For many of you, you have already experienced Jackie’s days with us while I posted in his private Facebook page, “Little Jack’s Great Adventure”. You road with us during all of his ups and downs and you untimely surrounded us with love, so much love during our darkest of days. This decision was not an easy one…the decision to share Jackie’s birth story…followed by his life story in the NICU. These are extremely emotional days to reflect on, to write on…but the truth is I relive these days very often…they are memories that will never fade…they will stay with me to the very end.
I will be using my Facebook posts to help keep my memories in order and to hopefully be a starting point for me to provide a little more insight to what our days were like spent with our son. This will not be easy…to write…nor to read. But I know that so many of you long to have some piece of these days. You long to know what he was like and what the NICU was like. I cannot promise…I cannot promise how much I will be able to share…I cannot promise if I will be able to finish…but I will promise that I will try. I will try to provide the most accurate account from my memory and from my posts from Facebook.
I started Jackie’s private Facebook page in late November. It had been a long time coming and though my husband and I struggled with knowing when the right time was to share about Jackie’s condition we ultimately decided in late November that all of our family and close friends needed to know what was going on and what to expect. Yes we knew of his complications in August…but it is extremely hard knowing when it’s time to share…we of course kept positive for a long time hoping for the best and that his condition would be just a fluke…we kept our news private for a very long time…until it felt like it was time…the condition wasn’t changing and we came to terms with our little guys journey to the NICU.
I created the Facebook page as a way of communication during delivery, the journey at the NICU, and his recovery after surgery. I shared his weekly appointments that were scheduled leading up to his birth as well as updates concerning his diagnosis. On November 26 I shared,
“While we continue to share our news with family and friends I wanted to be sure that you all had an up to date diagnosis for LJ (Little Jack). In medical terms he has a pericardial effusion of unknown etiology, likely interruption of aortic arch vs. hypoplasia of transverse aortic arch, probable VSD. What this means to us is that we have been monitoring the additional fluid of his heart since his anatomy scan. Three ECHO’s later and the cardiologists have found that there is an obstruction in his aortic arch along with a hole between his right and left ventricles. Once he is born he will have an ECHO done shortly after to verify his diagnosis and to have a clear plan regarding surgery. We are very confident in our team at Cardinal Glennon and are thankful to have all of you to support us during this time.”
My posts continued each week as we continued to monitor the fluid around his heart and sharing of his BPP and stress tests.
November 29, 2016 “Passed his BPP and stress test today 🙂 Mommy however is feeling under the weather today with congestion, sore throat, and drainage…hoping our little man feels better than I do. 34 weeks and counting!”
December 6, 2016 “Great appointment today! Fluid was less around his heart, weighing in at 5 pounds 4 ounces, 33% tile, passed his BPP and stress test. Next checkup is Friday next week at Memorial and we see Dr. Mike on Tuesday December 20th. They are going to be confirming his due date at that time :)”
December 16, 2016 “Jackie was a little stubborn this morning for his appointment as he was not ready to practice his breathing at 9 am, however after 15 minutes of watching him roll around he finally passed his BPP test! Stress test went great as well. Looking forward to our appointment with Cardinal Glennon on Tuesday next week. Thank you all for your continued love, support, and prayers.”
December 20, 2016 “Appointment update: Little Jack is weighing in at an estimate 6 pounds 1 ounce. Cervix is not dilated but it is soft, Jackie is head down and in position. Unless Jackie has other plans we have a planned induction at 10 am Thursday December 29th. We are thrilled to meet our baby boy before the end of the year! Time to get our hospital bags ready!!!”
December 21, 2016 “Change of plans…we arrived at St. Mary’s at 3:00 am, water broke shortly after! We are having a baby!!! I will keep you all posted”
From this post I shared updates regarding our labor process and was finally able to post photos of his arrival at 10:30pm weighing in at 5 pounds 13 ounces and the most beautiful thing we have ever seen.
If you haven’t read the birth story now would be a good time to read about what happened.
In the wee hours of the morning on the 22nd Jackie was transported to Cardinal Glennon. I was able to post a sleeping picture of Jackie after he was all settled in the NICU with his Daddy. Jackie had an ECHO done in the morning of the 22nd and I was given a 4 hour pass to go see my boys! I was finally released on the 23rd from St. Mary’s while Jackie had more scans done. They changed his picline that afternoon and our update from the surgeons was scheduled for Tuesday the following week. Jackie was stable and holding strong.
After Jackie’s picline was changed we received a gift. The nurses brought in a care bear with a very large heart on its belly with a letter. They told us that they selected us to receive this beautiful gift. This gift was from another heart family. Their daughter was born on Christmas in 2012 and they were blessed to have 3 weeks with her before she passed away. They give a gift to the NICU nurses to select a family that is fighting with their baby in honor of their daughter…this letter still brings me tears to this day and is one of my favorite gifts we received for Jackie while in the NICU.
