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

October 14, 2008

Good afternoon everyone! It is so great to be posting from home!! I just wanted to add some pictures from Saturday's homecoming celebration. Todd, Mother, and I took Laurie to her first pediatrician appointment this mornig. It took all three of us to get a preemie baby and all her oxygen "stuff" into the doctor's office. We are still very slow moving with everything and learning the best way to travel with Laurie's equipment. We decided to change Laurie's feeding schedule back to every three hours to help with her breathing (not to tire her out so quickly). Dr. Carlo had also recommended this yesterday when he called to check on Laurie. He is such a special doctor--telling me that he would be out of the country until Sunday, but to e-mail with questions after our appointment today, if we needed him! He will be excited to learn that Laurie has continued to gain weight since leaving the hospital, weighing 6 lbs. 2 oz. today. Next week, we will have another pediatricain appointment in Dothan and an ophthalmologist appointment in Birmingham. So much for staying at home!!! Thanks for your continued prayers as we adjust to all being home together!

Love,

Todd, Leah, Cole, and Laurie

October 12, 2008

Laurie getting a nap before discharge!
Leaving the hospital!!!!!
As I arrive home, I'm sating 97!!!

My family just looking at me through the window!

Hello everyone! Sorry, I have not posted in a few days, but we have not had a moment to stop since last Thursday! Todd and I went over to the hospital Thursday morning to feed Laurie her 8:00 a.m. bottle and were overwhelmed by the numerous meetings/trainings we had to complete before rooming in with Laurie that night. After a crazy day, we spent our last night in the hospital with Laurie in a very, very small room with a very, very, loud pulse ox monitor!!! Laurie did great---Todd and I were awake all night jumping up to check her with every "ding" of her pulse oximeter!!! We could not believe it when we were ready for discharge on Friday by 10:30 a.m.--they were ready to get rid of us and we were ready to go!!! As we left the hospital through the same doors I entered by ambulance three and half long months ago, I thanked God for allowing me to leave with my beautiful, healthy baby girl---I wasn't so sure that would be the outcome when I entered!!!

After spending Friday afternoon packing, we left Birmingham at about 1:30 p.m. (between Laurie's feedings--she continues to make our schedule!). We are also learning the best way of traveling with Laurie and all of her wires, oxygen, and monitor, but you can see from the picture Laurie didn't mind the ride home!

We were welcomed home by a crowd of family wearing pink in Laurie's honor!!!! We are truly blessed with a wonderful family who has been with us every step of the way on this long journey and who continue to amaze us with their support. They all came Saturday to celebrate Laurie's arrival even though they knew that they could only look at her through the front window!!!

We decided to wait and surprise Cole with Laurie's homecoming. As I held Laurie up through the car window, he screamed "Laurie's here"!!! When we got inside the house he asked us, "Is Laurie going to get to spend the night?" He was soooo excited to learn that she was going to get to spend every night at home with us now!! But, I don't think he really believes it--he has not wanted to leave her side! What a special homecoming it was!!!!

I will try to post more pictures of Saturday as I get them from family members! Thanks again to all of you who have continued to follow Laurie's progess! We realize that we would not have made it through this ordeal without your prayers! I will continue to keep you updated and post pictures as Laurie grows!

Love to all!

Todd, Leah, Cole and Laurie

October 8, 2008 5:15 p.m.

Hello everyone! We have had a quiet, rainy day here in Birmingham. Late yesterday afternoon the doctors changed Laurie's feeding schedule to 65 cc every 4 hours! This will help so much once we are at home. Laurie also continues to gain weight and weighed 5 lbs. 12 oz. last night. She is now 19 inches long. I spent the afternoon packing and making phone calls. Although the plan is to be discharged on Friday, it seems we will continue to make trips back and forth for follow up appointments. Laurie and I can't wait for Daddy and Nana to get here tonight! We are all getting very excited about coming home! Thanks for your continued love, support, and prayers!

Love,
Todd, Leah, Cole, and Laurie

October 7, 2008 5:15 p.m.

