Yes, he really IS! It's like a dream come true! :)
Today we got to the hospital around 10:30 or so. The drs came on rounds, and confirmed that Julian was all set for discharge! We had prepared a gift for the NICU staff---I have on hand a few items that I make with my pressed flowers, so we selected an 8 x 10 picture and wrapped it up with a note thanking all the staff for saving Julian's life. The resident dr got to open it, and everyone just exclaimed and oooh-ed and ahhh-ed over it! They were really impressed that I pressed the flowers and made the picture---although that was many months ago! They put it on the front desk until they can get it hung up (which requires a work order). But we are equally impressed with all they could do for Julian, not just saving his life but also doing everything possible to see that he will grow healthy and strong after his rough beginning!! :)
We went over some paperwork with the nurse, and reviewed instructions for Julian's medications. We collected our breastmilk from the freezer, and packed all the stuff we had to take home. Truman made several trips to the car---and it was raining out! I was hungry so we ate a quick snack. Around noon, the resident dr came (his name is Erik, and he is cute---young, tall and slim, with blond curly hair!) and did one last health check on Julian. I changed Julian's poopy diaper, then nursed him and topped him off with a bottle of enriched breastmilk. After holding him for a bit to let his food settle, I changed him and dressed him in his going-home clothing. He looked so darn cute! We took pics and the nurse took some of the three of us. Then we waited for a bit for the respiratory nurse who was coming home with us.
We left the hospital around 2:15 and we got home around 3:30! In spite of the wet weather, we made really good time coming home. The EMT's were already here waiting for us, as well as the man from Keene Medical Supply that was bringing us more O2 tanks. We got Julian out of his car-bed, me holding the baby, and Truman lugging the monitor and O2 tank. Then everyone trooped into our house, and down the hall to our bedroom, where the baby will sleep in his co-sleeper. I had done a little picking up and sweeping the night before, so my house wasn't quite as messy as it usually is lately! :P The nurse talked with the EMT's while I changed and fed Julian again. Truman helped the O2 man, and soon the visiting nurse arrived. There was more paperwork (I think I'll need a new file cabinet just for Julian's papers---LOL!)
Eric and Jamie arrived home from school, and were thrilled that Julian is home now! The evening has been very busy, with taking care of Julian, getting dinner (leftovers), and trying to get a little organized now that Julian is here. I re-packed his diaper bag for his visit to the pediatrician tomorrow. I found his wipes which I had somehow forgotten to get into our bedroom. I put all his meds, syringes, bottles (we are now using fast-flow hospital bottles so he doesn't get too tired to finish eating), etc in a plastic storage box on top of his clothes dresser.
Julian is sleeping right now. He is in the co-sleeper about 1 foot away from me. :) I just nursed him a little bit ago, and he sure does love his boobie! As soon as I pick him up, he turns his face to my breast and roots like crazy! He nurses well, though we are using a nipple shield to make it easier for him. I think he is just so happy to be with his family! :) We sure are happy to have him home with us!
April 7th. Things are good---I just don't have much time to type now. Julian nurses most feedings, and I usually need both hands to support him since he is so small still. And then I top him off with a bottle of enriched breastmilk---and that definitely takes both hands! He is sleeping right now. He will get weighed again today by the visiting nurse. He was weighed Tuesday at the NICU before discharge, then he was weighed at the local pediatrician's office Wednesday, then again by the visiting nurse here on Thursday. The ped's scale showed a 3 oz weight gain, and the VN's scale showed almost that much weight loss. Hopefully he will have gained more by today. We have to remember that 3 different scales can be a little different in themselves, so the overall picture from several days or even a week is what is most important. If he really doesn't gain, he would have to be re-admitted, so I am anxious to see him gain!
Julian is such a spitty baby! Good thing I picked up several extra sleepers at the thriftshop during their spring sale. I keep several burp cloths handy at all times. Today I tried putting a soft bib on him while I bottle-fed him, but he spit up so much it ran down on his sleeper anyway!
He just gets so much air in his poor little tummy! The nurses liked to say he burps like a man! LOL Also, when he poops, his efforts often bring his food up the other way at the same time. :P Not that he poops hard, they are pretty runny from his meds he has to take. I think he just has an immature valve between his tummy and his esophagus and food comes back up pretty easy.
Today when the nurse weighed him, he suddenly started to pee. His little fountain went shooting over to the suitcase and my sneakers that were sitting nearby! LOL His weight was the same as yesterday. I had hoped he would gain, but at least he did not lose.
April 11th, Drs visit: Julian is doing very well. The drs were very happy with his weight gain---a little over 2 ozs in the last week. I was worried that it wasn't enough, but they said that many preemie babies lose a little when they first go home because it's such an adjustment for them. So the drs were very pleased that Julian actually gained. They asked about how I am feeding him, and were very happy with what I am doing. He eats 9-10 times every 24 hrs. Usually he will nurse first, and then I top him off with enriched pumped milk. However, usually one time during the night I will just nurse him and we both fall back asleep. Often he then wakes sooner for his next feed so I will then fix him a bottle of enriched milk. I am keeping a "breastfeeding log" so I can keep track of when he eats, how long he nurses (which side), how much supplement he takes, plus how many wet and dirty diapers he makes, and I even note when he spits up a lot after eating! Oh, and I write down when he got his medicines too.
He also had his eyes checked and his ROP has corrected itself, but his eyes are still a bit immature, so they want to check again in 2-3 wks.
He�s doing great with his O2---he only needs a very little amount. He hovers around 25 cc's of O2 most of the time. The first few nights, he needed it turned up to about 50 cc's but that still isn't much at all. The last couple nights, 25 cc's has been enough. He also needs up to 50 cc's when we take him in the car. The respiratory dr doesn't want to push him off the O2 too fast---she thinks he'll be on it a few more weeks.
At first during the night, his monitor would alarm and wake me up before he would fully wake to eat. His monitor will alarm when he de-sats, meaning his extremities don't have quite enough O2. He will often stretch as he wakes up, and that causes him to de-sat. But now I hear him stirring first, and sometimes he never even sets off the alarm. I love having him right beside me at night---that co-sleeper is the best investment we've made! I also take him into bed with me to nurse at night, and if he is on the outer side of the bed, the co-sleeper prevents him from falling off.
