Dear Tennessee Grace

8:58am August 29th. You have been doing amazing! Tolerating your increases in milk intake, active, beautiful heartrate and respiratory rate, learning to use your pacifer and impressing everyone in your NICU pod. This morning you have your brain ultrasound and recheck heart echocardiogram. Premies are at risk for brain bleeds called IVH 😦 This is due to underdeveloped blood vessels. This can be mild or severe. If severe, this can cause disabilities. Your heart echocardiogram is to recheck you PDA, the large hole you have in your heart. If the medication doesn’t work, surgery to close this hole will be needed. This is a big morning. Mommy’s heart is again full of stress and nervousness- praying for the best but constantly worried. Mama and daddy are usually at the NICU by 9am but this morning we decided to come in a little later to give the doctors time to do all thier testing so we could hear the results instead of being there while the testing was being performed.

8:58am- “Hello?”… “Hi Rayeann, This is Dr. Lipski and I AM VERY CONCERNED ABOUT TENNESSEE. She had a very rough night, her belly has gotten very swollen, Ive done a few blood tests and xrays and I am afraid we are dealing with something called “NEC”. Necrotizing enterocolitis. Mama tries really hard to just be a “mama” during all this but when my doctor brain hears “nectrotizing” I instantly think tissue death. My heart sinks to my stomach and I begin to sob as she thoroughly goes over her concerns over the phone. By this time, daddy is wide awake and listening to the doctor as well. We have no clue was NEC is or what our next 5 days would look like but when a doctor is “CONCERNED”, I am terrified.

We tell Dr. Lipski that we will be at the hospital ASAP to see you and to discuss a plan and we hang up. I can barely breathe let alone talk and the only words I can formulate to daddy are, “I need to call my dad to pray with us. You’re going to have to call cause i’ll just sob and I want them to know what’s going on.” Daddy calls tata and explains the news and that your doctor is concerned you are very ill and mommy wants tata to pray with her. Tata goes down the hall to get nana. “Janelle- its Rayeann and Steve, the doctor called and Tennessee is sick, she is worried, Rayeann needs us to pray with her.” Tata says a beautiful prayer to bless the minds, hearts and hands of all your doctors to get you healthy and for God to be with mama and daddy during this time.

We rush to the hospital to be with you and to start learning the evil reality of “NEC”. The next five days are complete hell. There’s no easy way to put it. We arrive and take one look at you and we KNOW something drastic has occured in your little body. You are not the same baby we were just cuddling 12 hours ago. You look different, your little forehead has wrinkles from squinting in pain and you seen very unsettled. How can things change so fast? Again, mommy and daddy are new to this NICU life so we have no clue but we will QUICKLY learn that when tiny babies your size get sick, they get real sick- and you were real sick but not as sick as you would get in the days to follow.

Dr. Lipski is an amazing doctor. She never left your side. You won’t remember this time in your little life for 2 reasons, you’re a baby and Dr. Lipski had you on heavy sedation and morphine so you didnt feel any pain. But mommy and daddy remember every second of these 4 days. We clinged to each other more than we ever have during this time. We had to, there was no other option to survive the news we were recieving.

Day 1 was the worst- we were warned that “NEC” is one of the scariest conditions that doctors deal with in the NICU. We haven’t really talked about what this is and how babies like you get it. When babies are born as premies, their little precious tummies arent ready for milk yet, their intestines are still developing and growing. (You are supposed to still be in my tummy, again the emotions of failing you creep in but more than ever, mama has to fight for you so we don’t allow those emotions too far in.) With NEC, it causes a massive inflammatory response to the gut. It can affect a small portion of your intestines or the entire GI system 😦 There is not a definitive cause for it but research has shown that its less bacteria and more inflammation. There are a few things that can make babies more prone to it. Remember your PDA I told you about, your hole in your heart. This can increase the risk because oxygenated blood is returned to your lungs instead of sending it to the rest of your body, this lessens the blood supply to your intestines which can cause intestines to die. Formula milk can also cause increased risk. In your case, you havent recieved any formula, youve been on surrogate milk mixed with the tiny amount that mommy is desperating making for you.

I want to research. I want to look up every medical journal I can find. I want to spend every waking moment learning everything I can to help you. Dr. Lipski knows mommy is a vet by now and tells me not to go online and read. I listened. As desperate as I was to know all about this condition, I had no more room emotionally and mentally to read what the worst cases of this condition could bring to us. I can not even fathom life without you and I could tell Dr. Lipski wanted me to focus on you and your case specifically rather than drown in worst case scenarios. The first few hours of this condition is the most critical. I asked Dr. Lipski how serious this was. Her response, “I am very concerned, her bloodwork and xrays are very concerning. I dont like it and Im not going to sugarcoat this. Some babies can recover, other babies are dead within a few hours. We do not take this lightly. I will have the surgeons involved tomorrow morning.”

