Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts

Tuesday, June 12

Six Month Preemie Assessment

Today we took Henry, James and Elanor to AMC – Behavioral/Developmental Pediatrics for their preemie assessment. Basically it’s to “assess” how they’re doing developmentally, whether they’re on track, lagging, or ahead and to see whether they need any special treatment (i.e. physical therapy etc).

The babies got weighed in and measured.
Ellie was 26.5” long and 14.1lbs, her head was 16” (I think)
James was 27” long and 17.35lbs, head was 16.5” (I think)
Henry was 26.75” long an  18.65lbs, head was 17.5” (I think)

All in all it was a really good visit. They usually will judge them on their corrected age (the age they would be now if they had been born full term), but they were all beyond that. For most things they were in line with their actual age (5.5 months), or only just under that.

The doctor was very impressed with how they were doing and had absolutely no concerns. She invited us to come back in 6 months (which is the standard) if we wanted to, or just call if we had questions.

I did ask her about the shape of Henry and Ellie’s heads, since they’re really rather badly mis-shaped. She didn’t think it was anything severe enough to warrant a helmet. It was moderate, but with 6-7 months of good head growth still to come and since they are sitting up right in toys and on their tummies {meaning less time on their backs and heads} she seemed to think they will correct themselves, BUT if we don’t see any more improvement in the next couple of months then we can get the name of the neuro-Dr who deals with them.

I asked our pediatrician about the helmets and he gave me such a perfunctory response, that I wasn’t really too calmed by him, but hearing it from the specialist I’ll take it. That and she said that she’s rather a head-Nazi. She has twins herself and is very particular about the shape of babies heads, because it can have lasting impact….even only cosmetically.

So the word is that they’re all doing REALLY well and we have nothing to worry about with them. YAY! and THANK YOU LORD!

Thursday, June 7

One Year Ago Today

We had our first ultrasound, at 5.5 weeks, to find out just how many babies scan0035security alteredwere cooking.

I think back on that day and laugh. I was in denial more than anything. I knew going in to the appointment that there was no way it was one, and was hoping it would ONLY be two. HAHAHAHA!

Then the next day, reality hit me and I had my major freak-out-crying-session. Knowing the very real possibility of a very hard and dangerous pregnancy, of not knowing how we were going to handle, let alone, afford 4 kids 2 and under, of worrying about how it was going to affect Ave…and a million other things that were hitting me at once.

Going back and reading all of my posts from the first few weeks of finding out we were having triplets is a bit funny: Of course, in hind-sight, most things are funny.

God knew what he was doing…He always does, even if we are wondering ourselves.

All of my fears and worries were unfounded. I spent two days in the hospital, even if the babies were in the NICU for a few weeks. I didn’t have to worry about weeks or months away from home. I didn’t have to worry about babies being born way too early.

Life has continued on, and while it is sometimes crazy (or more truthfully, INSANE) I wouldn’t change it for anything.

As for the struggles. In a few years we’ll barely remember these, because they’ll be replaced with new ones.

As for Ave. She’ll never remember what life was like without her brothers and sister. Every memory the four of them will share.

“Cast all your anxieties on Him, for he cares for you.” 1 Peter 5:7


Tuesday, January 17

Ellie is HOME!

Which means....we're all home, together, under one roof, all 6 of us! I went up yesterday with my MIL, while my mom and her friend stayed at our house to take care of Ave and the boys. I can't tell you how good it is to have all of the babies home {and the added perk of no longer having to drive to Albany...YAY!}

{ James and Ellie ~ James, Ellie and Henry }

{ Elanor, Avelyn, Henry, and James }

{ Sisters! Avie Mae and Ellie Sue }

Now comes the fun. Tomorrow is my first day at home with all 3, A L O N E! I'm sure we'll survive, but it should be interesting. Here I go, life with 4 kids 2 and under :-P

Monday, January 16

Fourth Week in the NICU

Day 23 ~ January 13th

We went up this morning to visit little miss for a while. I'm definitely ready for her to be home. The drive back and forth to Albany is getting a bit much (you don't even want to see what my credit card bill is for gas!), plus the weather is more and more frequently yucky!