I am SO glad he's home! I feel that he has settled right in with us, and though I get less sleep at night, I feel a lot more relaxed. It's like our lives are less complicated now that we aren't constantly running to the hospital and needing to make arrangements for the older boys.
At the same time, I like having him on a monitor. The kitchen is far enough away from the bedroom, that it gives me a safety net when I can't be sitting right next to him. Tonight I was never more grateful for the monitor. I heard his alarm go off, and it didn't stop quickly like it will if he had just stretched. So I came down to check on him and I saw he had spit up. He was fussing so I picked him up and then I realized he was breathing strangely. He continued to de-sat, and the sat number got down to 50%. He was also dropping his heart-rate lower than normal. That isn't good, so I cranked up his O2 to give him relief, and than I realized what had happened. When he spit up, it went into his nose, so he needed to be suctioned! Of course I couldn't find the suction bulb in the mess of stuff in his drawer, so I called for my mom to help me! She held him so I could paw through the drawer with both hands and I found the bulb quickly. I suctioned him; there wasn't much to get out, so I think he was clearing it on his own, but I am sure it was very uncomfortable. I can remember throwing up and having it go up my nose, and that burns! Yuck! So I held him and patted his back, and soothed him as best as I could until he was fast asleep again. After a good while I laid him back down. Then I washed the suction bulb, and this time it is sitting in a little bag on top of his drawers!
Mom has been here visiting for a few days, but she leaves tomorrow. After what happened tonight, I am a little nervous about being alone all evenings with the three boys while Truman is at work. But it's the way it is. If Truman worked days, I would still be alone for hours with the baby. Julian will grow and continue to get stronger, so there will be less to worry about. And at least with the older boys home, if I need Eric to help me, he can do simple things for me. I need to teach him how to dial 911 in case we ever need to.
I only pump 2 times a day now, since Julian is nursing more and I really don't need as much pumped milk ( I still have hundreds of ounces in the freezer!) My supply has been just huge---about 24 ounces a day! But Julian only takes about 12 to 14 ounces of supplement per 24 hrs. When Julian first came home, I actually got engorged from him nursing in addition to my pumping! That�s why I cut back on pumping and I also had to use ice packs for a couple days to help my breasts get the message to reduce production.
April 20th. We had a pediatrician visit today for Julian at 10:30 am. Truman had PT at 9:30, so we went together to the hospital clinic at 9:30. Truman went for his PT, and I took Julian up to the Women's Health Dept. to see if my OB had a minute or two to see him. She hadn't seen him since his emergency birth when she delivered him! The receptionist sent a message to my OB that I was waiting. Meanwhile, Linda the prenatal coordinator came out to see us! She was so excited to see Julian, and I gave her one of his birth announcements and a small photo I had printed. Then Truman showed up, so Linda took us into her office and we talked for a few minutes. Then my OB Dr DeWitt came down the hall. She hugged me and then said how good Julian looks! A little later, Sarah the midwife who assisted in my C-section came down the hall so, we showed her the baby too. We were grouped around the doorway, and then we saw each of the other two OB's in the practice---Dr Mackenzie and Dr Stolper. So one at a time they too came down the hall and congratulated us on Julian! Dr Mackenzie said, "Now he was due this week, wasn't he?" Yes, indeed. The 18th by my first u/s, or the 20th by that little paper wheel thingy! They were happy to learn that Julian has been home for over 2 weeks, and he is doing well considering everything! I was very happy that we got to see ALL of our OB drs at the same time! Like what are the chances of that!?!?
Then it was almost 10:30, so we went over to the Pediatrics Dept. Julian did not gain as much weight as we would like to see. He only gained 10 grams since his weight check on Monday, the 17th. At least he didn't lose, but we aren't satisfied with so little gain. He was doing well right up to Monday. He had gained 200 grams (or about 7 ounces) since coming home on April 4th. We need to be seeing at least 3.5 ounces or more a week. I talked to the dr about the fact that Julian has been even more spitty than usual the past 3 days. It's less like spitting up and more like projectile vomiting. I was feeding him his supplement in the office and he obliged by throwing up almost the entire feed right in front of the dr.
I have also been having trouble getting Julian to latch on the breast at night for the last 3 days. He will latch fine during the day, but not at night all of a sudden. I was getting very frustrated because I really do want to nurse him at night. The dr thought I should talk to the LC's, so we did---but after Julian's blood was drawn to check his electrolytes and blood count. His blood work was fine, so that is a good thing.
I fed Julian some fortified milk again, right after his blood draw because he was screaming, but then we headed over to L&D to see the LC. By then Julian was asleep so we just talked. I told her how Julian is currently refusing to latch on the breast at night, even with a nipple shield. At those hours I am too tired to keep struggling with him, so she said if he won't latch on I should just give him the bottle of supplement, instead of us both getting upset that nursing isn't working. During the day, we are going to continue supplements of milk fortified to 27 cal as well, but I am going to try giving him 30 cc (or less if he BF well) every 1.5 to 2 hrs (+/-), instead of 45 cc every 3 hrs. I am still going to try getting him to breast during the daytime, and we will work to get him latched more deeply than he is---she gave me a smaller size nipple shield to try. We are also going to try keeping him in a more upright position after all his feeds to see if that helps minimize his spitting up. I have a simple bouncer seat that is in a 45 degree reclined position---we can use that *without* bouncing. We really need to get him gaining better again.
I expressed concern about using the nipple shield long term, but she said as long as we keep a close eye on my supply, it shouldn't be a problem. Julian can't latch without it, so we *have* to use it. Another thing she suggested was maybe pumping a little right before BFing Julian, 1) to get a let down so my milk is right there for him (I think that some of his frustration with latching at breast is having to work for a letdown), and 2) so he is getting more of the fattier hind-milk after I have removed some fore-milk. But this is more work, and I already feel pretty maxed out!
