Her Story (Part 2)

Finally, part 2! I can’t tell you how much energy it takes for me to write this. Some of it I will never forget, some of it I have to try really hard to remember exactly what happened which frustrates me, most of it I re-live, and a lot of it I cry through but I am going to get it all done!

Continued from here

So, she was whisked away to the Neonatal Intensive Care Unit. She was unable to breathe on her own she was vented and placed on oxygen. She weighed in at 6 lbs 7 oz so she was big to be 5 weeks early. Aaron was able to go down and get updates on her and finally at around 3:30 am I was able to go down to the NICU to see her. I waited over 6 very long hours to get to see her but I was determined I would not go to sleep until I laid my eyes on her. We were unable to hold her of course. I remember entering the NICU and she was covered in tubes and wires and it did upset me a little but I was just so glad to see her. Looking back now I keep thinking of what was going through my head at the time and I am not really sure. I think I was so happy that she was alive that nothing else mattered at the time. I have to add here that the entire NICU itself is an experience which is very overwhelming. That night there were some very critical babies in there, at one point she was beside what they referred to as a heart baby (a baby with major heart complications), once there was a baby who had been there for months and months and no one had been to see her (which was not that uncommon), once she was beside a baby with some form of dwarfism, a baby that weighed 13 ounces at birth. You simply cannot grasp just how much of a miracle it is when everything works as it should in our bodies until you have been a part of something like this and see just how many things can be wrong. It is amazing! Later that morning Aaron went down to see her and they had drained the fluid from her lungs and tried to take her off the vent but she was not ready yet but the news that morning was promising. She was undergoing lots of tests that morning. In the afternoon Aaron took me back to see her and the nurse (Stephanie was her name and she was wonderful and I can still see her-she called her Mustang Sallie and she had made a bow for her hair) told us that they had some results for us. Stephanie got one of the doctors and he told us that she had a cleft palate, one kidney, several heart defects, that the sutures in her skull were fused together and that in order for her brain to ever expand she would have to have surgery to hopefully create space in there, and that it appeared she had some type of genetic disorder or syndrome. My heart aches just thinking about sitting there that day and being told this news. I simply cannot describe the feeling. What? I didn’t do drugs, I didn’t drink, I didn’t smoke, I took care of myself, there was no family history of anything like this. How could this happen? What did I do to cause this? I cannot tell you how long I dealt with the question of what did I do to cause this. I was certain that I had to have caused this. Praise God that I have been set free from those thoughts that tormented me for so long! When I finish her story I plan to do something on the things I learned most but I have to say this now. Never think you are exempt from things like this happening. It happens every day to people just like you and me. However, also do not live in fear that it will happen to you. God has a plan for every one of us and our children (even those we do not consider “complete”-we are all “complete” in HIM). Sorry for the digression! Stephanie stood beside us with a box of tissues in hand, patting us occasionally. I remember the doctor asking, “do you have any questions?” I often wonder if anyone has any questions at that point. I do think Aaron asked a few things but it is kinda hard to think in that situation. We came out of the unit and both my sisters were sitting there waiting on their turn to see her. I guess we somehow told them what we had been told and Aaron wheeled me back to my room on what felt like the longest journey ever. My dear sisters held it together for us and they would do so many times from that point on. The remainder of that day we spent crying and telling the rest of our family and friends what we had been told and praying. They of course assured us that we would all make it through it together and would do whatever it took for her. The next morning A went down first thing to see her and the Drs were making their rounds and they told him they had done another test and that it did indicate that there was movement of the sutures in her skull and also they were able to remove the vent and she was now breathing on her own. Praise the Lord! That same day when A and I both went in to see her, the geneticist was examining her. Not sure what it was about that but I did not like it. Why was she looking at MY baby? I mean I knew why but I just can’t explain the feeling. I felt like my child was some specimen and I just had a hard time with it. Keep in mind I was less than 48 hours postpartum (very emotional and still on the magnesium to make sure my blood pressure stayed Ok). She told us that she did not know what Sallie had but that it did not appear to be Downs to her. They did the genetic and chromosomal testing that day and told us we would have to wait for 6 weeks. 6 weeks that felt like 6 years. At some point that day (I think it was that day. I know I was still in the hospital because I can still see myself lying in that hospital bed and the Lord revealing this to me). From the time they gave us the news about her health, I kept thinking it is just not supposed to be this way. I verbalized it, I thought it to myself over and over and over and finally the Lord said to me, “I never told you it would all be great. I never told you things like this wouldn’t happen” To this day, I feel so strongly about this. The Lord does not promise us our lives will be like we think they should or desire them to be. We are promised trials as Christians. “Beloved do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you.” I Peter 4:12 I had no idea how much our faith was going to be tested over and over again (and continues to be). My Dr came in that night and told me I would be dismissed on Sunday which brought a whole new set of emotions and decisions. It was much easier being right there in the same hospital. Where did we go from here? That Sunday night we stayed in a hotel and both my sisters were with us. We ate at Chili’s (also where Aaron and I ate on our first date-it has a special place in our hearts!) that night and I remember feeling like I was in a dream. I was sitting in Chili’s eating and my newborn was in a NICU. I couldn’t eat, I couldn’t think, it was just strange. We had no idea what we do from this point on. We obviously couldn’t stay in a hotel every night. Our home was 2 ½ hours away and we had been told that she would probably have to stay for about 6 weeks. We got settled in (as settled in as you can get under the circumstances) and Aaron told me he had to go back to the hospital to check on her. He had always been a wonderful father but he took fatherhood to a whole new level when it came to Sallie. I admit, I was very intimidated by her and I felt really guilty about being that way. He just embraced it all so much better than I did. I will share more on this later but he is always the one who has it together when we get bad news about Sallie and I fall apart and later he falls apart and by then I have it together. God knew just what He was doing when He put us together! The next morning his mom called us to tell us that she had been able to get us in at some townhouses that were a few blocks from the hospital. The Baptist Association in that county operated a floor of that building. Aaron’s mom worked for the time at the AL Baptist Children’s Home and through connections was able to get us in to one of the townhouses. It cost us $12 a night. That is such a wonderful ministry. Individual churches are responsible for the upkeep and they do a wonderful job. There was scripture everywhere you turn and my healing (emotional) really began there. At this point, we had been taught how to feed her with the cleft. We had special bottles that you squeezed the formula into her mouth. She had reflux terribly and she screamed through every single bottle we ever gave her. Only by the grace of God, did she thrive. We forced every drop down her and she threw up most of that (every time). We spent our days at the hospital and after her 1O o’clock feeding we would go back to the townhouse and then Aaron would get up to go feed her every 2 hours. I remember saying, “baby, you need to rest” and he would say, “she needs me more.” Now you know one of the many reasons I am so crazy about him! They did vision tests which were good, and they did several hearing tests and she failed them all but they told us this was not completely uncommon and we would have to wait and see what happened. After a week we were told that we could do everything she needed at home and that we would be released. We were so thankful! What we thought would be 6 weeks was 1 week. Something to be very thankful for in the midst of so much uncertainty. So, we headed home with a baby we had no idea what to do with but love, a stack of appointment cards for the first set of what would be hundreds of doctors appointments and to wait for her genetics and chromosome testing to come back.