My patience is stretched a little thin, but in channeling my fraction of an ounce of optimism, I found it is best to think of it stretching more like Gumby and not to the breakable version it feels like.
Peter is not coming home today. Apparently, yesterday, at around 6:30 p.m., yes, before I came in to spend the night, Peter had an apneic spell longer than 20 seconds, which is an automatic no-go for a homecoming for at least 48 hours. And that is only if he doesn’t have another spell in that time.
The doctor who is on today felt horrible about the fact no one had communicated anything to us until this morning at ten o’clock. He spoke to his colleagues and they have decided to put him back on oxygen at a higher amount and hopefully he will not be able to have these spells. If all goes well, they might let him come home tomorrow…but we’ll see. I really love both the nurse who recorded the spell and the doctors involved and I feel like all three have been very good at communicating with me all along. I’m not sure where the initial miscommunication happened, but it helps to forgive it when I like them so well. But it was a big mistake.
I went through a whole range of emotions with this news. Of course, I started with bitterness and anger. Everything seemed to be lined up so perfectly for today. The little girls go to a mom’s day out program, so child care did not involve all three of the at-home kids and it was not an all day burden for a friend to have (I know that everyone is happy to help, but I just feel better not having to leave kids all day with other moms who have little kids). Not only was it Peter’s due date (by ultrasound anyway), but it was also exactly 13 weeks since he was born. And then, someone pointed out to me yesterday that today was the Feast of the Ascension, the same feast on which my mom passed away last year. I know it sounds a little corny, but somehow, it felt like a little kiss from my mom that he would come home today. And lastly, I just roomed in with him all night and was emotionally pumped that I made it and it was not too difficult–aside from the lack of sleep.
It felt like a kick in the gut that it wouldn’t be today. I was angry that I hadn’t been told sooner, that I had let my hopes run high. And I was mad that my joy of him being home with only the heart monitor and with O2 if need be is now just disappointment that he will have full-time O2 and another monitor.
And so with a heavy heart, I packed up all my stuff and the extra gear I had brought for him and I went back home and took a nap.
It is amazing what perspective sleep gives a person. When I woke up, I started thinking about the Ascension. The Ascension wasn’t a time of great joy for the apostles, seeing Jesus ascending to his heavenly throne while they remained on this earth, must have been very difficult, despite his promise to send them the Holy Spirit. It was a time in which they had hope, but also great anxiety. The Ascension was also an event that reminded them that they weren’t meant for this world, that this world would disappoint them and leave them with many frustrating trials, but in the end there would be heavenly joy.
So in short, I still accept that feeling of a kiss from my mama because of the day, but I realize there was a good reminder attached too, which seems more like her anyway.
And if that little reflection on the Ascension wasn’t enough for me, soon after as I scrolled through my Facebook feed, my eye caught a beautiful photo of a baby boy. I saw that a friend had posted it with some sad news, but accompanied by a hopeful message. She wrote.
“This is how I will remember Nathaniel Monaghan. And this is how I imagine he looked when he met God face-to-face in Heaven. Dear sweet child, we weep now that you are gone, but we rejoice because now you rejoice. Please pray for your beloved father, mother, sister, and all those who remain here still to fight the good fight. Rest in peace, Nathaniel.”
I had been praying for this beautiful boy since I had recently heard about him. He was born almost exactly a year before Peter and had battled with his cancer nearly all that time. Through all Peter’s time in the NICU, I would frequently think of this local family and what they were going through. It helped to offer up my much smaller cross for them.
My friend’s reflection and prayer for Nathaniel resonated with me particularly after thinking about the Ascension. It is difficult to be patient and keep the faith when we have such limited understanding of things beyond our control, but this feast reminds us to have hope for the the world to come.
