SHE SAID JULIAN COULD BE COMING HOME IN 3 to 4 WEEKS! AAAAAAHHHH! I feel like screaming in glee like a school girl! LOL
She discussed with me what criteria needs to be met before he comes home.
1) He has to be off high-flow oxygen, BUT he could still be on low-flow O2. We had been told he had to be off O2 completely, and so far attempts to reduce his O2 needs have not worked---he keeps going back up on his O2 requirement. I began to feel that his O2 need is going to be the thing that keeps him in NICU longer. Our local hospital does not have enough staff to give the one-on-one care needed for a baby on O2 (that is any O2, high flow or low flow), so transferring him close to home was not looking hopeful either. BUT I was so excited to hear that Julian could be allowed HOME with low-flow O2! They would just teach us how to care for him with the O2 and the necessary monitors! WOOOHOOO!
2) He does need to be apnea-free for 7 days straight before coming home. He is doing so much better with this, they think he will get to that point in 3-4 weeks!
3) We will have to have a satisfactorily-working feeding plan in place. I am not keen on bottles, but if it meant he could come home sooner than later, I will consider using them to supplement him with pumped breastmilk. With my older boys, we brought them home with a plan for both breast and bottles. We nursed a little until the baby got tired (preemie babies often aren't as strong nursers as full-term babies), then we supplemented with pumped milk in a special preemie bottle. Gradually we nursed longer and supplemented less. I kept a daily log of feedings and diapers, so we felt confident baby was getting enough. Plus we did weekly weight checks for a few weeks. By 6 wks, we had the baby completely off the bottle and exclusively nursing---which was my ultimate goal. I BF both boys well past 1 yr old. I am sure I can do this again if necessary. Or maybe I could use a SNS instead of bottles---note to self: bring that up when we discuss feeding plan!
SOOOOOOO, I am feeling a lot happier right now than I was a few days ago! I was beginning to feel like this NICU thing had no end in sight! When we asked the hospital staff, we would get very varied responses---some thought a "few weeks", while others said "months". But this lady who coordinates discharge has a pretty good handle on things---she looks at how the baby is progressing, and what still needs to be accomplished, then she considers options to present to the parents. I am so excited that he could still come home even if he needs a little oxygen. In 3-4 weeks sounds fabulous to me! Now *I* need to remember that the date is potential---NOT set in stone!
We went to see Julian Saturday, March 4th. The kids are all better from their colds, so they could go in and see their baby brother. We still arranged for the baby-sitter to come watch the kids in the lounge after they got bored.
I gave Julian a bath, Truman videoed it, and the kids watched. We all had a great time. The nurse even took off Julian's air tube for a few seconds so we could get a pic of him without it! We had to replace his tapes anyway, since they were yucky with spit up. After his bath, I dressed Julian, then held him for a while while I tube-fed him. We decided not to give him a breast visit this feed so as not to over-stimulate him with everything.
Oh, yes, I almost forgot to mention---Julian has now graduated from the isolette to an open crib! That means he is regulating his temperature pretty well now. We do keep him dressed in a onesie and a sleeper, then blankets over him. But this is a great milestone, and another step closer to coming home!
Then Truman's sister and BIL and one of their daughters came to visit. I had to go and pump my milk, but there is a limit on how many people can be at the baby's bedside, so it worked out perfect for Truman to take them in to see Julian while I pumped. They had also brought new toys for Eric and Jamie, who were absolutely thrilled! Not like they need new toys, but it was very nice of them to think of the kids.
After we had a bite to eat, it was time to go back in and feed Julian again. Another baby had gone home, so the spot by the window was available, and they moved Julian there. I gave Julian a breast-visit though he didn't suck much. He is still small to do much of anything at the breast, but at least he gets to nuzzle it. He was pretty hungry though, and he was cueing away (smacking his lips, etc) until his milk was warm and we tube fed him.
Today was more relaxed than the last few weeks have been, and I feel so good tonight. I am so glad the boys could see their baby brother, and we got some nice pics. Also I just love holding my little guy!
When they weighed Julian late Saturday night, he weighed 4 pounds and 1/2 ounce!! Go Julian!