Hello everyone! Laurie has had a quiet day and seems to be doing very well with her new oxygen settings--very few de-sats. Her regular nurse practitioner was not here today, so we are still working out all the details of coming home. Todd and Mom will coming up tomorrow night, while Mrs. Judy does "Cole duty" back home. On Thursday, the three of us will meet with pharmacy and be learning how to work Laurie's oxygen at home. Then Todd, Laurie, and I will room in together at the hospital to try it on our own! If everything goes well, we should be discharged on Friday! We are still not sure about the weekend plans and when we will be coming home!?! As usual Laurie will be calling the shots!!! While Laurie rested today, I spent the afternoon shopping for the essentials needed to bring a baby home-diapers, wipes, bottles etc... It is hard to believe that we are finally to that point! Please continue to pray for us during this new transition period and for travel safety as Todd and Mom come to Birmingham tomorrow!

Love,
Todd, Leah, Cole, and Laurie

October 6, 2008 5:15 pm (101 days in the hospital)

We've graduated to a "big tub"!

Good afternoon! Laurie and I are spending another day waiting on the ophthalmologist! He put in an order for her eyes to be dilated at 10:30 am and stated that he would be here within the hour, but it is now 3:30 pm! Lots of you ask what I do all day and this is it…sit and wait!!! Laurie did gain some more ounces over the weekend and now weighs 5 lbs. 10 oz. Her nurse practitioner has changed her oxygen setting today to .1 liter @ 100%. These are the settings that we will have to be on when we go home. This will give us a few days to see how Laurie adjusts to the new settings.

Many of you have been asking about when we will be bringing Laurie home and I have mentioned this possibility in a few posts. This is a complex question for the doctors and for us! Other than still requiring oxygen to help her breathe, Laurie has met all the other criteria for discharge (she is in an open crib, continuing to gain weight, taking all her feeds with a bottle). In most cases like Laurie’s the doctors, would just discharge the baby with oxygen, follow up with a pulmonary doctor, and eventually discontinue the oxygen support when no longer needed. However, when a baby is discharged on oxygen, the oxygen percentage must be set at 100%. There is no way of controlling the percentage of oxygen being given. Yet, with Laurie’s ROP eye condition we are trying to minimize the amount of oxygen she receives in hopes that the oxygen will not further harm her eyes. We have been trying for the last week to wean Laurie’s oxygen percentage, but she seems to be “stuck” at 30% on 1 liter. Although Todd and I are eager to bring Laurie home we must do what is best for Laurie’s health. Also, coming home with oxygen will require much more attention, which could be extremely difficult for a five year old who has not had his mother at home for three months. Having said all of this, there is no way to predict how long it could take Laurie to come off the oxygen and we cannot stay in Birmingham indefinitely!

I realize it would seem that bringing Laurie home would be an easy decision; however it is also very complicated. After three months of becoming dependent on watching monitors and having nurses and doctors who can be at Laurie’s bedside at a moments notice, it is very difficult to let go of that security. The thought of traveling three hours home with Laurie sitting in a car seat is worrisome enough. Todd and I have already decided that once discharged we will stay at the UAB townhouse with Laurie a few days in order to be close to the hospital. We are looking at coming home this weekend or at the first of the next week!!!!

Once at home, Laurie and I will continue to be on “lock down” until at least spring. After being in a sterile, hospital environment all of her life, Laurie will be very susceptible to germs and infections. This is especially troublesome since Laurie will be coming home at the beginning of the cold/flu season. Laurie has already had her first synagis shot to help prevent RSV. Respiratory Syncytial Virus (RSV) is a virus that causes a severe chest cold and wheezing. It can be detrimental to preemies! Therefore, we will have to be extremely cautious with Laurie once at home. She will continue to have a RSV shot once monthly from now until April. Although we are ready to be able to “show off” our little miracle, it will be several months before we can get her out. We will also have to limit guests coming into the house in order to decrease the likelihood of infections. As you can imagine this is also very scary with Cole bringing in germs from school. But, he has already learned the importance of scrubbing when entering the NICU. Todd did not even come into the nursery on Sunday due to having a sinus infection! The doctors have also advised that Todd and Cole change clothes and scrub immediately when getting home before touching Laurie. So, although we will be home, our lives will not be back to “normal” (we’re not even sure what that means at this point).

You all have been so supportive during this long and challenging ordeal. Your prayers have sustained us and helped Laurie get to the point of coming home! We are so thankful! Since we will not be able to get out once at home, I will continue to update the blog with Laurie’s progress and pictures. I’m sure that I will not be able to do this everyday, but will try to post 2-3 times a week. Thanks for continuing to check in on Laurie and please continue to pray as we take the next step of this long journey!

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

October 3, 2008 2:20 p.m.

