You Are Stronger Than You Know...
Life will never be the same after having a NICU baby for more than one reason. However, it makes you stronger than you knew was possible and it gives you a new appreciation of life. It's not an easy journey, but it's a journey that you must embrace.
Our daughter, Kaylin May was born at 22 weeks and 6 days and only weighed 12.8 oz. As of today, she is a smallest surviving preemie that Hillcrest Hospital has ever seen. During our 130 day stay, we had many ups and downs along our journey, some days were certainly harder than others.
Kaylin is the epitome of a miracle! She was given a less than 3% chance of surviving without any disabilities Kaylin was lucky to not have brain bleeds, infections, gastrointestinal issues or skin issues. Her PDA closed after one round of Tylenol, and she only required one round of steroids to be extubated at 45 days old. She had 12 blood transfusions within the first couple months of life. The main complications she experienced were related to her respiratory system and her eyes. Her lungs surprisingly matured faster than expected and her oxygen was completely removed after 118 days. She did require eye injections in the NICU and laser surgery shortly after coming home to correct her ROP. She wore glasses for a short period of time, and surprisingly her eyes improved enough to no longer require glasses (crazy!). Kaylin also had a large ASD (congenital heart defect) that miraculously closed on its own, which is not common at all. Kaylin proves that nothing is impossible.
Kaylin was a twin. Unfortunately, at 16 weeks she lost her brother to a rare genetic abnormality. Having a triploidy fetus with a partial molar placenta, along with a viable twin has a less than 1% chance of occurring. This shows how special she really is! We deeply miss her brother, but he is now Kaylin's special guardian angel.
Every NICU journey is different and no two babies are the same. However, no matter the length of stay or complications that may arise during your stay, one thing holds true. That is that it gives you strength that you never knew existed. There are going to be days that you do not think that you can push forward and that you don't have the strength to continue. I promise you that if you look at your precious child, and the strength that they're showing, it'll give you the strength to keep going and fight alongside them. Preemies are strong, but they also need your strength too. They feel your presence, they feel your stress, but most importantly they also feel your strength and your love. It's okay to take time for yourself, you need to take time for yourself. And do not feel guilty for doing so. Whether it's taking some days away from the NICU, pampering yourself, having a date night with your loved one, seeking medical / professional help or simply just walking away for a few moments to rejuvenate. They need you to be healthy in order to care for them. When in doubt reach out to friends, family and the NICU staff. They are your village. It is true when they say you need a village to get through this journey, but the village surrounds you and they will never let you down!
Kaylin is now 2 years old with no complications. She is a very happy, energetic, intelligent little girl who truly loves life. In 7 short weeks, she will be a big sister to a little sister. All in all, there is life after the NICU. Once again, reach out to your village when you need them and find that inner strength that we all know you have!!!
-Guest post by micro preemie mama Tonia