So except for pumping ahead of feedings, I put this plan into action. I am feeding Julian less more often. I am putting him in his bouncer to sleep so he is reclining instead of flat. And we are using the smaller nipple shield. So far he is not spitting nearly as much. Friday night, the 21st, the visiting nurse came to weigh him, and he had gained 50 grams! That is almost 2 ounces! So his weight now is 5 pounds 15.2 ounces
I had cut back on pumping to better match what Julian actually takes for supplements. Now since he isn't going to breast as much, I am trying to pump more. But I am finding a big difference between pumping while separated from the baby and pumping with him home. When he was at the hospital, it was much easier to pump as part of my routine. But now that he is home, our schedule is so chaotic, and it is so much harder to fit pumping in. It�s like I'm constantly running in circles. I am feeding the baby. Someone else needs help with something, so they have to wait. As soon as I am done, I attend to them. Oh, yes, the washed laundry needs to be thrown in the dryer. Ooops, the phone rings---it's someone calling about an appointment we have or need to make. Have to wash the bottles, and mix fortified milk for next feeding. Grab a sandwich while I am at it. Oh, yes, I need to pump so I head to the bedroom for that---except that I left the clean pump flanges in the kitchen, so go back to get them. Oh, no! Jamie was trying to get some more juice and spilled it! Clean that up, and by then I forgot I need to pump! Oh, yes, I need to go to the bathroom. I trip on some toys and yell at the boys to please pick up their mess! Truman calls from work on his supper break, Eric has homework, the kids need baths, the dishes need to be washed, the dry laundry needs to be folded and put away. The list goes on.....and the baby wakes up and needs to be fed again and again and again!!!
This too shall pass. Some day Julian will be stronger and he will nurse, and he won't need supplements---and feeding him will be a whole lot easier. But I can totally see why some moms give up BFing when faced with a situation like this. I am just too stubborn to give up! We will get him to breast 100%, I am sure of it. He is doing some already, just not as much as I want.
Also, once he gets off O2, he will be a lot easier to carry around, and we won't be tethered to a 4 ft radius from his bed. Then if I need to get him supplement from the kitchen, I can carry him with me instead of leaving him crying in the bedroom waiting for me. :( It WILL get better! Nothing beats the breast which is ready at the right temp any time---I just need to convince Julian of that! LOL
Julian has decided that he likes to have his bouncy seat moving, but it has to be bounced manually. Sunday, I asked on free-cycle if anyone had a vibrating bouncer they were willing to part with. The person who replied with one is a good friend of mine who still lives in Newport where we used to live! LOL I never thought of just asking her. Too cool! Oh, and one of the LC's called to check on us, and she offered to make us a meal this week. How sweet is that!
April 25th. I have permission to turn off Julian�s O2 and see how he does! He has been needing less and less O2 to keep his saturation levels up. The last 4 days I had his O2 flow turned down about as low as possible without being off entirely, and he was still maintaining his sat level between 97 and 100. So I called and asked to talk to the respiratory nurse---she called me back early this afternoon. I told her how low Julian's O2 has been and asked if I could see how he handles it with no O2. She said it sounds like it's time to give him a trial run. He is still on his oximeter, so we can monitor how he does. But I turned off his O2 and took out his nasal cannula (she told me to remove it so it does not obstruct his breathing). He looks so different without the cannula! I want to get some pictures of him later. So far he is doing great! His sat level is staying low to mid 90's, which is fine. He's sleeping right now, and during deep sleep is when babies are likely to de-sat the most. Tonight will give a good picture of how he handles this.
I am excited with the progress he is making. The fact that he doesn't need extra O2 means his lungs are healing from the trauma of being made to breathe when he was born so early. His overall weight gain is good--- he is now 6 pounds 2 3/4 ounces! That means he has gained almost 13 ounces in the 3 weeks since he came home! We had a few bad days, but the good days are making up for the bad as far as his gain. BFing is Not yet going as well as I would like, but I am sure that will come as he gets even stronger. When I think back to how marginally he was feeding when we first brought him home---he's made a lot of progress over all with oral feeding, and he is in no danger of going back to a feeding tube! I have switched to using Avent bottles instead of the volu-feeders they sent us home with from the hospital, and that is progress in itself. We will keep trying at the breast, until we master it. But there is no point in forcing it to the point of creating an aversion for him, so I am taking things slowly with Breastfeeding. At least he is still getting my breastmilk!
I have been producing way more than he needs, and in talking to the LC we determined that basically Julian is getting too much fore-milk from me and not enough of the fattier hind-milk. I had to down-regulate my milk supply and now it is down much closer to what Julian takes, but it still doesn't float much cream when it sits in the refrigerator. It�s like my body thinks I have a 3 month old, instead of a preemie who is essentially a newborn right now. The milk I pumped back in February was almost 1/3 cream. So I am starting to thaw my earlier milk that we froze and give him that for his supplements (fortified with formula powder), while I freeze what I am pumping now. And we will see how that goes too.
Friday, April 28th. Julian is the exact same weight he was on Monday (same scale, the VN�s). His intake has been ok. He eats at least 8-9 times per 24 hrs. Most of this is supplements. He goes to breast 3-6 times on average. He is taking +/- 360 cc supplement plus about 50 +/- minutes of nursing every 24 hrs. It's hard to get him to eat more without throwing it back up. Smaller more frequent feeds help, but I'd like to see a better total volume. I thought that using our older milk that has more cream in it would also help him gain better. At least he is not quite as gassy as he was from getting too much fore-milk.
Now I am beginning to think that maybe this plateau is related to the fact that we took him off O2 three days ago. It�s not that he seems to be breathing any harder, but possibly his calorie need is slightly higher? I do remember the drs saying that he needed more calories because of his BPD (bronchopulmonary dysplasia). The BPD is why he has needed more O2 than normal. So it�s possible he needs a little time to adjust to being off O2, and I�m thinking this adjustment could be reflected in his weight.
Wednesday, May 3rd, we had appts for Julian at DHMC--the hospital 1.5 hrs away. He needed another eye exam to make sure his eyes were still developing properly, and he was to see the respiratory dr too. We had to take Jamie to a friend's house for the morning, and Truman took Eric to school at the same time. Then he came and got me and Julian. I should have got up just a little earlier, because I was rushed to get ready, feed Julian, and pump before we left. I had done as much as possible the night before, such as packed the diaper bag and sandwiches for lunch. But we were a few minutes late leaving the house. It was raining, and we ended up stuck behind SLOW drivers for quite a bit of time. I mean, they were ridiculously slow, even taking the rain into account---they would go about 15 mph in a 35 zone, 30 in a 55 zone, and finally the last straw was an old fogy who would only go about 2 mph through the hospital parking lot where we could not go around him! Talk about exasperating! I wanted to give them a push to get their cars moving!
