August 22, 2008 – It was off to the doctor’s office for what I thought was a routine check. However an hour before my appointment I had light labor pains every five minutes apart. The doctor said oh it’s probably nothing because you are due September 15th but we will check instead of tummy measuring. I was to a four so just as precaution I was sent to the hospital. Once I got there my cousin was so upset because she said “You don’t want to be having this baby now…” I said I know, but something is different. The really strange thing – I had that feeling all along, but everyone said you’re just nervous (minded this was my second child and I knew what to expect).
They monitored me and everything at first was normal even doing an ultrasound and they were getting ready to release me when they noticed my little angel was flat lining. My cousin came in and they began to prepare for an emergency C-section. I was rolled to the OR given a spinal tap and was almost cut open when the doctor decided to check – I was a 10 so I delivered our angel on the OR table w/ techs helping trough it all. (They had never experienced that before!) We named her Lana Grace and she was 8 lbs 4 oz w/ the cutest red hair. While I was in recovery I had some minor set backs and when I got back to our angel she was being taken away from me to go to the NICU because she could not hold her body temperature.
Soon our world seems to spiral…they were saying she may have brain damage because her bowels were not seeming to empty properly. They were given her an antibiotic because while testing her they found she had an infection (she never ran a fever- may I add through all the infections she only had one fever. Our clue – she stopped eating which at first the doctors would not agree with me, but now they say Lana completely changed the rule!!) Then she developed not eating properly so we were tube feeding her. Finally things began to calm down so it seemed. The infection was gone all her BM’s and wet diapers were appearing to be normal, but she was barely making her needed CC’s at feeding time. Due to her improving they felt she would do better at home in her own environment so two weeks later we were on our way home.
Home time was wonderful minus one week of being home I had to call 911 because of her reflux or so I thought. Soon things began to change for Lana her skin was as though she had “baby acne” w/ bumps all over face and 5 weeks past thus putting Lana 7 weeks old our time at home came to end…. She had stopped eating. We monitored her through the night per nurses orders because the clinic was so full of so much sickness they knew she could not risk getting sick. We monitored her very closely and were to go to the ER if necessary. Once we got to Sat. clinic at the doctors office things changed very very fast. Her skin was pale, she had almost become lifeless though it seemed. They checked her blood levels and found she had an infection in her blood stream. We were sent straight to the hospital. They admitted her to the hospital then done a spinal and found she was completely sepsis – she had spinal meningitis from the bacteria Ecoli.
They immediately began the process of making sure she was on the right meds and she seemed to turn around until her O2 stats dropped after 1 am. The infection was now attacking her respiratory system. As the doctor ran in she began immediately saying she was sorry because it seemed to be under control, a test they had done after admitting her came back and showed she had urological problems and our doctor told us that Lana was going to be air lifted to UNC Hospital in Chapel Hill, NC (which is an hour and 10 min drive) and she would do her best to get us the top Urologist there Dr. Sutherland. As we waited for the aircraft we noticed that things must have been getting worse they had a nurse standing by the door prepared to do an emergency tracheotomy. Around 2 am the air life team was in our room saying that time was not on our side because fog was settling and they had to go. As they were leaving our room the last words they said was be prepared she could possibly on life support when we arrived. With our hearts in our stomachs and lost not knowing what just happened we turned to family and friends who began to pray. As we left the hospital I keep looking in the sky “would she make it”, “would the air craft make it” – why was I looking….. I don’t know because within 15 min our angel was already at UNC, but I keep searching during the entire drive to see if I could spot her. Apparently I was not the only one looking – our Pastor was out in his yard at 2am praying and scanning the skies for our little angel in flight.