Sunday we went back to the hospital. When we got there, he was swinging in a little baby swing! I was surprised! He seemed sort of ok with it, at least he wasn't fussing or anything. But he appeared pale---more pale than I can remember ever seeing him. The nurse and I discussed it, and she said perhaps his blood count needed to be checked. As part of his normal routine, I checked his temperature, and it was too low. The nurse was concerned that maybe he wasn't ready to be out of his isolette---even though he did great yesterday.
I decided that the best thing for Julian was to do some skin-to-skin. My body heat would help him warm up. I held him on my bare chest, with a warm blanket over him, and we tube fed him. After nearly 2 hrs, we checked his temp, and he was much warmer. His color looked better too. I needed to go pump, and we wanted something to eat, so I dressed Julian in a onesie, a warmer sleeper and a hat, then wrapped him in blankets again, and put a small quilt on top.
When we returned for the next feed, we could hear him crying when we entered the unit. I went over and talked to him---and he stopped crying immediately. He stayed awake for a while, and we took some video of him with his eyes open, looking around. I took his temp and he was nice and warm.
When the nurse came in, I told her he was warm and toasty. His color also looked great. She figures that he must have gotten cold in while in the swing, and that could be why he was so pale. We decided that the swing was too close to a vent, so it should be moved to a better location before he goes in it again.
Truman held Julian this time for his feed. We did not do a breast visit. Julian seemed to be gassy, and it took him a long time to take his whole feed. But at least he didn't spit up while we were there anyway. As soon as his feed was finished we left. The baby sitter had had to leave already, and our other boys were getting restless, hungry, and thirsty. In fact, at one point, Jamie put his hand on my breast (I was fully clothed) and announces, "Milk! I feel milk!" LOL
All in all, it's been a great weekend. But we are all TIRED! All this traveling, etc, is wearing us out!
Monday. Well, I finally got my co-sleeper up! Woohoo! Another step closer to being ready for Julian to come home! I also washed some more baby laundry, including the sheets for the co-sleeper, but they are still in the dryer. I put my breastpump case in the co-sleeper to deter the cats from jumping in. I think I will need to get some foil as a further deterrent though, our kittens are just too curious. Besides, my female Rosie is pregnant again! So we have more kittens coming! Yikes! I don't know when she will have them, but from how fat she is, I am guessing 2-3 more weeks! So about when Julian comes home, more or less! Yee--ikes! Truman was telling me I should have gotten her fixed as soon as she weaned her last litter. Well, I had just had Julian shortly before she weaned the kittens, so do you really think I had time then to make the arrangements to get her fixed?? There is paperwork involved because we are income-eligible to have a reduced rate for fixing our cats. I only got to asking for the application last week! But at least I should have everything in place so when Rosie's kittens are old enough, I can get Rosie fixed.
I discovered that I will need to get the leg extensions for my co-sleeper. The co-sleeper was fine without extensions for next to our old bed. But Truman�s sister just gave us a much newer mattress. She upgraded to a queen size and offered to give us this full size that is only about 3 yrs old. Our mattress is almost 10 yrs old---we got it when we first married, and they told us it should be replaced in about 10 yrs. We've both had some issues with our backs this past yr, so we were thinking it was about time to get a new bed. BUT we don't have the $ yet for it, so we were going to try to get a couple more yrs out of this one. When Truman�s sister offered us this mattress, we gladly accepted! It is a very nice mattress. But it is also several inches thicker than my old one, so now I need to buy the leg extensions for the co-sleeper! I thought of putting blocks of wood under the legs, but I am not sure that is completely safe, so I guess I will buy the leg extensions! :)
All in all, it's been a productive day. This morning after our chiropractor appointments, we checked out the new Target store that just opened in Keene last week! We bought another Duplo set for the boys to add to their collection of Duplos (they LOVE those things and they build all kinds of fantastic things with them); this set has Cranky from the Thomas series of Duplos! The boys can have it for Easter. They have been asking for Cranky the Crane. I found a cute little snuggly toy for Julian---it's a small soft blanket with a teddy head sewn together. I also bought a trashcan for his room! Wow! LOL I looked at the Avent nipples---if we do any supplementing, the LC suggests Avent. I did not buy any yet, but at least I know what they carry for nipples. I have a couple Avent bottles, but I don't know what size nipples are with them.
