Our Story - Week 3

Our Story
Week 3: 08/03/04 - 08/09/04

Day 15 -- 08/03/04

6:00 AM: Joshua is doing well this morning. He weighed 2 pounds, 10 ounces last night. He's at 30% on his oxygen, and is tolerating his feedings well. His temperature was a little low overnight (that's common when they're getting used to a new isolette), but was at 97.9 last time they checked. He hasn't had any spells since we left last night, so that's good.

10:00 AM: I went to visit with Joshua. He's in his new isolette. It's a little harder to deal with, because it doesn't have the portals to get in and touch him...it's kind of like a roll-top desk, and you actually have to lift the lid up to get access to him, which means you have to be careful about his temperature. It was a little low (97.1) when I was there, so I didn't do kangaroo care, and I kept the lid as far down as I could and covered his little back with my hand to try to get touch-time but still keep heat in him. Andrea came to do his physical therapy and check on his progress, so when she got there, I changed him, took his temperature, and turned him over on his back so we could get to his little foot. She's very pleased with his progress -- said that both have much better range of motion, and he's made improvements since she saw him on Friday. Cindy, Josh's nurse, let me listen to his belly before she fed him (she pushed a little bit of air into his OG tube while I listened...she said that the little puffing sound indicates that the tube is properly in place and ready to deliver food to his little belly). I also got him set up for his blood pressure check (BP looked good). She also let me listen to his lungs/chest yesterday (sounds like the ocean)...she said that when he has a spell, you don't hear anything, and that's how they can check and make sure that he's back to breathing productively after a spell. She's been really good about getting me "involved" in his care, which I really appreciate!

We talked with one of his doctors today, and she said that he's progressing as he should for a baby his age and gestation. At this point, he really just needs TIME to develop. She said that she would characterize him as transitioning from the "preemie underdeveloped lungs" category to the "chronic lung disease" category. It sounds terrible, but she said that it simply indicates that he's stable now, but his lungs need time to continue to develop, and it's going to be a slow process. Chris asked several different ways to make sure that we understand correctly, and she assured us that the term "chronic lung disease" doesn't indicate sickness or that his lungs are progressively getting worse. The term very simply indicates that it is continuing long term (the "chronic" part), and that the development is taking place in his lungs. We asked about his long-term future outlook, and although she didn't talk in absolutes (the doctors never do), she did indicate that he is on track for his age and gestation, and that he shouldn't have any major/disabling effects on him. She said that 15 years down the road, if he were put through a series of very "detailed" testing, there would probably be indicators that would tell the doctors that he had been a preemie, but as for day-to-day living, he shouldn't suffer any major ill-effects. She did indicate that for the first couple of years of his life, he would be at a slightly higher risk than his peers for developing lung-related sicknesses (i.e. colds can turn into pneumonia more easily, and he can have "asthma"-like wheezing when he gets colds). I asked her about sending him home (which I know is a ways into the future at this point). I didn't know if he would be sent home if he still needed the aid of machines (i.e. a monitor, oxygen, etc.). She said that ideally (and this is the case with many preemies), everything will come together, and he'll be sent home without any monitors or machines. What they look for is that the baby is nursing/feeding productively and gaining weight, he is successfully maintaining his body temperature, he is breathing room air (21% oxygen), and he isn't forgetting to breathe (no apnea/bradycardia spells). Sometimes, most everything comes together, but the baby still needs a little help either with remembering to breathe, or needing a little extra oxygen, and if everything else is in place and going well, they will send some babies home with oxygen or with an apnea monitor. She said that once we get closer to that time, we'll make a determination (I didn't expect a definite answer...I just didn't know if they would even send home a baby unless he was completely doing everything on his own, and I wanted to know what their determining factors were for release). We also asked about long-term care. I am planning on taking off work when he comes home from the hospital, then going back to work after Christmas. I asked her if typically preemies will need additional/special care from a "trained" caregiver, or if once they're home, they would be able to go to a regular day care or babysitter. She advised against a group day care if at all possible because of all the colds and sicknesses that go around (he is at a higher risk of catching those sicknesses and having them progress and affect him worse than a term baby). She said that if at all possible, she would recommend getting him with a babysitter or a caregiver who only takes care of 2-3 babies. Hopefully, that'll all work out later on. She did reiterate to us that she felt like he was on target for his age and his level of prematurity, and she seemed to think that he was otherwise "healthy."

