If you don’t have something nice to say…

Say it anyway! Thinking before you speak is such an antiquated idea! Okay, maybe it’s not so much the thinking before you speak as much as thinking things THROUGH before you speak.

Ok so I’ve already told you about the “Are they sure it’s not twins” comment. I’m sure there were other less than thought out comments made while I was pregnant but I thankfully have not retained them. But since Baby G came home it seems people are allowing their inner monologues to be not so inner.

A week or so ago we had gone to Wally World and I was wearing Baby G in the Moby Wrap. People often comment on his size and assume he’s a newborn. I generally don’t explain that he was a preemie right off the bat because it seems like too much info too fast. I guess I also find it funny to watch their faces as they try to figure out the age vs. weight thing.

Side note. I think it’s funny how everyone asks the same questions. How old is your baby? How much does he weigh? It’s universal. Everyone does it. I’m not sure when they stop asking the weight question. At what point does it not matter how much the baby weighs?

Back to Wally World. There were two ladies – a mom and daughter – who exclaimed over the sweet tiny baby. So of course they asked how old he was. 10 weeks. Oh my gosh he’s so tiny! How much does he weigh? 7lbs 8oz. *crickets chirping* You could see the gears turning as they tried to fit these two pieces of information together. I never let them suffer too long for fear of their heads exploding because you know they want to ask so badly why he’s so small. So I volunteer that he was a preemie and he was born 9 weeks early and weighed 3lbs 6oz. The daughter had just had a baby who was 9+ lbs. Here’s the fun part. The mom then states that I am so lucky to have had such a tiny baby. *more crickets*

Seriously?? Oh, yes, I’m so glad I was spared a horrible birth experience with a ginormous baby by having an emergency C-section 9 weeks early. *whew* Dodged a bullet! 5 1/2 weeks in the NICU… 9lb natural birth. Oh yeah. Choice is totally clear. Good thing I made the right one.

The second comment was by an older lady yesterday at the grocery store. I had walked in with him in his carseat and she offered me her cart. Naturally she commented on his size and how cute he is (because, my dear friends, he’s adorable) and asked his age. 11 weeks. Her comment: “He’s going to be so short when he grows up!” *face palm* So then I go on to explain he was a preemie, blah blah blah, etc etc.

People don’t think before they speak. While these comments (unlike the twins one) don’t bother me – in fact I think they’re funny – it still amazes me what people will say.

NICU Survival Guide

No one plans to have a premature baby. No one gets pregnant and sets out to have their baby early. I hope. You plan your nursery, you plan the birth, you plan the coming home… and then something happens that throws all those plans out the window. Babies are good that way.  Some moms have a little warning that their baby is coming early and others, like me, get about 5 minutes notice before they are knocked out and then wake up a mom. We read books and websites and blogs about pregnancy and birth and new babies but none of those prepare you for your baby’s early birth and stay in the NICU. While we had a pretty “easy” time of it as far as NICU stays go, it still would have been nice to have had some form of guide book or tip sheet to help us feel more prepared. So I thought I would put together a list of things I wish I would have known or that I think are important. These aren’t necessarily in order, by the way. I’m definitely not organized enough these days for that.