I also cleaned up the kitchen and LR, swept, threw out newspapers, straightened up a bit. Of course since we changed the mattress on our bed, I also washed the sheets--and the towels while I was at it! My sheets are so old, they have holes in them, and my foot went right through a hole last night! LOL I put better sheets on today, but I should have asked my SIL if new sheets came with the mattress! He-he-he! I will recycle the old sheets into rags, so their useful life isn't over yet. ;) I helped Eric with his homework after supper. We also put together the race-track and train-track that Truman�s sister and BIL gave the kids the other day. The kids actually got their Thomas table completely cleaned off last night, so they could set up their new toys on the table! That Thomas table was one of my best flea-market bargains a while back! Now we just need the new playroom in the addition done so I can get the toys out of my LR!
I am pumping a little less frequently because my milk supply has continued to increase! I often get more than 24 ounces a day! I really don't need to keep making that much right now, so I cut out a pumping. So far, I just get more at each pumping, but maybe it will take a little for my breasts to realize they can cut back a tad. I am also being watchful that I don't get a plugged duct from cutting back. My freezer is so full, I don't know where I am going to keep putting milk. We will just have to start eating the frozen foods faster or something! LOL One thing is for sure, I am not buying anything that has to be frozen for a long time yet!
March 7th. I normally make every effort to stay positive. That's how I have survived so far. But it ain't working anymore. I am so worried that Julian might not come home in the projected 3+ weeks. The reason is that they told us last night they had to turn his O2 back UP! Ok, not that it's serious or anything---they said it's normal for preemies to do this and they are not worried. They kept turning his O2 down a little, but I guess he wasn't tolerating it as well, so they decided to turn it up again.
But the way I see it is we are going in the wrong direction here. So he needs the additional O2 right now, but baby, you are supposed to be getting ready to come home soon! And to come home, you have to be on low-flow O2 at most, NOT needing a higher rate of high-flow O2! This is really bothering me.
Of course it doesn't help that I have had a bad headache since I got up this morning. Not sure if worry caused the headache or if having the headache just put me in a worse state of worry! Anyhow, I feel like crap! I only got 5 hrs of sleep last night---I woke up to pump around 5:30 and the boys decided to wake up at 6 am and asked for food, a movie, etc, so I never did go back to sleep. I tried to take a nap, but my headache kept me from sleeping. ugh! I can usually sleep anytime and most anywhere (as long as the shades are drawn). Well, I�m going to bed early tonight! I know this means getting up twice to pump instead of once, but you do what you gotta do.
I hope tomorrow is better---we are going to see Julian.
March 8th. Today we put Julian to breast, and HE SUCKLED FOR ABOUT 5 MINUTES! I was SO amazed and thrilled with how well he did! We were going to try with a nipple shield, but while the nurse was gone to get one, Julian latched on. His mouth is still so little and my nipples are big, so it's hard for him to get the areola in his mouth, but he did better than I was expecting today!
Before when we put him to breast, he would maybe suck once or twice, then use his tongue to push my nipple out of his mouth. He would nibble and play a bit as I put it back in his mouth, but he really didn't suck much at all. I knew it might take him a bit to get his suck reflex mature enough to do more than that, so I wasn't worried. He is only 34 weeks gestational age now anyway, and suck reflex may not develop until 36 wks in some babies (like our son Eric!).
Since Julian is showing he is ready to try more suckling at breast, now we need to find a way for us (or at least me, because I am the one with the boobs) to be with Julian more often so we can work at breastfeeding. He could have some bottles, but it is really important that we practice feeding at the breast. The nurse said it would be best if we could plan on being there at the hospital for at least one feeding every day for the next week or two.
Then as Julian gets better at the breast, it would be important for me to be there at the hospital for as many feeds as possible. They do understand that we have other children, and Truman has to work as well---so it isn't like we can all go there and stay for a month while Julian practices breastfeeding. But if I can be there for at least half of his daily feedings it would be vital to establishing breastfeeding. By the time we reach this point---likely in a couple weeks---Julian will hopefully be getting to a point where he needs less O2.....but this is SO hard to predict!
The dr explained that as Julian feeds better and gains more weight, his lungs will improve. But when a baby is born as early as Julian was, their lung tissue is very immature and fragile. When they have to have a ventilator, as he did, it can actually damage the fragile lung tissue. The good thing is that lung tissue will continue to grow and heal for the first 7 years of a person's life, so he will not have any permanent damage to his lungs. However, he may need O2 for a while yet, because his lung tissue is not yet able to absorb all the oxygen his body needs from room air.