Right before we left, he had a spell (actually, 2 right in a row) -- he seems to have them in clumps rather than one here and one there. Cindy, his nurse, got him going again, and once he got settled back in, his numbers leveled out and stabilized before we left.

10:00 PM: Went to visit with Joshua Ryan, but had to wait because they were taking out his PIC line and inserting a regular IV. The PIC line had started leaking (nothing to really worry about...the nurse indicated that it's a fairly common occurrence), so they went ahead and took it out and put the new IV in his left foot. Unfortunately, since they had the incubator open while they were doing the IV, Josh was a little cool, so Chris wasn't able to do kangaroo care with him (which was frustrating, but we understand and wouldn't want to do anything that would stress his little body any more than necessary). He is doing well -- tolerating his food well (he's up to 12 ml, and will go up to 15 ml tomorrow).

Day 16 -- 08/04/04

6:00 AM: I called to check on Joshua, and the first thing the nurse told us was that he's warm enough to hold! He had a good night, and had just had his first spell right before I called. He weighed 1211 grams, which I think converts to about 2 pounds, 10.5 oz.

11:00 PM: We visited with Josh this afternoon. He had 2-3 spells while we were there...he really needs to quit with the spells, because it's too scary! Chris got to hold him, though, so that was good. Lou Ann suggested holding him instead of kangaroo care right now because his temperature was on the "low" side of OK. Once he got settled in, he did really good -- his numbers all stabilized, and he snuggled with his Daddy for awhile.

While we were there, the doctor came by, and said that she heard a heart murmur again, so she scheduled another echocardiogram to check and see if his PDA is back. The results should be back tomorrow, and if it is back, they'll do another round of Indocin (which I think is the same thing as Indomethacin). If he does have to go back on the medicine, they'll take him off breast milk and just "feed" him IV fluids until they're done administering the round of medicine. The reason behind that is that since the medicine dilates capillaries around the heart, it also does it in other parts of the body and can potentially interfere with intestinal function and complicate things if he's on breast milk. I really hope that he doesn't have to do that -- I know he'll be fine, but I just worry that he'll be hungry! The respiratory therapist also came in while we were there and changed out all the hoses and CPAP equipment. While she was doing that, Lou Ann helped "pose" him for us to get some pictures. In some of them, he's even "sitting up" and has his little "thug cap" off. What a little cutie!!

7:00 PM: Chris stopped by on his way to work and visited with Joshua. He was doing well. Apparently, he had "baptized" himself twice with breast milk -- the way they feed him is through is OG tube, and they get the milk started, but then they hang the tube up and let the milk gravity feed down into his belly. Something didn't work quite right with one of his feedings and he ended up spitting up a little, then jerked on the feeding tube and knocked it down and spilled it all over himself. Twice. After that, she put the milk in a pressure pump that delivers a small amount at a time and he did fine with that. The technician came by and did his echocardiogram, and said that (s)he didn't see evidence of the PDA, but would have to have it read "officially" by the doctor, and we would have a definite answer by tomorrow. To me, that's great news!

10:00 PM: I visited with Josh tonight...he was crying a lot! :-( I got to hold him, though, and he settled in pretty well. The nurse snuggled him into a blanket (in her words, she wrapped him up like a burrito :-D) and let me hold him for awhile. She gave me his pacifier, but didn't seem to want it...but he did suck on my finger a little. He doesn't have a great sucking reflex, but it's getting there. He'd had one spell around 8:00, but otherwise was behaving. Debra (his night nurse) tried him again on "gravity feeding" and he was doing OK with it, so they didn't go back to the pump delivery of milk.

Day 17 -- 08/05/04

6:00 AM: I called to check on Joshua, and he'd had one spell overnight, but not a big one. He is tolerating his feedings well (he's up to 18 ml of milk at each feeding!). He'd gained a little bit of weight, but not a lot...he's up to 2 pounds, 11.15 oz. They lowered the pressure on his CPAP from 6 to 5 because he had a good blood gas, so that was encouraging. His sodium level is good (for whatever reason, they've had to supplement him because the levels have been a little low lately), and she was getting ready to change out his lipids. She commented that he hates the prongs on his CPAP (apparently he protested when they switched him from the mask to the prongs). The official word on the PDA is that it is CLOSED...YEAY!!!!!