Ellie was doing pretty good though. She was eating well, but the heat thing is really what is slowing her down and keeping her from coming home. The nurses are planning on trying again tomorrow, to turn off her heat.

Day 24 ~ January 14th

Ellie had another good night, in regards to her bottles. The nurses turned off her heat today at is the moment of truth. (I thought they were leaving her heat on for good, but I guess not). As of the evening Ellie was still doing ok with her feeds. We didn't go up to visit.

Day 25 ~ January 15th

Didn't go up again, but Ellie had a good night. She got a bit pokey with her feeds, but the nurses forced it down. They actually put the temperature up in the room and kept her bundled up so that they wouldn't have to turn her heat on again, since she was a little on the cooler side.

So far they're all talking about her possibly coming home tomorrow, since she's been 24 hours now out of heat and is still eating well. I won't know for sure until tomorrow morning.

Day 26 ~ January 16th

Called this morning and she's officially being kicked out of the NICU! YAY! Heading up in a little bit to bring her home!

Thursday, January 12

Third Week in the NICU (Part 3)

Day 20 ~ January 10th

We didn't go up today, but Ellie is holding her own. She's just really struggling with the bottle feeds. No really major changes or issues.

Day 21 ~ January 11th

Matt, the Boys, Ave, MIL and I all went to Albany today. Henry had his circumcision appointment and we asked MIL to go along, we knew she wanted to see Ellie, plus it was an extra pair of hands (and someone else driving home). We got to the OBs for Henry's appointment: As I was asking if the doctor if there was any chance they could do both boys, I was told that they had a scheduling mix-up and couldn't perform even one. Fortunately the doctor was awesome and he made some changes and was able to get both boys done (saving us a trip up next week).

We got to spend quite a bit of time with Ellie, which was nice. She was doing really well again with the bottle feeds and the nurses were planning on turning off her heat around 7pm. They weren't quite sure how she was going to handle it, but were really hopefully that she could be coming home on Friday (1/13). Her current weight was 5lbs and a 1/2 ounce or so!

Day 22 ~ January 12th

Little Miss did not like having her heat turned off. With the first feed they were seeing that she was struggling. It took her 45 minutes to take one of her bottles. The nurses decided rather than risk her not taking her bottles (and back-tracking 24 hours again) that they would force the feeds and put the heat back on.

The doctors have since decided that her heat can stay on indefinitely and they won't hold it against her in regards to discharge. The nurses and Matt and I all agree that it's best for Ellie to stay in the NICU until she is taking her bottles with no issues whatsoever, particularly since the boys can still be rather slow at times with their bottles.

She did lose a little weight overnight. She had been taking breast milk (lower calories) and trying to regulate her heat. Between those two factors she lost about an ounce. Not a ton, but it was a loss.

We'll be going up tomorrow.


Monday, January 9

Third Week in the NICU (Part 2)

Day 16 ~ January 7th

We know we're not going to be able to visit Ellie as much as we like with the boys home. We didn't go back up today. The nurses said she's doing all right, but taking a bottle only every other feeding or so. She's been really struggling with the bottles.

Day 17 ~ January 8th

We went and visited little girl today. The nurses were so excited to see the boys and couldn't get over how big they were just since Friday (really? in 2 days?). We didn't get to stay long....only about an hour or so. It kills me to go up there and just hold her for a little bit, put her back in her isolette and walk back out the door. Soon she'll be home.

She was still being a bit pokey with her feeds, but had managed to take all of her afternoon bottles and had no issues with them. We'll see how the night goes.

Day 19 ~ January 9th

We had the boys' first pediatrician appointment today, so we didn't get to go visit Miss Ellie. Last night the nurses were quite hopeful that she was on the up and up and maybe even would be discharged on Wednesday. She had been taking all her bottles like a champ.

This morning was 24 hours of only bottle feeds, which means they then turn the last little bit of heat off in her unit (wait 24 hours and if she's eating and maintaining heat she would be discharged). Within a couple of hours of that she had all but stopped taking any of her bottles. So the heat was put back on and they were having to tube feed her. No Miss Ellie coming home on Wednesday. BOOHISSS!

