Well, the first few weeks of the nicu were about like getting into a fist fight with someone much bigger, stronger and more capable than you. You keep fighting and even if you get in a good blow, it doesn't seem to matter bc the retaliation punches hurt much more and seem to batter down that sense of accomplishment. It doesn't matter what anyone else's experience taught them, a nicu parents journey is alone and all lessons must be learned through their own experience. It's difficult to share in another persons success even if they "understand" bc all that matters to you is your own baby. Every preemie who has survived with no complications only adds to the positive side of the statistics which only means that the negative side of the statistics has more and more room to fill. Every unsuccessful story only shows what possibilities are ahead for your little one as they fight. It's much appreciated that people care enough to try to make you feel better, but it just doesn't do much to encourage a broken heart. People don't realize that they can't mend the heart if they're not the one that broke it. The first 3 weeks I battled post pardum depression, only I didn't know that's what it was. I could not get past the consuming thoughts that my womb was empty when it longed to be full of little jabs and flips as it should be, that my heart was laying vulnerable and clinging to life in an isolette an hours drive from me, that the future of my newborn that I had planned and prepared for with joy and excitement was now looking grim and bleak. At 27 weeks gestation, a newborn has many serious hurdles to overcome. The thing I learned during my weeks researching day and night while on hospital bed rest though is that bc of the condition that prompted Jaxons premature delivery, pProm (preterm premature rupture of membranes) Jaxon is not simply considered a "27 weeker". You see, during pregnancy, the amniotic sac,which the baby lives inside of, is sealed and filled with amniotic fluid that the baby sort of "swims in". During the second half of pregnancy, the baby uses that amniotic fluid for most all of its organs to develop, particularly the lungs. Well, bc I ruptured, (my water broke) I lost all my fluid. Weeks 18-28 are the most crucial lung, kidney and brain development stages but my water broke somwhere between 18-21 weeks which means his organ development from that time forward was stunted. Although he was born at 27 weeks gestation, bc of the loss of fluid, his organs were not likely to have continued developing at a "normal" rate after I ruptured so the first few weeks in the nicu were a guessing game to try and figure out just how much development actually was able to occur. Because I almost always managed to have small amounts of fluid and by the grace of God Jaxon was ALWAYS head down (an incredibly rare occurrence for a baby to maintain a head-down position for that many weeks at that stage of gestation) we knew that his lungs were further along than my rupture stage, but only time could tell just how far along they were able to develop. We were lucky that he was a big baby for his gestation because size does always help. The guess that remained pretty consistent by his doctors and nurses was that his lungs had developed to about the stage of a 25-26 weeker, which is REALLY good considering he was only 27, so they did manage to get most of their development accomplished in those extra few weeks he managed to stay inside me. A lot of pPROM babies are not so lucky to get that much. I truly believe it was God who kept him head down during that time in order to save his life. Had he not had his head down, he would have not had the amniotic fluid around his mouth to be able to swallow it and his lungs may have possibly not even developed beyond the point I ruptured meaning he would very likely have not survived.
I feel so desperate for normalcy right now but in a strange way, I also feel blessed to be a witness to the fire and strength in my little guy. Every day of his life, I will tell him, "you can do ANYTHING! I have seen you hurdle right over the impossible and overcome!" There is something incredible about walking through this experience with him. I feel like I am watching miracles unfold right before my eyes every time I see him take in a breath and let it back out. I am so ready for this phase of his journey to be over with but I will never forget a moment of it for the rest of my life.
****The previous portion of this post was written the end of January. I never posted it as we were at that time still dealing with a very busy schedule. Below I have concluded with information I have gotten through all my research about pPROM***
PPROM is not a very widely known pregnancy condition. It is when a woman's water breaks before 37 weeks of pregnancy. Women who rupture 34 weeks or later tend to not think much of it beyond that their water just broke early. This is because although a 34 weeks baby is still likely facing nicu time, the prognosis is very good at that stage of pregnancy so there is not as much of a desperation for doctors to keep the baby baking.
***Please know that through my research, I have found that it is difficult to get consistent statistics as PPROM has not really been researched formally by any professionals. These statistics that I provide are the ones that I saw presented with the most frequency. Most statistics I have found are still really close but may just not be the exact same.***
Before 34 weeks, and particularly before 28 weeks, rupturing is SUPER rare. Rupturing before 37 weeks happens to 3% of pregnant women, however, happening before 24 weeks happens in less 0.04% and can be traumatizing for a mother, whether a first time mom or a veteran. As mentioned above, a baby who has little to no fluid has many setbacks beginning primarily with lung development. In a normal pregnancy, the beginning of the second trimester is a HUGE step in organ growth. The amniotic fluid is the main component in helping them in this phase. The baby is sealed in the amniotic sac which is filled with amniotic fluid. That fluid surrounds the baby's face and the baby learns to swallow the fluid and the urinate it back into the sac and then swallow it again and the cycle continues on and on throughout the entire pregnancy. This cycle is the process of growth and development for the brain, lungs, kidneys, bladder, stomach and liver. You never really realized how much work your body does when you drink a glass of water, huh? For the underdevloped baby in utero, the organs are made during the first trimester but they spend their following weeks actually learning to do what they were created to do, however, when a woman ruptures, she loses that fluid and the baby no longer has it to swallow meaning all the processes that should be developing with the fluid are halted. With great care, the pregnant woman can, through either IV fluid or drinking TONS of water every day, help keep small amounts of fluid in the sac but there is no guarantee that this super hydration will work as when there is a rupture, any fluids that go into the sac will come right back out through the hole in the sac. A baby born at any gestation who has had no fluid, has a high chance of having still underdevelopments with their organs because although they continued growing in utero, their organs may not have continued developing and "practicing" their functions because of the lack of fluid. This is strongly dependent on how much fluid was maintained post rupture as well as the gestation of rupture and gestation of delivery. For this reason it cannot be assumed that a woman who ruptures at 17 weeks and delivers at 36 weeks will have a healthy 36 weeks baby. Although making it so far does give the baby a much better chance with the statistics, it still must be considered how much fluid the mother had throughout her ruptured period. If she had no measurable fluid the entire time, there is a good chance that the baby's lungs were never able to develop and are no more developed than a 17 weeker, however, if there was plenty of fluid around the baby's mouth the entire time, there is a good chance that the baby could very well be nearly 36 weeks developmentally. If the fluids were back and forth then the development is likely to be somewhere in between 17-36 weeks developmentally. The primary organs affected by this condition are the lungs. This is because the lungs while in utero, must learn to expand and retract and their practice of this is fully dependent on the fluid swallowed. It is called "practice breathing".
PPROM is the primary contributor to pregnancy loss. Once a woman ruptures, there is a >60% that she will deliver within 4 days. Those who beat the odds are not expected to make it more than 2 weeks as a loss of amniotic fluid causes an incredible number of complications and risks to mother and baby.
I will continue this post at a later date but if you are interested in more facts about PPROM, please feel free to email me!