“When I was a child, I spoke like a child, I thought like a child, I reasoned like a child; when I became a man, I gave up childish ways. For now we see in a mirror dimly, but then face to face. Now I know in part, then I shall understand fully, even as I have been fully understood.” 1 Corinthians 13:11-12
Well, what have we here?
my roommate tonight! I am rooming in with all my fingers and toes crossed that this little man doesn’t do something crazy and prolong our anticipated discharge of tomorrow afternoon. The above device is my home monitor, meaning it comes with me wherever I go. It is the very definition of obnoxious, but it is assurance as well. So far it has gone off once very briefly and I calmly and in a not-at-all panicky way tried to recall how to turn off the light that stays on long after the siren stops, but my mind went blank and I started frantically pushing both the buttons on the top which both look like power buttons and, naturally, are not labeled. I ended up sounding the alarm for a solid ten seconds which was sort of like a taste of hell, I think. At any rate, I finally got them both off and we’re good. I might have also read the entire 64 page manual after that, so, like I said, we’re good. This. Is. So. Scary!!! But worse case scenario I call a nurse and they will help. But it is so strange to be on my own with Peter all night. Not even an assessment. I’m the nurse tonight.
I had a training on how to give him oxygen and how to use the heart monitor today (which clearly stuck). Then, I watched a video on CPR and safe sleep and I suppose I’m what they call qualified now. After the monitor incident, im feeling toooootally confident in my ability to recall pertinent information in an emergency.
After my training this afternoon, I was feeling so nervous and worried. I did allow myself to get a little excited and maybe a little nostalgic, which helped. I said good-bye to the $1500 breast pump on loan from the hospital as long as Peter is a patient. (Pictures are not aligning right on the iPad im using. See above, I think.) And I did get all giddy while I was packing up his take-me-home outfit. (Again see pic wherever it ends up in this post.) Then, the oxygen delivery guy came and while I was waiting for him to take inventory on all his O2 tanks, Genevieve frantically ran upstairs to tell me there was a Lego stuck up her nose. She wouldn’t calm down and Dave wouldn’t answer his phone until the second the delivery guy rang the bell. I had to tell the guy to wait while I took care of the hyperventilating four-year-old and no doubt confused the poor man with whom the O2 was for, but she eventually sneezed it out and all was peaceful again. And suddenly I wasn’t that worried about spending the night away.
So, back to my roomie, he’s doing great. I just gave him a bottle and he took the whole thing–painfully slowly–but he did it! It is now midnight and I just looked up at his crib to see bright, wide awake eyes. Looks like it’s gonna be a party up in here. And hopefully, we won’t hear sirens.
Prayer warriors, please do you’re thing! Praying that, by this time tomorrow night, he’ll be enjoying peaceful slumber in his own crib. Pushed up to the bed and within two inches of my head. (I apologize for any weird auto corrections or other strange typos. It isn’t letting me proofread.)
Aaaahh, yes, another running reference in association to our boy’s “journey” from preemie-hood to full-term babe. Though, unlike “mile 21″, I can kind of use this one like I get it. Kind of.
Way, way back in the day, when I ran Cross Country my final year at the University of Dallas, my coach used to appear, seemingly out of nowhere (just to set the scene more dramatically), at the final kilometer of a race and scream at me as I ran by, “Drop the HAMMER! I want you dead at the finish line!” After a race, I would call Dave, who lived far away in DC, and tell him how the coach always scared the heebie-jeebies out of me whenever he did that and I really did run faster. So somewhere around centimeter ten of labor with our first, Dave decided it would be a hilarious time to yell, “Drop the hammer!” (He spared me the second line, which would have felt about right.) The sweet doctor looked at me sympathetically and asked me if I wanted him to punch Dave for me. Fortunately for Dave, Mari was born before I could respond.
Two days ago, practically right after hitting publish on that last post, Peter got the orders to have his NG and oxygen pulled. He did well, only having to go back on oxygen once, and he has been NG free and eating like a champ since they removed it. And then yesterday afternoon, he got orders to discontinue his caffeine (what they give him for his apneic and bradycardic spells). Once that was discontinued, he has to wait five days to make sure he doesn’t have any spells. If he passes this test, he gets to come home WEDNESDAY–sans tubes, wires and monitors!!! So now we wait. And it is reminding me a lot of the transition part of labor…without the physical pain (though technically this would be my second transition with Peter–lucky me). So instead of Dave coaching me, we are both coaching Peter, begging him to keep doing well, high-fiving each other after every full feed and wincing every time we hear the monitor begin beeping, indicating that his O2 sats are low. So far, he has always recovered and gone back to the normal range. He’s just dropping that hammer.
