Tuesday, July 21, 2009

Our Nicu Journey in Reflection















I read back on my first initial entry in this blog and it all comes pouring back all the questions, worry and anguish I somehow knew would exist. Somehow the hardest part of the entire journey despite all that my baby's fought to go through I could never help but weep at my own sorrow. For they have forgotten and will never remember their stay in the Intensive Care Unit for so long, but I will. Through so many self discoveries I will share with you my journey through the Nicu and my thoughts and feelings about that journey today, almost one year later in reflection how Gods Grace and Gods will allows me to see clearly the righteous path he chose for us.

July 31st, I was discharged from the Hospital. My mind was set on spending time with Whitney, my stay away from was so very difficult. I cried every night I was in the hospital. So many people in the same situation are probably so much stronger than I. I knew I was weak when it came to the absence of my daughter and It broke my heart to feel so out of control to know that her heart was aching without me. To feel and understand the fear of not having Mommy there just broke me down to tears every night. Its what made the stay before they came so difficult. The pain of it all wore me down quickly. I give so much credit to woman that spend weeks and months hospitalized, I just was not strong enough to do it. I found myself feeling totally guilty for feeling like I wanted these babies here so I didn't have to suffer anymore. Mental battles begin with such feelings. I was putting myself before my babies and that's not a pleasant feeling when you know how important it was for them to stay inside you. This however was never my choice, I knew I could have hung on, I could have done what I needed to do if I knew it was going to mean that they would be safer, healthier and I could take them home with me after having them. Its those glimpse of thoughts and feelings when a person is being broke down emotionally that the fear and anxiety sets in about the stark reality of what life has brought you. We left the hospital us 3 and I cried so hard, it was not normal in any sense to leave them there and to leave them behind. How did this happen, why did this happen and what's going to happen when I get home? We took off to Chuck E. Cheese, what a celebration we wanted to give Whitney a chance of some normalcy, a chance to spend with Me and Daddy! 3 days post c-section I was as active as a normal individual. ( I walked 2 hours after having my stomach ripped apart *again*, every doctor and nurse was amazed at my recovery, I wanted to see my babies IMMEDIATELY!) and because of my quick recovery I did way faster than normal. We played we enjoyed. We went back to the hospital and gave some much needed love to our babies. Still encouraged to avoid over stimulating them we would just gently place our hands upon their bum or head to let them feel our love and presence. I had to be strong for them and I tried to be so optimistic and I just told them how much we loved them and how I didn't want to leave them there all alone. The pastoral lady came to my side. We talked in lengths about where we were and why, to discovery and wonder the plan he had set before us was much to confusing to understand. However despite all there was to the unknown I felt so at peace that they were here and that they were alive. The pastor looked at me and she told me that I was the strongest woman she had ever seen for seeing the faith and the glory of their existence and that I was going to make it through this very well. I felt confident. I was ready to leave.
My drive home, I felt strong and I felt like I could handle coming home, after all my only thoughts were Whitney and some normal life for her now. Don of course drove and as we approached home still strong and powerful in my emotions I quickly became one big hormonal mush of weeping and wallowing pity. I saw my house and I cry this very moment when I think back on how just amazingly empty I felt. My stomach was empty, my arms were empty, my car was empty. My babies, I wanted my babies. I'm not supposed to be coming home without my babies. It just didn't make any sense all over again. Don offered to keep on driving, I told him no to pull in the driveway or I'd never be able to come home. We did, I cried and it was just this way the entire time they were in the hospital.

Nothing can prepare a mother for what it would be like to come home empty handed. To leave your baby or in my case babies behind to let someone else love them and care for them and to be there for them when they cried. I felt so unbelievable blame for what my body had done to fail them. For what I thought was maybe a mix of both my fault and my husbands fault. All the times I was pregnant and pleading with him that I was weak and tired and that I needed time and space and a chance to relax. That day before my abruption I had gone grocery shopping with my 2 year old in tow. I'm sure very typical for many woman in pregnancy however at this point I knew I was exhausted, I knew I was over extending myself, still carrying Whitney around, lugging around hundred dollars worth of groceries and this point I had already spotted just the week before, was in the hospital for preterm labor and here I was doing what I shouldn't had been. I was very angry and defiant toward my lack of support in my life. Even my own husband threw a fit as he was supposed to be the one that got the groceries that day and was very upset that he had to take Whitney with him. Of course if you pull that card with me my of course independent option is of course to say 'you know what, forget it, I'll do it myself later with Whitney'.................................what if................................what if..............what if I just said 'just quit your damn whining and do the dam shopping and just take your daughter with you! Toughen up Big Boy, life is going to be so much more than just taking one kid to the grocery store! So of course hidden resentment plagued my soul and heart amidst other personal marital problems that will not get into on a blog! Lets just say that I quickly separated myself from any other thoughts other than my children. They would be my only priority, my only thoughts of every day. I slept on the couch to hide the sounds of tears and crys as to not wake my husband and daughter. The constant 3 -4 hour pumping were always a fresh reminder that they were not here and that this was not the way it was supposed to be. This was my emotional journey all the way up till Austyn came home 6 1/2 weeks later. Again tears were shed for the bitter sweet victory of his arrival home. We had one baby home and the other to arrive home in a few short weeks. He filled my heart and I quickly bonded so much with him. He nursed very well and I still needed to pump but we were on our way. Such a happy and content baby, I thought 'this is so easy'. I went to the Nicu everyday to see my Princess and I'll share more about her in a little while.

