!!!

Next week, we see the cardiologist, go for her monthly synagis shot, and have an appointment with Early Intervention. Please continue to pray for Laurie's growth and for all four of us as we continue to make adjustments at home! Also, please continue to remember Josh and Amy Sims as they continue to cope with the loss of their baby, Gabe, who passed away December 26, 2008.

Hope you all have a great week!

Love,

Todd, Leah, Cole, and Laurie

December 23, 2008

Well, I can't believe that weeks have passed since I last posted--time passes much faster now that I am back home. December has been a slow month of doctor appointments for Laurie. However, we will make up for it in January with six appointments already scheduled and three of those being in Birmingham!

On December 5, 2008, Todd and I took Laurie back to Dr. Feist, the ophthalmologist. We got a good report that Laurie's vessels are continuing to grow and no further treatment was needed at the time. We will see him again on January 7, 2009 to see how her eye development is progressing. I also met with the ladies from Early Intervention this month to write Laurie's family plan. We established several goals for Laurie, such as focusing on and tracking objects, grasping and holding objects, etc... They will be coming once a month to work with Laurie. Today Laurie and I went to Dothan to the pediatrician's office for a weigh in. This was a another "first" for the two of us as we made the trip by ourselves! It was an uneventful trip--the kind we like! In the past, someone has always gone with us to "watch" the monitor, but Laurie has been having so few de-sat spells that I decided we could make the trip on our own! Laurie usually does well riding and has only had one "bad spell" in car since bringing her home from the hospital and over the last few months I have become much more comfortable getting her in and out with all her wires! Laurie weighed 8 lbs. 12 oz. today! We were hoping that she would have gained more, but every ounce helps!

Laurie's unique personality has really been "coming out" over the last month. She is smiling, cooing, and loves "looking" at the Christmas tree lights--I believe that she can SEE them! Although Laurie has made lots of progress, we will still be keeping her home for Christmas. Like at Thanksgiving, Todd and I will take Cole to grandparents' houses and the other will stay home with Laurie. This small sacrifice for Laurie's health is worth making because we finally have TWO stockings hanging on the mantel this year! We are truly blessed! Thanks for your continued prayers and for continuing to check-in on Laurie!

Merry Christmas!

Todd, Leah, Cole, and Laurie

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!

Love,

Todd, Leah, Cole, and Laurie

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 for...an 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

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