I started writing this letter at 19 weeks gestation. Every week after, I added to it, until he took his last breath. I read it now and know all the words I had written were in that exact moment. I never knew what the next week was going to bring and I’m glad I did it this way. Because even though it wasn’t the ending we could have ever imagined, I still had hope and I don’t know how long Julian would have lasted inside of me if I didn’t.
My Sweet Julian,
At 19 weeks, at our anatomy scan, we were told you had fluid around your lungs. Pleural effusion is what they called it. So many questions, so many tears. Would you be okay? What does this mean? I cried. Heavily. Waiting for the doctor to come in seemed like an eternity. It was at this very moment, in the waiting, that I decided on your name. Daddy already had picked it out, but I wasn't so sure. I had another name in mind. But after hearing this news and waiting for the doctors to emerge, I needed to talk to you. So I first said the name I had originally thought I wanted for you as I prayed; it didn't feel right. Not at all. I then said, "Julian" out loud and a wave of calmness came over me. I knew in that instant that would be your name; the most beautiful name to us.
The doctor finally came in, in what seemed like eternity. We were given possibilities of what it could be: infection, genetic abnormality, or a blockage. We were given options: amniocentesis, termination, or a simple blood test to rule out infection. Without hesitation, we chose the latter.
Our son, you were so perfect that day. So much kicking that they told me countless times how we’ve got an active one! I saw you up there on the screen, you wouldn’t stop moving around. Your growth was on target, your brain, heart, everything was perfect. Your heartbeat was 132 bpm. Termination? This was not even a thought, after all, there you were, not phased in the least by this fluid surrounding you. We chose life and prayed to God.
We were to be monitored weekly to check and at 20 and 21 weeks, all was stable. Fluid had pushed your beautiful strong heart over just a tad, but not worrisome. Lung development was on target. Infection tests came back negative.
At 22 weeks we were told some fluid had gotten around your abdomen. It could have dripped down from the lungs doctors stated. We were also told that more fluid was around your lungs and at this point, while it was not effecting you in the least (as you were moving and kicking around), they wanted to go in and remove the lung fluid. I was scared. Oh how scared I was. But the risk of not doing it was far greater, because by not doing anything, the fluid could have compromised the already beautiful lungs you had. We made the decision to go forth with their recommendation.
On May 13, exactly 23 weeks, they removed the fluid, and were able to do an amniocentesis as well. 10 cc’s of fluid came out of your little body, but doctors again commented on how you were totally not phased, still kicking and moving around; my fighter. The procedure was successful, your lungs were able to expand to their full potential and your heart was no longer pushed over from the fluid pressing on it, I finally felt like I had done something to help you! However, we were told it would likely come back again.
Shortly after, we found out the first two rounds of genetics came back all negative: you had all your chromosomes and no microdeletions. We continued to wait on one more and prayed heavily.
At 26 weeks we did a growth scan, you were 2lbs 6 ounces, 128 BPM, 85th percentile, my big boy! No fluid around your abdomen anymore! But the lung fluid had started to come back, slowly increasing but not enough to do another procedure.
At 28 weeks, we received the last round of genetics. We found out you could possibly have a genetic condition with your lymphatic system. It was 5 weeks after your last drainage and still going strong without one, as it had been stable for the last few weeks. There you were kicking away HB 124, not phased in the least; our strong boy. Again, I cried, but I just felt it in my heart you were going to be okay, that you were a fighter, and I continued to pray. Doctors decided to go ahead and give me steroid injections for your lungs based on these results, just in case you were born a little earlier.
30 weeks was another growth scan. So chubby they kept saying! 88th percentile, weighing 3lbs, 15oz! They even saw hair! There you were, grabbing at your feet, moving all around. Fluid was still stable, it had been 7 weeks since the first drainage.
31 weeks we got the results back in regards to your lymphatic system. Apparently, I have the same exact genetic misspelling that you have baby boy. Part of me felt so guilty for giving it to you, and part of me felt relieved because if I had it, and was healthy, that meant you would be too. Seeing as it was a dominant gene, means I had a 50% chance of passing it on to you and your brothers. With that being said, they down graded it to “variant” meaning that they aren’t even sure if this spelling change has anything to do with fluid at all or has any effect on life in general. There’s not much research on it so a conclusion could not be made. You kept growing and doing your thing and we kept praying to God.
33 and a half weeks we did another growth scan. Drum roll please....a whopping 6lbs 1oz, 97th percentile! Woah baby! We saw your chubby cheeks and chubby arms and legs! Made me a little nervous as to how much you were going to be when you arrived! Lung fluid was no more, no less and they told us the next drainage would be during preterm labor, so that they can take some off right before you were born. They talked about inducing me at 39 weeks if I had not had you by then.
A few days after, we toured the NICU and became prepared with all that was to more likely come once you arrived. This was all very new to us, your brothers were born without needing any extra care, and I see now how blessed we were for that. The doctor prepared us for the likelihood that I wouldn’t be able to hold you right after you were born, how you would more than likely be rushed to be monitored and taken to intensive care right away. How you will very likely have trouble breathing on your own and need help and would need another lung fluid drainage. They stated it could be weeks or even a few months before you came home. So. Much. To. Take. In. I’ve never experienced a birth like this, how can I not hold you? Not take you home? Not breastfeed you right away like your brothers? All these thoughts came rushing in, but I had to remain strong and keep telling myself that you would be in the best of hands. We would get through it. I knew you would show the world the true miracle you are.
At 34 weeks, they said I had way more amniotic fluid than normal. We did a stress test and saw I was contracting every few minutes but not feeling them. They had me come back on Friday 8/2, two days later. You were great in the ultrasound but my amniotic fluid had greatly increased and it needed to be drained.
Off to the triage I went. They told me that a drainage can cause preterm labor, but so can the increase in fluid. I had already started contracting but they were hopeful that after the drainage I would stop. But I didn’t.
You were born 8/3 @ 12:28am, 34.5 weeks weighing 7lbs, 7 oz. I was able to hold you for 10 seconds before they took you away. But baby boy, you were sick. Despite all the activity inside of me, you didn’t know how to survive without being attached to me. The fluid was too much for you to handle. You held on for 36 hours.
But 36 hours wasn’t enough, could never be enough, will never be enough for me, for daddy, for your older brothers, for anyone.
You slipped away in our arms, as we hugged and kissed you so. Our hearts are forever broken, this wasn’t expected but God needed you home.
Julian Daniel, you’ll always be our third son. I’ll always be your mommy and you’ll forever have our hearts. I promise to celebrate you, to honor you, to talk about you, to never ever forget you. Until we meet again, our angel baby.
My love forever and always,
Mommy
My heart aches for you and your family. You are a blessing to all who know you.