Happy Friday! We are having another good day with not a lot of changes. Laurie continues her bottle feedings and weighed 5 lbs. 5 oz. last night. We still have not been able to wean her oxygen level any further. We are also still waiting on the ophthalmologist to come to re-examine her eyes. Hopefully, Todd and I will be able to get some answers and make plans for coming home over the weekend. Please pray for travel safety as Todd comes to Birmingham tonight.
I will post again on Monday! Have a great weekend!

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

October 2, 2008 3:05 pm

Hi! Still not a lot of changes from here in the CCN! We have had another quiet day of waiting on doctors... the ophthalmologist did not come yesterday, but hopefully we will see him today! We are not only anxious to see how Laurie's eyes are improving, but would like to get his opinion on her going home with 100% oxygen. In the meantime, we have spent today trying to wean Laurie down from 30% oxygen, but she is not having it!!! However, she has been tolerating the increase to 50 cc with her bottle feedings and remained 5 lbs. 3 oz. last night. Mom also attended the discharge class last night, so we have all now been trained on caring for Laurie at home, RSV, and CPR! She left today after lunch heading back to Dothan to see our newest baby! Please continue to pray for our family as we make decisions and plans for coming home!

Love,
Todd, Leah, Cole, and Laurie

October 1, 2008 7:45 pm

Gray, Emily, Lydia, and Delcy Harrison!

Laurie is "tickled pink" over Delcy's arrival!

What an exciting day! Laurie is proud to announce the arrival of her cousin, Delcy Anne Harrison, born this morning at 7:48 a.m. Delcy weighs 6 lbs. 7 oz and is 19 inches long. Proud parents are Gray and Emily (Crowe) Harrison and big sister, Lydia. Although Delcy is a little bigger, Laurie is no longer the "baby" in the family!! Can't hold on to that title for very long in the Crowe family!! Yet, we seem to have two very impatient little girls on our hands (Emily was to be induced on November 4, 2008). Nana (Mom) decided to go ahead and come to Birmingham for the discharge class tonight, but will be heading back home tomorrow! Please pray for Gray, Emily, Lydia and Delcy and for travel safety as Mom goes home tomorrow! Praise God for another beautiful, healthy baby!

Laurie has not had many changes with her care plan today. They did increase her feeds to 50 cc every 3 hours. She gained weight last night, weighing 5 lbs. 3 oz. We are also still waiting for the ophthalmologist to re-exam Laurie's eyes. After talking with the ophthalmologist, we will make further decisions about the posibility of Laurie coming home with oxygen. This is not the ideal situation, as she would have to come home on 100% oxygen (not good for her ROP). However, she is not tolerating us trying to wean her oxygen level past 30% very well. Hopefully, by this weekend the doctors, Todd, and I can make a plan for when and how is the best option for coming home! Please pray for wisdom as we make these decisions, not only for what is best for Laurie, but also for Cole. Thanks again for your love and support!

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

September 30, 2008

Hello everyone! I am posting today while sitting at Laurie's bedside. She is now sleeping after enjoying her 3:30 bottle. There have not been any changes with Laurie's care plan today. Although she did gain a few grams last night, her weight stayed at 5 lbs. 1 oz. Laurie's oxygen has remained at about 30% on 1 liter with the nasal canula. She continues to have a few de-sats, but has not had any bradys since coming off the aminophylline last week. We are continuing to try weaning her off the nasal canual, otherwise Laurie is ready to come home! Mrs. Judy and I have attended the discharge class and Mom will be here tomorrow to attend the class. Although we are getting very excited about bringing Laurie home, we would love to be able to leave without any oxygen support (so we are probably still looking at another week or two)! Please continue to pray for Laurie's vision, hearing, and breathing!

Love,
Todd, Leah, Cole, and Laurie

September 29, 2008 7:40 pm

Cole and Daddy playing football!

Daddy holds Laurie on her 3 month birthday!
6-28-08

Good evening! Laurie and I have had another good day in Birmingham! We enjoyed having Todd, Cole, and MeMa here with us over the weekend (although Cole was not able to go in and see Laurie because he continues to have sinus and allergy problems)! As you can see from the pictures we were able to take Cole to a playground, so the boys could play a little football! Laurie has not had any changes in her care plan. She continues to take her bottle feedings of 45 cc every 3 hours. She lost an ounce last night, weighing 5 lbs. 1 oz. Now our goal is to get Laurie breathing without the nasal canula. She is so close, but often just needs the stimulation of the oxygen flow provided by the canula. We are trying to keep her on as little oxygen as possible, so not to cause any more damage to her eyes. The ophthalmologist will also be back this week to continue monitoring her. Thanks for your continued prayers and support! Hope you all have a great week!