• 1) Since you probably already have determined if you are going to breastfeed or not, make it clear what your decision is and what you will and will not allow. This primarily affects breastfeeding moms. Most NICUs will advocate for breastmilk and you will get the use of a hospital pump. Baby G had a feeding tube for all but a few days of his NICU stay. Towards the end he was getting his feeds from breast, bottle, and tube until he got enough stamina to do all his feeds from breast and bottle. We knew that in order to go home, Baby G would have to be doing all his feeds without use of the tube so that meant bottles when I wasn’t there. Since I had always planned to EBF (exclusively breast feed) this upset me but I understood the need. I found out about two weeks in that they expected him to go home doing half his feeds by bottle. This meant more pumping for me. *sigh* But I’m glad I found out then and not right at the end. I also had them wait on bottles until breastfeeding was established. This might have extended our stay a little but it was important to me for breastfeeding to be what he did first.
• 2) Find out the hospital’s philosophy on touch, kangaroo care (skin-to-skin holding), and parent involvement with baby’s care. This is important. You need to know specifically what they believe and what their expectations are. If they allow touching (hand-hugging) find out when this is allowed and what circumstances would prevent you from doing so. How often do they recommend/allow kangaroo care? Are the parents allowed to be involved in general care (diaper changes, baths, etc). Touch is good for your baby. Kangaroo care is very beneficial for you and the baby.
• 3) Ask for a tour. My husband got a tour the first night but it was several days in when I got mine. What are the different areas/rooms, what is the progression through the NICU, is there a specific waiting room, is there a lactation room or can you pump bedside? Are there lockers for personal belongings?
• 4) Find out about what days they do what and when they will be ready for certain milestones. When is bath night, when do they get to wear clothes, when do they get to be held by someone other than mom/dad? That way you can be prepared. Also find out what you are allowed to bring in. We brought clothes, hats, blankets, a boppy, my robe, etc (I used the robe for kangaroo’ing). Make things as homey as you possibly can. I even had a drawer of snacks.
• 5) Take lots and lots of pictures. We took pictures every day for 38 days. They change so fast and have so many milestones and things term babies don’t have. Get pictures at weeks and/or month milestones with something constant to show size (stuffed animal, toy, etc). We didn’t do this and I wish we had. Get pictures of their beds and all the apparatus. If nothing else, I think Baby G will want to see where he spent the first 5 1/2 weeks of his life.
• 6) Get into a routine. I went to the hospital every day and spent most of the day. But I had to figure out pumping, showering, puming, getting dressed, eating lunch, packing dinner, pumping, driving, etc. So we finally got into a routine of when we’d wake up and how we’d do stuff in order to get us to the hospital around the same time every day. It helped things feel more “normal.” And helped us get there on time.
• 7) Speak up. YOU are the parent. Don’t forget that. Yes, there are other people taking care of your baby at this stage of the game but ultimately YOU will be taking them home. The hospital may have helped them be born and be helping them live, but you gave them life. If you don’t understand something, see #8. If you think something is wrong or needs to be changed see #9. If you want to be more involved (#9) say something. You should fully understand the situation in which you’ve been placed and you have the right to tell someone when you feel something isn’t right or you don’t understand it.
• 8) Ask questions. Again, this is YOUR baby. Sometimes the nurses/doctors get into a routine and sometimes forget there are people (parents) running around that are scared and confused and don’t understand the terminology or what all the tubes, wires and machines are. Ask if there are pamphlets of info. Go to http://www.marchofdimes.com/baby/premature_indepth.html (general info) or http://www.prematurebaby.ie/glossary.php (glossary of terms). Educate yourself but still don’t be afraid to ask fifty million questions. It’s your right. And you’re paying to be there anyway.
• 9) Get involved. Do whatever they will let you do. We could change diapers, take his temperature, change his pulse-oximeter from foot to foot, bathe him, etc. But we didn’t start out being able to do these things. It took some time before I basically took it upon myself to do them and stop asking or waiting for them to offer. This was MY baby. Why shouldn’t I change his diaper or take his temperature? Some nurses would assume we would do these things and others wouldn’t even offer. With those nurses I basically just stepped in and took over. If you were home you’d be doing these basic things so why not get in some practice when all the supplies are free?