For the last couple of weeks Julian has stayed *more or less* the same in his total requirement for O2. They tried turning it down a bit, but he was working too hard at breathing, which is why they turned it back up again this Monday. It is a delicate balance---you don't want to give the baby too much O2, only just as much as they really need. But if the baby is expending too much energy trying to breathe, that is counter-productive too. So they fiddle with the flow (pressure) of O2 versus the % of O2 in the air in his cannula. When they turned the flow down (remember we are trying to get him down to "low-flow" so he can come home), he was needing a higher and higher percentage of O2 and he also had to breathe faster and harder. We don't want to over-tax him, so they turned the flow back up, and that means the percentage of O2 he needs goes down; he also breathes a bit easier and slower. But he can't come home as long as he is still needing "high-flow" O2. The good thing is that he is not needing more than he needed when he started on the high-flow nasal cannula---so he really isn't going backwards; he just isn't going forwards much as we were hoping.
But as I mentioned, as Julian grows and gains more weight, it will help his lungs heal better and faster. He is doing well with his feeds and gaining weight in spite of his spitting up (he barfed on me while kangarooing today and again on his clean outfit after I dressed him before we headed home!) But Julian has recently shown us that he is ready to suck now, and so we need to work on BFing now. Our goal is to have him exclusively BFing before long.
And to get Julian BFing, *I* need to be there at the hospital with him as often as possible. One the way home we had a big argument about how we would make things work for the next several weeks. I wanted to go with the nurse�s suggestion that we go every day for one feeding for the next week to 10 days or so; then if Julian is ready to take more feeds at breast, I could go up in the morning and come back at night. When I need to be at the hospital all day, it would mean that Truman would not come with me, because he needs to work as well as take care of Jamie before he goes to preschool. We would also have to find someone---perhaps my mom---to watch the boys after school until I got home. But for some crazy reason, Truman does NOT want me to be at the hospital unless he is there too!
I understand that he may want to be able to watch us BF. BUT he does need to be realistic here. The long and the short of it is that Truman is the bread-winner in our family, and he only has two paid vacation days left. We have NO savings and plenty of bills, so I say he needs to work now unless it is an emergency. He plans to have time off when the baby comes home, so I think he should save his vacation days for that. However, Truman would rather take a month or so off work starting now and using unpaid FMLA leave---for one because he is �feeling stressed,� and two because he insists he needs to be there watch me BF Julian! (there is a bit more to it than that, but I won�t go into it now).
Well, I am feeling just as stressed as Truman is, and I think if he took all that unpaid leave, it would make us far MORE stressed because it would be financial suicide! I say that it is not necessary for Truman to take all that leave time because very simply, he is not the one who has to BF Julian! Last time I checked, he does not have boobs or breastmilk! It's that simple---only I have the boobs for Julian to BF from, so I am the one who has to be there! Besides the fact that Truman is the one with the full time job that supports our family.
The next morning, we finally agreed that for today, we would just go and breastfeed Julian once and be back in time for Truman to go to work. Then we can just go one day at a time from there. I felt it best not to re-discuss how things *might* be in a few weeks.
When we were at the hospital, the staff discussed with us Julian's feeding plan again. For 10 days or so, we should aim to be there to BF Julian once per day. Truman will be able to go with me for that, and he is happy about it. We may have to cancel a couple of appointments but that�s not the end of the world. By the time 10 days have passed, we will likely reassess how Julian is doing with BFing and how we want to handle it from there. We did not go into any details about how I can manage to be there for more feedings---we will cross that bridge a little later. I think that now Truman does not feel so threatened by the possibility of me being at the hospital without him (maybe he has convinced himself that it just won�t happen that way). Why he should feel threatened is what is so hard for even me to understand, but discussing it with him is getting us nowhere. Who knows---it's still possible that Julian will get BFing well, and his lungs will improve enough at the same time so he can come home in a few weeks! Maybe I won't have to be there for long days, but we will have to see how it goes.
Julian was kind of sleepy today, and did not suckle as much as yesterday. However, the LC listened to him with a stethoscope while he was at breast, and she said she could hear him suck and swallow! He had some long pauses, but he had some milk in his mouth when he came off the breast! So he really is getting something! GO Julian!