They said other than that she's doing well. Just not well enough. I was so looking forward to heading up there on Wednesday and bringing her home, but I guess that isn't going to happen.

Thursday, January 5

Third Week in the NICU (Part 1)

Day 15 ~ January 5th

Today they're two weeks old! A half a month old and I have yet to hold all three of my babies at once, or see them completely naked. I feel like we've lost so much time together and have so much to make up for.

I called the NICU this morning to find out whether James would be getting discharged today, only to find out that they were planning on discharging Henry too. Fortunately, they decided to discharge them both together, tomorrow. I didn't even go up today, which was hard.

Ave and I stayed home and I got some things done (bottles washed, Christmas tree out, nursery finished, laundry caught up etc). I think she really liked having a low-key day at home with mommy.

We called this evening to see how the babies were doing. The boys were doing all right, although Henry was being a bit slow with his feedings. Ellie on the other hand barely took any bottles today and the few she did she didn't finish.

We're excited to be having the boys home soon, but I feel so homesick for poor little Ellie being up there all by herself. Before I felt like the all had each other, but with the boys coming home she's all alone :-( I know with the boys home I won't be able to go up and see Ellie as much as I would like...probably only every other day, but I'm trying not to think about it.

Day 16 ~ January 6th

Today the babies would be 36 weeks old. As of right now the boys are coming home today...pending cir.cumcisions, which is turning out to be a nightmare. Why is it a nightmare? Because despite me telling every single person who asked that we DID want them circ'd, they were never circ'd.

I've since called our pediatrician, our urologist, and my OB...none of them do circs on newborns. Of course I called the NICU and told them this, they suggested the OB (which I called at their suggestion and they don't do it). Now I'm trying to get a hold of the NICU again to find out what can be done (since the discharge papers have already been drawn up for today). Long and short: We have to take them back to Albany on the 11th and 18th for the boys to be circ.umcised.

Matt and I got up to Albany around 5:30pm. We immediately started doing discharge stuff and fed the boys and got them in their car seats. Knowing that we had a 2 hour drive and would be getting home just before their next feed we didn't get to spend much time with Ellie.

She's doing OK. They were giving her every other feed from a bottle, but she wasn't tolerating too much of her food. She's really in about the same place as she was last week, which is rather frustrating. We're hoping to go back up on Sunday to see her. Fortunately we can take the boys back with problems with that.

Wednesday, January 4

Second Week in the NICU (Part 2)

Day 13 ~ January 3rd

I didn't go today to Albany; with the forecast they were calling for I figured it was best to stay home, give Ave a low key day, and get some essentials done around here in case Henry was coming home this weekend. We did get quite a bit done.

Matt called the NICU in the evening to see how the babies were doing. Henry was up 1.5 ounces and taking a bottle, since he had pulled his feeding tube out. I guess he'd had enough of that thing. James was up almost an ounce in his weight. He was taking almost all of his bottle except for the tail-end, getting that via tube. Ellie was doing well and had taken bottles all day long.

Day 14 ~ January 4th

Boy! Did I get a surprise today: James (that's right, James, not Henry) is coming home tomorrow! I'm all kinds of mixed feelings about that...I'm so excited for someone actually coming home, but the logistics is freaking me out. How on earth am I going to be two places at once, especially when both places (home and NICU) have a newborn who needs me.

I really didn't get much information today, that I can remember, because I was just thinking "Someone is coming home....uhhhh".

I got there just in time today though to bottle feed Henry and then Ellie (noon and 1), the nurse fed James while I did the rest. They're all doing well. Ellie could be doing better...they pushed her yesterday to take all her feeds via bottle and she ended up losing a bit of weight last night and was struggling today to take all of her bottle at each feed. The nurse apologized for that.

James is obviously doing well since they're sending him home (or planning to, anyway). Henry is doing well, but he's gotten pokey about his feeds...he's still leaving 6mls (so is Ellie) and refusing to finish a bottle.

We'll just have to see what tomorrow brings. The nurses weren't definite that James would be going home, so I have to call in the morning to see what the game plan is. The reality of what lies ahead is quickly smacking me upside the head...which is a whole other post.