• 10) Speaking of free supplies… take whatever they will give you. When we left we got whatever was left in his bed. Diapers, wipes, nose bulbs, baby soap, etc. Stock up on whatever you can. Again, you are paying for it. Also, our NICU tossed anything that hit the floor or was considered “disposable.” We snagged a paci or two that went on the floor and brought them home and disinfected them. They don’t have the time or the resources for this stuff but I’m glad we did because his preemie paci was the only one he’d use for the first 6 weeks he was home. And you can’t buy them anywhere. Get as many as you can.
•  11) As soon as you are possibly able, get your baby’s footprints and handprints. Our NICU did not do this automatically. He was several weeks old and over a pound heavier when we finally got his footprints. He was home before we got his handprints. I wish I could have gotten them earlier. If you can, get them multiple times to show growth. If they won’t do it, do it yourself.
• 12) Preemie clothes. Don’t go crazy with buying preemie stuff. They grow out pretty quickly but you will want some things for them to wear in the hospital. Baby G got his first clothes about a week in but was only allowed to wear t-shirts or onesies (no pants or footies) due to his PICC line for the first few days. Pre-wash a few things with dye-free fragrance-free soap. Also, hang dry them. 100% cotton baby clothes shrink and you want to get as much life out of these as possible and don’t want them to draw up. When they are ready for footie PJ’s (one piece) go for the snap up kind, not the zippered ones. That way there are multiple holes for the many cords and line to come out of. Label the insides with your baby’s name and designate a place in the area for dirty clothes/linens so the nurses know where to put them for you to take home. We found Carter’s stuff to fit the best (with the exception of some of their hats) because they are longer and slimmer and have longer legs than some of the other brands.
• 13) Baby Gear. Not all carseats are rated for tiny babies. Ours (luckily) was rated for 4lbs and up. Make sure whatever carseat you have or have picked out can handle a tiny baby. We also found that removing the shoulder pads that came on the carseat helped the straps stay on his tiny shoulders better.We have a pack n play that Baby G thinks is a torture chamber. So he sleeps in a swing or a bouncy seat that looks like a bassinet. Preemies often have reflux so sleeping on an incline also helps. I read on several online preemie groups that people had very good luck with this: http://www.toysrus.com/product/index.jsp?productId=12413335.Baby G does really well being swaddled at night so we have Swaddle Pods and swaddle blankets we use every night.I bought a car seat cover (not this one but similar idea http://www.target.com/p/Itzy-Ritzy-Peek-A-Boo-Pod-Rodeo/-/A-13997784) which is great for when they come home and you have to go out. Keeps people from getting too close because you can cover them completely. They make winter versions too that are warm and cozy. I highly recommend one of these.Most infant carriers (ones you wear them in) are rated for 8lbs and up. Baby G came home at 5lbs 6oz. The very best carrier I have found so far is a Moby wrap. They look hard to use and take a few tries to get it right but it is by far my favorite way to carry him. It is secure and holds them nice and tight. Baby G will sleep for hours in it and I don’t have to support his head or worry about him falling out. Something else I highlyrecommend. There are about a jillion youtube videos showing you how to use them too. I prefer the folded method. Which will make sense if you get one.
• 14) Keepsakes. Snag whatever you can from the hospital that shows their size or stay. I snagged his first paci (tiny little thing), a preemie diaper (he came home in newborn diapers), his blood pressure cuff, his first hat, his C-Pap hat, his bili-shades, etc. I plan to do a shadow box of all these things. Again, just things I think he will enjoy seeing when he gets older. And I’m sentimental. And a little bit of a pack rat.
• 15) Baby book. I found a baby book online that is specific to preemies. It has extra info that normal books (and term babies) don’t have. It was created by two NICU nurses and you can find it at http://www.earlyarrivalinc.com/.
• 16) Keep a journal. This can be a journal for you, for your baby, of the stay… whatever. I wrote down everything that happened. I also was given a journal by a friend to write down my personal thoughts and I chose to use this to write to Baby G. Now that I’m home I haven’t written in it much but while we were there I wrote in it often. You need an outlet for all the things you think and feel. Writing them down is a good way to do it. It also helps you remember those early days that seem to blur by.