Austyn's Journey- Austyn was born so badly bruised, I was 7cm dilated when I was given my c-section. Which of course was my choice. My thoughts is my babies will have a tough enough road in recovery and I wanted to avoid all extra stress on them from a vaginal birth, its tough even for term babies. So let me take the pain and let me make the sacrifice. Although I will admit that my water breaking and my labor was exciting from the standpoint that I felt like 'now my body wants to work' LOL. really I had to be induced with Whitney and my body wouldn't dilate for her, so really special to feel like my body wanted to do the natural right thing. Austyn took some time to come off the bili lights. I think it was about twelve days or so. It was shortly after his ventilation that needed to happen. Austyn stopped breathing all the time and so he was just so weak and couldn't do it on his own anymore. He had to be put on the vent. It broke my heart and I just cried so hard when I saw my boy. Chokes me up to think about it, just not fair for him. He would throw himself around with feelings of being uncomfortable. He dislodged the vent and so it was removed and he was able to breathe on his own after 2 days, it was what he needed to re coop and gather up the energy his body needed to do on his own! I was not able to be there for him when they called and said they did this to him. It breaks your heart to receive phone calls from the Dr's explaining to you what had just happened. The images and thoughts that ran through my head, they hurt my heart. Austyn had some problems with eating, he wouldn't go to the bathroom and wouldn't then digest his breastmilk and so they would stall the feedings and would have to start over again, it was pretty much this way every time he didn't have bowel movements on a regular basis. So he was slow going with his feedings but soon he was fine, pretty much when he was off the artificial food they pump through their body till they are on full on breastmilk. They call it gut stimming. Austyn blew up like the little 'Michelin' Man we called him. He gained excessive water weight and as much as thought it was just chuck from mommy milk we knew different after a few short days we became very concerned. He also battled a severe infection in his lymph node in his neck. I insisted there was a problem with his neck. After a u/s they decided it was just sore or bruised from his ventilation procedure or when he dislodged it. After it looked worse and worse, it took tons of persuasion that there was something seriously wrong with my son. It took one special nurse to get the opinion of a new Dr who ordered a new pathologist to look over his previous u/s to come up with the actual problem. It was huge and it was severe, so bad they said if that had leaked into his bloodstream it could have caused a major sepsis. So over the phone I gave the authorization to have them immediately cut his neck open and drain this major lymph node infection. He had a straw sticking out of it and it drained for over 2 days. Austyn pulled it out and he recovered quickly. Many little infections while in the hospital. At just over 35 weeks corrected age, Austyn came home! It was such an amazing feeling to have him home! He came home at 5lbs 2 oz!!