Love,
Todd, Leah, Cole, and Laurie

September 26, 2008 3:20 p.m.

I'm a big girl now! 5 pounds 2 ounces

Happy Friday! Laurie continues to sleep and grow as we wait for Todd, Cole, and Mema to arrive! Last night she weighed 5 lbs. 2 oz. The doctors have not made any changes in Laurie's care plan today. The audiologist came to do a hearing exam on Laurie today and she did not pass in either ear. This means that she will have to have further testing done within the next month. Laurie does respond to voices and noises around her, but further testing will determine the degree of hearing loss. Again, being on the oxygen for such a long period of time and being born so prematurely are going to be contributing factors to Laurie's growth and development over the next few years. However, we know that God continues to answer our prayers and is watching over Laurie! Please continue to pray for Laurie's lungs, eyes and hearing! I hope you all have a wonderful weekend! I'll post again on Monday!

Love,
Todd, Leah, Cole, and Laurie

September 25, 2008 5:30 p.m.

Hello everyone! We received wonderful news last night--the Avastin injections have stopped the progression of ROP in Laurie's eyes! The eye doctor will be back next week to continue monitoring her condition and hopefully there will be the beginning of new, normal blood vessel growth! God has blessed us again!!! Laurie also gained weight last night, weighing in at 4 lbs. 15 oz.! We may reach 5 pounds by the weekend. Laurie continues taking all her feeds with a bottle (40 cc every 3 hours). Since we are now on the second day without Aminophylline (medication used to prevent apnea spells), she has been de-sating a little more frequently, so the nurse practitioner and doctor are trying to find the right balance with her oxygen level and flow on the nasal canula. We pray that Laurie will make this new adjustment with her breathing and soon be able to do it all on her own! Thanks for continuing to remember us in your prayers. Please pray for travel safety as Todd, Cole, and Mrs. Judy travel to Birmingham tomorrow.

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

September 24, 2008 3:00 p.m.

Hi! Laurie and I are having a great day...just waiting on the ophthalmologist to come and check her eyes! I am not sure if he will even come back today, but stated when he left last Thursday night that he would check her on Monday, Tuesday, or Wednesday!?! We are definitely learning patience!!! The doctors did increase Laurie's feeds to 40 cc every 3 hours, but she still weighed
4 lbs. 11 oz. last night. They will also be giving Laurie her 2 month shots today and tomorrow (just a little behind). Yesterday, they discontinued her medication that assists her with maintaining her oxygen levels. Hopefully, she is big enough now and breathing well enough to do this on her own! All of this is being done to get Laurie ready for going home! We don't want to have to go home with any more support than necessary (oxygen, medication, etc...). We are beginning to see the light at the end of the tunnel!!! Please continue to pray for Laurie's breathing and vision!

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

September 23, 2008 5:00 p.m.

My new BIG girl crib!

Look Cole, I'm finally dressed in real clothes!

Good afternoon! Laurie has had another great day! She was able to maintain her body temperature last night and was in her new crib this morning when I arrived for her 6:30 a.m. bottle feeding! It was great to be able to just pick her up...like a "real" baby as Cole would say! Now that she is in a crib we are able to dress Laurie to help keep her body temperature up. She is wearing the smallest preemie gown we have and it is still a little big on her! She is also taking all eight of her daily feeds by bottle and tolerating it well! Laurie gained some more ounces last night and now weighs 4 lbs. 11 oz.-- we won't be in those preemie gowns long at this rate! She is on very low oxygen settings on the nasal canula. We will continue to try weaning her off this week, so that she will just be breathing room air (21%). We are also hopeful that the eye doctor will be doing another eye exam tomorrow afternoon and find the ROP is getting better. Please continue to pray for improvement with her breathing and eyes!

Love,
Todd, Leah, Cole, and Laurie

September 22, 2008 3:00 p.m.