2:00 PM: I visited with Josh. He's doing pretty well, had 2 small spells while I was there, but came right back from them very quickly. The CPAP setting was still on 5, so that's good. They're moving him to a new pod today. It's not because his condition is getting better or worse, it's simply because the other pods have a lot of empty spaces in them, and they're trying to "redistribute" the babies.

7:00 PM: Mom and Dad visited with Josh, and Chris visited right after them on his way to work. The nurse told Mom that he's doing very well, and that "he loves his passie!" I've never been a big pacifier person, but in his case, I know it helps to develop his sucking reflex, and if it's going to do that and potentially help him be more comfortable and content, I'm all for him having it! All his vitals looked good.

10:15 PM: I visited with Josh tonight...got to do kangaroo care again. It is so wonderful to snuggle with him! It took him a few minutes to get settled and he was a little "agitated" at first (he had 1 spell that he didn't want to come out of right away, but we got him going and then settled and he did fine). We got him tucked in, and his numbers stabilized. We cuddled for about a half hour, then weighed him on the way back to bed. Even after changing out his diaper, he weighed 2 pounds, 14.2 oz....we're getting close to 3 pounds!!! All in all, it was a pretty good visit. His new "home" is in a pretty good location...he's in a corner slot, and with the curtains pulled, there's lots of privacy.

Day 18 -- 08/06/04

6:00 AM: I called to check on Josh and talked with Dave, his night nurse. He had an overall OK night, but had a section of a couple of hours when he had a bunch of spells. Dave tried several things -- he repositioned him, changed him over from his CPAP mask to his prongs, and it helped some. He drew blood to make sure that there wasn't another complicating factor, but his CBC (complete blood count) looked good, and his blood gas was OK, too. His hematocrit and hemoglobin were slightly low, but not to the point that they should cause any problems. The good thing was that when he recovers from the spells, he recovers very quickly, and his numbers go right back up to where they belong. They're just going to keep an eye on things and see how he does. He was up to 24 ml of food at 5:00 this morning, with no residuals, so we're definitely pleased with that.

4:00 PM: We visited with the little man for awhile. When we walked in, the respiratory therapist said that he had a surprise for us. They'd taken off his CPAP and put him on the nasal cannulas (the little prongs attached to hoses that send oxygen in through your nose...a miniature version of the ones that a lot of elderly people with emphysema use)! Usually, a baby "graduates" from the CPAP to the cannulas, but in Josh's case, since he'd had all the spells last night, they decided to try him on something different and see if a change would help him with the spells (all his other numbers have been good, so they figured he might just respond better to a different method of oxygen delivery). They also gave him a transfusion, which is to be followed by a dose of Lasix (which will help with fluid retention after the transfusion...it allows him to keep the red blood cells, but gets rid of the excess water that he gets with the transfusion). He looks WONDERFUL!!!! It's just so nice to see his little face! His eyes were open, his color is good, and he was fairly alert. What a little sweetie! They warned us that is was possible for him to go back onto the CPAP rather quickly, so not to be surprised if we came back in and he was back on the CPAP (I hope he doesn't before the next visit, because of course, I forgot to bring the camera this time around). His nurse, Melissa, mentioned to me that I may want to consider another level of care with him (some doctors would encourage it, others would probably want me to wait awhile, but it's just something that she thought I might want to know about to possibly do with him at some point in the near or not-so-near future), called non-nutritive nursing. The way it works is that I would pump to express my milk, then let him "nurse." What that would do is help develop his sucking reflex, without requiring him to coordinate sucking, swallowing, and breathing, and it would also give us some bonding time. She called it a "step up" from kangaroo care...it sounds like something I'd definitely like to look into, but I think I'd probably feel more comfortable waiting until his spells start to slow down a little before I try him with it.

9:00 PM: We visited with Josh, and Chris got to do kangaroo care with him -- they both did wonderful! Josh snuggled right in, and all his numbers stayed stable. He was nice and warm, and just looked so comfy (and tiny) snuggled up with Daddy. I took lots of pictures, so hopefully at least a few of them will turn out good. He was still on the nasal cannulas -- hopefully he can stay on them because, if nothing else, he just looks better! What a great visit. His hat was even off this time, and we got to see his little blondie locks and kiss his beautiful little head!!!!