Allyssa's Journey- Allyssa was born and she was just so tiny and perfect. I mean I dont think we could have imagined a more picture perfect baby! Whitney was beautiful and we loved her little chunky smile and her jaundice skin made her look like an Indian Baby. She had this chubby nose and she was perfect for us. To see Allyssa though, was like this perfect picture of what a handcrafted baby. You know the little babies you see people make out of clay, sculpted to a perfection? This was Allyssa. I think we were just blown away at how girly she was and how masculine Austyn was! They looked like twins and believe there was some confusion pictures in the beginning! Sometimes I will say 'which baby was this' especially the first week! Allyssa had several, several infections in Nicu, I honestly think she spent but one week in the beginning where she was not on a antibiotic. The last week she was on she we med free as well. But all the while in between was high doses of antibiotics for infections. Infections inside her causing her to have severe bradycardias. Never apnea episodes just bradys. Daddy was convinced it was hm and her heart would skip a beat when she was touched and I was convinced it was him that she caused her to feel so much love that she forgot to breathe and she forgot to live. Daddy took her breath away! Its' magic those two, from the beginning on I just had this amazing connection to Austyn and he had the amazing connection to Allyssa. Bonded at the soul! But she struggled at about 33 weeks when she began to eat from a bottle. It was a mess, it was bad the whole not knowing how to suck and swallow and breathe. Way too much for her and she took an extremely long time learning. She was oxygen free up to till 33 weeks when she her health began to plummet. Bradys were not going away, happening just the same in frequency despite the caffeine they pumped in her veins. So they spent 3 weeks after Austyn was home just getting her to eat better and to find out where she needed to be with her oxygen levels. We knew she would come home on Oxygen, we were totally fine with that, we just wanted her home. We promised Austyn to hurry up and get better and we would come back and get sissy and never leave her alone. So we had promises to keep. So many times I would leave her station and can go and cry in the restroom or better yet when I was pumping in the nursing room. Was she ever going to come home? Why were they holding her hostage from me? it got to be ridiculous the last week or so there was no point of her not coming home. Especially when I tell you something you will probably not hear from anybody about any baby. But something happened to Allyssa about week 36 or 37. I went to see her and I was devastated at what I found. My daughter, my sweet precious daughter who gave me the cold shoulder, my daughter lost something that day, she lost some soul, some spirit to survive, the human feeling of wanting to be touched and loved. I'm sure your thinking 'what'? I picked her up and she would squirm and cry and whine and she just hated everything about every touch and every feeding when I went to nurse her and she just lost all comfort from me. I was confused, I was hurt, I was fearful, I came home and remember telling everyone that Allyssa is losing her spirit up there. I began to become frantic in thoughts that my daughter was wilting away in a box up a the NICU, not enough human contact, not enough love to sustain her. Not enough of mommy and daddy. She needed to be home and she needed to be with us so we can take care of her! I began to become so demanding on Dr's to define a timeline for discharge. It took another 1-2 weeks and I think at that point, it had spiritually changed her soul and heart. Allyssa came home on Oxygen and she remained on continuous oxygen 24/7 up till Christmas. Born on July 29 and Discharged I believe on October 5, Allyssa spent 9 1/2 weeks in Intensive Care.

I want to take this time to give thanks to God for my babies and I thank him daily for my blessings, I honestly do. I want to thank my husband that despite what I thought was one persons fault over another God made it all ok and he took care of us and our children. I dont feel its either of our faults now. Don you were my Rock. Despite our hardships we came together and we bonded during what could have rocked most marriages to the brink of divorce, we rejoiced and we came together, we celebrated and cried together and we are a stronger couple because of this. Thanks for letting me cry and for hearing my fears and for listening to my rantings or my post pardon blues. To all my friends those I have met and from those that I have never seen before. You gave me love and support when people even in my family did not. You were always there for me, one by one I talked, I shared and I cried and you let me with open hearts and minds and It will never be forgotten, I know I could have never have made sense to any of it unless I wrote it all out for you to hear and feel. I love so many of you very much.

If there was one thing I wished I could have taken from all of this would have been a rejoicing or a bringing together of our families. This didn't happen and Don and I are saddened by our often lack of support. There were a few times when we had a hand and for that it gave us a sense of hope for what should have been the entire time. I take no hard feelings from any of it, we know everyone leads very separate lives and we know each person struggles with their life, but I think what I know from this would be that I will be there for you if you need me. Even if you were not there for me, I will not hold this against you. I will take your children if you have children in the hospital, I will take them in and I will treat them like my own, any time of night, any time of day. I will hold you up, I will lift your spirits and I will hear your tears, your fears and I will whisper to you that it will all be ok.

I take from this a better me! I am a better mother a better wife. Or so I'd like to think. I suffered from post traumatic stress from these events. As our twins first year Birthday approaches I began to panic and ponder all that we went through. I'd weep and cry at the thoughts, I was surely wallowing in self pity for our hardships. Something has changed with all of this and I see the golden light behind all of it, my silver linings as I mentioned in my first blog 2 days after the twins were born. God has divine plans, we were to suffer and we were given a gift and he saved us and he saved our babies and for that all of this was way better than what could have been without his divine interventions. Kate McRae a little girl 5 years is suffering from a brain cancer, began praying for Kate every night, its through her journey in the last 3 weeks she has gone through more than most adults ever have will ever have to and this beautiful family seeks prayers and love for their daughter. How can I cry over tears that have already been shed. I must not look to my past as a tragic one, I must look back on it like this big beautiful journey and the end result is life and love. My twins are turning one and they are here and they are perfect and I would not have changed a thing, at the end of our road and our journey it lead to happiness and peace. Kate you and your family have given me something that I will never forget, you opened my eyes to God Grace and his love, what I always knew but now understand. God Bless you everyday Kate.

Please send your prayers to Kate and her family!

http://www.caringbridge.org/visit/mcraekate

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