Monday, September 26, 2011

Moms talk - PPD, PTSD, Baby Blues & the NICU

Sometimes what makes a mom feel the best, especially one who thinks she may be suffering from some sort of post delivery depression related issue, is to hear thoughts and other words from moms feeling the same way. I know when my PPD started settling in well after we were all home from the NICU, I just wanted to hear that I was going to get better from an understanding person. So this post is just a compilation of moms venting about their issues surrounding PPD, baby blues, and PTSD, following and during their NICU journey. Feel free to comment about your experiences.

"I feel so depressed latley. I dont even want to go to the hospital. not because I dont want to see natalie or take care of her - I just dont want to do it there - I WANT HER HOME. I dont want someone standing over me while I am trying to get her to eat, or asking me every two minutes if she latched on when i am doing non nutritional breastfeeding (breastfeeding during a tube feeding). I am not producing as much milk - which i personally think it has to do with giving her a bottle while I am there. I pump like maybe 250ml a day but they are giving her 320 ml a day - I had some stocked from the week she wasnt eating but I know they have to be running out now so at some point they are going to start giving her formula and that bothers me becasue I dont see how it can be good to give her some feedings of breastmilk with human milk fortifier and then do some feeding with similac special care 24 cal formula. I also think they are feeding her too much at a time. out of the bottle she will eat 32 ml and they will force another 6ml into her with a tube (the difference in formula is waste becasue they always put extra in the tube feed that just stays in the syringe after it is done). then I have to be really really careful moving her because she spits some of it back up - maybe that should tell them she is getting too much??" -Shannon

"Mine was delayed. I have baby blues complicated by bipolar disorder, and while the baby blues typically hit after birth, mine didn't start until we left the hospital, and I'm struggling with them now. Don't get me wrong, I cried 3x a day while he was there, but focusing on absolutely every procedure and test and goal distracted me for awhile. Once I got home and he was doing well, the mood disorder, hormones, and cumulative stress hit me like a freight train." -Becca

"Hi...I used to be active on here, but had closed my account and recently rejoined. My son, Logan, was born at 25 weeks and spent 123 days in the NICU. I had my own "hotel" room in a portion of the hospital that I lived in the whole four months he was there because the hospital was over an hour away from home. There were days when I would dread going to his room, and I felt major guilt over it. For me it was a fear of how his night had gone, or some new infection he may have. When he came home he was on oxygen until he was over a year old and we were homebound for several months. I think I was in survival mode during that first year. I didn't address any of my depression or grief while he was in the hospital or when he came home, and it caught up with me later. Once he was about 18 months old and was doing well and healthy in my eyes I started to recognize the depression. My doctor told me post partum can occcur up to two years after birth, and most likely mine was delayed because I was so busy surviving and taking care of Logan. I have also read some stories about moms having some PTSD when they have had a traumatic birth. I am a therapist myself, so it was hard for me to acknowledge my depression and that I couldn't handle it on my own. Talk to you hospital social worker or OBGYN, they can help you identify if you need any medication or an evaulation for post partum. Best of luck!!" -Jen

"I coped with the NICU through denial. I pretended everything was perfectly fine and helped that Jim was mostly a feeder and grower, but even on the bad days, I just told myself, "This is normal, he'll be fine." Even when clearly he WASN'T fine and even though nothing about the NICU experience was normal. It was about a year later that I started to really be a mess, right around the anniversary of my water breaking. That's when I started bursting into tears over random stuff--like, the if I smelled Ivory soap because that's what they had in the pumping room at the hospital, or one time I went to check on Jim and I realized his bed is pointed the same way that his crib was at the hospital, so it was like looking at him in the NICU again. I still do that sometimes, although it's better since we started therapy (DH and I go together--DH has full-on PTSD symptoms like nightmares and anxiety).

This stuff is hard, seriously hard. All the guilt and the anger and the grief and the fear, it's not easy to live with. It is a really good idea to get help, I wish I'd done it much sooner." -Anna

I had moments where I dreaded going to the NICU. I remember one particular day when I was driving there and I was praying. I said, "God, I know we have a LOT to handle and I know I just have face this, but I REALLY need a good day today." It was a good day (it was actually the first day I got to hold her), but that drive there I just dreaded the walk from my car to the NICU.

Still when I smell the soap they use in my hospital my heartrate jumps. I'm not so much nervous, but I feel it. It is ingrained into my very being now. 