Good afternoon! Laurie, Todd, and I had a very restful weekend together! Laurie is trying to grow up today! The doctors have decided to try weaning her to an open crib! She will have to go 12 hours holding her own temperature inside the isolette and then they move her to the crib. She will have to go into the crib with a nasal canula because she is still requiring a little oxygen (22%). Hopefully, she will be able to come off the canula soon (again)! This weekend she has been taking every other feed with a bottle, so today we are trying to give her all bottles! So far she has tolerated it well without having to put any through her feeding tube. Last night Laurie weighed 4 lbs. 9 oz.! She is definitely moving right along! Thanks to all of you who continue to track Laurie's daily progress! We are blessed with great friends and family! Please continue to pray for Laurie's breathing and eye development.

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

September 19, 2008

Laurie resting after the injection last night!

Hi! Laurie is having a very good day! The doctors did not get started on the Avastin injection until about 10:00 p.m. last night, but it went well. She does have some swelling today, which is to be expected after having her eyes dilated and examined each day Monday-Thursday this week and the injections last night! She has rested well today and the procedure does not seem to have affected her breathing or feeding. Her doctors did not make any changes in her care plan. She is still taking 35 cc every 3 hours and 3-4 bottle feedings a day, which we continued today. Laurie weighed 4 lbs. 5oz. last night! Thanks to all of you who said a special prayer last night for Laurie. We have faith that the procedure will work! The eye doctor will back next week to check her!

Laurie and I are looking forward to Todd arriving any minute now! I hope you all have a great weekend!

Love,
Todd, Leah, Cole and Laurie

September 18, 2008 1:30 pm

Hello everyone! Laurie is doing well today, yet Mom and Dad are a little anxious! The retinal specialist came last night to check Laurie's eyes again and to treat her eyes. Prior to the specialist coming Todd and I had decided to go with the laser surgery option (because it has been performed for 20 years and therefore there is result data available--50% reduction of a severe outcome-hemorrhage or detachment/blindness--still not great odds). However, the doctor strongly believes that the Avastin injection will be be Laurie's best chance for "normal" vision. We did not realize that Laurie's condition had progressed this far, so we decided to wait until today so that Todd and I could discuss the options further. After much discussion with Laurie's other doctors and prayer, we have decided that we have no other choice, but to do the injections. Although Avastin is not FDA approved for ROP, it does seem to be the best chance for Laurie's sight(It has been FDA approved for other diseases such as cancer). This drug has been successful in stopping abnormal growth and neither hemorrhage or detachment should occur with the injection. However, it has only been used for about 3-4 years, so there is not much data to see the long term effects on preemies. The doctors will do the injection tonight between 5-7 p.m. It should take 1-2 minutes per eye, so this short amount of time should not affect her breathing. We may have to wait a few days to resume bottle feeding. The doctors will check Laurie's eyes again in a week and should be able to see improvement by then. She will be closely monitored over the next few weeks, months, and years.

We are trusting God to use this procedure to heal Laurie's eyes! We have already seen Him work miracles in her life and answer our prayers! Please pray specifically for the doctors performing the injection, for there to be no further complications from the procedure, and for visible healing to begin!

Love,
Todd, Leah, Cole, and Laurie

September 17, 2008 4:20 p.m.

Good afternoon! Although Laurie is having a good day, today has also brought about many important decisions about her care that Todd and I are having to make via phone calls! The retinal specialist did do another eye exam on Laurie late last night and called me to discuss treatment options for ROP (retinopathy of prematurity). After faxing over more information for me to read and discuss with Todd, he will be coming over to do another eye exam and possibly do treatment tonight. This will make her third eye exam in three days. Our treatment options are laser surgery or an injection of avastin into her eyes. Not only do we have further questions about the treatment options, but also concerns about the possibility of the treatment causing her to regress with breathing and feeding. As we have learned from the past few weeks, one procedure or change can affect many other areas of Laurie's care. We are trying to weigh all the options and make the best decisions for Laurie now and for her future health! Please pray specifically for wisdom as we make these decisions about treatment, Laurie's doctors as they perform the procedure tonight or tomorrow, and that treatment will stop the progression of abnormal blood vessels while limiting vision loss.

Laurie is still taking 35 cc every 3 hours and taking three feeds by bottle each day. She gained an ounce last night and weighs 4 lbs. 3 oz. She is still on 26%-30% oxygen in the OE.

