day 18

home.

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day 17

hotel NICU...

Last night I roomed in with the sweet little boy and it improved his nursing so much! In the end he gained weight yesterday. If he keeps it up again today and tonight- so far he is on track- we get to take him home tomorrow. All the discharge planning is done, we just need the doctor to sign on the dotted line at rounds tomorrow...

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days 15 & 16

Thomas is doing wonderfully breathing on his own. Now we are tackling the last hurdle before he can come home- eating. Yesterday his NG tube was pulled and he was allowed to go from scheduled feedings supplemented by gavage (tube feeding to get to a set amount per feeding) to demand nursing. He's doing ok but not great and he lost a little weight yesterday. Today is similar so unless he starts eating a little more we might get the tube again tomorrow. They are having me room in the next two nights, there is a room in the NICU for moms to stay with their babies who are close to going home, and maybe being able to nurse 24/7 will help. Thomas nurses great but he gets worn out and falls asleep too quickly! This is the one time his size works against him because he needs a fair amount of milk to gain weight but he only has the drive and stamina of a preemie, and a preemie who is still recovering from being awfully sick at that.

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day 14

look ma, no oxygen!

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day 13

such a great day! I came in this morning and Thomas was breathing so slowly and evenly... the tachypneia was gone overnight! We are now allowed to nurse and after a few tries he is starting to get the idea. He is being slowly weaned off his oxygen and is now on a regular flow instead of high flow cannula. His doctor even said that Thomas won't be in NICU much longer... I think it's safe to say we're on the home stretch.

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day 12

We did indeed get to hold Thomas last night for the first time! There are no words.

Otherwise, things are mostly the same. He did get moved into a crib from his isolette, and he is allowed to wear clothes. It's much nicer to see him in cuddly pajamas on a real bed with blankets, instead of in the plastic box of an isolette. We're still waiting on his breathing to slow down and for the last touch of pneumonia to resolve. His doctor upped his oxygen and flow rate a bit to try to help him rest and heal.

day 11, still waiting

Thomas is in the slow stage of recovery now, not too much has changed but he continues to make progress. He was really mellow today, even slept through having the dressing changed on the site of his chest tube (by the way we could not believe how teeny the wound is! you can barely see it!). The flow in his cannula was turned down a bit more. His neonatologist, bless her, decided to make it a priority that we could hold him. He is doing really well with his feedings, so she accelerated them to get him up to full feeds as soon as possible, at which time his IV nutrition can stop, and he no longer has to have the umbilical line which is the reason he has to stay in the isolette. At first she thought that would mean we could hold him tonight- but later on our nurse did the math and that process won't be complete until something like 3 am- so almost definitely tomorrow we can hold him. He may even be moved from the isolette to a crib, and allowed to wear clothes!

Here's a summary of what's keeping Thomas in NICU: he needs IV antibiotics through Sunday. His breathing is still tachypneic (too fast), and that needs to resolve. Finally, he needs to be able to nurse or bottle feed and that is kind of dependent on the tachypneia, since right now he is breathing too fast to be able to suck and swallow very well (he's getting all his milk through the ng tube). Once all of these things are resolved, we can finally bring him home and he can meet his big brother and sister.

day 10

Thomas's bilirubin went down enough that he's off his bili-lights now, which means no more mask over his eyes. He was awake and looking around today a couple of times, it was nice to see his sweet face. He hated that mask and is happy to be rid of it. Actually he hates anything on his face and he managed to get his cannula off several times today, and gave his feeding tube a couple of good yanks, too.

Otherwise Thomas is making slow and gradual progress in other areas. His feedings have been stepped up as he is doing well with them, this has made him much less grumpy now that his tummy is fuller. Hopefully before much longer he'll be on full feeds and his IV nutrition can be stopped... that would mean his other umbilical line would be removed... and that would mean we could finally hold him! His breathing is still fast and effortful; until his rate is consistently below 70 we can't try any bottles/nursing. However he is doing well enough that they are turning down the flow rate on his cannula just a bit.

Tim changed his first of Thomas' diapers today, it was quite a scene! He was nervous enough with all the lines and wires, but then it turned out to be a dirty diaper, and Thomas pooped not once but twice more while Tim was in the process of changing him. We laughed and laughed and I realized how far we've come that we had a moment like that in NICU.

day 9

Thomas is doing well with his feeds, which were doubled (although twice times very little is still not much at all!). He gets VERY feisty when it starts to get close to time for some milk, then afterwards he is quite content and has a long snooze. He was allowed to try a bottle this morning but he just couldn't manage it although he was certainly very interested. In the end the nurse gave most of it by tube again. His breathing is still fairly rapid and labored, although his sats have improved, and he can't coordinate breathing and sucking and swallowing. For now they will hold off on bottles until his breathing gets better which should make it easier for him to eat. Due to how very ill he was last week, it's taking a bit longer than average for him to adjust to being off the vent and doing all the work of breathing on his own, and his lungs probably still have some healing to do.

day 8, better and better

Just a few hours after being told Thomas would get off the vent within the next few days, the NICU called last evening (leading to no small amount of panic on my part as a call from NICU has invariably been associated with bad news up to this point).... they decided to just take him off the vent last night! He is now getting oxygen through a cannula. His breathing is a bit labored and rapid but he is doing pretty well, all things considering.