Saturday, March 11th. We put Julian to breast again today. He Bf well the first time, but he was too sleepy the second time. I want to bring him home so badly. I am so tired of all the traveling. Several times I just wanted to cry. Then we got our mail tonight and someone from church sent us a very nice letter, and it was all I could do to not bawl while reading it! My grammie called to see how Julian and we are doing---that was just so nice to talk to her again, since I haven't had much time to call anyone.
Sunday we tried Julian at the breast again. He did ok the first time, but again was too sleepy the second time. We gave him a bath, but he seemed so tired out, so we did not push him. He still needs the full 3 liters of high-flow O2.
Monday we went to the hospital in the morning to see Julian. He was pretty sleepy so he did not do much at the breast. He had a chest x-ray done and I got to hold him in position for the technician. They had me put on this heavy lead apron first. Julian did not like having the x-ray done, so he cried about it. However, this is not all bad---it helped open his lungs for a good picture. And afterwards, he breathed better and did not need as much extra O2!
We did not go to the hospital Tuesday. We are both so stressed out, and tired. Truman said his chest was hurting when he woke up, and I woke up with another headache, so we just went back to bed after Truman took Eric to school and I pumped. I guess we need to rest sometimes too. Truman feels fine now, but my headache just won't go way! Tylenol and Advil and caffeine haven't touched it. I finally took a nap, and that seemed to help a little.
We did call and talk to Julian's nurse. He had another apnea on the weekend (after 5 days without) and he had a brady (drop in heart rate) today--but it was caused by having his eyes examined. His eyes are doing ok, but they want to check them again next week. His chest x-ray yesterday showed a little fluid in his lungs (they said it looked hazy) so they will give him a course of diuretics. The diuretic is a gentle one, and may take some time to work; it may also cause him to drop a little weight as he pees out the excess fluid. They have increased his feeds again to 39 cc every 3 hrs. He still spits up, some times more than others.
Wednesday we went to the hospital to see Julian. He didn't do much at the breast. Some days he BFs ok for a few minutes, and other days he won't latch or suck at all. Seems to depend on if he is awake and hungry or if he is sleepy or if he is just plain cranky (maybe gassy). He is still young and small, so we have to make lots of allowance for him. I did notice that he seemed to be breathing more easily, and we did not have to turn up his O2 % while we handled him; I think this means that getting rid of the fluid in his lungs is helping him!
Two weeks ago, the discharge lady thought Julian might come home at the end of this month, but today they said that is not looking very likely. Maybe in another 4 wks (around his due date), but no one will promise even that. The big thing is that Julian still needs a lot of O2. It's all because he was born so early, and his lungs have problems from that. Today they tried turning down his O2 flow just a little to see if he would tolerate it yet.
At this point, we've decided that we will continue trying to put Julian to breast when we can be with him. But I am not sure if I will be able to stay for long days with him as he BFs better. For one, 12 hr days are just too long to be up there even including the traveling time (I'm already exhausted), and two, I don't have anyone to take care of the boys after school while Truman is at work, mom can't come help. So maybe we will just go up as many days as we can reasonably manage to feed Julian once a day (or twice on weekends). When he is ready to stop tube feeding, he can have bottles while I am not there. I don't like it, but maybe it is the best we can do. Once we get him home, we can work harder on getting him to breast for all feeds---I know it can be done. I have spoken with Julian's nurses and the resident in charge of his care, and they understand what I want.
The discharge lady also talked to us about other things that need to be accomplished before Julian comes home. One thing is that we are required to take a CPR course! I had no idea that was required. I�m sure it sounds good when you think about how knowing CPR could possibly save your child�s life some day, but from what I know about CPR, I just do not think I could actually do it. The whole thing of breathing in another person's mouth, and they often will throw up while you are doing it---just grosses me out too much! I guess I would do it if I had to, but I pray I never have to! We can't do the evening course, but one of Julian's nurses is certified to teach the course and we are asking if she can teach us this weekend while we are up there.
I also have to take Julian's infant car-seat in to see how it fits him. He is pretty short and even if he weighs over 5 lbs by the time we bring him home, he may be too small for this car-seat. I have previously asked the lady at the local car-seat inspection station about a car-bed if we need it, and she said she has one on hold for me; so I may be calling her back about it in the next couple weeks.