So we got to the pediatrics floor about 5 minutes after our appt time, and they like you there about 10 mins early. :( But we barely got off the elevator, and this lady is sitting at a table with papers. It looked like one of those things where they are trying to sell you something, so we were going to walk right past. But she wouldn't let us, saying they were stopping everyone. I explained that we were late for our appointment, and did not have time to talk. She said, �well, you will, it concerns your health.� I'm like, "huh?"
She proceeds to tell us that the hospital has had an outbreak of whooping cough (pertussis). She said local people were coming in with it, and it sounded like she was suggesting we were sick with it, and wanted us to put masks on. Well, actually, we are not sick at all, and neither are our kids!--so we told her we were quite healthy. She gave us some papers to read about the dangers of pertussis---I scanned them briefly. I was aggravated that we were already late, and now they drop this bomb in our laps! It was too much at once, and I didn't quite know how to react. We told the lady that we were not local, we were from the Keene area, and we were healthy, we had not been exposed to anyone that was sick, and WE WERE REALLY LATE FOR OUR APPT!
So we went and checked in for our appt, and they were waiting for us. First Julian got his dilating drops in his eyes, and then we sat for 20 mins for those to do their job. We chatted with one of the staff and read over the papers we were given about pertussis. It said basically what I already knew---I HAVE recently read the papers they gave us on why our babies should get their vaccines, including the one for pertussis! The disease is most serious for small babies, and would be very serious for a baby like Julian who had respiratory problems. Which is exactly why he got his shots starting at 2 months old! This means the vaccine has had time to protect him by now---fortunately! It became clearer that the biggest risk was that we were coming into a place where they knew the disease had broken out. Further reading of the second page revealed that the immediate problem is that many of the DHMC staff have been infected with pertussis or exposed to co-workers who were infected. Those people were sent home, and given antibiotics (pertussis is a bacteria). But they thought more sick people from the local area were bringing more pertussis germs into the hospital.
Well, my biggest question was, if this disease is in the hospital, WHY were we not told sooner??? We just rushed around, made arrangements for Jaime, and made the long trip up here to find out this now? They have known about the problem since last Friday, and we were called more recently than that to confirm our appt. So they could have---and I think they should have---told us then and given us the option of rescheduling. I was not so worried about us, but worried about the risk to Julian!
But there we were, part way through our appts. The staff that we saw was all saying how they were healthy and had not been exposed so that was reassuring. After the eye exam, they took us right to another room to see the respiratory dr. She was very pleased with how Julian is doing. They agreed that his slight plateau after coming off O2 WAS directly related to stopping the O2. They see that happen so they don't like to rush babies to get off the O2. But he has gained 6 ounces in the last 5 days (he�s up to 6 pounds 9 ounces now), so it seems he's doing just fine now! The dr still wants us to monitor him with the pulse oximeter until she sees him in 3 weeks. He still de-sats occasionally, usually when he wakes up and stretches, and sometimes when he spits up. He usually pulls himself right back up again, so I wouldn't be turning up his O2 anyway if he were still on it. But the dr is cautious and wants to see him continue doing this well before we send back all his equipment. They also decided to adjust his meds again--he gets more pepcid since he is bigger, and we can stop the med (chlorothiazide) that helps keep excess fluid out of his lungs and see how he does without it.
Julian is almost 20 inches now so we need to move him into his new car seat soon. We have decided to put him straight into the convertible seat that my August 05 friends got for us. He fits in it so much better than the carrier seat I have. I don't really like lugging those carriers for long anyway, I'd rather carry the baby in my arms or the sling. But we have to do his car seat test first. The car seat has to be placed on a surface in the house so it is the same angle it will be in the car. The baby is strapped in as he would be for a car ride. Then with his oximeter on, we track for 90 minutes how he tolerates it. If he desat's too much too often, then we know he isn't tolerating it well enough. In that case, we would have to rent a bigger car-bed for him until he can tolerate sitting that long. But I will bet he passes. The visiting nurse can sign off after Julian passes the test.
Since there was the pertussis outbreak in the hospital, we quickly scrapped any idea of paying a visit to the NICU today, and we headed home.
May 5th. This afternoon I did Julian�s car-seat test. Before doing it, I called and asked the respiratory nurse to give me very definitive limits of how much he can de-sat and still pass his test. She wanted him to maintain at least 90-95 %. If he dropped into the 80�s, she wanted me to note why and how long he stayed there. If it�s just a few moments because he stretched or spit up, then it�s ok as long as he pulls out of it quickly and goes back up about 90%. But if he stayed in the high 80�s for 15 minutes or so, then that means he is de-saturating more than usual due to sitting in the car-seat---and that is what this test is all about. We could then try re-positioning so he isn�t slouching as much and see if that helps him raise his sat level to the 90�s.
So I strapped him into his car-seat, and monitored him for an hour and a half. He did really well. He de-saturated to 85% for a few seconds when he spit up once, but then he quickly went back to about 95% and maintained that for most of the 90 minute test! He did really well, and when the nurse came to weigh him, she signed off that he had passed the test!
May 7th. Today we made it to church, and we took Julian with us of course! Julian was so good. He actually woke up hungry at 8:30 am which was when I wanted to get up so we had time to feed him and get everyone ready and off to church! :) Last night was pretty good, although he decided to stay awake from 3:45 to 5:30 am.
So many people at church were SO glad to see us. Lots of hugs were exchanged, and people just ooohed and aaahhhed over Julian, and how healthy he looks! Well, he looks as great as he does....thanks in no small part to all the many prayers of these wonderful people who prayed for us and the baby for so many weeks! And they are still praying that he continues to grow and develop well. It is truly wonderful to be a part of such a loving church family! I really missed going to church the last 4 months!
I know so many people, including my online friends, have held us up in prayer---and Julian is truly a miracle! We are so very grateful!