This is all I can think of for now. I’ll do another post about what to expect when your baby comes home. But it’ll have to wait. I’m still pretty sleep deprived so it takes me awhile sometimes to formulate coherent thoughts and then transcribe them grammatically and with correct spelling. I do have an infant you’ll remember.

Home: Day 1

HE’S HOME!!!

Our rooming in at the hospital went as well as can be expected I suppose. Baby G was having trouble going to the bathroom again so he did a lot of grunting and pushing which in turn made him spit up a lot. I did zero sleeping – I probably got an hour to an hour and a half total. But it was so nice to be right there with him and to be able to snuggle and hold him during the night. Even if I was so exhausted I wanted to die. The next morning we got him all set up in his carseat and had the hospital’s safety seat technician take a look at everything. He determined that the shoulder pads on the carseat were too big and were pulling the straps off Baby G’s tiny little shoulders. The carseat is rated for 4lbs and up so we knew it would be ok to have him in it and the tech said the one we got is a “Cadillac” and very safe. That was nice to hear. Mom drove us home by way of Babies ‘R’ Us (had to return some stupid mattress pads) and I sat in the backseat with Baby G. He didn’t wake up the whole ride home. I took a long nap yesterday afternoon while Mom held him (a hardship I know) so that was nice.

Last night yielded a little more sleep for me but not much. Baby G apparently does not enjoy his pack n play so after trying it out around 1am we came back out into the living room and I slept on the couch while he slept in the swing. He still didn’t sleep well, but better than the night before. I was afforded a few minutes here and there in between him waking up. When Husband left this morning I went back into the bedroom and tried out the pack n play again. We did marginally better until I had Mom come get him so I could sleep for a bit. Turns out he really prefers the swing as Mom put him into it and he slept for 3ish hours straight without moving. We think several factors prevented him from sleeping in the pack n play and I hope to get those resolved tonight. Our bedroom is colder than the living room so he needs a hat and probably a warmer outfit or blankets. His bed, while elevated slightly, isn’t nearly as high as he’s used to being. Also, he is a roly kid and flails all around in the pack n play. So tonight I will make him a nest like he had in the hospital and dress him very warmly and hope that helps.

On the breastfeeding front he did pretty well throughout the night. I look forward to when he will nurse longer and less frequently as he generally nurses 5-15 minutes at a time and then sleeps for a bit. Usually a nursing session lasts over an hour before he is done. He is supposed to be getting 4 fortified bottles a day with breastfeeding whenever else in between. He will get a dose of iron in one of his bottles during the day as well. The bottles are fortified with a teaspoon of special formula for every three ounces. I don’t see how this does anything but hopefully he won’t need it for long. I’m still having to pump due to that and the fact that he doesn’t really take enough from me at this point. My pump arrived yesterday and while it works great and functions much like the hospital pump, it makes a horrendous high-pitched beeping noise while it’s working. It’s so bad I’m sending it back and paying an extra $100 for the other pump I was looking at. It’s pointless to try and swap it out as the reviews I’ve read on several different websites state that Ameda’s customer service doesn’t seem very concerned about the beeping; that it’s “normal” and some pumps do it while others don’t. I don’t want to risk getting another pump that beeps so I’m just going to suck it up and buy the other pump. It stinks because all the flanges and parts that I used with the hospital pump work with the pump I got.

And, as the old adage goes, when it rains it pours. Yesterday Husband took my car in to get the oil changed and found out my car was way out of alignment and I need new tires pretty soon. Apparently Vibes are notorious for eating tires but the place we get our tires from declined to do an alignment the last oil change saying I didn’t need one. Husband will talk to one of the managers there to see if they will help us out with the new tires since they told us we didn’t need an alignment the last time. Then, this morning, the starter in Husband’s truck went out. Thankfully he should be able to fix it himself but it’s still the extra cost. Mom had to get up and take him into work this morning since he didn’t want to leave us without a car just in case something happened. Oh yeah, and there is something wrong with the AC in my car. Again, Husband should be able to fix it but it’s just one more thing.

Something I didn’t post the other night just because of the rooming in was that Baby G got circumcised Tuesday morning. We found out that afternoon that after the procedure, one of the volunteers (a sweet old man) cuddled and held him for several hours. The nurse said they both enjoyed it very much. We had met the man at the Ronald McDonald room and he was just a cutie. Very much a cuddly grandfather type. Since we weren’t there that morning after it was done, Baby G got his snuggles anyway. I think that is so sweet. Wish we could have gotten a picture.

NICU Day #36

So Wednesday is the day! Baby G passed his hearing test today, will have his carseat test tonight (praying he passes on the first shot!), will be circumcised tomorrow, and tomorrow night Husband and I will be “rooming in” in the hospital with a monitor-free Baby G. I find this equally wonderful and terrifying. Basically we will stay in a room like the one I was in during my stay and we will spend our first night with him here just in case we have questions or need help. Then Wednesday morning we will get all our discharge information and be homeward bound!

He is still eating well (except for tonight so far as he has been passed out since his bath) and gained 1.2oz since last night (which is good because he had only gained .2oz the previous night and they don’t like that).

