Peter and I are lying skin to skin. I can feel his tiny body struggling with each breath. He is using all his strength and accessory muscles to draw air into his small lungs. You can actually hear him trying to pull oxygen in. His little heart is beating much faster than it should because of all the extra work required just to sustain life. His eyes and teeny feet are swollen .. filled with fluid. He’s what the nurse call “puffy” and they tell me it’s been getting worse. His color is as white as the blanket wrapped around him. He is in distress.
I don’t need to take my eyes off of him and look at the monitor. I finally understand what the nurses and doctors have been telling me since day one.. just look at the patient.. look at your baby.. that’s how you will know if something is wrong. Well now I know. My baby is not ok. My son that I held in my arms yesterday.. only 24 hours ago drinking a bottle on his own…is now barely able to take a breath.
A very sick baby in the NICU looks different than the patient I am used to seeing as a PA. In medicine, you start to depend on numbers. If a baby has a fever or a high white blood cell count, you know something is wrong. NICU babies have such immature immune systems that many times their bodies are unable to mount these responses. You cannot “trust” the routine numbers . The signs are subtle. One marker for a sick baby is a low body temperature. I check Peter and he is cool. His temperature has been low .. yesterday and today ranging from 97 to 97.4. His breathing is fast (tachypnea). He is using extra muscles to breathe (retracting). His heart rate high (tachycardia ) . He is swollen (edema). Something is wrong and I am very scared.
His nurse is new to me. I update her on some of the progress we have made in the past few days. He has had so many positive changes. He moved to an open crib ..was taken off of high flow and started on formula and bottle feeds. All of these require him to work harder. He has to work to maintain his body temperature now that he is in an open crib. He has to work to keep his oxygen stable now that he has less pressure from the high flow. He has to work to digest and breakdown formula. He has to work to bottle feed. Could it all be too much for him? I became spoiled with so much good news forward progress. I pictured my babies home with me soon. How could this be happening today?
I go to a bad place fast… I shouldn’t and I try to stop it but I can’t help it. I immediately associate this with his change from donor milk to formula. There is a very dangerous infection called NEC that occurs more in formula fed babies. That must be it.. it is my fault.. my body couldn’t give him what he needed when I was pregnant and now during his first precious weeks of life, I again failed.. not able to produce enough breast milk to feed him. I can’t stop the tears rolling down my cheek .. landing right next to his tiny hand resting on my chest.
The doctors come in for rounds. We put him back on high flow oxygen and inside an isolette. He needs all the support we can give him right now. They stopped his caffeine because his heart rate is too high. One step forward and two steps back in full effect. They put a needle into his small heel and milk out blood to send to the lab stat. I wait, hoping we get an answer.
They reasure me it has nothing to do with the formula. The doctor is concerned about anemia. Time stands still as I wait for his blood test results. I won’t put him down. The doctor came in after what felt like an eternity. “I have good news and bad news,” she says. “ The good news is I know what is causing this..”… my heart stops and she continues.. “the bad news is that he needs a blood transfusion.” I’m almost relieved to know there is something wrong because we can do something to fix it. I know he is not behaving the way he usually does. His hemoglobin and hematocrit went from 9.6/ 27.1 to 7/22 in only a few days. This drop makes it difficult for his lungs and heart to get the oxygen they need. He does not have enough cells to carry oxygen to his tissues. His doctor also explains that this could be causing the edema or swelling. His body has less blood volume so it is holding on to fluid to make up it. He will need to get lasix today too.
Only a few weeks ago, Maurice went through something similar. He had a transfusion and within a day he stabilized. He did not have any reactions. I’m praying the same for my baby boy Peter.
I’m crying more this past week.. I’m missing them more.. my heart hurts a little more. I told James I feel like I finally have “real babies.” They have been here for a little over a month.. but the last few days they have felt so real. They are my sons. Peter looks like a newborn. Mia was only about a pound more than him when I took her home from the hospital. He is in clothes, in an actual crib, I can even hold him as he drinks a bottle and I can pick him up whenever I want. Maurice is getting bigger as well. He opens his eyes and follows my voice. They are my babies… my babies that I get to be with for only hours a day and then leave behind for someone else to take care of. I am not here to tuck them in or kiss them when they wake up. I’m not here to soothe them each time they cry. I’m not able to watch their monitors and make sure they are able to breathe. It’s no longer just ….what if something goes wrong and I’m not there. Now I’m sad because I’m also missing those precious moments when everything goes right.
Peter just started receiving his blood. The nurse put a tiny plastic tube into his vein and now he has blood transfusing into his body. I’m now holding my Maurice and my eyes are fixed on the monitor. If something is going to go wrong it usually happens during the first hour his nurse tells me. This next 60 minutes will go by very slow.
Maurice’s monitor doesn’t look to great either today. They seem to be mirroring each other. Almost like one can feel what Is happening to his brother. His heart rate has been fast from this morning. The doctors say let’s just “watch it” but now I’m becoming concerned. I sent his nurse to get the doctor. I’ll bring it up again tonight at rounds and I won’t leave until I know my babies are ok.. or at least as good as they could be.
I miss my girls and I’m torn today. It’s the NICU rollercoaster. I’m thankful to the mommy in the next room giving me a hug and being there to listen…. I know she understands and feels my pain. I’m so grateful to have my dad with me everyday.. I try to wait until he leaves the room before crying but today I can’t help it. I know it breaks his heart. I thank god for my mother and sister who tell me stay as long as I need to.. that they will take care of Mia and Juliet.
No matter how many days I’m here I will never get used to it. No mother should have to go through this.. I’m having a little pity party for myself today… the low seems much lower after being up so high. I’ll get through it. I will pray and find strength. My only peace comes from knowing we have some answers. Thank you to everyone who reads this and sends us love and prayers. I believe with all my heart it has given my boys strength. They are miracles. I know this drop will only make us appreciate so much more the next ride up to the top.