Day 19 -- 08/07/04

6:00 AM: I called this morning to check on little Joshua, and talked with Dave, his night nurse. He told me that Josh had two really big spells that they actually had to "bag him" for (put the mask over his nose and mouth and actually manually help get him breathing). The "good" thing (if there is such a thing) about the spells was that the first time it happened, they were drawing blood for a blood gas, and at the same time, he was trying to have a big poop in his diaper; and the second time it happened, they had just done a respiratory treatment, and he was pooping again. Dave seemed to think that all of those things put together could have put a lot of "stress" on him, and as a result, he used up all his reserves and he stopped breathing. He did recover from them very quickly, and all his numbers came right back up, so that was another "good" thing about the spells. Other than the two big spells, he said that Josh was much more reasonable than last night, and that he only had one other spell -- no extended stops in breathing, but some incidents of "periodic" breathing (which is actually something that a lot of babies, including full-term babies, do, except they're not usually on a monitor for anyone to really notice). He was 2 pounds 15 oz. (1 oz. away from 3 pounds!!), but Dave said that after he had his two huge poops, it might go back down a little. He did a blood gas around 2 AM, and his carbon dioxide level was up a little, but did another one early this morning, and everything was back down within parameters. His oxygen level is between 40% and 60%, which is fine for him right now. He has him turned back over on his belly, because he "sats" better there (his oxygen saturation stays more stable).

12:00 PM: Chris and I went by the hospital this afternoon and visited with the little man. He's doing pretty well...keeping the nurse on her toes, but he did pretty well with us there. They have his oxygen saturation parameters set very narrow, so if he gets just a little bit high or a little bit low, it sets the alarms off, but unless he has a spell and they really drop, it's not a big deal. He was very active while we were there...he was on his belly, and he kept pushing up on his legs and "dancing" (pushing up and down and wiggling his little bottom back and forth). By the time we were getting ready to leave, he'd managed to move himself halfway across his isolette, and had turned his head from one side to the other all on his own. He's definitely a strong little guy! They're going to give him another small transfusion today, just to get his red blood counts back up (they're still a little bit low), and then another dose of the Lasix. After that, they'll be putting him on a mild diuretic, which should help him eliminate excess fluid he might still be retaining from the transfusions, as well as help remove fluid that might be collecting in his lungs. They've ordered another chest X-ray for Monday (I think they do one per week on him to track his lung function and progress). They're also giving him a drop of olive oil (yes, you read it right) per nostril every 12 hours (a drop in 1 side, then a drop in the other side 6 hours later, then repeat the process for a total of 2 drops per nostril per 24 hours) in order to keep his nasal passages from drying out. They suctioned out his nose and got a little bit of blood last time, and think that his nasal passages are just dried out and inflamed (the oxygen he's getting is humidified, but probably not quite enough). They found out several years back (an ENT specialist suggested it) that olive oil works wonders in situations like that (and hey...if they can avoid using medication, I'm all for it!). He's still on the nasal cannulas, and they're just going to give him time and see how he does. The nurse did mention that a possibility we might see is that they could put him on the CPAP for several hours, then switch over to the cannulas, then rotate between the two -- the change sometimes helps, and he would get a little extra help from the CPAP every so often, but his little nose would also get a "rest" from the CPAP every so often, as well.

10:00 PM: Mama and Joshua had a great visit! Daddy had to go to work, so Mama came alone, and did kangaroo care with Josh. He nestled right in, curled up, and got comfy. We cuddled for about 45 minutes...Joshua sucked on my thumb for some of the time (getting that sucking reflex going!)...what a little sweetie! Right when we went to put him back in the isolette, he had a spell, but the nurse, Dave, thinks that he just got a little too comfortable and got "squnched" down and cut off his airway enough to cause him to have a spell. He came back very quickly, and once we got him snuggled back into his isloette, he was fine.

Day 20 -- 08/08/04

6:00 AM: I talked with Dave this morning, and Joshua had a MUCH better night. He only had 1 spell (one instance of "acting up" as Dave called it). He's doing well with the olive oil for his nose. He was on his belly most of the night (his oxygen saturation numbers are better there), and his oxygen levels were in the upper 30s to 40s overnight. His blood gas was about the same as yesterday, so that was OK. He weighed 2 pounds, 15.2 oz. (but Dave warned us not to be surprised if it goes down a little with him on the diuretic).