To be honest most of the days in the NICU run together…Doctors coming in for morning rounds, meeting our nurses during shift changes, running down to the cafe for food and breaks from the monitors, beeping…beeping…and more beeping from monitors, and most importantly spending as much time at the bedside of our baby boy! My feet were extremely swollen and I was told several times to sit down…yea right…
Jackie was constantly monitored by nurses. Constantly having his vitals logged, lines being cleaned, medicine being refilled. He was relaxed and slept most of his time. He was holding steady and strong.
December 24th will forever be a day I will remember. For it was on this day that I FINALLY…FINALLY was able to hold my son! That’s right, just imagine you fellow mom’s out there not holding your baby for the first time until 3 days after they were born. A flood of emotion swept over me as the nurses carefully moved his from his bed to my lap. They positioned a pillow on my lab and laid Jackie on top of it while carefully positioning all of his lines. I was so scared to move, fearful that one of his vitals would pull out. On the other hand, I wanted so desperately to remove all of his lines and just hold him close to my chest. It was the best Christmas present I have ever received. I was and am so grateful to the nurse that made this happen for us. That evening my husband and I decided to take the nurses advice and head home for some much-needed rest in our own bed and a shower…we also enjoyed some quality family time at my Aunt’s house.
Christmas morning came and we instantly woke up to get ready to head to the NICU to spend the day with our boy! There was no place we would rather be. I put on a Christmas sweater from my Great Aunt, we had breakfast, and we left to get to the NICU before morning rounds so we wouldn’t miss the Doctors. Jackie’s room was filled with Christmas cheer as I played Christmas music from my phone and sang many of the songs to him. He was visited by his Grandparents and Great Grandma. I am so very grateful that we have pictures from this day…they will be cherished forever. Jack got to take Jackie’s temperature, I was able to finally wash his hair, Jack styled it, and both Jack and I were able to hold our baby boy for Christmas!!! It was a Christmas unlike any other and will never be forgotten. That day was truly a Christmas blessing.
December 26, 2016 “Surgery update: During all of Jackie’s scans his surgeons found that his liver may be herniated through his diaphragm. This is placing stress on his right lung. Best case the liver is just pushed up a little high but not actually herniated through. He is scheduled for surgery tomorrow around 11:30 to bring the liver down below the diaphragm and if needed to patch the diaphragm. The surgery will take an estimated four hours. Actual time of surgery depends on the length of a surgery scheduled before him.
Additional information: with the livers current location his right lung is stressed and underdeveloped. This surgery is to allow his right lung the space to be able to further develop over a long period of time. With his scans the are also having problems seeing the veins that transport blood from/to the heart to the right lung. This may require a special test where they go up through his umbilical cord up to his heart to inject dye to be able to see what shape these veins are in. As mentioned before the surgery that they are performing over a long period of time will allow his right lung to grow.
This is a separate surgery that is needed from his heart surgery. Once he has recovered from this surgery we will begin to speak to his surgeons in regards to when his heart surgery will take place.
Jackie is in great shape heading into this first surgery. Vitals are great and he is on minimal oxygen. Please keep him in your thoughts and prayers tomorrow as he sets out to concur his first surgery. We have the best team of surgeons and are hopeful for a non-complicated procedure and speedy recovery for our precious little boy.”
Jack and I were in no way leaving Jackie that evening. We settled into the room and clung to one another reassuring ourselves that Jackie is strong and that he is in the best hands. Reassuring ourselves that we have done everything in our power…we felt helpless to be honest. There was nothing that we could do besides be present…hold his hands and feet, talk to him, sing to him, stroke his little nose…and to tell him how strong he was and that Mommy and Daddy put him in the best care they could find. We told him what was going to happen…walking him through what his day would be like tomorrow…Jack and I held hands…we embraced this time with our son not knowing what tomorrow would bring…not knowing if this would be the last hours we would have with him. I had started a routine of reading Jackie a bedtime story each night…it was this night that I read him the same book that I always did…choking back my tears and trying not to let him feel my anxiety, my fears…I wanted him to know that Daddy and Mommy were positive and that we knew deep down that everything was going to be okay.
Jack and I spent most of our night trading places at Jackie’s bedside. I continued to pump milk every four hours and we checked in with the nurses each time they came in to take his vitals. Jackie continued to remain stable and strong. He was constantly letting us know that he was doing well.
It was around 4 am morning of and Jackie began opening his eyes for the first time since being at the NICU. He was wide-eyed after birth but he had kept his eyes closed since. I remember having a feeling of relief come over me as I stayed bedside and gazed into his eyes. I could look at this little boy forever…I quickly called over to Jack letting him know that he was awake. We both stood there…holding his hands…talking to him…starring into his eyes. This was a moment for the books…this moment…these few hours with our son are how I choose to remember him. Every time I close my eyes and think of him…it is this moment that I flash to first. This was the strongest he had been…he was ready for surgery.
We love you Jackie!
#ourjackofhearts