When I was pregnant I had too much fluid, my doctor said there was nothing to worry about. When i was in labor there were complications and she got stuck at the shoulders and her hands were clinched shut. Now she's almost 2mos and the docs say she is hypertonic. Her brain wasn't developed normally and the MRI showed bleeding but no infection, she has shallow breathing and sometims she stops breathing when she cries. She has secresions that she can't swallow and sometimes chokes on and is being fed through a tube. Her EEG showed no sign of siezures. Her chomosomes came back neg. She's had 2 blood transfusions due to being anemic. She has high blood presure cause unknown, tests neg. I never got to bring her home. She's still in the nicu and the doctors are worried about her survival. Her diagnosis is still unknown. They've never had a case like my daughter they say.... Has anyone experienced this?? Please any info will help, Thank You!
The doctors are wanting us to make a decision whether to give up or to keep fighting. They will need to do surgery and put the tube through her throat cause her breathing hasn't improved. They would also need to put a feeding tube in her tummy for long term. Don't know what to do...not ready to give up..
Hi Y.,
I so sorry this has happened to your baby!
Try to find a local Early Intervention program in your area. The services are free. They will provide therapists and also help you locate other services she and you may need.
Good luck and God bless.
Victoria
I can't speak from personal experience, however 2 of my good friends dealt with a similar issue during the deliveries of their babies. Now 2 years later, one of their children was diagnosed Cerebral Palsy and the other had seisures, but was able to control it by medication. Both of them are walking and talking (due to extensive therapy) but they are both amazing healthy children. Good luck to you. My prayers are with you and your family.
I would recommend you find a pediatric chiropractor to check your little one. Often times birth trauma will cause imbalances in the spine and subluxations will occur. Subluxations can affect all bodily functions and even prevent babies from growing and thriving well. if you go to www.icpa4kids.org you can find a doctor in your area....
best of luck!
C. Tanaka, DC
My prayers for you, your family, and your little angel. God Bless.
Yes - our son was born preemie and was not breathing at birth despite the best medical care. He was in NICU on the breathing tube, etc. and his heart rate would sometimes become arrythmic. After he was taken off the tube, he would sometimes stop breathing as well, but only momentarily as he was on monitors and the staff were quickly able to stabilize him.
He also had difficutly swallowing and never fully developed a suck/swallow reflex which has made feeding very difficult.
He had an MRI and was diagnosed with PVL, cerbral palsy and legally blindness as a result of the complicated birth. He is also hypertonic mostly in his lower extremities and quasi-palegic.
He has been evaulated by the Regional Center Early Intervention Program and California Children Services Medical Therapy Unit, as well as a private pediatrician and pediatric neurologist. He now receives physical and occupational therapy as well as infant stimulation and has made remarkable progress and the doctors expect him to walk by his second birthday. We do not know at this time whether or not he will be mentally retarded, as he is only 16 months old.
I know what you are going through. It is heartbreaking that you too have to endure this. NICU babies are fighters and every day that she is there makes her stronger. The newborn brain is amazing. Our neurologist told us that even though the damaged tissue can never regrow, other parts of the brain can take over and be just as strong as the damaged areas. Her little body is trying to stabilize after all she has been through.
I will pray for your family. If you have more questions or need to "talk" please feel free to e-mail me.
K.:)
I'll keep you and your sweet little girl in my prayers.
Hi Y.,
I don't have any extra advice as the other ladies have offered some good suggestions. I just wanted you to know that I'll be praying for you and your baby and please keep us posted on her progress.
S.
.
My son spent 10 weeks in the NICU as a preemie, but also experienced brain bleeds within the first 48 hours of life. His diagnosis is hypertonia/cerebral palsy, effecting mostly the left side of his body. When the doctors talk about the brain it can be really scary and overwhelming because they can't really tell you what to expect and have to inform you about worst case scenarios. The great news is that your little one's brain is not fully developed and still has more growth and development that will take place and generate healthy cells in the next several years. I am not an expert, but can say from my own experience that holding the baby as much as possible in the NICU and the skin to skin was very valuable. There are a lot of resources through Early Intervention and hospital programs to help you connect with the right people to help your little one be successful. Early physical and occupational therapy can be extremely helpful. They can work with the baby on swallowing and feedings, etc. at this stage and so much more as they get older. With this diagnosis the baby will qualify for insurance provided by your state that will assist with covering the therapy. My son is now 2 1/2 years old and walks, talks, laughs, runs, and is a joy. We do the therapies and work with him at home and it really helps. Try not to be overwhelmed! Hold and enjoy your baby as much as you can while he/she is still in the NICU and be proactive about getting the right services when the baby goes home and you guys will do great! You will be in my prayers. Feel free to email me if you have any questions.
That sounds like a horrible thing to have to deal with. You have my sympathy and I wish you and your little one well.