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

September 16, 2008 3:00 pm

(Good afternoon! Laurie is having another good day. The doctors increased her feeds to 35 cc every 3 hours and we will try 3 bottle feeds today. Laurie gained 10 grams last night, but still weighs 4 lbs. 2 oz. and is 16 1/2 inches long. She has also come down to 26% on her OE settings. Late yesterday afternoon the ophthalmologist examined Laurie's eyes again and the ROPretinopathy of prematurity) does seem to be progressing. Another ophthalmologist will come by sometime today to go over treatment options for Laurie, which could be medication or laser surgery. Thank you so much for your continued love, support, and prayers. God has blessed and provided for us through your kind gestures! Please continue to pray for Laurie's eyes!

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

September 15, 2008 2:15 pm

Good afternoon! We are having a quiet day here in dreary Birmingham. Over the weekend the doctors increased Laurie's feeds to 33 cc every 3 hours, but have not made any other changes today. I am still feeding her with a bottle for two feedings a day--6:30 a.m. and p.m. Laurie also continues to grow and weighed 4 lbs. 2 oz. last night. She is on 28% oxygen in her isolette, so hopefully we will be at room air (21%) very soon and can move to an open crib. Although Cole was not able to go in to see Laurie this weekend due to having a "runny nose", we enjoyed having Todd, Cole, and Mrs. Judy here with us! The time just passes too fast on the weekends when they are here! Thanks for continuing to check in on Laurie and for your prayers. Please continue to pray for her lung development, eyes, and resistance to infections!

Love,
Todd, Leah, Cole, and Laurie

September 12, 2008 6:00 pm

Laurie gets comfortable after taking her 6:30 a.m. bottle.

Laurie in her "little glass house"!

Hello everyone! Laurie has had another great day! She did much better yesterday with spacing her bottle feedings further apart. We will continue to try bottle feeds at 6:30 a.m. and again at 6:30 p.m. through the weekend. Hopefully, next week we will begin trying three bottle feeds a day. She must be taking all eight of her daily feeds by bottle before going home, so we are slowly working toward that goal! Laurie did reach the 4lb. mark last night!! She is such a big girl! The doctors also ordered an eye culture today because Laurie continues to have drainage from her left eye. They have already begun treatment for the infection.

While Laurie had a restful day, I spent the afternoon getting ready for Todd, Cole, and Mrs. Judy to arrive. As some of you know, Cole is not allowed to stay overnight at the UAB townhouse due to many other guests being here for transplants etc... We of course understand that little ones often bring in harmful germs, but we do have to make alternate plans when Cole comes for the weekend. The Alabama Power Company offers a great service to families of hospitalized members who need short term lodging while in Birmingham. We are so thankful that we have been able to stay at one of their townhouses the weekends that Cole comes, rather than having to get a hotel for the weekend. However, this does require that we "pack-up" and take clothes, linens, and food to the Alabama Power townhouse several blocks away. After moving all our "stuff", Laurie and I are now all ready for the boys and MeMa to get here!!!

Thanks for your continued prayers, love, and support! We are truly blessed! Please continue to pray for Laurie's lung and eye development! Hope you all have a restful and safe weekend! I will post again on Monday!

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

September 11, 2008 4:15 p.m.

Good afternoon! Still not a lot to report from the CCN! Laurie is having a great day! Today we are trying to spread out her two bottle feedings so she doesn't tire out so easy. I gave Laurie her
6:30 a.m. feed in a bottle and will try again tonight at her 6:30 p.m. feeding. Last night she only took about half of her 2nd bottle feed before she began de-sating. We decided to stop and give the rest through her feeding tube. We will slowly continue to try increasing her bottle feeds. Hopefully, by next week we can try 3 bottle feeds a day. She is finally putting on the ounces and weighed 3 lbs. 15 oz. last night. She could reach the 4 lb. mark by tonight!! We are also trying to wean her off the oxygen in her OE. Thanks for your continued prayers. We can see them being answered each day! Please pray for Laurie's continued growth and for safe travel as Todd, Cole, and Mrs. Judy come to Birmingham tomorrow.

Love,
Todd, Leah, Cole, and Laurie

September 10, 2008 5:15 pm

Hi! Laurie is enjoying the rainy day in Birmingham by sleeping and growing! The doctors have not made many changes with her care plan today. They increased her feeds to 30 cc every 3 hours and we will now be trying 2 bottle feeds a day. She took all 30 cc this morning and I will try her second bottle at her 6:30 pm feed. Hopefully, she will be able to handle the two bottle feedings without becoming too tired. It just takes lots of energy to suck, swallow, and breathe! Laurie contiues to gain weight and weighed 3 lbs. 11 oz. last night! Thanks for your continued prayers.