I can’t believe this is finally almost over. I can’t believe I will finally be able to bring my sweet little boy home. Mom and I cleaned house today and the pack ‘n play is set up in my bedroom and the swing has been brought downstairs and set up in the living room. I ordered my pump today and should get that on Wednesday. Everything is ready for him to come home! God has been so good to us and has blessed us so immensely. The next hurdle will be figuring out how I can stay home until Sister comes in July. My leave runs out May 14 so I will be out of work another 2 – 2½ months until she comes. Husband and I are ok with this but I will have to see what work says. I’m a little anxious about that so please pray they are understanding and do not give me too hard a time about it.

NICU Day #35

Today when we got to the hospital, the nurse told me that Baby G had started stirring around so she went ahead and got him ready for me (changed his diaper, took his temp, etc). When I flipped back his blanket to get him out I noticed his pulse-ox was not on. I mentioned it to the nurse and she said they had written the order that morning to remove it later on today, depending on how he did. She said that he had taken all his bottles from midnight to 9am this morning and was now allowed to feed on demand (to an extent).

After nursing him for about 10 minutes or so I put him back in his bed and turned around to say something to TJ. When I turned back around just a few seconds later he was laying there so sweetly with his NG tube completely free of his nose. So the feeding tube came out a little earlier than expected. He ended up getting a full feeding from me at noon.

As I was nursing him, the NP came in to talk to me and basically said that Baby G was on the fast track out the door. As long as he continues to eat, gain weight, and doesn’t have any bradys he can be going home sometime this week!!!!! We will bring in his carseat for the carseat test tomorrow and as long as he passes that he won’t be here much longer. After his heartrate drop yesterday I’m super nervous about him having a brady (even though he hasn’t had one in ages) because it means another 5 days here. Please pray with all your might that Baby G does all the right things and is ready to go home soon.

NICU Day #34

Last night Baby G weighed 5lbs 1.1oz. Yesterday he had a great day as far as feeding goes. When we got there at noon there was a note on the board from Nurse R(his nurse from the night before) written from “Baby G” letting us know he had a good night and that after Nurse Rhad fixed his wiggly tube (which he didn’t even complain about) he slept much better. She also let us know he took all his 6am bottle in only 15 minutes. Then we found out he also took all of his 9am feeding by bottle. He nursed at noon and took most of the rest by bottle but since we didn’t know exactly how much he’d had from me we just let him be with that amount. He was done eating so we didn’t push it. At 3 he took 35 out of his 45ml and at 6 he was zonked out so he got fed by tube. At 9 last night he was super alert and latched pretty quickly, nursing for almost 30 minutes not including his little breaks. Then he took the rest of his feeding by bottle very well. He is coming along and I can see the light at the end. It feels like it never gets any closer though.

Today we are going to be there for all his feedings from noon to 9 so I can see how he does. I have a feeling sometimes they are not giving him enough time to wake up at assessment times. Also I think the volume they are giving him is sometimes more than he wants. They base his volume off his weight but term babies eat until they are done, not until they have finished all recommended ounces of liquid. So we’ll see what he does today and how he acts. I’m going to push to allow him to feed as much as he wants and then to leave him alone (food-wise) until he is ready to eat again.

Yesterday Mom and I went up at noon and then left to run some more errands and work some more in the house. Mom made noodles to go with the Kalua Pig she made the other night (most of our food is made in stages these days) and worked on some pictures for me in between cleaning up the kitchen and other various things. In between my ever so frequent pumping sessions I put away a bunch of stuff in Baby G’s room and did several loads of his tiny laundry. A little more organizing in his room and that part will be finished. I still have some things to put up on the walls, but his room is coming along nicely. I can’t wait to bring him home to show him. And then whisk him away to his pack ‘n play in my bedroom.

{Evening Update}
Baby G is up to 5lbs 2oz, but after his super full diaper this evening (after not having a poopy one all day) he probably wasn’t weighing that anymore. The very good news is he got a full feeding nursing tonight! Technically he only got 38 out of his 45ml but he drank until he was full and was awake but not interested in any more. So as far as I’m concerned that was a full feeding. He’s not going to want 45ml every time he feeds consistently.

