This precious boy and his mom had another eventful day today. I dropped my three older kiddos off at school this morning, so I missed morning rounds. By the time I got to the hospital, the nurse was preparing to give Garrin not one but two IVs in preparation for his fourth blood transfusion. Because Garrin has been more stable and they are needing to draw labs less and less, there is a chance that this could be his last transfusion. I guess Garrin got wind of that possibility so he thought he would give the nurses trying to place the IVs a run for their money. Two nurses and at least four pokes, and we still didn’t have a single IV placed. So an NNP and NNP student came in. I am sure that each of them tried at least twice unsuccessfully before finally getting one IV placed in Garrin’s scalp and the other in his arm. It was definitely hard for this mommy to watch.
About that time, the doctor came around to visit, joking that they waited for me before starting the IVs and making the vent changes as I had walked in the door just as things started to go down. Garrin’s vent settings were reduced slightly to challenge his lungs to work harder while he is on the steroid. While discussing the vent settings with me the doctor brought up that much anticipated “H” word. Unlike the first doctor, this doctor predicted that Garrin will go home at 38-45 weeks corrected with a trach and G-tube button. While I I have known of this possibility, having him say it really hit me to my core. Shout out to my husband and sister for putting up with my emotional texts this morning.
After talking with the nurses and two NNPs, I have decided not to focus on that possibility right now. Garrin will most likely need respiratory support to go home, but it is far too early to try to predict what his road will look like. They suggested that the doctors try to bring up those possibilities now so that parents aren’t caught completely off guard when and if the time comes. The glass half full way I am looking at this tonight is that this doctor was once using terms like “ominous” and “bad sign” to discuss Garrin’s condition and now he’s saying things like “go home.” Again, there are no guarantees in the NICU. In case you didn’t know, you can never trust a baby.
Garrin’s blood transfusion has seemed to make him more comfortable in terms of pulse and sats. However, right before cares, he pulled out his NG tube and was holding it in his hand. The nurse got it replaced and restarted his feedings before weighing him for the night. 920 GRAMS!!! 2 LBS 0.45 OZ!!! My baby boy weighs 2 pounds!!! Of course, the doctors won’t be too impressed as he still has 80 more grams to gain before he weighs a kilogram. One step at a time.
While the nurse was doing cares, Garrin was crying so hard it looked like he was sobbing. Of course, I can’t hear him cry and he doesn’t have any tears, but I could tell. It is in these moments that my strength is tested. I yearn to pick up my sweet child and comfort him, nurse whatever ails him. Until then, it’s containment and a breast milk covered pacifier.
Since I spent much of the morning worrying about a trach and G tube, I will leave you with this quote: “Worry never robs tomorrow of its sorrow, it only saps today of its joy.” – Leo F. Buscaglia