It's so hard to keep a positive outlook. I'm so frustrated that they keep pushing back when they think he might come home. I know nothing was ever set in stone, but it's so hard seeing that Julian just hasn't made the expected progress in the last 2 wks. The staff agrees that most parents find it gets harder as the baby gets closer to coming home. Most parents feel frustrated that they can't hurry up the baby and get ready faster. But most babies don't tolerate being pushed to meet milestones---they'll get there when they are ready. The separation has got to be the worst part. And all that traveling---I really don't like traveling that much! It�s been so long already, and we feel we can't take it much longer! I could care less if he has learning delays or whatever, as long as he is home with me! But his O2 need is mostly what is keeping him there in NICU, and he just can't be allowed home until he comes down on that. It's hard not seeing daily progress in the right direction, it seems like he will never get there!
One bright thing---I got my co-sleeper leg extensions today! I hadn't ordered any yet, because we had not decided whether or not to get a canopy too. If we got both, I would order them from www.babybungalow.com/ which seems to have the best prices (with shipping) that I could find. I wasn't finding any on eBay for the longest time. Then the other morning, I got a saved search email and there was a set of new leg extensions with BIN for $15. I grabbed them! And they were in my mail box this afternoon when we got back from the hospital! I was some impressed---I think it was Monday I bought and paid for them! I think I won't be getting the canopy; I�m just not convinced it would stand up to my cats and I�d hate to spend $40 plus shipping to have it ruined by the cats! The mobile in it looks really cute, but I have a mobile I can hang from the ceiling above the co-sleeper. So far the cats are being good about staying out of the co-sleeper, but we will see what happens when Rosie has her new batch of kittens (could be any day now, cuz man is she HUGE!)
Thursday. Last night, the nurse told us that so far, Julian was tolerating the small reduction in his O2. We will see how it goes over the next few days---I think I am holding my breath a little. He is now up to 4 pounds 9 ounces, and that is after being started on diuretics to help get the fluid out of his lungs!
I went to the chiropractor this morning, and I told her about the headaches I�m having. She is quite positive that I was getting them because my neck was so badly out. The adjustment HURT! I told her I thought she shot my head off with her activator thingy! LOL She said to use heat and ice alternatively. So now we are going way for the weekend and how am I going to do that? :P I took another nap today---it really helps me get through the day if I can get 45 mins or so of extra sleep.
Truman had his first PT appt for his leg today. We also got some groceries and stopped at our new Target store this morning so I could get the #2 Avent nipples we need for Julian. It seems like we are always rushing somewhere! I feel like we have been running a rat race for far too long. I just want it to stop already!!
People say how they think I am so strong and courageous and holding up well and things like that. It's nice to be complimented, but I don't feel like I am all those things. I don't feel strong or like I can hold up any longer. :P I am SICK of this! I want Julian to hurry up and be able to come home! I remember saying during my pg that the most I could wish for was to bring home a live baby--after so many losses! I have to remind myself that the good thing is that Julian is ALIVE! I am glad of that, but it's sad that I have to have to force myself to remember how lucky we are that he is alive!
Friday, March 17th. Today is Julian�s 2 month birthday! Last night Julian's nurse said he is now 4 lbs 10 ounces! He has now doubled his birth weight!!! Doesn't that sound strange? :)
We are going to go to David's House for a long weekend. I sent notes to the kids' teachers that they won�t be in school today. We slept in a little later than usual---until I woke up needing to pump anyway. We'll get to have time with Julian in the afternoon, and then all weekend too, since we will stay overnight for two nights. It will be a little like a mini-vacation, and I hope that we can relax just a little, especially since we won't have to be traveling back and forth so much. I told my mom I am so sick of going in the car that when Julian comes home I think I will stay home and go nowhere for a MONTH ! That would probably be best for Julian anyway.