30% of cases require surgery. This statistic I learned after meeting the surgeon the next morning. My brain works on statistics, if I know the odds are in our favor, I can relax a little. However, I also realize that you are not a statistic. In vet school I learned that every single case is different and your odds are 0-100%. It is still too early to tell where you land. With NEC, it is not guaranteed that intestines will DIE. Sometimes, in the best case senarios, they can be temporaily inflamed or damage but repair themselves. This I prayed for every second. However, with every second that passed you looked worse 😦 Your little body became of a vessel of illness. You became so swollen and deep red/purple in color all over. You looked like you were fighting so hard for us. It became difficult for you to breathe due to severe abdominal distension. Your belly was tight it looked like it was going to burst. I sobbed at the sight of you. You had blood work every 2 hours, an xray of your abdomen every 4 hours, maintained on a morphine drip for 3 days and heavily sedated. Your once healthy breathing was now replaced with the aggressive ossilator breathing machine. Nurses would walk by and feel sorry for you. The ossilator is only brought out with really sick babies. When staff see this breathing machine, they know that baby needs extra care and prayers.

I hated that you were the most critical in your wing. Daddy and I have spent two nights across the hall in the “sleep room”. This room is reserved for critical patients that need guardians nearby to make critical decisions at any moment. Dr. Lipski set this up for us. After the first day of your illness and seeing mommy cry for hours, Dr. Kipski looked at me and said “Do you want to stay here tonight? I don’t think you want to leave your baby girl” without hesitation, I said yes. Looking back now however, daddy and I know she offered that because she was also terrified, she knew you were critically ill and she needed us close in case you stopped fighting. But you never did! I will never know how someone so tiny can be so mighty!!

By now, Nana and Papa have come up to meet you! You didn’t know it because you were so sedated but nana and papa spent hours sitting by your side so mommy and daddy could rest across the hall. They would give us updates as they came and gave us emotional support we didn’t know we needed. By day 3 of this mess, I had completely forgotten about my body- how it needs rest and how I just went through a giant surgery myself days before. I was pale and barely eating or drinking, milk production had depleted almost completely. Nana was good about reminding me to take care of myself, to take my iron and forced us to go rest. Even an hour nap at this point seemed like 20 years. I’d wake up with a clear mind and ready to listen and digest the next test result. Most x-rays in the following days were “no change”, still so many distended loops of bowel 😦 but no perforation. Perforation was my worst fear. Again this is a big word but basically means a hole in the intestines. When this happens, it means emergency surgery to repair. If its caused by dead intestines, this means “resection and anastomosis” (cutting a piece out and re attaching healthy ends). Mommy performs these surgeries on doggies but the scary part is I never know how much I will need to take out. I always warn clients that best case scenario is I go in and make a tiny incision and repair, middle case scenario is I have to remove a large portion of intestines but its survivable, worst case is “peek and shreek”. This means I open the abdomen and the entire gut is dead, I usually warn of euthanasia if that’s the case. (you will learn all these words when your a big girl- mommy will teach you).

For now, there is no indication of emergency surgery so we continue to wait. Dr. Lipski thinks we will eventually have surgery but not now.

September 1, 24- It’s tata’s birthday! Nana and tata are on their way to come visit you. We arrive at the hospital and daddy just feels “off”. The days of the hospital and 4 days seeing you deteriorate have worn on him. the white walls and constant beeping machines are starting to feel like an asylum. We get to your bed and again, no change. You’re still swollen, you’re still purple. You look nothing like our precious baby girl we were holding and enjoying 5 days prior. It’s a Sunday and Dr. Erik Pearson is the attending surgeon on today. He comes to check on you, as they have done everyday. It doesn’t take him long to make the call. “She’s telling me today is the day, we need to go in and look while she is stable. Tomorrow, she may not be and I don’t want to be operating on her when she’s worse. Let’s go over the options. There’s most likely, likely and least likely. (In my head I know the options I give clients and I’m panicking but I listen to every syllable again). Most likely is I go in and there is dead bowel. Based off her x-ray, I can almost guarantee there is a portion of her bowel that will need to come out. She may have a temporary ostomy. This will give the rest of her bowel time to heal and then in about 6wks, we go back in and re attach her bowel and she recovers fine. Likely is we need to remove a bigger portion of her bowels- depending on how much we take, we may be concerned about short bowel syndrome or she may take longer to tolerate feeds, she may go home with a stomach tube etc, but survivable. Least likely but we always have to discuss it- I go in and everything is dead. At this point, we will discuss “comfort care” (keep you comfortable until you pass away), do you have any questions? I will do whatever I can to take care of your baby girl, surgery will be at 12pm today” Again I start to sob but gather myself instantly to continue to listen intently. I look at daddy because I understand but I want to make sure he does too. Daddy’s biggest fear since you got sick was surgery. I have 12,000 questions but none of them are worth asking. This is our reality and asking why and how are just irrelevant going forward.