Once we arrived at UNC we checked in and found that Lana was in PICU. We were told we could see her in about five min. which turned into an hour. Finally the doctor on staff came out. I felt my knees beginning to loose all stability the look on his face was that of lose and of regret. However we found it to be a look of hopelessness on his part, but I could just feel even in a time like this God was not done with our angel. I had an explainable peace however; at the time was the peace that of healing her so that we could keep her or peace of healing which had to take place in Heaven. Either way – I knew she would be healed and therefore I hung on to HOPE and kept the FAITH!! He warned us of Lana being on life support and she was swollen almost to the point of non-recognition (I found out in Jan. of this year she was actually no responsive when she arrived to UNC.) But Praise God she slowly started to come around. We were not allowed to speak with her or touch her as this would make her react and possibly loose the valuable access line which we called the “Train” which was in her neck. It was so long the leads were coming out from every direction. As days went by her kidneys stopped working, only to return working again, she had allergic reactions to some of the dyes, they had a lot of trouble keeping the fluid off of her. But finally the swelling was going and she was pulled off life support. We FINALLY GOT TO HOLD OUR ANGEL and trying to feed her was a great task because it was as if she forgot how to eat. She was put on a special formula for a little while to help with the kidneys (easier for them to filter) an amazedly once the infection was gone Lana face cleared up. The baby acne was caused by her infection (this doesn’t mean all baby acne is infection – this was just in Lana’s case). Lana was released from the hospital Nov. 1st only to return Nov. 7th. She had at least 13-15 visits to the different hospitals from Oct. 2008 to May of 2009. In between all of those visits she was re-infecting even on a preventative antibiotic. In Jan of 09 she had her third surgery (the first two were dilatation of the urethra. This was her vesicostomy she continued to have multiple infections. Then in May of 2009 she had her ureterostomy without a preventative med and has not had an UTI since. She does have stoma irritations from yeast occasionally but even that is reduced to a bare min. because we only use chlorine free diapers and wipes on her and do not allow her to stay in a soaked pull up long at all. Lana also has Asthma and bowel complications, however due to an exact time schedule and monitoring her food, Lana is potty trained for BM’s and no problems with constipation, at this point.. Through all of this Lana has become resistant to a couple of antibiotics……. She has had Two VCUG’s, no DMSA scan because she does have kidney scaring and the left kidney is smaller than normal and her right seems to be on target. Due to no new scaring and her blood levels and blood pressure being normal they will not do this test because it is considered “unnecessary risk exposing her at this point” because it will not change the treatment plan for Lana. She goes to her urologist and nephrologists once a year now verse every 3 and 6 months. Through all of this we found out Lana as VUR Grades 4 and 5 which is secondary to a non functioning bladder. At this point she has not been diagnosed with a medical term for her bladder because they are not quite sure yet what to label her as. We have gone from her needing an appendi-mitrofanoff for cathing only to possibly that as well as cathing from below. Which tells me her bladder is changing! She has also gone from sever hydronephrosis to mild which we were told it could take up to four years for it be considered normal (Lana’s case so far this seems to be true).
Lana is being trained to cath every night. I cath her vesicostomy because it has not been closed yet because Dr. Sutherland wanted to have min. scaring when doing her reconstruction surgery around the age of 4 or 5 (she is 2.5 now). It is second nature to her and once she is done, she caths her teddy bear the exact way I cath her. It is amazing to see how she has adapted. We of course are still praying for the final miracle of complete healing so that Lana will not have to self cath the rest of her. If she does I believe with all my heart God has already prepared her for that mentally just by her actions, now if I would let it go and put it in His hands so he can prepare me for HER journey. XXXXXX
Through this whole experience it has amazed me just how much of a miracle a baby really is. I had a nurse sit down with me at the hospital and just cry because she said most people think that having a baby is not a serious risk and to be honest I was one of those people until Lana. Lana and I both were at risk that day, but we were given the miracle of her life. She has proven to be such a trooper and we have blessed with miracle after miracle. Through all of this looking back it amazes me just what you can accomplish as a parent juggling a 2.5 year old and a new born. I still cry at times thinking about how God gave us the strength to make it through. Cathing and meds round the clock, a 2.5 year old longing to be in her mothers arms while adjusting living with someone else, my short term disability running out just as Lana had her vesicostomy and then having to return to work in order to provide insurance and keep our needs meet as well. Through all of this God provided… when there was no money God sent family, friends and even strangers to aid our need, when there was no food God sent friends to fill our cabinets both at the Ronald McDonald house and our home, when there was no energy to get our house in order God sent family to clean our home. My husband and I were very determined that this was not going to push us apart and that vow thanks to God we have kept. To be honest during this difficult time it only made us a lot closer. The odd thing now is….I myself am crashing. My doctor referred to me as a warrior in battle… In this struggle to understand something you did not even know existed and fighting to keep your baby in the best care possible. I just like all other parents with child with special needs do become consumed with this task and when things get better your body doesn’t now how to respond. I seem to be barely putting one foot in front of the other to accomplish one single task much less the many I had before. But I know with prayer, time and faith I too will be back to myself only better and stronger than before because I was allowed to go through this test. Would I wish it on myself or my child again NO!! But yes I am thankful for this because I have come out of this a lot better and stronger person than I ever dreamed I could be. XXXXXXXXX
My wish out of all of this “I wish I could have Lana’s outlook on life, child like faith and the ability to move on in the must difficult circumstances.” I have these; it just takes me a little longer.
Just two more notes about Lana….
When Lana was first diagnosed, we were told out of their 100’s of patients her primary Dr. office sees (Which is 10 doctors and NP’s total) Lana was the first case they had seen. Bitter sweetly, there is now a second child however he is a little boy that is around Lana’s age. I say bitter because I hate there is another child having to go through this, but sweetly because maybe we could meet and go through this together. I am praying that someday we may meet and Lana’s doctor is going to see how the other mother feels about us meeting since I have shown interest!!
Lana has met and went above every mile stone for her age; she amazes me at 2.5 counting to 10! She is very laid back and such a “tough cookie”. I get so tickled at her… When her sister cries about something she will say “Bailea (who is 4.5) stop being a baby everything is going to be OK!!!” She started day care in Feb. 2011 and functioning just like any 2.5 year old would. This is the reason this is so important….The doctors told us that she would barley met her miles stones if even come close and one Dr. even told us we might want to consider a special school for her. I am so glad that we did not except this we prayed and our prayer was answered!!
“God allows us to experience the low points of life in order to teach us lessons we could not learn in any other way. The way we learn those lessons is not to deny the feelings but to find the meanings underlying them.”