We left home about 11:30 am. On the way north we stopped at a children�s consignment shop in Newport (where we used to live) and got a few things. I found some very cute drooler bibs and a couple of outfits and sleepers for Julian, mostly at half off the consignment tag price! He probably does not really need any more---but gotta love those bargains! LOL
We checked in at David�s House and had a quick lunch. Julian�s next feed was at 2 pm, and we were a tad late, but his nurse waited for us. He did pretty well at the breast for about 10 minutes, but he is not yet real effective at removing much milk. The nurse explained to count the number of times he sucks before each pause. He was averaging 3-5 sucks per burst, and they want to see 6-10. But I still think he is making some progress, and I was very pleased. I could see him swallowing some of the time!
We tried putting him to breast again at the next feeding, but I couldn�t seem to get him awake enough to do anything. So now we think that doing two feedings in a row is a little too much for him. Maybe we should do a feed, skip one (just let him tube feed for that one), then try the third feed back at breast. We came back for his 8 pm feed, and we got to meet his primary night nurse who we have talked with on the phone several times. She wasn�t sure she could teach us the CPR this weekend, but she will think about what might work out.
Saturday. We slept till about 8:30 am, which was nice. We had gone to bed around 10 pm, and I did get up to pump once during the night. I also heard the DART helicopter come in to land at the hospital nearby. I always wonder what it was like for Julian to ride in the helicopter---but he probably has no recollection at all!
A volunteer at David�s House made pancakes for breakfast, and we all enjoyed them! We arranged for a volunteer baby-sitter to take the kids for a couple hours, while Truman and I went to the hospital for Julian�s 11 am feeding. He did pretty well at the breast, then we tube fed him. He seems to spit up more when he is tube fed after being at the breast, so I suspect he really is getting more from me than we think!
We decided to go into West Lebanon for the afternoon, and come back for the 5 pm feed, to let Julian rest enough. Over-stimulating him is counter-productive, so at this point it is ok for him to have a break from trying to BF. I decided that we could buy some items needed in the NICU family lounge. There are usually snacks available there, but for quite some time now, there have been no spoons to use for eating the soups that are in the cupboards! Also, there is no powdered coffee creamer to go with the instant coffee. We have mentioned it to staff, but apparently those things are donated---the hospital does not buy them. We have enjoyed the snacks from time to time, so I figured the least we could do was buy and donate a package of plastic spoons and some coffee-mate! I spent less than $8 and got spoons, styrofoam cups, powdered coffee creamer, cocoa packets, lo-cal sweetener packets (couldn't find real sugar), and some peanut butter crackers! I felt happy after doing this! :)
At 5 pm, Truman gave Julian a bath, then I tried putting Julian to breast. Later, Truman held Julian and we had the nurse take some family pics of all 5 of us! Then Truman gave Julian his tube feed. We had a quiet evening at David�s house and we called over to talk to Julian�s night nurse.
Sunday, we slept in again. I think we do get more rest when we stay at David�s house, but then again, I miss my own bed somewhat! We checked out of David�s house about 10:30 am, since we will go home this afternoon. We had made arrangements with another volunteer baby-sitter to take the boys for the afternoon---they went to a farm and had lots of fun. We put Julian to breast, but he didn�t really suck much. After a while, we decided to stop trying. He had his tube feed, then we went and got some lunch in the cafeteria---Truman wanted hamburgers and fries! I was so thirsty, I bought water, but I still have trouble getting used to the idea of paying for water! Why can�t they have free drinking fountains??
When we came back for Julian�s 2 pm feed, we decide to put him in his infant car-seat for a �fit-test�---to see if it can be adjusted small enough for him. But he is so short, I highly doubt that in 2-3 wks he will grow the 2 more inches needed for the smallest adjustment. So we will have to either rent a car-bed or find a car-seat that can be adjusted smaller.
I tried him at breast again, but he still wouldn�t latch and suck. Finally, we decided to try him with a bottle---Truman was just aching to do it! Well, Julian just took right to it! We found that though he is a preemie, his suck is pretty strong and he did better with the #1 nipple instead of the recommended #2 nipple. The #2 was too fast for him, and flooded him with milk. I was glad I had gotten several sizes to try, so we could see what he did best with. He seems to have the hang of suck/swallow/breathe, and he took 15 cc without any problems! By then he was tired out, so we decided to give him the rest of his feed by tube---he gets 42 cc per feed now. As the nurse was getting that ready, I swaddled Julian in a blanket, so he could just go to sleep in his bed. But he started to wail, so I picked him back up. He just wanted to be held, so I held him while he finished his tube feed. :) Then he was sleepy so I put him to bed and we left to get the boys and go home.