Friday, December 30

Second Week in the NICU (Part 1)

Day 8 ~ December 29th

Today they were a week old! Our pastor drove me up to AMC today...then our friends R & R brought Matt up after he finished the route. I was able to be at the hospital from around 3:30 until 8:30, which was really nice. I was able to make all of my rounds and spend some good time with each of the babies, and then Matt was able to sit and hold Henry and James for a little while.

Daddy with James

Miss Ellie snoozin' away

Day 9 ~ December 30th

Friends took me up today and I caught a ride home with the ILs on their way back from NH. The BABIES ARE ALL IN THE SAME ROOM! I was so excited when I walked in and saw that all their names were on the board for the same nursery: YAY! I may or may not have let out a squeal of glee when I saw that.

They were all doing REALLY well today: Henry is back up to his birth weight (4lbs 13oz), James is almost to his birth weight (5lbs 1 oz) and Ellie was 4lbs 5oz (born at 4lbs 9oz). They're all on the right track! Ellie took THREE bottles today with no problem, the boys had taken most of their feeds via bottle too!

James' heat is pretty much off (27c) and he's regulating his own body temperature. Henry and Ellie were both down to 28.5c...the goal is that they're stable at 27c, before they can be discharged (in addition to a whole lot of other things).

What always makes me optimistic is when the nurses start asking about things having to do with discharge (circu.mcisions and vaccines).

It was so wonderful today to just sit and hold one of the babies while still seeing the other two.

Day 10 ~ December 31st

Matt and I went up in the afternoon, after the store closed, to see the babies. We were able to hold Ellie for quite a while. Matt was quite content to just sit and cuddle his liittle princess. Then the two of us were able to hold Henry and give him his bottle feeding; it was the first time Matt got to feed one of the babies. The babies are getting mostly formula because I'm not getting more than a few ounces from each pumping session. They are all doing well...just working on their bottles. Henry had taken all of his feeds via bottle today. Ellie and James were every other feeding.

The heat came down a bit more in both Ellie and Henry's units. The boys are the closest to their birth weights, Ellie is still about 4 ounces away from her's. Everyday they're doing a little better with their eating.

Day 11 ~ January 1

Matt and I went to Albany this morning, as soon as Ave woke up (she seems to be coming down with!) The babies are all doing really well! I even managed to try and nurse Henry and then Ellie, they both did pretty good: Latched on with no problem, but it was a lot of work for them and they could only manage a few minutes before you could see they were just too tired.

Mommy with Henry

Daddy with Ellie ~ Mr. James

Henry's heat was almost all the way down, 27.8*, Ellie's was at 28*, and James was steady at 27* (where he has been for almost a week). They were all doing pretty good with their feeds and were taking more than half of them via bottle, as opposed to tube feeding. Henry is above is his birth weight at 4lbs 14 oz, James was 5lbs 1 oz, and Ellie was 4lbs 5 oz. Of course no one will speculate as to when they're coming home. It's pretty much down to their being able to feed via bottle.

Day 12 ~ January 2nd

I went up to Albany myself today. I honestly don't mind the drive; It's long, but not terrible. I think the years of driving back and forth for RE appointments prepped me for NICU time :-P

There were some big surprises when I got there though. I walked in and found Henry in a car seat, wondered for a split second if I didn't get the memo. They were doing car seat tests today, Henry passed his! Ellie and James will do theirs tonight or tomorrow.

Henry during his car seat test

The nurses even hazarded to say that Henry may be home on the weekend: YAY!!! He was taking all of his feeds via bottle, although they did sometimes have to really force him to take it within his allotted time frame. His heat was entirely off and he even gained a little bit of weight overnight.

James is doing well also. The nurses said he sleeps almost constantly, but he's taking about 90% of his feeds via bottle. He just falls asleep and can't be bothered with the last 6mls he's supposed to be taking. I did get him to take his entire bottle for me this afternoon, but it was a bit of work.

Ellie is up 2 more ounces, to 4lbs 7oz, just 2 oz under her birth weight. She's doing the same thing as James though with her feeds, taking all but the last 6mls or so by bottle. The nurses weren't too worried and said that it could very well be that they're full and just don't need/want that little bit extra.