May 8th. I was feeding Julian his bottle of supplement this afternoon, when he choked really badly. I think he spit up and tried to swallow what was in his mouth at the same time. He gagged and coughed and turned really blue. I have never seen him turn blue like that---it scared the crap out of me! I turned him over and thumped his back like they had taught us to in the CPR class we took. He spit up a little, but he kept gagging, and his breathing was in ragged gasps. I considered using his ambu (sp?) bag to give him a big burst of O2, but although we were shown once how to do it, I had a severe brain freeze and couldn't figure it out. By this time his color was returning and he was fussing, so I knew he had caught his breath. I decided to put his nasal cannula back on and give him some O2 for the next few hours, maybe even overnight, just to give him a boost. I also called the respiratory nurse and she said I'm doing the right thing. She thinks it'd be good to keep him on O2 at least 24 hrs, possibly even longer than that. She will call me tomorrow morning.
Julian is not thrilled with having his cannula back on his face, but it's what he needs right now. I'm sure he will be off it again pretty soon. Good thing we still had his equipment around! I�m still monitoring him as well, per drs orders.
May 11th. I called the respiratory nurse (her name is Laura) ---she had forgotten to call me Tuesday. But that was ok with me---I just followed my instincts and kept Julian on the O2. I figured it could only be good for him. But I wanted to touch base with the nurse before the weekend. Luckily, she was right there and able to talk to me.
I told her that I still had Julian on O2. After his choking incident Monday, I had him on about 150 � 175 cc�s to keep his saturation level in the mid-90%�s. The next day he still needed that, but by Wednesday I was able to turn him down to about 125 cc�s, and by Thursday he was on about 100 cc�s. This is the same baby who was on 5 cc�s when we took him off oxygen 2 � weeks earlier!
I�m not sure if his choking incident is what caused Julian to start needing this higher amount of O2 again or not. I am more inclined to think that it wasn�t the only factor. The dr did have us discontinue the medication that helps him clear excess fluid from his lungs, so that could be a factor in his needing more O2. We all have moisture in our lungs as a normal thing but babies with BPD like Julian have more fluid than normal. It is not infected (pneumonia) but it�s like breathing in a fog. I know from before that when his chest x-ray showed a lot of moisture in his lungs, they said that was one reason he needed so much O2 at the time. They started him on the med to help him clear the excess fluid, and he did come down on his O2 need. I asked the nurse about this, and she wanted to talk to the dr. For now, I am not to start giving the med again.
The choking may have caused him to aspirate a little milk too, which would not help his lungs any. The visiting nurse can listen to his lungs tomorrow and see how they sound.
Laura agreed with me that obviously Julian needed to be on O2 right now, and it could only be good for him. He had been doing OK after we took him off O2, but it was just OK. He just wasn�t doing �fabulously�; although he did not appear to work harder at breathing, his weight gain had been border-line, and that is an indication that his breathing was taking a lot of his calories. He�s so little, that we don�t really want him doing the minimum weight gain all the time. He doesn�t need any stress, and he can well afford to have things made easier for him. If O2 will help him, then he should have it. Making the decision to have him on O2 for a while longer was actually a relief for me. I was worried about his weight gain. Sure it�s an inconvenience for us to have him hooked up, but so what! We�ll survive! I think it�s more important that he is gaining well and his lungs are getting the boost they need.
One thing Laura clarified for me is that they really want to see his saturation levels ABOVE 95%. I had thought she said they wanted him to be in the low to mid 90%�s. Well, yes, that is what they wanted when we brought him home AND before his eyes were mature, because too much O2 therapy can cause a preemie�s eyes to develop abnormally (ROP). But now that his eyes are mature AND they don�t have ROP anymore (his Stage 1 resolved on it�s own a few weeks back), they want to see his sat levels stay above 95%. He had been maintaining 97 % or better when we took him off O2 completely at the end of April. But without the O2, he was averaging 93-95%, which the respiratory dr was not entirely happy with---she considered it marginal. Now that I understood this, I was more than happy to see Julian back on O2 again now---I want him to do as best as possible, not just marginally! It seems that the choking episode turned out to be a good thing---it prompted us to put Julian back on O2 which is what he needed.
Laura said she would write some notes about our conversation and email it to both the respiratory dr (Dr Rhodes) and our pediatrician (Dr Silverstein). Then they would know about the choking and that Julian is back on O2.
May 12th. The visiting nurse (Cindy) came today and weighed Julian. He had gained 160 grams (over 5 ounces) since Monday! Wow! I think that just goes to show that the O2 was what he needed! It�s amazing---you wouldn�t think that oxygen would have such an influence on weight---but it does! I told her about Julian�s choking episode and why we put him back on O2. She was surprised that I hadn�t been told to take him to the dr for a check up, but she was glad to hear that I was staying in contact with the nurse who was informing the drs. Julian�s next scheduled appt is May 18th. The nurse listened to his lungs and said they sounded great.
When she was done with Julian, some people came from the Early Interventions program to do Julian�s initial assessment. My older kids have both been in EI, but they were older when they started in the program. I wasn�t sure what to expect with a newborn, but I figured that they would say that, even though he is about 4 months old, he was NOT doing what four month olds normally do. However, he is probably not far off from his corrected age of about 1 month.
But as our pediatrician says, we should go by his real age to get him the services he needs so he can catch up to other kids the same age as he is. As I expected, Julian is eligible for EI because he is �delayed� according to his real age. They made a plan of things we can work on to start off with. One thing in particular is that he has a very pronounced tendency to keep his head turned to his right. The term they use is torticolis. His is positional rather than genetic. He needs some stretching exercises to help him loosen those muscles so he can turn his head all the way to his left. We also decided to change the position of his bouncer (which he spends most of his time in, including sleep, to reduce his spitting up) to help him start wanting to turn to his left to look at me when I am sitting next to him.
Of course, long term concerns are whether he will have delays, particularly in speech, due to lack of oxygen at birth when my placenta abrupted. But only time will tell.
Laura, the respiratory nurse, did call me this afternoon. She was very pleased with Julian�s weight gain in the last 4 days, since he went back on O2! She said that the respiratory dr was happy that Julian was back on O2---she had misgivings about him coming off is as quickly as we did, and she felt he would do better to stay on it a while longer. I think now we are talking at least several more weeks, maybe longer---but they like to say �let Julian tell us when he is ready�. :) The nurse mentioned at one point that maybe when he is ready he can come off for daytime, and just be on O2 at night, so that it is even more gradual than we did it before. Of course, this will all be discussed at our next appt with Dr Rhodes on May 24th.