I did get a scare around 6pm when I was holding him while his feeding was going. I heard his pulse-ox alarm go off (which is does very very frequently due to the sensitive monitor even though it’s generally not a real reading) and happened to glance at his heart monitor and his heart rate was dropping fast. It made it down to 80 (which is the threshold for a brady) as I was sitting up with Baby G and rubbing his back. It never alarmed (which would have meant an automatic 5 more days in the NICU) but it scared me to death. He had one other issue with his heart rate dropping low on Thursday but it never made it below 100. That time we are pretty sure was caused by reflux and I’m guessing tonight was too but that didn’t help me from being worried about it. Once he’s home he won’t be attached to any monitors that will tell me if he’s stopped breathing.

On a more fun note, Baby G got his big ole feet printed tonight. One of our nurses tried last week but we wanted to give it another shot. He’s so relaxed that his little legs and feet were stuck out the whole time. He did so good with it. Tomorrow we’ll aim for handprints.

As I was cleaning up, Mom caught Baby G trying to pull out his feeding tube again. So I pushed it back in and he lost his hand privileges again. Because he was wearing a onesie without little hand flaps, Baby G is now wearing a bootie on his right hand. He will be the laughinstock of all the NICU babies. At least he doesn’t have to wear a long-sleeved baby t-shirt as a pacifier holder like Big Baby.

Big Baby is a very large term baby in the Intermediate room where Baby G is. He had to have been 12 pounds at birth at least and cries ALL the time. We’re not sure what’s wrong with him or why he cries so much. He sits in a swing a lot and apparently isn’t great about keeping his paci in so they improvised a way to keep the paci held in his mouth. It’s a long sleeved baby t-shirt rolled up and tucked around his head. The t-shirts are also used as neck rolls. The NICU nurses are very resourceful like that.

Pray like mad that we get to go home soon. His last Epogen shot is tomorrow night and we’ve already seen an increase in his energy level but he still has a ways to go. He just has to prove he can eat all his meals. On Monday I plan to talk to the Dr or the NNP to find out when we can allow him to eat on his own schedule instead of theirs. Instead of 45ml every hour there should be an option to eat Xml per day or a larger amount over a longer period of time to take into consideration his own hungry tummy. Hopefully they will be responsive and work with us. I’m tired of being there and I’m tired of leaving my baby every night.

NICU Day #32

Baby G had a rough night tonight and I did as well. We went ahead and did his bath before his 6pm feeding in the hopes it would not tire him out for the bottle as much as it tired him out for nursing. He did well with his bath as usual, but after he was dressed the nurse had to redo the Tagaderm on his feeding tube as it was coming off. The problem is the stuff is so dang sticky and I don’t think they take enough time taking it off. He cried and cried, sounding terribly distressed, almost to the point of screaming. I’ve never seen him so upset. The few times I’ve seen him upset paled in comparison to tonight. I also have never seen his little lash line wet with tears either. I managed to hold it together until the nurse left his pod and then started crying as I held him. He stopped crying pretty much after she was done but he was so distressed I had a hard time dealing with it and he clung to me once I was able to pick him up. I ended up sitting down with him and nursing him for about 10 minutes before he fell asleep.

Tonight after shift change he was asleep but restless so I picked him up and held up on my chest until it was time for his assessment. Even though he was still and asleep while I held him, he kept making squeaking/groaning noises (they are hard to describe) that he makes every now and then, but he was doing them almost constantly. During his assessment he did ok – he was a little fussier than normal – but when I sat down with him to nurse he just wasn’t interested. He laid in my arms and looked around and at me but didn’t seem to want to nurse. He managed at one point to get his finger up by his tube and yanked it out again. At least there wasn’t milk pouring through it at the time. So on top of his Tagaderm incident from earlier he also had to have his feeding tube shoved back through his nose.