12:00 PM: Chris visited with Josh today and got to hold him while he "ate." He did well, except for one little "oops...." Chris changed his diaper and wasn't sure that it was on tight enough...when he finished holding him, Daddy had a little wet spot on the front of his shirt...Josh decided that Daddy needed a christening. :-) Other than that, the visit was good -- all his numbers looked good, and Josh did well. His nurse, Martha, told Chris that they'd taken off his temperature probe (the probe linked from him to a sensor on the isolette...when he gets cold, it automatically turns up the temp in the isolette, and when he gets hot, it turns it down)...they're going to see how he does maintaining his own temperature. If he does well with it, he'll be able to start wearing clothes!! (Of course, I have no idea where we'll get these clothes since he's still so tiny, but hey...it's progress, and I'm not going to argue with that!)

5:00 PM: Aunt Sarah and I visited with Joshua. He was very alert...and looked great! He'd pulled out his OG tube, and no longer had his IV in. With those two things gone, and without the temperature probe, he just looked so good! Martha, his nurse, asked if I wanted to hold him while he ate, so that was pretty cool. Of course, she had to put the OG tube back in, but that's not really a big deal (although it made him mad when she put it back in and he turned bright red and screeched at her...but I think that once he realized that it was associated with filling his belly, he calmed back down). He did really well with me...his Aunt Sarah held his little hand while he "ate" and he was just fascinated with her -- he kept turning his head and opening his eyes up wide to "watch" her. He was very alert, so that was really nice. I got a couple of pictures...hopefully can get more tonight.

10:00 PM: Chris and I had a good visit with Joshua. Chris did kangaroo care with him...they cuddled up together and both snoozed. Josh looked so comfortable all curled up on his Daddy's chest! All his numbers stayed very stable, so that made us feel really good. Even when we put him back to bed, once he got settled back in, his numbers stayed really stable, and he looked content.

Day 21 -- 08/09/04

6:00 AM: Joshua did really well last night. He's tolerated his feeds pretty well (still had a little residual the feed before last, but none this past time). He didn't have any really major depressions in his oxygen levels unless he scrunched himself up...then all it took to bring his numbers back where they belonged was to reposition him. His temperature was fluctuating some, but he's hanging in there so far. His oxygen saturation still looks good, and he's at about 30% - 40% on his oxygen level.

11:00 AM: I visited with Joshua and he is doing well. I held him for a couple of minutes, then Grandma got to hold him while he ate. He also got to wear clothes!! I changed his diaper and got him dressed before getting him out of the isolette. His nurse, Martha, brought in a preemie outfit they had there, and h looked just like a miniature "normal" (full-term) baby in it! What a little cutie!!! He did pretty well...desatted (oxygen saturation dropped) while I was holding him, but no apnea or bradycardia went with it, so it could have just been a positioning thing. My mom held him while he "ate" -- he did very well! He got fussy after awhile, so we put him back in his isolette (he cried, big time...I think to tell us that he was ready to take a nap). All his numbers looked good, and his temperature held very well.

10:00 PM: I went to visit with Joshua...he was on his belly, and his nurse (Sharlene) was with another baby, but told me to go ahead and turn him over so I could change his diaper and get him ready to do kangaroo care. I turned him over and he started desatting, then went into a spell...they had to come over and use the bag on him to get his oxygen back up. When they went to put the bag over his face, his cannula prongs were out of his nose...no wonder he was having trouble getting enough oxygen! He came back very quickly once the prongs were back in place, so I went ahead and did kangaroo care with him (I was a little afraid at first, but since his numbers restabilized so quickly, I felt a little better about getting him out and moving him around). I found out that Sharlene had changed out his prongs from bigger ones to slightly smaller ones...they seem like they'd be much more comfortable, but they're also easier to pull out! Josh and I cuddled up -- he did very well, but when it got close to feeding time, he started getting squirmy so we went ahead and got him ready to go back to bed. We weighed him first (2 pounds, 14.4 oz.), then dressed him in a t-shirt that I brought for him (it was WAY too big...looked more like a gown than a shirt). Sharlene snuggled him into his bed and swaddled him in with a folded pillow case, then gave him his midnight snack...once he was tucked in with his belly being filled, he settled right down.

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