11am- Nana and tata arrive. I stay strong and positive for them, reassuring them that you will be okay. I have no clue if you will be or not but I need them to remain calm so you can hear strength in their voices when they visit you before surgery. Tata again says a prayer over you- to give you the strength to continue the fight, to bless the hands of the surgeons, to give them the knowledge and skill to make the best decisions in surgery, to give Dr. Lipski the knowledge to manage your case post operatively. He thanks Jehovah for giving us so many blessings already. Nana comes in to visit. For the first time, Dr. Lipski tells mama and daddy to give you a kiss. “Go over and kiss your baby girl mama and daddy”. We kiss your forehead- swollen and purple but beautiful as ever. We tell you over and over we love you and we are so proud of you for fighting so hard the last few days and remind you to be strong during surgery. It is approaching 12pm, the medical team start to arrive, the signing of waivers start to come. Signing we understand risks and as your parents we pray we are making the right decisions. Its all happening so fast but in our hearts, the last 4 days of hell have worn on us and we are desperate for improvement. We miss you, you haven’t awakened in 72hours, we want our back baby girl. An amazing vet surgeon Dr. Steurer once taught mommy that “a chance to cut is a chance to cure”. Mama was ready for a cure. It’s time to cut….

Dr. Lipski tells us exactly where to sit in the hall so she can find us and update as often as she needs to. She comes out and tells us they have started. Internally, I know it doesn’t take long to enter the abdomen, I imagine its faster in a premie than a doggie. I go back in my mind to the worst case scenario. The “peek and shreek”. When this is the case at mommy’s work, I know in less than 5 mins if its something I wont be able to fix. It’s been longer than that so I know surgeons are evaluating your bowels closely. 15 mins pass and Dr. Lipski comes out, “there is a lot of dead bowel but they think they can remove it. We may have issues later with her digesting or we may not, either way, its survivable. Take a breath mom and dad, I’m going back in to get more info but its not worst case scenario”. Daddy starts pacing the halls. I can tell he has so many questions about the future- none of which can be answered right now so we continue our prayers…

A few minutes later Dr. Pearson comes walking down the hall toward us. His surgical scrubs are full of sweat. He hasn’t met nana and tata yet but takes this time to introduce himself and shake their hands. He sits down (again, I don’t like it when doctors sit down but I already know its not worst case scenario so my eyes and ears are glued to him). “We had to take ALOT of intestines out. Going in surgically today was the best decision. She would have become more ill. Although I had to remove 65cm of her bowel, the two ends that I re-attached appeared very healthy and I am confident that we shouldn’t run into complications with healing. We may have to go in surgically later to give her a stomach tube for feeding if she has difficulty with oral feeds. This should be temporary until her body adjusts. Removing a lot of bowel can make her prone to short bowel syndrome. This involves difficulty digesting and absorbing nutrients but we will get pediatric GI specialists involved if that’s the case. I will be following her case close. Do you have any questions?”… “Doctor is my baby girl going to be okay” (as I sobbed). With tears in his eyes and a frog in his throat he responded “I want your baby girl to be okay, it is still too early for me to tell you she is going to be, but I sure want her to be…” I asked how long it would take for her color to return to normal if this was going to work.. again as he choked up and tears in his eyes he said, “she already looks like a different baby girl mom. I can’t wait for you and dad to see her”

Its been 15 mins since your surgery, we get to go back to see you. this is the moment I realized I would never be able to re-pay Dr. Pearson. He saved your life. We hesitantly peek in your NICU bed. You are still sedated and on the ventilator, you don’t know were here but we talk to you as if you do. You look sooo much better. I can’t believe the difference. Your skin is no longer so stretched on the verge of bursting. You can breathe better and your color is 80% better! How? Its only been 15 mins!! Actually I don’t care how- we soak up the moments of our first positive news in 5 long days. We reach close to your bed and tell you how proud we are, how you’re going to grow big and strong soon and mommy tells daddy for the 1,000th time since you’re arrival that- you need a pony!

If mommy plays her cards right, by the time you’re big enough to read this, you will have been riding your pony for a few years now 😉

Here’s to praying for your recovery and a beautiful post op journey.. GO TENNY GO!!! The next update will be about the beautiful moments of your speedy post op recovery! The entire world is praying for you baby girl, show em what you got!!

Love, mommy