I finally laid him back in his bed thinking we would just try a bottle when he started rooting around. I picked him up and got him to latch while I was standing at his bed so I sat back down with him and he nursed for about 10 minutes. Honestly, I needed him to nurse tonight. I needed to be close to him and to give him some comfort. Mom tried giving him a bottle after and he just didn’t care. He kept shoving it out of his mouth. We finally had Nurse R hook up his feeding tube. Mom held him while he was fed (I had to pump. I always have to pump) and he still seemed pretty restless. At one point she became worried about the strange noises he was making and the fact that he just didn’t seem to be able to get comfortable. He made a little choking noise and his pulse oximeter went off (which is does ALL the time) but when we looked at his heart monitor his heart rate was dropping fast. It got down to 108 (it’s usually in the 145-170 range) pretty quickly and as I was calling for his nurse, Mom moved him out from her chest to look at him. Before the nurse could respond his heart rate started back up again but we were both a little freaked out by it. He had a little milk at the corner of his mouth so it’s probable that he was having some reflux and just couldn’t resolve it before it dropped his heart rate. After his feeding was done he seemed to settle down and relax and sleep.

When I got him back into bed right before we were getting ready to leave, I noticed his tube was sticking out some and was 2cm out farther than it was supposed to be. Nurse R said this could have caused some of his later discomfort as it might have been moving in and out when he breathed or sneezed and if it wasn’t in his belly in the right place it could have been irritating him there too. Later tonight she will have to remove the Tagaderm that just got put on to push the tube back where its supposed to go and retape it a little better.

He did reach 5lbs tonight but he didn’t have a great day as far as nursing and bottle feeding went. I truly hope tomorrow is better for him. I hate seeing him in distress and I hate leaving him there after a rough day. Please pray for his continuing progress and pray he gains ground quickly. I desperately want to bring my baby home.

NICU Day #31

Last night Baby G took almost half a bottle at midnight and then a full bottle at 6am. He nursed at noon, getting around 20ml and then was too sleepy to finish it off with a bottle so the tube it was. He was still asleep at his next feeding (which meant our estimate of how much he got from me was pretty accurate) so it was the tube again. Husband gave him another bottle at 6 and he drank the whole thing. He breastfed again at 9, taking another 20ml or so and then was able to stay awake and finish his feeding by bottle again. The faster he can add bottle feeds to his day the faster we can go home!

His weight tonight was 4lbs 14.4oz, which was only up .4oz from last night, which was only up .4oz from the night before. His slower gain is probably due to all the extra effort he is expending to take his meals from breast and bottle. Hopefully they won’t hold this against him. The took him off the Pro Pass the other day partially at my request, and I think that is actually helping him be more interested in eating. He needs to be hungry and showing cues for them to bottle feed him during the day and at night when we’re not there. I also think this is helping his reflux and his belly.

Speaking of his belly… In addition to the Epogen shots, Baby G is getting iron through his feeding tube twice a day. It works in conjunction with the shots to help boost his red blood cell production. It also makes his poopy diapers stink to high heaven. It’s enough to gas you out of the room. I am looking forward to him getting off the iron simply to make changing his diaper less heinous. But on the positive side, he is pooping more regularly and his belly is much softer and more relaxed.

Normally when I nurse him it takes him a few minutes to latch on. He generally likes to look around first and see what’s going on before he settles in. His little hands like to help him get situated and he wiggles and warts around until he is ready to nurse. Once he gets latched on pretty well (sometimes it takes him a few tries to be ready) his hands and body relax and he snuggles up against me. It’s the greatest thing and I love that I have that with him. He generally nurses for 10-15 minutes before he starts to fall asleep at which time I will pick him up to burp him. At least half the time he lets out a big burp before I even get him upright. Nothing like a baby that burps himself. Then, if he’s still awake, we’ll try again and often he will nurse for another 10 minutes or so. He’s gaining more longevity in his sessions and also seems to be transferring more milk faster. I pray this will continue so that his nursing sessions will be shorter and more productive. This will also help him head home faster.

NICU Day #30

This morning we found out that Baby G took two full feedings from bottles last night! He was sacked out when we left last night – he didn’t even protest (or wake up) when the nurse suctioned his nose – so she skipped the midnight feeding (plus he got his 4th shot) and offered him the bottle at 3am and 6am and he took all 43ml both times. The nurse this morning fed him through his tube at 9am, knowing I would be breastfeeding him at noon. He did super well at his noon feeding, nursing off and on for close to 25 minutes. The scale said he only got 10ml but I have a really hard time believing that. I was thinking closer to 18 or so. We decided to see how he did with trying to finish off his feeding with a bottle so Mom gave him the rest of his milk (minus the 10ml the scale said he got) and he drank all but 10ml. He was still awake at the end of the bottle but just didn’t want it. Which means he probably got more from me than the scale thought. He pretty much slept through his 3pm feeding so Husband will try another bottle at 6pm and I will nurse again at 9. He is coming along so well and pretty quickly. I was so excited that he had enough stamina to breastfeed that long plus drink his bottle. We are heading in the right direction!