I have a BFing conference to go to on May 22nd. I really need to go, since the educational credits I will earn will go towards renewing my CLC certification when it expires in about 1 year. I can take Julian because he is a BF baby, and I was planning to take him. However, if he is still on O2, it will be tricky to monitor him, since the monitor�s battery pack does not last very long. I don�t know if I will be allowed to plug it into a wall outlet at the conference room. The conference is being held at DHMC hospital, so I asked Laura about it. She said she wasn�t sure but we could talk about this more later before I go to the conference. I really want to take Julian with me, but if I can�t, I suppose he could stay home with Truman, who decided to take that night off anyway, so he will be home when the kids get home from school (I will be much later than that.) I guess we will see when the time comes what the best arrangement will be.
Mother�s Day. Well, what can I say---it's all part of motherhood! Mr. Julian was one C-R-A-B-B-Y baby this morning! He was not happy, and nothing would make him happy either! Nursed him, bottle-fed him, changed him, rocked him, burped him, turned his music on, tried the vibrating bouncy seat, tried the regular one (which he sleeps in), tried swaddling him, tried unwrapping him, turned the fish aquarium on with the ocean sounds, fed him, changed him, burped him, rocked him, etc all over again, let him look at himself in the mirror. NOTHING worked for more than about 5 minutes. He screamed, he cried, he fussed.
And Truman kept bugging me for breakfast, and for sex! Can you believe that?!?! Well, I told him he could make the coffee like he usually does---so he did. We finally had breakfast around noon, after I finally got Julian back to sleep---he cried again while I was dishing up the food but it didn't last long. Breakfast was a strawberry Danish ring I bought at Price Chopper yesterday and home-made applesauce I thawed from the freezer last night. Yummy!
I am feeding Julian again (typing one handed), and Truman keeps asking when I will give him sex! I tried saying never, but he won't take no for an answer. Grrrrrrr! And it's only quarter of 2 in the afternoon---this is going to be a long and tiring mother's day! I thought that since I am a mother, it was my day to be pampered, but apparently no one in my house thinks so!
I asked Truman to take over one feeding with Julian so I could have a break. Nothing doing---he told me I need to BF more! Hello! Drs orders are for Julian to get Breastmilk mixed with Neosure powder for more calories---so he gets about 3/4 of his food from a bottle---and Truman can give that if he wanted too! I did make him hold fussy Julian while I pumped---I simply cannot pump and hold a baby--the pump flanges fall off my breasts and the milk drips everywhere! I asked Truman to make lunch---grilled cheese sandwiches---nope he won't do that either, said he'd have to buy something. I refused to give him money---all I have is Eric's school lunch money. So I made the grilled cheese.
Father's day will be PAYBACK! :)
Julian rolled himself over! One morning this week I put Julian on his tummy for some tummy time. He was NOT at all happy about it, and fussed and whined and cried. Next thing I know, he arched his back and leaned his head way over to one side so his body just rolled over from the weight of his head! I put him back on his tummy and he just did it again! So that was the end of tummy time for that day! LOL too funny!
On occasion, Julian will pee when we take his diaper off to change him. A few times he has managed to sprinkle his own face! It obviously took him by surprise---the look on his face is priceless!
He�s also discovered hair-pulling! Ouch! I think it shows that he�s starting to do normal newborn baby stuff! Of course my hair has finally started falling out! You know how it sheds less during pregnancy---well after 2 pgs back-to-back, my hair was pretty thick. With only 3 months in between Lucas�s pg and Julian�s pg, I never shed any extra hair, so now---with Julian pulling on it to help---I guess I will lose double the amount! LOL
I think Julian's profile looks like Tweety! Really! When I hold him on my shoulder to burp him, and he's looking around eyes wide open---his profile is just like Tweety! LOL My kids agree with me on this. It'll be something to tease Julian about when he's a teenager---LOL!
When we go to get groceries, people say, "what a tiny baby, how many DAYS old is he?" Off-handedly I reply, "He�s about 4 MONTHS old." You should see the looks of astonishment and puzzlement on the people's faces until they realize he had to be a preemie! LOL! He�s in the 25th percentile for both weight and length. For his gestational age. He would be nowhere near the chart for his actual age. He was born at the 58th % for weight and 75th % for length (gestational age), so he's fallen a bit behind on his growth. That actually happened in NICU, and he's not been able to catch up again yet. I hope he will though.
Julian has been major fussy the last few days. It's like nothing is right for him, and this will last for hrs! Sometimes I have to just put him down and go to another room to collect myself together. I think maybe Julian is just overstimulated---not sure from what, but it's like he is over tired but can't seem to settle to sleep. It's so hard when he does this for half the night, and I have to function in the morning! And then again for half the day is rough too! When he finally did fall asleep and sleep for 3 solid hrs---it was BLISS for ME! LOL But then he did the hrs of fussing thing again the next day and the next and the next! Must be a stage, but I don't remember if my older kids did this or not---it's too long ago to remember.
Julian sometimes will calm when I hold him, and other times continues to fuss and fuss. I don't mind holding him, but with him on O2 and a monitor we are tethered to a 4 ft radius of his co-sleeper. That makes it hard to do any thing besides sit here at my computer or lay in my own bed! I can't carry him to the kitchen or even to the bathroom, because I can't lug all his equipment too! I put his O2 tank and stuff in the stroller when we go out, but my hallway is just too narrow to try that in the house!
This too shall pass!
May 18th. Julian�s 4 month check-up. He weighs 7 pounds 4 � ounces. I am not sure of his length. He got his 4 month shots today. He cried a little, but was easy to soothe by feeding him.
Sunday night, May 21st, I tried to go to bed early at 9 pm, since I had to get up at 5 am Monday morning. Well, Julian got up to eat at 9:45 pm, and I hadn't gotten to sleep yet. Nursed him first, but he didn't settle, so I got him a bottle of fortified breastmilk. He finally went down by 11 pm. I went back to bed, but didn't fall asleep until midnight---not surprising since I usually am up past midnight and sleep later in the morning, so my body clock is used to that. Julian woke to eat at 2:45, and we both were back asleep about 15 minutes later. Suddenly at 4 am Julian woke screaming and arching his back---his reflux was bothering him. I picked him up and tried rubbing his back to relax him, but he fussed and screamed and spit up for about 10 minutes. Then he finally settled back to sleep, but I couldn't. I saw the clock turn 5 am, but it didn't ring--I guess Truman didn't turn on the alarm after he set it! Good thing I was awake. I was hungry and got up and fixed coffee and toast and ate a banana. Julian woke at 5:30, so I fed him and got both of us dressed.