"If you doctors are really saying she isn't doing well, they are idiots. I mean honestly... any baby in the NICU who is able to move to a crib and be off oxygen is doing GREAT! My doctors NEVER said anything like, "she isn't doing well." Even on the days we were waiting to see if this treatment worked or she would die. They were constantly positive. On the day we were being discharged, one of her doctors came in and said, "I never wanted to tell you until I was sure she was going home, but Beth had the worst lungs of any child I've seen in my 35+ years of practice who has lived." I was thankful he said it then (when we knew she was going home and doing well) because I know it was a miracle that she is so well now. So, next time your doctors say something like that, tell them you really don't need to hear it." -Sara

"I have post traumatic stress disorder and had postpartum. McKenzie spent 2 months in the NICU and Madison spent 5 months before she passed away. i had a lot of things to deal with. I still can not drive past the hospital without bawling." -Daisy

"I have to agree with the others. In a way I am thankful for this post because I know I am not alone. When my son was born, my husband was in Iraq. He was born at 23 weeks and was a very sick little baby for a very long time. My husband came back and forth a couple times before he got to stay for good. We went through a lot with him coming back from Iraq to THAT. A sick baby. He was having his own issues while I was having mine. We were both on survival mode. We communicated about....never. It was very bad, but oddly enough, I never felt "depressed", I felt overwhelmed and was only able to take things a day, hour, or minute at a time. My son came home on oxygen, an NG tube, and a monitor. It was like the NICU at home, and we continued in survival mode. 10 months after my son came home, DH and I separated. I became EXTREMELY depressed to the point that I literally did not ever want to get off the couch, not even to play with my own amazing son!! It was horrible and I finally got help. I was also experiencing some pretty intense PTSD symptoms, to include flashbacks and severe OCD. After two months, DH and I decided to try again, and we got counseling. All of that has REALLY helped, but it is still hard. I think that as NICU moms we definitely go through a much different type of post partum/PTSD. Hang in there and don't be afraid to get help, and get it NOW before it gets to the point that I let it get to. Good luck!" -Dianna

"I had a significant depression post NICU, and my twins were adopted-they were born at 28w in Feb 09, we moved to the NICU in May 09 for a month, they came home healthy, but I had a 2 year old at the time, a husband doing shift work, and no family to help us out. By Aug 09 I was on antidepressants, and feel better than I have in years. NICU is exhausting, mentally and physically for the entire family. I'm glad we're talking about this, I felt like an awful mom for a long time b/c I had these three (now four) amazing kids, and I was so overwhelmed and exhausted and crying all the time. I didn't feel I deserved them since I couldn't cope. Once the meds kicked in, I felt great and got my resources to gether and we're coping and thriving, but those first few months home with the twins were very dark." -Marie

Saturday, September 24, 2011

Holidays With Preemies

Holidays with preemies The holidays can be a fun but sometimes difficult time for the parent of preemies. Smack dab in the middle of RSV season comes a holiday that usually involves celebrating with family and friends. It can be hard to spend holidays without everyone with you and if you are allowed to be in groups, you have to remain ever vigilant about hand washing and any other issues you might be facing with your preemie. Here are some tips and ideas for celebrating the holidays with your preemie and enjoying the season despite the challenges we face.

Keep it small - Even though you may normally celebrate with large family gatherings or holiday parties with friends, don't forget that this is RSV season. Try and celebrate with just your immediate family or keep the gathering very small. For parties, either find a babysitter for your little one or forgo attending parties where you can't control who is there (or how healthy they are).

Celebrate - Even if you are just celebrating with your husband/wife and kids, still create a festive environment. I've talked to several preemie parents who have said "why bother if it's just us" but trust me - you are worth the effort too! Make a special meal, follow the holiday traditions you normally have and still take the time to simply celebrate how far your family has come this year.

Let your preemie be has involved as he/she wants to be - The holidays can be overwhelming for all us but especially to preemies. The lights, the excitement, the people, the noise - it can all get to be too much. Be mindful of your preemies' cues and try to make sure they don't get too overwhelmed with all of it.

Have some fun - Even if you preemie is small and doesn't really understand what's going on - still keep him/her involved in the holidays. Keep your preemie in the room with you while you open gifts. Let your preemie play with the wrapping paper, ribbon, boxes or anything else that grabs his/her attention.

Capture Growth - The holidays are a great time to take an annual picture that shows just how much your preemie has grown. We use a stocking that in our son's first year he could fit inside of and now he just holds it up. A great reminder of how far he has come. Other great ideas are a special ornament, hat, candy cane, decoration or anything else that you have around the house. Enjoy your little miracles!