Tomorrow Mom and I will come up in the morning for his noon feeding and then head back to the house to get some things accomplished. I hate not being here but at the same time we are running out of food to eat and I really have to start working on his room. So hopefully we will be able to get a few meals put together, some laundry put away, and a little organizing in his room done. Then we will head back up for dinner and his 9pm feeding. Husband will already be here and will have done his bottle at 6. Keep praying that he continues to move in an upward trend with this as the sooner he is taking every feed from me or the bottle the faster he will be headed home!

NICU Day #29

Today TJ gave Baby G his first bottle. He took 18ml and did pretty well until he got distracted by his insatiable need to immediately fill every clean diaper you put on him. This morning he decided to not even wait until I was done wiping him before he started up again and totally filled the brand new diaper I put on him. He also likes to pee little fountains everywhere (like in the scale) when you have him un-diapered. But anyway, he successfully drank from his bottle and still nursed pretty well (before he passed out) tonight. Tonight was bath night so I think the bath wore him out so that he didn’t last as long breastfeeding as he normally would. He got 10ml from me tonight and around 10 this morning. It was frustrating for me to see him with the bottle. I wanted so badly just to breastfeed him until it was time to go back to work. I know he’s still getting my milk, but I wanted to be the one to give it to him. But I want him to come home and that is the only way.

Tonight will be shot #4 of the Epogen. Today I noticed that they put a little circle bandaid on the spot where the shot goes and he had two on one thigh and one on the other. His little legs are so small there wasn’t much room for any more bandaids. But tonight when we were doing bath I noticed that the two were gone so they must have taken them off to make room for more. They are also giving him iron in conjunction with the Epogen. It is administered through his feeding tube and currently the only side effect seems to be making his poopy diapers smell horrendous. Diapers of death. They have also taken him off the Pro Pass (to see if some of his issues with pottying and reflux resolve) so hopefully he will continue to gain weight without it so they don’t have to put him on something else.

Husband, his Dad, and a good friend of their family set up the nursery furniture yesterday. It looks so nice all together and I can’t wait to find the time to set up everything else. I finally bought a diaper bag today so we are slowly getting stuff together for him to come home. I still have to get my own pump (I have to trade this one in for Baby G) and a pediatrician. These things are slightly more important than putting his clothes away, but not nearly as fun. I mentioned we already have his carseat so we will just need to get the base installed and he will have to pass his carseat test a few days before he goes home.

By this weekend I’m guessing Baby G will hit the 5lb mark. I’m pretty sure it was yesterday that he managed to top 4lbs. Everyday he looks different and even though I know he needs to gain weight I feel like it’s too fast and they are taking my tiny baby and turning him into a giant meatball. I know a 5lb baby is still small but it still seems so quickly that he’s getting so big. Tonight he weighed 4lbs 13.6oz. Today was day two without the Pro Pass and his weight doesn’t seem to be slowing, but the fact that they found a ton of my colostrum in the milk freezer and has been giving it to him probably is helping some too. The lactation consultant had a small freak out when she realized there was colostrum left. She decreed to the nurses that those containers better be used up ASAP as he should have gotten that milk ages ago. They also finally depleted their stash enough there that I was able to take some in from my freezer which is quickly becoming overrun with milk.

I’ll be interested to see tomorrow how Baby G does tonight as far as keeping his temperature up after his bath. Last bath night he didn’t recover well and was cooler than they prefer several hours after. Tonight we quickly dressed him, covered him in a warm blanket then another one, and then Mom held him while I pumped and the nurse changed his bedding out (Mondays are linen change days). I also got a little fleece sleeper outfit from Babies R Us today (for $4 as it didn’t come up in the computer!) to take for him to wear after his next bath in the hopes it will be warm enough to help him keep his temperature up. We will also have to probably do bath earlier in the day so to not interfere with nursing at night until he gets more stamina. Poor sleepy baby.