Travis and I spent a lot of time with the doctors this morning discussing Morgan Kate's lungs and the options we have. This is not something we take lightly and we wanted to make an informed decision. Dr. B gave us several pieces of reading material last night. Our homework was to read the material and write down any questions we had. I am very good at writing out all of my questions (and believe me, I had a lot of them). My mom taught me quite a lot, but two things that really stand out are 1)always get/record the name of the person you are talking to (especially on the phone) and 2)write down any and all of the questions you have before talking with a doctor. Thanks Mom! We did our homework and talked with other doctors, nurses, pharmacists and even another preemie mom -all in favor of the steroids. After much research, deliberation and prayer we decided to go ahead with the steroid treatment. Morgan Kate got her first dose tonight at 6.
About twenty years ago (give or take) doctors used steroids with A LOT of preemies. Basically, if there was a lung issue or breathing problem the preemie received steroids. The steroids were given from day one, in large doses and for forty something days straight. These steroids helped heal the preemies' lungs. However, years later when they followed up on some of these same babies they found that some had cerebral palsy, some had growth problems and others had developmental delays. It was a catch-22 - you give the steroids to ultimately help your child breathe, but these same steroids possibly cause problems later on. You must also keep in mind that every preemie runs the chance of having cerebral palsy and even some developmental delays because of being born early. So, did the steroid use cause this or just the fact of the child being premature? There is some debate on this issue. Due to these studies doctors discontinued using steroids for quite sometime. In the past several years they have started using the steroids again, except now they are given later on in a preemies life, they are given in much smaller doses and given for only ten days. The children that first started receiving these doses of steroids are only three or four now, but so far the same side effects are not present or as widespread. Because of the past studies and results the doctors have to tell you EVERYTHING - all the good things about steroids and the possible side effects.
Travis and I wanted what was BEST for Morgan Kate and we also had to remember that there are side effects with EVERY medication, including something as simple as Tylenol. It is extremely difficult to watch Morgan Kate struggle each day with breathing. She works so hard and gets so tired. Without the steroid Morgan Kate could lay in that incubator with that CPAP for months and continue to cause damage to her lungs. She could pick up an infection (which is not a good thing in the NICU) or even develop pneumonia. Her lungs COULD eventually get better on their own, but we could be there much, much longer. She is getting to the age where she needs to be out of the incubator and she needs stimulation. Dr. B said that at her age she needs more than just lying on her back staring at the ceiling. With the steroid we should begin to see results in about five days. It will decrease the inflammation and help with her airways. They don't expect her to come off of oxygen completely. They do think she will be able to come off of the CPAP, as well as the high flow cannula and probably be sent home on low flow oxygen.
We asked a ton of questions, but we especially wanted to know how Morgan Kate developed bronchopulmonary dysplasia (BPD) or chronic lung disease, especially since she was born breathing on her own. This is NOT something Morgan Kate developed over night. She has been having issues with her breathing since about day four of her life. This is the best way to explain it...
Preemies are born with immature lungs. The lungs of a baby do not fully develop until about 35 weeks. When premature babies are born they sometimes need assistance breathing. This assistance can come in the form of the ventilator, the CPAP or supplemental oxygen. Each one of these things helps the baby breathe (good thing!), however, they can also cause damage to underdeveloped lungs. This damage - scarring and inflammation - causes BPD. Therefore, the same lifesaving device can cause other problems. You're darned if you do, and darned if you don't! When Morgan Kate was born she didn't need immediate breathing assistance. This could have been because I received steroid shots one week before she arrived and they were helping her or even masking the problem. Also, a woman's body gives off numerous hormones during pregnancy and childbirth that can also help with a babies breathing ability at first. They do not immediately diagnosis a baby with BPD. They try to give the child ample time to recover and get breathing under control. However, by 36 weeks of age, if a baby is still requiring more than 30% oxygen they are diagnosed with BPD, a type of chronic lung disease.
Please pray that these steroids will do the trick and that Morgan Kate will get some relief. Please pray that God will continue to heal her lungs and make her strong.
On a lighter note, Morgan Kate is continuing to tolerate her feeds and weighed four pounds and eleven ounces. She has lost a little bit of weight because of the lasix - which most likely means it was water weight anyway, so no reason for concern.
Stay tuned for tomorrow's conversation about RSV and what this means for Morgan Kate...
*All of the above is my interpretation of the information presented to me. I try my best to take perfect notes and get everything correct. Remember I am NOT a doctor, nor do I pretend to be one, I am just a wife, mommy of one awesome daughter and a fourth grade teacher.