Love,
Todd, Leah, Cole, and Laurie

September 9, 2008 5:30 pm

After my bath last night with nothing on my face!

Hello everyone! Laurie is having another very good day! Late yesterday afternoon the doctors tried her off the nasal canula again and she is back on OE (oxygen environment). She seems to be handling this very well! They did increase her feeds again today to 29 cc every 3 hours and I gave her the entire 12:30 feed with a bottle! She also continues to gain weight and weighed 3 lbs. 10 oz. last night. Laurie had another eye exam today and there are signs of mild ROP (retinopathy of prematurity). However, the ophthalmologist stated that there is no more scarring than he would have expected in a preemie born at 23 weeks gestation. When babies are born prematurely, the growth of the retinal capillaries is interrupted and when they begin growing again they can grow too fast, which can lead to scarring and damage to the retina. This is what seems to be happening with Laurie, so we are praying the capillaries' growth slows before more scarring and vision problems occur. The ophthalmologist will check her again next week and continue to monitor the capillaries in her eyes to determine if later treatment will be needed. Please continue to pray for Laurie's lung development, eyes, and eating tolerance!

Love,
Todd, Leah, Cole, and Laurie

September 8, 2008 2:40 pm

Please, no more pictures Mommy!

Hi everyone! I hope you all had a great weekend! Laurie had a few "bumps" late Saturday. After we gave her the 12:30 bottle, she began having more frequent and lower de-sat spells. She also had a couple of bradys and had to be "bagged" back up twice. Laurie was just trying to let us know that we were moving a little too fast for her with taking away the nasal canula and trying bottle feeds once a day! Therefore, the doctors decided to put her back on the nasal canula. They also ordered a blood gas which showed her hematocrit was low. So on Sunday morning she had a blood transfusion (30 cc). We decided to let Laurie rest on Sunday and did not try to bottle feed (as this burns lots of calories and energy). Laurie seems to be doing much better today (fewer de-sats and not as low) with the nasal canula back and fresh blood. We did resume bottle feeds today and she was able to take most of her 12:30 feed. The doctors did not make any other changes in her care plan today.

Many of you have been asking about when we might be able to come home. Although Laurie has made lots of progress, we still have a ways to go before we will be ready. The doctors say that a good estimate is until her original due date, which was October 19th. There are also several milestones we have to reach before going home--taking all feeds by bottle; continuously gaining weight (not a specific weight); in an open crib, preferably on room air only; and at least five consecutive days without any apnea or brady spells. Hopefully, Laurie continue to make progress towards these goals so that we can come home by mid-October!

Thanks for continuing to keep up with Laurie's progress and for your continued prayers. We know that we would not have made it this far without the support of our family and friends!

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

September 5, 2008

Happy Friday! We are having another uneventful day in the CCN. Laurie continues to gain weight and weighed 3 lbs. 7 oz. last night. I was able to give her a bottle at her 12:30 feeding and she took all 26 cc.! As you can see from the picture she has had her eyes wide open today. I believe she is anxiously waiting for her Daddy to get here! Cole will be spending the weekend with Uncle Kevin and Aunt Tammy. The girls are already teaching him how to "fight" with a sister!!! Since Todd will be here, I will not post again until Monday. I hope you all have a great weekend! Thanks for your continued love, support, and prayers! We are so blessed with wonderful family and friends!

Love,
Todd, Leah, Cole, and Laurie

September 4, 2008 3:00 pm

We do put the nasal canula back in to help with breathing while she is bottle feeding!

Hello everyone! Laurie is having another quiet day to rest and grow. Her doctor and nurse practitioners made rounds this morning and are very pleased with Laurie's progress. She is getting 27%-30% oxygen in her isolette on OE. We are trying to slowly wean her down to room air or 21% oxygen and of course we would prefer she had fewer de-sat spells. Hopefully, this will all come as Laurie's lungs continue to grow and develop. As you can see from the pictures, Laurie tried taking a bottle again today and was able to take the whole, increased amount of 26 cc! This still requires lots of energy and burns many precious calories, so we will only be giving her a bottle for one of her feedings each day for the time being. She continued to gain weight last night and now weighs 3 lbs. 5 oz.! Please continue to pray for Laurie's lung development, tolerance of feedings, and resistance to infections! Also, pray for safe travel as Todd comes to Birmingham tomorrow night.

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