Sunday, October 26, 2008

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

Saturday, October 18, 2008

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!

Todd, Leah, Cole, and Laurie

Tuesday, October 14, 2008

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!

Todd, Leah, Cole, and Laurie

Sunday, October 12, 2008

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

Wednesday, October 8, 2008

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!

Todd, Leah, Cole, and Laurie

Tuesday, October 7, 2008

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!

Todd, Leah, Cole, and Laurie

Monday, October 6, 2008

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

Friday, October 3, 2008

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

Thursday, October 2, 2008

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!

Todd, Leah, Cole, and Laurie

Wednesday, October 1, 2008

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