And then, we arrived this morning to find his chest tube had just been taken out after a favorable chest x-ray.

This afternoon, one of his umbilical lines was taken out.

At that point Thomas had few enough tubes and wires on him that our nurse let us do his bath! We're still not quite to the point of being able to hold him, but it was wonderful to feel like a real live parent for a few minutes while we gave him a sponge bath in his isolette.

Soon after the bath, he got a feeding tube put in, and he got about a teaspoon of milk for his dinner tonight! Thomas was rather grouchy today and it's likely he was finally feeling well enough to be upset that his tummy was empty. He'll gradually get feedings through a tube and then hopefully soon he can try nursing.

day 7 is a beautiful day!

Thomas is doing wonderfully today! His oxygen has been turned all the way down to 30% (room air is 21% so he is almost there). The pressure and breaths per minute on his vent have also been adjusted down. He is getting very good sats and blood gasses with these changes. Maybe in a couple of days he can get off the ventilator entirely. Also, the suction on his chest tube was turned off and if he does well with that, he can have that out in a day or two. His bilirubin was down to 9 and he will have just one bili-light instead of two now. We are very pleased that he is starting to lose some of his "hardware." Feedings will also hopefully start in a couple of days- very gradually at first, perhaps a few mLs of milk fed by tube. We're told we can take him out of the isolette and hold him once he has his umbilical lines removed, that will be a few days more yet, but we are excited that even the possibility is being discussed.

In terms of the failed spinal taps, they're not going to try it again but have decided to extend his antibiotics to a full 14 days which should cover anything that might be going on. Honestly I am kind of relieved that they are taking this approach, it would be good to know for sure what is going on, but I'm not sure I could really handle him having to go through that again.

day 6

Updates on many fronts today...

Bilirubin went down from 16 to 11 which is a good amount of progress. He's got a ways to go before he can get off the bili lights but he is moving in the right direction.

Overnight his blood gasses were kind of fluctuating, so they got the oxygen in his ventilator down to 91% but then couldn't turn it down further as he was getting to the point of not tolerating the changes. However throughout the morning and early afternoon he got some very good numbers again so they decided to drop the oxygen 3% every hour and check him again at 6 pm. Apparently overnight he was not putting up with the positioning of laying on his left side to address the atelectasis in his right lung (which was more or less unchanged on the morning chest x-ray)- but that seems to be important for him to get the good numbers as he did today when he did cooperate with laying on his side more.

Thomas is getting a bit feistier! He tries to grab his endotrachial tube from time to time. Our nurse said he's just about bound to pull it out at least once.

As Thomas is starting to do just a bit better, a few things were done today that had been waiting for him to be medically more stable. He got a bit of a sponge bath, which like any newborn, he haaated. His hair is so cute and fluffy now! He has a good head of hair and it stands up all over his head now like a tiny baby bird. They also wanted to do a spinal tap to rule out infection. His doctor is concerned about some kind of latent infection because she feels that the respiratory distress syndrome and pneumonia alone wouldn't account for how extremely sick he has been. Unfortunately for poor Thomas (and his mother's nerves) two different people attempted the spinal tap and failed. I haven't yet heard if they will just leave it at that and watch him for symptoms, or if they will try again another time. He is already on antibiotics and they have extended it to 10 days from 7 just to be sure they might catch anything lurking in there, germ-wise.

another thing I should mention

I was talking to someone today and realized that some people might be confused as to how Thomas' current problems might relate to the earlier concerns we had with his abnormal ultrasound finding. Actually they are unrelated. Now that he's born it's clear he does not have a genetic problem like Down syndrome nor does he have a bowel obstruction- he pooped out that meconium like a champ. So the ultrasound finding was just a fluke that caused a lot of stress but ultimately didn't mean anything. His current problems are directly the result of his prematurity. The really hopeful part about this is that he doesn't have any kind of chronic condition, if we can just get him past his current breathing problems he will be more or less okay, other than a little more prone to respiratory issues.

day 5

Thomas' bilirubin shot up yesterday evening and now he has bili-lights and a bili-blanket on him (complete with the awesome little sunglasses) to treat the jaundice. His number was still quite high this morning but they think that it should turn around pretty soon. This was kind of an expected complication and we were told early on that it was almost inevitable that he would get jaundiced at some point.

He also has some new problems with his right lung- the medical term escapes me- they are just trying to keep his right side elevated and doing percussion and frequent suctioning to try to keep it open and cleared. I don't think it's a major concern because they are continuing to do chest xrays just once a day and when he was sicker he was getting multiple chest xrays daily.