We were heading off to the NH Breastfeeding Task Force Conference---they have one every yr, and WIC pays for us to attend so we can keep up with our BFing education. One of my coworkers picked us up at 6:15, so we could make the 1.5 hr drive to the conference. She was bringing her BF baby too---her baby is about 4 months older than Julian, and was also a preemie (28 1/2 weeker). My boss was picking up another peer counselor and we would all meet at the conference.
I had packed the day before for this trip---traveling heavier than usual! I had to take Julian's O2 tank and monitor, in addition to his diaper bag with diapers....and extra clothes, burp cloths, and blankets because he is such a spitty baby! Plus I took fortified breastmilk on ice, and a thermos of hot water to use to warm up his bottles. I did take the nipple shield as well, so we could do whatever BFing he was up to. I took his stroller to use to carry all this stuff! LOL
We made good time, and we got good seats---near the room they had set up for pumping moms. This way if our babies got fussy, we could make a quick exit so they didn't disturb the speaker or the listeners. The auditorium was full---I bet at least 100 people were there. So they used a microphone and loud-speakers for everyone to hear. There were two or three times Julian got over-stimulated just from everything going on around him (he's still very sensitive to noise and general activity), and when he screamed, taking him to this room helped him quiet again. There were 6 babies at this conference, most or all under 6 months---and they were all very good!
As soon as we arrived I saw the two ladies who I consider my mentors. Paula is the one who taught the initial 18-hr training course I had to take to become a Peer Counselor. I have the personal experience from BFing my own children, then she taught us how to be effective at "counseling" and giving telephone support to other BFing moms. Paula and I really connected at the time. I also get to see Paula every year since then, because she is involved in the NH BFing Task Force who puts on these yearly conferences. We always catch up at these conferences, and I really look forward to it. Maureen is my other mentor. She is also the program coordinator at the state level for the NH WIC Peer Counseling Program. We have meetings with her several times a year, and she and I have gotten to know each other well. Maureen is also involved with the NH BFing Task Force. Both women really appreciate my work for WIC.....oh, but I'm getting ahead of myself! Both women also know my history of losses, and I knew they would be THRILLED to see Julian this time! I was right. They were beyond thrilled! :)
The Conference this time was about "Breastfeeding after Breast Surgery" and the speaker was Diana West. She's really good, she's a fun speaker and really knows her subject (she has personal experience with BFAR--the R stands for "reduction"). The key point is that success in BFing after surgery (both reduction and augmentation) depends on how the surgery was done (ie, what nerves and milk ducts were cut) and how much time has passed since the surgery (the more yrs that pass, they more re-growth of nerves and ducts there can be, best case scenario). And the most important thing to remember is that many women who have breast surgery may not have a full milk supply BUT they CAN still BF as much as they do have milk! It's not all or nothing. They can still have a rewarding BFing experience even if they have to give supplements too. That's it in a nutshell---LOL.
Half-way through the conference, they gave out awards. The awards are given by the NH Breastfeeding Task Force for "promotion, protection, and support of BFing in your community".
Several other people received awards, including one of Julian's drs! The respiratory neonatologist who is following up with him! She has worked at DHMC for 25 yrs, and has been very instrumental in finally changing NICU protocols to promote BFing for NICU babies! They also got a new LC for the NICU about 4 yrs ago, and she's great---I loved working with her when Julian was in NICU and I stay in touch with her by email now. (I saw her at the conference too! and she thinks I'm doing great with feeding Julian!) I could see the difference in NICU staff attitudes about BFing, just in the last 5 yrs. When Jamie was born, they were like, "you're BFing? Oh, ok, that's good, breast milk is great, but we still have to give him bottles of formula you know, he has jaundice." When Julian was there, they said, "um, your baby is a preemie and really sick, so we'd like to encourage you to try pumping breastmilk for him, it's really the best thing for him, especially your colostrum." They were of course delighted that I certainly BF my kids!---they didn't have to try to convince me! lol Julian never got formula until he needed a boost in his caloric intake without extra volume of food that he could not tolerate---so he got Human Milk Fortifier added to my breastmilk to densify it's calories, protein, and fat. We learned at last year's conference that this is a quite common practice because preemie babies' needs are different from normal healthy full-term infants. HMF is not approved for home use, so per drs orders now he gets Neosure powder added to my Breastmilk for extra calories, protein, and fat---he never gets straight formula! And he still doesn't tolerate more than 2 ounces at a feed without throwing up. But I digress.
More awards were given out, then Paula who was presenting them said, "The next one is for someone from Southwestern" (that's my local WIC agency where I work), and I thought oh, cool, I wonder who, maybe one of the nutritionists, they work awfully hard. Then Paula went on with the nomination and it dawned on me that she was describing *my* job---"a peer counselor with WIC for nearly 5 yrs, she certainly works hard to support and protect BFing"! When she said, "this person also does a wonderful job managing the pump loan program"----that had to be me, that IS my job!! Then she said, "So this award goes to Abby Howard! Would you please come up to the front?" I was so shocked! I couldn't believe it! I had no idea that I was getting this award (the nominations are made before hand and the awards are printed and framed for the conference day.) Paula and Maureen both hugged me and told me I deserved the award! I had tears in my eyes! My supervisor Billye-Jo was clapping the loudest of everyone, so I asked her if she nominated me---she admitted it, and insisted I deserved it! All three, Paula, Maureen, and Billye-Jo were so pleased with themselves for surprising me like that---I think is was a conspiracy---they were rubbing their hands with glee when I admitted I had no clue until I realized it was my job they were describing! LOL
Oh the excitement!
