Sorry I didn't post the last two nights. The last two days have been crazy, and by the time I was ready to post at the end of each day, I couldn't keep my eyes open. So, I am going to back track to Thursday and Friday as best as I can, so you all will know everything we know. First, we love you all so much for your prayers for the Rawls Family. Madison is a testament to the power of prayer and the love, mercy, and GRACE of our Lord (There was a reason for picking that name huh?).
We made it over to the NICU mid-morning. As soon as we got there, we were greeted by a specialist named Lita. Lita puts in PICC lines, which are central IV lines that feed directly into her superior vena cava. PICC lines are more stable and provide better access for medicines, fluids, etc. Lita told us that PICC lines are a good thing, and that she would return in a few minutes to explain everything to us. We weren't prepared for what we were about to see when we entered Madison's room. Sometime during the night, they had removed her IV in her hand, and put one in her little head. After seeing the initial shock of an IV inserted in her head, the nurse came in and explained why it was actually much better for her that her hand IV's and she was in now discomforted by it. Mommy and daddy cried for a little while, but we finally came around to understand it was a good thing for her. We learned that one of her veins in the side of her head is much larger, she is less likely to pull it out, and it is also less likely to need replacing on its own. So, we managed that finally get over that shock and listen to Lita explain PICC lines to us. I signed the authorization (which is a little crazy too, that anybody would let me sign for anything), and we were minutes away from proceeding with putting in the PICC line, when once again I believe God intervened!
One of Dr. Tulipan's associates (can't remember your name Doc... sorry), and she informed us that Dr. Tulipan had changed his mind about the necessity of putting in the PICC line. PICC lines are used when it is expected that the baby will need long term doses of antibiotics because of multiple surgeries. Dr. Tulipan's associate informed us that they had changed there minds about the PICC line because (based on the latest scans and data) her chances for shunt surgery were decreasing. WOW!!! So much had happened in a short amount of time, it was incredible! So, we quickly learned we were putting Madison's PICC on hold, and we also learned that they will perform the next scans on Madison head on Monday June 14. If the scans look good Monday, they said there is a good shot we will go home mid-week next week. If the scans show her ventricles are dilated enough for surgery, she will have the procedure mid week next week, and that will extend our time at VUMC for at least another week. HOWEVER, that will not happen and we will all see our Lord show His power in the coming days.
Madison remained sedated all day Thursday, so whenever we visited she was asleep. A sleeping little Angel. Her surgical incision site continued to look better and the swelling was going down, so that was great. We returned to the NICU after a midday nap, and Mandy was able to hold Madison for the first time since surgery. Mandy pulled her gown down a bit so Mommy and Daughter could feel each others skin. It was a pretty awesome moment, because they were finally able to begin the bonding process. After about 45 - 60 minutes, mommy needed to return to the Hospital room because she was really starting to hurt from C-section surgical pain. We returned and both of us medicated and feel asleep almost immediately.
We woke sometime between 9-10. Mandy hurt and didn't feel well, so she pumped some breast milk for me to take to Madison. I was so excited that I was going to get to see and hold Madison, I felt like I was about to go out on a date with her. I showered, shaved, brushed, powdered, spritzed, and any other bathroom term you can throw in here. I had an excitement pulsing through me that covered up any residual pain from my surgery just a few weeks ago. I limped/walked over to the NICU as fast as I could. By the time I got there, I had actually worked up a good little sweat from the pace and anticipation. I took a couple of minutes to cool down, and then I decided to take my shirt off and put on gown on so that Madison could lay on my chest and we could feel each other too. My goodness, I am going to like this daddy/daughter thing. I could have sat there all day. I completely lost track of time... I arrived sometime around 10 am, and it was getting really close to lunch time. I was able to hang around long enough to meet with the rounding physicians. I learned the latest and greatest news about Madison. For a newborn Spina Bifida baby, they are extremely happy with Madison's ability to almost completely empty her bladder on her own with the use of a catheter. We will have to be trained on how to insert a catheter into Madison after getting discharged. After the Drs. left, I begrudgingly had to return Madison to her pod to get back to mommy. I had been gone so long, Mandy had gotten into the shower by herself. I helped clean her up, and we got some lunch and returned to the NICU for the afternoon.
... and then the craziness began!
Mandy was getting discharged yesterday. During the day, we got connected with Madison's social worker. She arranged for us to have a family sleeper room next to the NICU, so on our way back to the NICU I put almost all of our stuff on Mandy's wheelchair to bring with us to our new room. Mandy's cousins were also visiting in our room, and they helped me carry some of the heavier bags. We arrived at our new home around 3:00 pm and got everything unloaded in our new digs. I decided to stay there and rest while Mandy, her cousins, and other visitors rotated in and out to see Madison. I got a call from our social worker at 4:00 that she had been contacted by the Hospital Hospitality House (HHH) in Nashville, and they had a room open up for us. A decision had to be made by 5:00. The Family room was literally 50 yards from the NICU, but they could only guarantee the room through Sunday. The HHH was 3 blocks away from VUMC, but once we signed for the room, it was ours as long as we needed it. We were in a dilemma, and I didn't know what to do! I talked with Mandy, our social worker, and Madison's nurse to get opinions. Our SW and nurse said we should take it, because it was a sure thing and we still don't know how long we may be here. Mandy and I were really unsure, (Mandy more so than me), but I decided to take the HHH room, I literally had minutes to get over there and sign the paperwork. The shuttle service that takes patients to HHH wasn't running on schedule, so my blood pressure went up. I finally arrived ten minutes after five, and the caregiver on call let me sign for everything and immediately return to the Children's Hospital.
As soon as I walked onto the NICU floor, someone at the front desk told me that I needed to get out of the family now immediately because they had already given the room to another family. So, I had to pack everything back on the wheelchair use another set of friends to move everything back to Mandy's hospital room because we still technically weren't discharged from the hospital yet. We arrive back in her room, get discharged, and take everything down to the car. I took us a few minutes to get there, and we had to call my parents to come help us unload because I couldn't and shouldn't have picked up some of our heavier luggage. The HHH is about a ten minute drive (without traffic) because of the winding roads and traffic lights, and the room is bare bones. However, it is free and guaranteed, and once again (I think) we were shown a glimpse of God because we were given room #7!!!
After getting settled and having dinner, we returned to the NICU one last time. By this time, Madison was really beginning to rouse because she had stopped her pain management medicine regimen that morning. After playing with her for a while, I really needed to get mommy back to bed. However, Madison was wide awake and alert, and mommy didn't (and almost couldn't) leave!! She felt like she was leaving her alone since it was the first time she had really been awake since the surgery. I literally pushed and pulled Mandy out of the NICU to return to HHH. She cried the whole way and quite awhile after getting back. Bless her heart, I was broken up over that. We got mommy calmed down and medicated so she could rest. The beds were comfortable, and we both needed a real good and long nights rest. So, that pretty much wrapped Friday up.
I will try and post Saturday's info tonight or first thing tomorrow morning, but I will once again just mention God's fingerprints on what we have realized so far...
Madison has 7 letters
She weighed 7lbs. 7oz. at birth
We were assigned room #7 at HHH
On a beauty scale of 1-7, Madison is a 7+
We love you all very much, and please overlook any grammatical missteps. I am not really proofing these things, and I taught myself how to type (which says enough).
Madison Grace is going great, and the prayers she receives each day are nourishment enough for her little body and spirit. I continue to pray that our Lord receives nothing but honor, glory, and praise during every step of this process!
With tears in my eyes, all my love...