The really good news is that his oxygen sats and blood gasses are significantly improved today! The neonatologist was very pleased. This means his lungs are starting to heal and function better. She said that in a different baby they would start weaning off the vent pretty directly with these kinds of numbers, but because Thomas has been so very sick they are going to be more cautious. His vent has been turned down slightly and oxygen reduced to 97% from 100%. They'll follow up his labs this afternoon and hopefully he will tolerate the changes well.

day 4 so far

Thomas had a fairly uneventful night and his blood gasses were better this morning... it's really about the first bit of solidly good news we've had since he was admitted. His neonatologist wants to see him at least maintain that improvement for another day before talking about starting to wean him off the ventilator. Right now he is on 100% oxygen so that is the first thing they would like to turn down once they feel it is safe to do so. The pneumos are stable/perhaps smaller so the risk of having to put in a second chest tube is decreasing. His current interventions are the ventilator, chest tube, antibiotics, blood transfusions (mostly because they have to draw off so many labs, they have to replace it), and IV nutrition. He gets morphine from time to time if he gets upset, but for the most part he is so worn out and sick that he sleeps all the time. I don't think I've seen his eyes open since a brief instance immediately after he was born. Sometimes he tries to get his little fingers in his mouth to suck on them, and he gets so frustrated because the vent is in the way! It's kind of cute and pathetic at the same time.

Tim and I have realized that sometimes it's hard to get across to others the seriousness of what's going on, especially because Thomas was "late preterm" (some babies born at 34 weeks have no problems at all and can go right home) and because he had a good birthweight. At first glance it maybe doesn't sound so awful. Frankly he is having considerably more trouble than a typical 34 weeker, for whatever reason or combination of reasons we are not sure. He is one of the sicker babies in the NICU right now and his respiratory therapist admitted that on Tuesday night (the night he was intubated) she was awake worrying about him. I can really struggle to see much younger and smaller babies without half the tubes that he has, or to see that 90% of the babies are well enough that their mamas can take them out and hold them. We are eagerly looking forward to the day that we can do more than just touch his foot!

thomas edward

I'll try my best to keep some updates available here as to how we are all doing given the surprise early arrival of our son Thomas. We have some pics and at some point I hope to get those up too. For now, here's a summary:

Sunday Aug 1

I was having lots of (what I assumed to be) Braxton Hicks contractions, all morning through church. I tried resting after lunch and that seemed to help, but then they picked up again in the evening. Finally I realized that the usual tricks of resting and drinking water were not going to clear them up and I would have to go in to L&D. I was 100% sure it wasn't real labor so I just went over by myself at about 7:30 pm while Tim was putting the kids to bed, telling him I'd be back in a few hours after they checked everything out. To my incredible shock it turned out that I was 6 cms and contracting every 2-3 minutes, way too far along to even think of stopping labor. We found someone to watch the kids and Tim rushed over to the hospital. There was a debate among the doctors as to whether I should be transferred right away to the bigger hospital in town which has a NICU, but they decided to keep me as I was progressing quickly and they thought a 34 weeker had a good chance of being okay on his own.

Monday Aug 2

At 12:22 am Thomas made his entrance! At 6 lbs 6 oz he was very big for his gestational age and looked healthy but he starting having breathing trouble almost immediately. I got to hold him for a few seconds and he was whisked off to the nursery for oxygen. Over the next couple of hours the doctors changed their minds several times as to whether he was going to need to go to NICU or not. He would do better for a short time then have trouble again. Ultimately they called the transport team and Thomas was taken by ambulance to Sparrow hospital at about 3 am. He looked so miserable and sick and was whimpering with every breath. He was started on CPAP (cannula with positive pressure) even before he went in the ambulance and it did ease him a little bit right away.

Tim and I grabbed a few short hours of sleep and then worked to get me discharged first thing in the morning. We went straight to the NICU and spent most of the day with Thomas. He had the CPAP and got medication for his premature lungs (surfactant) as well as IV antibiotics. The doctors felt he had respiratory distress syndrome (basically from being a preemie) and possibly some pneumonia as well. Thomas was somewhat stable but not considered to be doing well, we were not really allowed to touch him much let alone hold him. Mom/Grandma arrived from Wisconsin which thrilled the big kids to bits.

Tuesday August 3

Not a good day. Thomas just slowly went downhill all day. His oxygen sats decreased, his blood gasses worsened. He developed a pneumothorax (air bubble in his chest) so they had to take him off CPAP and put him in a 100% oxygen tent. This helped maybe a tiny bit but not nearly enough. All day there was the constant threat of intubation and/or chest tube. In fact in the evening they set everything up for intubation and sent us out of the room to do the procedure, only to have the attending call it off at the last minute, which was quite the roller coaster for Tim and I. In general they seemed to be preparing for a turn downhill, and instead of an IV he had umbilical lines placed so they they had better access and could get more precise lab measurements.

Wednesday August 4

Thomas was intubated at about 5 am and also had a chest tube inserted at some point in the wee hours. This chest tube was for a second pneumothorax that showed up in his chest x-ray overnight. The first one they were content to monitor as it was fairly small. Although we were really upset that he had to go on the ventilator, it was obvious that it brought him some relief in that his stats improved and his breathing was much less labored. It does mean that his stay in NICU is going to be longer rather than shorter, so we are trying to mentally adjust to more of a long haul. Over the course of the day his chest xray showed that the chest tube did resolve the pneumo on that side, and the other pneumo had decreased some on its own. We are hopeful he won't need the second chest tube and firmly believe he has enough wires and tubes coming out of him already!