All of the babies had their hearing screens done today, and passed. They also were started on vitamin D. The heat is off in all of their units, and they're all pooping and peeing!

Of course, realizing that VERY SOON there will be at least one baby home makes me very nervous. Between all that I still need to get done and the idea of having 4 kids being my sole responsibility, it's a bit intimidating! Heck, these kids have a TEAM of nurses caring for them in the hospital, and soon it will be just me. But I'm trying to remain faithful and calm, knowing that God always gives us what we need.

Thursday, December 29

First Week in the NICU

Day 1 ~ December 22nd

In the mid-afternoon, once my epidural wore off, we finally were able to head up to the NICU to see our children! We just walked around from isolette to isolette entirely in awe of our little babies.

One of the nurses asked me if I would like to hold James, he was the first one I got to hold. Elanor was on oxygen and under the heat lamp, we just got to look at her and gently hold her hands. Henry was under the heat lamp as well, but was ok with breathing, he was receiving oxygen, but at normal room air pressure. Ellie was the worst off of the 3 of them, but was holding her own, but struggling a bit.

Henry ~ James ~ Ellie

Mommy and Daddy holding James for the first time
(the first baby we got to hold)

Day 2 ~ December 23rd

Both Matt and I were able to kangaroo with James. It was so precious holding his sweet little body against our own. He was moved into an incubator and clothed, they were slowly lowering his units temp to see how much he could do on his own to maintain body temp. Each feeding he was taking a bit more and tolerating them.

Henry's breathing tube was removed and he was doing all right. They were still tube feeding him, but he was doing ok with those feeds. Very sleepy little boy, it's definitely a lot of work for him. I told Matt that his son has more facial hair than he does. It's really rather impressive!

Ellie's breathing tube was also removed, but she was still receiving tube feedings. She's such a tiny little thing, especially compared to her brothers. We call her Princess Peanut....although, Matt also calls her his little monkey, because she has so much hair on her back.

Day 3 ~ December 24th

I was discharged from the hospital. Dr. J didn't want to let me go, because I was/am such an easy patient. It's a good thing I was leaving when I was because pretty soon my head wasn't going to fit out the door. Everyone kept telling me how fantastic I was and how great I looked. I was glad to get out of the hospital...I don't like those places, but it was beyond words-weird-to look in the back seat and see empty car seats.

Matt was able to hold James for 40 minutes, just cuddling and loving on him. The nurses all said he's exceeding expectations and could be going home the end of the week if he keeps it up. He looked a bit jaundice and they were going to check his levels. They also removed his IV.

Henry was also looking a bit jaundiced and was going to be checked. He had been moved to an incubator and was fully clothed, the clothes are so big on him! He took 16ml in his tube feeding. I was very excited to kangaroo with Henry, it was my first time holding him.

It was also my first time holding Ellie. They moved her to an incubator, but still naked, since she couldn't maintain her temp without the heat on. She's so absolutely tiny, it's like holding nothing at all. She actually does open her eyes and looks at you, like, "where am I?" and "What am I doing here?!"

Daddy and James ~ Mommy and Daddy with Ellie and James ~ Henry

We got home in the late afternoon. My mom and dad had dinner ready for us at our house, then we went to church. Ave is so torqued out from being shuffled about, we only stayed through half of the service. People were certainly surprised to see us there and everyone was congratulating us. Felt like we were cheating since there were no babies. It certainly wasn't what I wanted their first Christmas to be...them in the NICU and us home, without them.

Day 4 ~ December 25th

In the morning we got up and had Ave open a few presents that family had given to her. I never even got her presents's a good thing she's 2. There was nothing in the stockings, no fancy breakfast, nothing really to show it was Christmas. Afterward we went to Matt's parents' for breakfast and to open presents, then off to Albany to spend a little time together as a family of 6.

I will be forever grateful to Henry's nurse. She knew we were coming up and she orchestrated the whole photo session for us and a chance to have all the babies together (first and only time since they were born). What a wonderful gift to have all FOUR of our babies together on Christmas, even if it was only for a little while.