He has been acing his final discharge tests too. Today, he had an MRI, which looked normal. Yesterday, he had an audiology screening and he passed. He is up to 5 lbs and 9 oz. We are realizing that he is probably going to be out of the preemie outfits people have loaned us and, today at the store, we decided to forego the economy size box of newborn diapers in favor of just a small pack, realizing he’ll be out of those in no time. We’ve come a long way since those micro-preemie diapers.
We both are tense as we wait for Wednesday. In our 12+ weeks in the NICU, we’ve seen several families be discharged well after the date they were originally given because their babies have had setbacks or have stopped taking full feeds right before going home. So we are bracing ourselves as we go forward and cautiously remaining optimistic that he will be home with us on Wednesday, 91 days after we began this crazy ride.
We’ll keep you posted. Please keep us in your prayers.
(My friend Anne, preemie mom extraordinaire, sent this song to me a while back with the warning it was a little Raffi-esque, and that it is, but it is sweet and relatable and makes us all smile around here.)
Peter is nearly 39 weeks (more likely 38) gestationally tomorrow and nearly 12 weeks (also tomorrow) out of ye old womb. Time flies sometimes and other times…it really doesn’t. This is probably the longest stretch, and even though the doctors have dubbed it the home stretch, there is very little that feels like home or really that different than the last 6 or so weeks.
Oh, fine. That isn’t quite fair, there are some notable exceptions and silver linings, you optimists, you. The biggest one being that on May 1 the RSV/Flu ban on children visiting the NICU was lifted and all of the kids have finally, FINALLY, met their brother, which makes for very happy kids, more-anxious-to-have-their-brother-home kids, and much cuter pictures. Check ’em:
Peter continues to do well and his lungs seem to finally have developed enough to take a full feed by bottle rather than through the NG tube. Dave and I are trying to get in there to feed him at as many of his feeds as possible, which, thanks to many generous friends, has worked out pretty well. It is really nice to be able to take one or two of my kids along with me so that I don’t feel like I’m overwhelming anyone too much by adding my kids to their lot.
Our boy is up to 5.5 lbs!!! His arms are already getting a tad bit long for most of the preemie clothes and, we are confident one day his legs will be too. Not a bit awkward. I blame the clothing industry and their desire for short-armed and short-legged babies.
As for oxygen, he is down to 1/32 of 100% 02, which is the lowest the supplemental 02 goes. He enjoyed a full day of nasal cannula free living, but the next day he made his nurse a little nervous with his desatting and had to go back on O2. I am not sure what his O2 status will be when we take him home, but my fingers are crossed for sans oxygen tank.
On the homefront, aside from the distractions of our two-year-old’s eye surgery*, we have been blessed with three straight weeks of visitors, which were wonderful and welcome distractions from this long waiting period.
Fresh on the heels of my dad’s, brother’s and sister’s visit, Dave’s younger brother and his wife and kidlets drove up from Houston:
Then, the following weekend, my brother and his wife, and their kids came to visit from the Seattle area.
It has been so nice to be able to start introducing Peter to his “loved ones” and, if I haven’t mentioned it yet, I am really looking forward to being able to introduce him to his home. Come home soon, buddy!!
*Sorry for the delay in updating you. No news was good news. Evi’s surgery went really well and her only side effect, aside from slightly bloodshot eyes, is crankiness. And that would be extra crankiness, she already dished out a decent portion on the daily as it was. Her eyes are also not that crossed when her glasses are off, but definitely not with her glasses on, so this is all good!
