Day 83: Your Temporary Home

It’s a strange feeling .. being in the NICU ..there is something so beautiful about it.. so peaceful and healing.. I hold my son .. skin to skin. It’s just us alone.. I play soft music to him to try and drain out the sounds of the endless beeps and alarms. I can feel his tiny chest rise and fall against mine… he can feel my heart beat. You look around and see so much love. You see other mothers… broken in the same places.. doing the same thing. After hours of torture apart.. you are together again.

When your baby weighs 790 grams or 1 lb 7 oz and is a “micro preemie” as they call it.. it’s much easier. Everything in the NICU is essential for their survival. They live in a temperature controlled box .. covered in more wired and tubes than you can count. Things in and out everywhere.. you know you cannot take care of that baby. You love your baby.. but you are scared to even touch him. It’s a justified fear.. if you pick up a baby with an arterial line in their belly button there is a chance it can fall out and they will need to be sedated to get it back in .. or , if you move them too fast with Cpap on the water in the tubes can rush to their lungs and they can choke. One of the scariest is the earliest touch .. babies born too soon have underdeveloped nervous systems and too much stimulation can cause brain bleeds or strokes. The only touch they know is the pain from endless procedures and needle sticks.. they begin to associate all touch with pain.. it’s terrifying. It took James almost 14 days to touch Maurice and I didn’t hold them until they were about a week old and had the umbilical lines out. Yes you are sad .. you are so so unbelievably sad.. but you know there is no where else they can be. For me this was also such a important time of action. I didn’t even know what I was feeling because there was so much to learn and understand. The NICU is critical for their survival. I was so scared of their heart and kidney failure .. my missing them was secondary. I just prayed so hard that they would live. Each day I saw them I thanked god they were still breathing.

Things have changed. My precious baby boy does not live in a box. He is in a crib. He does not need the strict temperature control of the isolette .. He just needs to wrapped in a warm blanket. He wears clothes that I bring home and wash and then bring back to dress him in. I come at night so I can give him a bath.. I pick him up myself .. clean him.. he opens his eyes and watches me. He smiles. He knows when I am with him. I know he loves when I hold him because I can see the change in his vital signs on the monitor. His breathing improves. His damaged lungs work better just by being on my chest. How can I not hold him all the time.. he is having trouble eating .. He needs his mother to be the one feeding him. How can I leave my perfect beautiful baby boy alone in a crib .. staring at the ceiling .. a camera above him so I can log in at home and watch him lying there .. ( I thought I would love that camera but I can’t watch it.. not even for a second)… To see him in the hospital alone without his brother or sisters .. It’s becoming too much.

Last night it was way too much .. I cried .. I cried because he is still sick .. his white count dropped and now we are watching for infection.. his retic count isn’t going up as much as we would like which could be a sign his body can’t make the cells it needs to.. his tone is increased which could be a sign of some really bad things I can’t even bring myself to think about.. his breathing is still fast and his little lungs still working too hard.. the state test for his urine amino acids is still abnormal… his eye exam today showed his eyes still aren’t where they need to be ( preemies are at great risk for something called retinopathy of prematurity and can become blind from it.. exposure to high oxygen levels is a risk too) but again no one is too worried .. all of this is “let’s just watch” and recheck it. Any intervention would have risks too. Even the oxygen he is getting can cause toxicity to his eyes and lungs. I’m becoming impatient. I cried because I miss him.. I cried because he is alone .. In a crib with strangers taking care of him. Being with Peter is a constant reminder.. I thank God I have him with me but at the same time still feel so incomplete. I know Peter needs him too. I want my boy home with me so bad.. so very bad my heart hurts.

His feeding is the most important thing right now. He was doing so well and then the vaccination put him back. I’m holding the other vaccines until he can take his bottles. Pertussis was what I was most afraid of and he had that so for now we will just work on getting out of this hospital. He took all his bottles last night but this morning and afternoon nothing. If he doesn’t wake up to eat his food, it is just pushed through a tube from his nose to his stomach. He needs to eat to be able to come home. He’s on my chest now and it’s time to eat but he’s not “cueing” or showing any signs that he wants to eat. His is fast asleep breathing a little too fast. We will just push the food through the tube .. but I will hold him during it. Just rest my sweet boy.

Our time here does have an eerie tranquility to it. Our moments alone like this will be few and far between. I have 4 kids now ( 4 omg??!! ) and at home so many different responsibilities. There’s cleaning and laundry and more laundry.. There will not be hours a day where we could just cuddle. But I promise my sweet Maurice .. when you come home to me I will keep you tucked in to my shirt and close to my heart every single day. You will has so much love… we will make up for every second we spent apart.

I’m sure it’s different for everyone. It’s a rollercoaster .. everyone warns you about the ups and downs.. the good days and bad days.. for me this is by far the hardest of the hard. Many can’t understand it .. until you have lived it. I know so many have had it so much worse.. and my god how my heart breaks for them.. I know we “are getting closer to the finish line ” as my husband says.. I know it’s only a little while longer and no one knows more than me how very incredibly lucky I am to even have him on this earth. I am so very grateful to the bottom of my soul. But how a little piece of my heart breaks every time I have to leave you, there are only a select few who can understand that. Remember this is your temporary home ..’it’s not where you belong 🎶 I will be strong for you as you have always been for me. I will be strong because it is the only choice I have. I love you my Maurice.

4 thoughts on “Day 83: Your Temporary Home

  1. Judy landano says:

    Yes Lisa I do understand what you mean. We can only give you hopes and things we say make you feel better but do understand they are only words to comfort you. Deep down I know you are hurting so bad and yet you make everyone feel good with your beautiful blogs. Look forward to reading them everyday. God bless you your family and your beautiful children.💝💝💙💙


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