Sunday, September 18, 2011

October 1st-Family & Angel Event

The God Of Miracles

The God of Miracles The overhead light from the incubator cast an angelic glow over baby John's tiny body. It was quiet and dark in the pediatric unit despite the many premature babies that had been born. I stood gazing at the miracle before me. My nephew who had been so anxiously awaited for was born at twenty-six weeks. My mind jogged back to when my sister first told us she was pregnant. We were all excited since this was going to be the first nephew/grandchild born in our family of five girls. I envisioned a bright and chubby baby to spoil whenever I wanted. Instead, I had traveled for hours to be with my sister after her emergency c-section and was standing before my nephew who barely weighed over a pound. The music box chimed out "Jesus Loves Me" while I bit my lip to fight back tears. I cried out to God- "Why? I don't understand. It's not supposed to be this way." He looked so tiny and helpless. I was almost afraid to breathe. Through my tears I heard God's voice resounding in my ears- "Do you trust me?" This was not the first time I heard him ask. There had been issues with money, relationships and decisions where I needed to relinquish control, but never had I trusted him to pull a life from the jaws of death. The music box chime ended and drowning the silence now was the rapid beeping of the apnea monitor just above my head. Politely a nurse came by and gave John a gentle shaking. "What is that?" I asked. She responded, "Most premature babies have apnea. They sleep and forget to breathe. We just give them a little nudge to remind them." My outlook on the situation grew even more grim. Again, God's voice came- "Do you trust me?" I thought of everything that he had done for me. The nights that I had no one, but he was there; the times he cared for me and loved me unconditionally. "Yes." I answered. I will trust you." Peace and a new boldness of faith came upon me. Physically there was nothing I could do for John, but I could pray for him. I could believe God. So, from that moment on the decision was made. I was going to believe God no matter what the situation looked like. Some people called it denial. But, there was no denying that the outward circumstances looked grim. I chose to trust God and have faith that he was bigger than any problem that John would face. The bible became my best friend. I recalled the saints of old who faced impossible circumstances: Abraham, Noah, Moses, Joseph, Daniel, Ester, Paul and even Jesus himself. Their faith and perseverance became comfort and inspiration to me. At the time, my sister and I were staying at a nearby Ronald McDonald house. We quickly became connected with each family staying there. Though each situation was different, the affects were similar. There were tired bodies, broken spirits and hearts full of anxiety. Yet, at night when I would lie in the bed so unfamiliar to me, and lift my prayers of faith, the presence of God would surround me and hope would enter my heart. Each day we would walk the short distance to the hospital and every day they would tell us that John had gained an ounce overnight. In our excitement they would remind us that most babies who were as premature as John was, were prone to infection and to become joyful was to only bring ourselves to a place of great disappointment. I would only smile knowing that God was in control and he was just proving it to me. Every day from then on was touch and go. Some days he would gain weight; some days he would lose weight. On one occasion he had lost weight overnight and had several apnea occurrences. I could tell that it was weighing heavy on my sister's heart. The nurse on duty walked up to the incubator admiring the "Jesus Loves Me" musical toy block the aunts had purchased for him. She smiled "That's wonderful." I nodded. She spoke " John, what a strong, solid name, it fits him perfectly." The gold cross around her neck seemed to illuminate when she smiled and winked. I almost gasped at the love of Christ I saw on her face. Learning to trust God with a life as fragile as a baby born at twenty-six weeks was the one of the hardest trials I ever faced. Seems silly when I think about it. The God who cut a dry path through a raging sea; the God who took a lowly shepherd boy, five stones and a sling shot and made him a warrior; the God who delivered Peter out of a guarded cell; is the same God who cupped his massive hands gently around a frail body and breathed life. The same God who laid his hands upon the lepers, the outcasts, the lame placed his hands upon my heart and said "Fear not, only believe." Today, John is a healthy, talkative and intelligent five-year- old. Every time I look at him I remember the past, yet I can't help but think of the future. He was the best teacher I ever had. He taught me to have faith, he taught me that God cares, he taught me that we are not here by mistake or chance, but by the grace and love of God. Most importantly, he taught me humility. For apart from God I can do nothing, but with him nothing will be impossible. We are not in control, but when we loosen the grip from those things we cling so tightly to, his tender voice will cut through the icy sting of disappointment and give us the courage, strength and faith to face the trials of life head on. One day someone asked me if I believed in miracles. I thought for a moment. "No." I answered to the surprise of the one who asked. Then, I continued " I believe in the God of miracles. " (c) Darlene All Rights Reserved