We interrupt our normal programming here to give you an update on another kid. Wait…what…there’s more? I know, I know, it does appear, as I scrolled through dozens of recent photos, that we seem to be missing four of our children. T’would seem there is a wee bit of favoritism going on amongst the parental units these days. But, I was able to pull up one blurry, cell phone pic of this blog post’s subject, Madamoiselle Herself, from just the other day, March 17:
See that cute little patch there. It has been working the other eye’s tail off and helping it to get its stuff together, so that it won’t cross. But alas, her eyes are still having trouble focusing without crossing and so we face the next course of action. *Pausing for dramatic effect*
(A little much? Well, Dave thinks so too, but I think it is only fair that I get to be a little dramatic these days. Live it up and when all else fails, blame it on Peter, I always say.)
Evelyn is having eye surgery tomorrow. This is what a doctor might call a simple, outpatient procedure. And what her mother will call 45 minutes of torturous waiting and worrying and cause for overdramatic sighing in the waiting room. It will be fine, I know. But general anesthesia…eyes…she’s only two…
Genevieve, level-headed as…mostly, had a little pep talk with Evelyn today.
Gen: Now, Evi, are you going to school tomorrow [mom’s day out]?
Gen: That’s right. You aren’t. I am, but you can’t. You have to go to the doctor and get your eyes uncrossed. He is going to do a surgery. Ok?
Ev: Ohhh, I go to doctor? Get surg-ee?
Gen: That’s right. You have (loudly and in her face) CROSSED EYES!
Ev: Ohhhh, I have crossed-eyes?
Gen: YES! But you won’t after surgery and then you can go to school another day. I will go tomorrow.
I really have no business using marathon references when I have completed and trained for approximately zero of these races, so here’s full disclosure on me claiming to know the first thing about marathons, BUT, from what I hear and perhaps have observed in watching other people run marathons, that mile 21 can be a real…beast. We are so close to Peter’s due date and what should hopefully be the end of his stay in the NICU, and the phrase “hitting the wall” seems an apropos reference to describe my emotions about Peter’s NICU stay right now. Trying to just push through this, but they warned me that this was the most difficult part. We are just waiting until he shows us he is ready. I am just so ready for him to come home and I am just so tired of figuring out how to get up to the hospital for at least a little bit each day, get child care for all the kiddos that can’t come with me and keep the home life as normal as possible for everyone. It will all be a distant memory soon. I know, I know…*big sigh*…I know. I’m just tired and feeling frustrated.
Peter is technically 37 weeks gestationally today (or 10 weeks ex-utero), which makes him a term baby. However, we strongly suspect that my original due date of May 23, before it was bumped up to May 14, was more accurate. So he is possibly a little younger than we have been assuming and his chronic lung disease is consistent with that theory.
Peter’s greatest obstacle is still his lungs. His lung issue (bronchopulmonary dysplasia) is classified as moderate to severe and seems to be the hold up in him having the stamina to finish full bottles at his feeds or even being awake enough to bottle feed. He has a good latch with both the bottle and when I nurse him, and seems to understand how to suck, swallow and breathe, but just doesn’t have the endurance. On Sunday, they started him on Lasix, a diuretic, because they saw on his chest x-ray that he had significant fluid on his lungs. They kept him on Lasix for three days and it did help to remove the fluid, but didn’t make a significant difference in his oxygen needs. (He can’t stay on Lasix as it not only draws the fluid out of his body, but also potassium and other nutrients.) His lungs should improve over time, but it will most likely be a long while, possibly a year or more. It seems likely, at this point, that he will go home on oxygen.
As for when he can come home, he needs to be able to take a full bottle at every feeding and lose his NG tube. He is up to 48 mLs at each feed and is now allowed to eat on cue (e.g. rooting, sucking on his fingers and awake or being fussy). However, his PR for bottle feeding is only 31 mLs (and Dave would like to note here, and will not let anyone forget it, that he was the one who was feeding Peter when Peter PR’d) and typically Peter is only able to take 7 to 20 mLs before “petering out” (wakawakawaka).
His weight is creeping closer and closer to 5 lbs. He has been hanging out around the 4 lbs. and 13 oz mark, going up and down a little for the past several days, but never quite managing to cross the line to the 5 lb realm. So fingers crossed for today! As the doctor told me the other day, weight gain is especially important for him as he doesn’t have much reserve if he were to get any kind of infection, particularly a respiratory one.