Ave was absolutely in awe! She's in love with James and she got to hold him. The nurses were great, they kept her entertained while we held the babies, and gave us a bit of time with them. It was hard leaving them and having our family be apart.

Henry's bili levels came back at 4.9, so he was in the clear, so was James' levels. Even Ellie's levels came back low, 4.4. It was such a blessing to get to spend even the short amount of time we did with our babies on Christmas. It's crazy to think how they were here this Christmas and how next Christmas they will be already a year old....a year goes by too quickly. I'm already missing their being babies, and they're not even home yet!

Our FOUR kids together on Christmas
(Ave was very serious about holding James)

Day 5 ~ December 26th

My mom went up to visit with me and was so excited that she got to hold each one of her grandchildren. I got to bottle feed both Henry and Ellie, they both did great and took above the 30mls they were supposed to. It took both my mom and me to get Ellie to finish, she just wanted to sleep.

James was doing well and taking his feeds like a champ: He was weighing in at 4lbs 15, Henry was 4lbs 8. Still no decisive word on when we'll be able to take any of them home. We've been told everything from a week to 6 weeks, but it all depends on them.

Ellie ~ Henry ~ James

Day 6 ~ December 27th

I didn't go up to visit. I was ok with that all day until bed time....then I was really missing the babies.

Henry was doing well and was up another ounce in weight. He did ok with all of his feeds and was taking about 39mls each time...he even had 2 poopie diapers! James was also doing good and weighing in at 4lbs 14....he'd lost an ounce but was ok. Ellie ended up getting retubed for her feedings, because she had lost another ounce (was down to 4lbs 3) and only taking 20mls. They were working on weaning her heat bit more too.

Matt and I just sat here looking at each other. The past 6 months don't seem we've been so concerned about keeping these babies cooking and me getting more and more pregnant, and now....I'm back to me.

I feel fine, don't have much swelling left in my tummy, I'm running around with Ave and cleaning house and doing all the things I did before, but there are no babies. I'm trying not to dwell on it, because if I do I feel the tears coming. I haven't broken down crying yet, but I've been close a few times. It just doesn't seem real. I'm trying to rationalize what a blessing it is that they're doing so well, and that I have this extra time home to get things ready for them, but rationale only goes so far.

Day 7 ~ December 28th

I drove up to Albany with Matt's parents, since FIL had yet to see the babies (they were on their way to NH), then my dad came up later in the day to meet his grandkids. The babies are still not in the same nursery, the only reason being that there isn't enough room. It's so hard having Henry off by himself on the other side, while Ellie and James are together. I never know who I should be visiting and feel bad regardless of who I do see.

I was able to feed Ellie and Henry, but James was so exhausted that he was getting all of his feeds via tube and they weren't wanting to take him out of his bed. James' heat is down to 27c, while Henry and Ellie are still at 30c.

I bottle fed Ellie, but she was struggling with taking any of it (only 10ml)...she actually had an apnea episode while we were there, but was fine after the nurse moved her about. The nurse was going to tube feed her the rest of the shift to conserve her energy.

We spent quite a bit of time with Henry: I got him to bottle feed for a little bit (10ml), but I changed 2 diapers (1 poop-1 pee). They were going to give him the rest of his feeds via tube as well because of how sleepy he is.

I'm heading back up tomorrow. It's hard to believe that they're going to be a week old! It doesn't seem possible. There's still no prognosis as to when they'll be coming home. My guess: James, maybe the end of next week, then Henry and Ellie, maybe the week after. We were talking about having them transferred closer to home once they just need to put on weight, but I think we're just going to keep them at AMC and drive up and visit as much as possible.

Even though I know it's going to be INSANE once they're home...I'm ready for us all to be a family here together. To not have to split my time between the babies and Ave, and then between Henry and {Ellie and James}.

I'll leave you now with something I wrote the middle of the other night while I was pumping....

I wake, the middle of the night
Breasts growing heavier day by day,
regardless of the babies still 2 hours,
2 weeks away.
I miss those precious lives, so much a part of me,
and not.
I curl up close to my husband, chilled, emptied,
trying to regain some warmth in my arms
while there are no babies to be held.

If you go HERE you can see all of the pictures from the past week.