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

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!

Love,

Todd, Leah, Cole, and Laurie

October 26, 2008

Good afternoon everyone! I'm sorry it has been so long since I last posted. Finding time to post is much harder now that I am at home (I sure am missing the second shift nurses about now!)

Last week was very busy, so I will try to catch you up. Laurie was discharged from Flowers Hospital in Dothan last Sunday afternoon. She was having fewer de-sats and heart rate drops after having the blood transfusion and IV antibiotics. The blood cultures after 48 hours were negative. However, she continued to have trouble taking a bottle due to upper respiratory congestion--either refusing to take the bottle or spitting up what she did take. We saw her pediatrician, Dr. Brown, on Tuesday and he started Laurie back on HMF (human milk fortifier) in order to increase her calorie intake without having to increase the amount of milk she takes--Laurie had only gained about 3 oz. in a week, up to 6 lbs. 5 oz. Dr. Brown also started Laurie on another antibiotic to hopefully help with congestion and encouraged us to continue using the humidifier.

Then on Wednesday, Mother, Mrs. Judy, Laurie, and I left at 7:00 a.m. for Birmingham for a follow-up ophthalmologist appointment. After Laurie's hospitalization, I called Dr. Carlo to see if he could see us while we were in Birmingham and he graciously agreed. We saw him at 11:00 a.m. and he recommended that we try feeding Laurie smaller amounts every 2 hours and agreed that her cold was still upper respiratory (her lungs sounded good). He also suggested that we get another humidifier with a control setting for the amount of humidity being released. He again reminded us of the importance of washing hands and everyone changing clothes before holding Laurie (Mother and Mrs. Judy have already brought an extra set of clothes to our house and Cole has never had so many baths!!!!). I felt much better just having Dr. Carlo look at Laurie!!! After that appointment we went back to the UAB townhouse, ate lunch, and met with the "oxygen man" to swap out oxygen tanks and get needed supplies. At 1:30 we left for Laurie's ophthalmologist appointment. If you have been keeping up with my blog, you know that ophthalmologist in Birmingham work on a totally different time clock than the rest of us and Wednesday was no exception. We finally saw Dr. Fiest and his report was O.K. The blood vessels that are growing back are still premature and the time frame for the Avastin injections is running out. So, Dr. Fiest wants to see Laurie back in two weeks and possibly do another round of Avastin injections or laser surgery. Needless to say, we are not out of the woods with her vision yet. After the eye appointment, we went back to the UAB townhouse to finish cleaning up and turn in all the keys. We also made a stop at Babies-R-Us for a new humidifier and made several stops to feed Laurie. We finally returned home at 10:00 p.m. Laurie did great for such a long day of traveling and appointments, but the rest of us were exhausted!!

This week we will go back to see Dr. Brown on Tuesday. Laurie's congestion does seem to be doing better, so maybe we can go back to 3 hour feedings. As you can imagine, two hour feedings leave very little time for sleep or anything else!!! We will go back to Birmingham on November 3rd to see Dr. Fiest and for a pulmonary appointment.

Thanks to all of you for continuing to keep up with Laurie's progress. God continues to bless our family with your support. Please continue to pray for Laurie's lung development and for her vision. Also, please pray for all four of us as we adjust to our new norm at home (working everyone's schedule around Laurie's feedings, monitor alarms going off at all hours, little sleep, confinement to the house, Cole having to share our attention, etc...)

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

October 18, 2008

Hello everyone from Flowers Hospital :( Most of you probably didn't know, but Todd and I had to bring Laurie to the ER at about 2:30 a.m. Friday morning. After 24 hours of having numerous de-sats and heart rate drops, especially during her feeds, I had called UAB and spoken with several of Laurie's nurses and doctors. We tried all their suggestions, including having to increase her oxygen levels, but Laurie seemed to be getting worse. After a very scary 12:30 a.m. feed, where Laurie dropped her sat level, heart rate, and began turning blue, we decided to come on to Dothan. A CBC showed that Laurie's crit level was low and she was in need of a blood transfusion. She also had terrible cough, congestion, and was very lethargic. Laurie's pediatrician was on call and talked with her doctors in Birmingham. They decided that the blood transfusion and IV antibiotics could be done here, but that she would be transferred back to Birmingham, if there were any changes for the worse. Thankfully, the transfusion and antibiotics seem to be working and Laurie is already doing much better. So far the blood cultures have not grown back anything and she will have to complete 48 hours of antibiotics before being discharged. This is all a painful reminder that Laurie is still very susceptible to infections. We know that as a micro-preemie, Laurie still has a way to go before she is out to the woods completely! Please continue to pray for Laurie's health and for her to grow stronger each day! We will keep you updated! Thanks for all you have done to support our family!

Love,
Todd, Leah, Cole, and Laurie