Lunch was great--they always get great food---salads, sandwich wraps, soup, and desserts! There were also door prizes---everyone who attends has their name put in a basket, and then they draw for the prizes that sponsors donate. I won a $25 gift certificate for Motherwear! I have looked through the catalog provided, and I want to get a nursing dress! :)
Another member of the NH BFing Task Force is Kathleen Kendall-Tackett. She is an author who has researched and written extensively about mothers and post-partum depression (she was also a conference speaker one yr). Her newest book came out recently, and all conference attendees were given a copy! Too cool!! Paula introduced me to Kathy last year, and I told her I had her first book---and loved it! We chatted quite a bit last year. This yr, Kathy offered to help me by holding Julian when he was fussy and I needed to prepare his fortified milk. Then for a little bit she took him into the side room where it was quieter, so I didn't miss the speaker's presentation. I got her to sign my copy of her book, and she wrote a sweet message, thanking me for sharing Julian with her. Awwwwww!
What a day! what a day! So many nice friends to see, so many cool things to happen!
Well, we got home a little after 6 pm. Truman had taken the night off so he could be here to take care of Eric and Jamie when they got home from school. He had cooked a steak on the grill for our supper, and heated up canned vegetables. After supper, he was planning to take Julian to his work place so his boss could see the baby. We got there, and everyone was in a meeting, so Truman was asked to return at 8:45 pm break. That's kind of late, but we needed bread so we went to the store, and we also got a new musical toy for Julian using a gift card. We went back to Truman's work, but the meeting did not break up until 9 pm. Usually Eric and Jamie go to bed by 9 pm, and I was exhausted from getting up so early after such a short night! But Truman�s team leader and the shift leader came out to ooohhh and aahhhh over Julian for a few minutes---and we finally got to go home.
Now Julian slept most of this time in the car, so when we got home, Truman put the older boys to bed while I fed Julian. But Julian did not want to settle. He likes his new music toy---a FP Flutterbye Dreams Birdie Soother, but he wanted me to hold him. I tried to get Truman to hold him, but after a minute he insisted that Julian wanted me! I still had to pump my milk and get ready for bed! Truman asked if I wanted a snack, and I said I wanted ice cream, but he wouldn't get it---he said I should get it. :P He lay down and was soon fast asleep, while I was trying to settle Julian. By the time I had finished pumping, I was SO tired, I didn't want ice cream anymore! I just fell into bed, but Julian woke and wanted to eat again! I got him a bottle of fortified milk, and as soon as he finished that we crashed into bed---then he slept 4.5 hrs before eating again!
Julian woke again at 7:30 Tuesday morning, so that's not bad, but I went back to bed as soon as he ate. Thankfully, he did not decide to stay awake for 2 hrs like he does many early mornings! I next woke at 11 am! Good thing I had decided to cancel my 10:30 dentist appt! I needed a morning to sleep late after such a long day at the conference! Plus I have to get up early tomorrow (Wednesday) to take Julian to see the respiratory dr again!
May 24th. We took Julian to see the respiratory neonatologist today. She is very pleased with how he is doing! He weighs 3.445 kg which is 7 lbs 9.5 ounces. He has gained over 2 pounds in the 7 weeks since he came home! He is 20 1/2 inches long. And his head circumference is 37 cm! His weight is still hovering about 25 % for his "corrected age" of 5 wks. His length is starting to creep up to between 30 and 40 % and his head circumference is now between 40 and 50 %!!! (both measurements for corrected age) They were VERY pleased with his head growth! Go Julian!
The dr says that we should continue with just what we are doing. She is happy with the way I am feeding him. He does some nursing at breast, but still gets a good amount of fortified breastmilk. It's what he needs, so it's what we have to give him for now. I do want to get him nursing 100% at the breast, but that will come later, I am sure of it! The dr is sure of it too (remember she won an award for supporting BFing too! so she really wants to see him BF well as much as I do!) At least he is getting mostly breastmilk, even if it's fortified!
Julian is still getting O2, and will continue with it probably for another month, give or take. We'll see how he does, and let him show us when he is ready to go off it. It helps him breathe easier which in turn helps him grow and gain weight better. The dr said that preemies who have BPD like he does often need to weigh 4 kilos before they are ready to go off O2 therapy. That is about 8.8 pounds, so he needs to gain at least another pound or more, then we'll see!
I want to get portraits done, but without his cannula on his face. So meanwhile I can practice being patient until he's ready to get rid of his cannula! :) I did take a few more snapshots with the digital today.
May 27th. I'm down to pumping 2-3 times a day, and I get 4-6 ounces each time, sometimes more, so I get about the total amount that Julian takes in supplements. When I pump, I pump for a half hr to remove all the milk. I've been maintaining that for over a month now. I know that not everyone can maintain a supply on 2-3 pumping, but evidently I have the storage capacity.
Julian also BF some (usually about 4 times), but he isn't very efficient at getting the milk out---it's hard to say how much he takes at breast, but I would guess maybe 3-5 ounces total per day. A lot of times, he goes to sleep and hangs out sleep-nursing, then he wakes an hr later wanting his supplement!
Other feedings he just takes fortified breastmilk from the bottle, so he gets 8-10 feedings per 24 hrs. He seems to like if I alternate feedings---one feeding at breast and supps, then the next feed just supps, and so on. He has a lot of trouble latching on at night, so I do several feedings of supplements in a row at night. He will often BF well mid-morning, I think because my supply is highest then. I thought about upping my supply again, but then he will just get a lot of foremilk, which was making him gassy and unhappy, and part of the reason I down-regulated in the first place.
May 30th. I am thrilled---Julian gained about 7 ounces in the last 6 days!!! He has reached EIGHT POUNDS! Woohoo!!
He's also starting to take in more than 2 ounces at a time. This morning he took 3 ounces in one feeding--and he did NOT throw up or spit up after! He did poop--a mega poop that required a bath afterwards! But I kind of expected that, he hadn't pooped in several days, so I knew it would be big when it finally came. :) And he was weighed an hour after his big poop, so his gain wasn't including the poop.
My little man is finally getting bigger! (He�s passed his momma's birth-weight now--LOL)
Another great milestone---Julian is beginning to give us real smiles that aren�t followed by a spit-up. :-D These new smiles even reach his eyes. It just makes our hearts melt!
I look at him now, and I can hardly believe that hours after his birth the medical staff was questioning whether he would survive or not! He is truly a miracle and we are SO blessed!
My parents were both here for 3 days. Dad helped us some on the addition, and mom helped with Julian so I could do some work with dad. They are the best! I think Julian is going to learn to love his grandparents every bit as much as his older brothers do.
