It’s our second morning and third day in the hospital and we are anxiously awaiting the doctor from the hematology department. He is really such a nice man, patient and knowledgeable and he really sits with you and makes you feel listened to and it’s like he is not just “stressing” from patient to patient.
When he finally arrives I’m a bundle of nerves, fearing the worst, hoping and praying for the best. The good news is that he does not seem to think it’s a white blood cell issue which can be very very bad as in capital B, or rather L (a terror I can’t even spell out or let myself think about). Nor does the test show signs of Hemophilia which is another big blood disorder, probably the most well-known and the one you think about when you hear “blood disorder”. Hemophilia can range from mild to severe however and not all patients suffering will “bleed out” from a finger cut. Some people might not even know they have the illness until they get into a serious accident or undergo surgery. I’m still thankful the doctor does not seem to think my baby has any form of this blood disorder, he is still quite worried about her platelets counts though. They are very irregular and they shouldn’t be.
Blood disorders affect three areas, red blood cells; where you have different types of anemic disorders which do not tend to be as serious. White blood cells, where you have the really serious different forms of blood cancer; leukemia and lymphoma. There is also disorders affecting the liquid portion of the blood called plasma. Baby girl’s doctor is worried about her platelets counts, they jump from being too low, to too high. Multiple factors can affects blood platelets counts, some are serious and some aren’t. I hold my breath and squeeze my baby tight where we sit in the rocking hair.
There are several blood disorders affecting platelets including, Thrombocytopenia, meaning a low number of platelets in the blood. This disorder can have different causes but is generally not serious. Baby’s doctor does however note that her blood platelets count is sometimes too high, also ruling out Idiopathic thrombocytopenic purpura, causing persistently low number of platelets in the blood where abnormal bleeding can occur. But he also reminds us that sometimes her platelets count are really low.
There are rare blood disorders like, Thrombotic thrombocytopenic purpura, causing a low platelet count, but she can’t be tested for the rare ones yet because, well they are rare and not prioritized and they can’t take more blood at her age from such a little body. Essential thrombocytosis means that there are too many platelets present because the platelets don’t work like they should. In this disorder clots or abnormal bleeding or both can be present.
What the doctor seems to lean towards is a blood disorder called von Willebrand disease. These blood tests that the baby is taking now and will continue to take ones she is older to figure out what is wrong are checking different “blood factors”. von Willebrand factor is a protein in the blood that helps blood clot. If you have this disease, the body produces too little of this protein, or produces a “different” protein that doesn’t work. This is a genetic disorder which is true for a lot of blood disorder, this is why I’m urged again to ask both sides of the family for anyone with blood disorders. People with von Willebrand disease will usually only discover that they have it during surgery or after an injury; bleeding will be excessive. You can live a pretty normal life with this disease and there are medications (that “glue” the blood and thickens the blood but there is a danger of clots in that). It is, the doctor explains good to know if you have it early because it is quite scary to first find out during a surgery or an accident. For women, menstruation can also be excessive and some therefore find out during puberty or during childbirth. More testing needs to be done and we get an appointment in a week and a second one in three weeks.
I’m overwhelmed and it’s like it’s too much information to wrap my head around. As baby sleeps I escape into the world of social media for a while managing to stay away from googling “blood disorders in infants”. There is an outpour of support for us which I really and truly appreciate. The great news here is that I can tell my family and my “online family” that our baby is finally doing better. She has managed to take a couple of syringes of milk and she even tried to latch on my boob (yes singular, still favoring the left one) a couple of times. She has also tried to smile at both mama and the nurses and she is not crying or sleeping as much.
A temporary setback scares the heck out of me that afternoon, fresh red blood leaks out of my baby’s mouth as she tries to feed. A doctor is paged and rushed to our room.
While I wait I cry. I haven’t really cried until now, not for real, I haven’t let myself. I can’t believe I was actually scared of pain myself before my children were born, now I’m only scared of them being in pain. I just want this all to stop. The doctor on call is warm and reassuring however telling me that a small bleed like that after mouth surgery is completely normal and nothing to worry about. Since I worry it’s going to happen at home though and since it’s leaking a little more than it should, I get a medicine meant to stop the bleed, from the hematology department that I’m supposed to give baby twice a day for four days.
We are getting discharged the very next day after a good night (can’t wait for an actual bed) where baby actually latched on me and ate like she hadn’t for almost three days and even slept four hour in a row. Two of them in the hospital bed giving mama some much needed rest. The nurse on call had a miraculous trick where she built baby a best with thick hard blankets in the bed, almost like arms or a “lap”, swaddled her and then hid a “vibrator” in the blankets (don’t ask…but I so stole that thing ones we were released…what? They said we could have everything on the bed!). It worked wonders and I finally got some sleep. I text everyone involved about baby’s progress, even nurse G and I get a call back from a quite rude Dr. W who clipped baby’s tongue in the NICU. She tells me that “of course she doesn’t even remember us…do I know how many patients she has?” I figured it would be good to discuss the first frenulum cut with her, the bleeding, the amount and the bleed the nurse caused afterwards. Apparently not…
I pack up our few things while a nurse intern holds the baby, the supervising nurse tells me how to administer the four different medications (baby hates them all with a passion) and we sign the discharge papers- I’m hoping forever. We are done with hospitals (hopefully for a lifetime), this baby is not allowed to get sick or hurt ever again!!
My kiddos’ aunt to the rescue yet again, taking care of little boy at home. She even got lunch for us and plays and feeds the older one all day until daddy arrives and tomorrow “momo”, grandma lands again from Sweden.