Here is our sweet boy last night:
As for life on the homefront, we have plenty of things to keep us busy and I need to just focus on that. Jacob made his First Communion on Sunday and that earned us lots of visitors. My dad came in last Wednesday night and stayed for a whole week (speaking of PRs, that would be his)!! It was so nice to have him here for so long. He got lots of snuggle time with his youngest ex-utero grandchild before the three in-utero ones steal all his attention away. (ok, ok, insert winky face–he will give equal attention to all, I’m sure.)
And then, Saturday, we had good friends of ours, the Lyons, visit from Oklahoma and they got to spend some time holding the wee lad:
Saturday night, my sister, Emily, and her family drove in from Omaha and then, Sunday, my brother, Mark, drove up from Dallas. It was so great to have them all here and Jacob felt pretty special, even if Peter tried to claim they were all here for him.
See Jacob did get some attention too (albeit blurry):
And then, sadly, one by one they all went home.
But there is more to look forward to soon! Dave’s brother, Joe, his wife, Andrea, and their two ex-utero kidlets and one in-utero (third trimester) are making the ten-ish hour drive up from Houston today just to visit us for the weekend. Please say a little prayer for their sanity and safety as they travel north. We are super excited to see them. Be prepared for another bombardment of photos soon!
Peter has continued to be a little steady Eddie. He has continued forward with the plan to get big and strong and then come home. And he has done so with little complaint. I would say this is just a quick update, but brevity, as you might have noticed by now, is not my strong suit. So no guarantees and here we go:
He is up to 4 lbs and 9 oz.! On Easter Sunday morning, he hit 4 lbs. and 0.01oz., which was a major milestone! And now I feel a little spoiled by his good behavior and his steadily increasing weight. I’ve started taking it for granted and so I am taking this moment now to revel in the fact that he has gained 9 ounces in just six days! (In solidarity, I have been steadily eating the “leftover” Starburst jellybeans and Reese’s eggs this week and was able to not only match his weight gain, but double it.) He was transferred to his big boy bed on Saturday and has been doing really well. The nurses could probably change diapers through the little portal windows of the isolette in their sleep, but I never was able to manage squeezing both hands and arms through at the same time to change his diapers. It is so much easier now that he’s out in the open!
He has gone up and down here. The doctors would ideally like to wean him from that in the next week or so. He had been down to 1 L of O2, but he stopped tolerating that yesterday and was moved back up to 2 L. That could be because he is getting sick or it could just be that his lungs aren’t ready.
He has been allowed to try feeding by mouth twice a day and he has been doing pretty well on that. He has taken about 12-15 mLs on a bottle at a time (that may be the equivalent to 2-3 teaspoons, but the mililiter amount sounds more impressive, so we’re going with that) and just today he took 18 mLs from the bottle. He is up to 40 mLs a feeding and he has done really well tolerating his full feeds. Learning to feed him a bottle was a lot more challenging for me than attempting to breastfeed him. He latched easily when I tried to nurse him, but he doesn’t keep going–lots of pauses and I suspect he takes more from the bottle though it is tough to measure. Since I want him home as soon as possible, we are going to just focus on bottle feeding as much as possible, so he can get the hang of eating beyond the feeding tube. Then, once he is home, we can see if we can go back to nursing. Currently, letting him latch on and nurse is for practice and for bonding more than for the calories.
But as I mentioned, bottle feeding is challenging for me. This is because of how little he is and how much help he needs to suck from the bottle. His little cheeks need to be squeezed in because he doesn’t have enough chubs yet on his cheeks to help him suck easily, so squeezing his cheeks helps his latch. At the same time, one of finger has to go under his chin to help his sucking reflex. And then there is also the supporting him aspect. I realized a third hand would be super helpful to feed him.
Here is his nurse making it look like I lied to you in the above paragraph, but look carefully at her finger placement. All of those digits are doing something. And it is possible she has an extra, I did not count them.