Monday, March 20th. This morning we did the infant CPR course, and the nurse who taught it said we both passed! We were both able to make the doll�s chest rise on the first try, so that means we were doing the rescue breathing right! At 11 am, Julian did really well at the breast, nursing for about 15 minutes. He is doing some longer sucking bursts, so I think he is getting more milk from me! I am very pleased with how he is doing! Also, the last few days, they have been turning his O2 flow down little by little to see how he does. As he tolerates it, they turn it down a little bit more. They also gave him some steroids to help reduce any inflammation in his lungs, and they said he responded very well to that. He can�t stay on the steroids for very long, so we have to see if he continues to breathe better even after they stop the steroids.
Tuesday. Today, Julian was awake at least a half hour before his 11 am feed! He was poopy, so I changed him, then decided to take advantage of his alert state and put him to breast. He latched right on! It is so awesome when he does that---most times I have to try for 5 to 10 minutes before he really takes it. He now makes the cutest little grunting noises while he nurses---it brings back memories from when Eric and Jamie were babies! He suckled fairly well for at least 10 minutes, and then he burped for me without spitting up! He got fussy again and pooped, so I changed him again. He would not go back to breast, so I held him for his tube feed. He did spit up a fair amount then, so I had to change his outfit before putting him to bed. I took his temp to see how he is maintaining it while being handled, undressed, etc---it was still fine, so that shows he can regulate his body temperature well now!
Today the Drs said that they will try Julian on LOW-FLOW O2! WOW! I hope he does well with it, because if so he can come home sooner than later! They said they think he will still need at least 2 more weeks before he can come home. He will need to be on the low-flow for a while before they are sure he won�t need to go back on high-flow O2. Also, he is not yet getting all his feeds orally (breast and/or bottle), but I really think that he will accomplish that in about another week. We have given permission for the nurses to give him one bottle each night, and if we don�t get there some days to BF, then they can give him a bottle so he can continue getting used to oral feeding. I am feeling pretty excited right now---low-flow O2 is a BIG step in the right direction!
More exciting news---I was told last night that the ladies at our church are planning a baby shower for me sometime after I bring Julian home! I wasn't really expecting anything, so that will be so special!!! I can't wait to show him off to everyone! :) Of course we will want Julian to be a bit bigger first, and we'll also want to be sure that cold/flu season is over and that everyone is healthy before we take him to a gathering of people. But I still can't wait! :D I think it would be really neat if we did it co-ed so that Truman and everyone from church can be included in the fun---maybe the guys could cook up some burgers or something for everyone if they don�t care to watch me open baby clothes! LOL But whatever they do, I�m sure it will be really nice!
We are going to need a high-chair and a convertible car seat at some point this year. Other than that, we are pretty well set, though diapers will always be useful. LOL Oh yes, my rocking chair still needs new cushions---if only I had the time to make them! :) Eventually, we�ll also need clothing in bigger sizes---I had donated most of the 9 month to 2T stuff that Jamie outgrew. Now I am saving all Jamie�s clothes so Julian can use them, but it will be yrs before he wears 3-4T!
March 23rd. Some people have wondered how I can bear being apart from Julian so much. It�s not easy---in fact it is so weird having a baby, but not being able to take care of him all the time yet. It feels so bizarre! But in my case, I knew that even if I wanted to, there was no way I could stay at the hospital 24/7 for 3 months. For 1, because I have my older boys at home, and I missed them a lot by the time I was released 4 days pp. For 2, I was so unprepared and I knew I had all kinds of important things I needed to take care of once I got home. For 3, I am a homebody, and within a week I would be so homesick to sleep in my own bed, etc. I also knew that my baby NEEDED to be in NICU or he would die because he was SO premature. So I knew he had to stay there, and I had to come home. But it is hard, and I miss him terribly. I guess I just make myself deal with it because I have to do what is best for my whole family, which is a real juggling act, and I also remind myself that it won't be this way forever. There is an end in sight and Julian WILL come home! I know that the days I don't get to go see him, I tend to feel more depressed, but after I see him again and hold him and feed him and love on him, then I feel stronger again so I can make it to the next time I see him. And when I don't see him, I am still so busy getting things ready for him to come home, so that is positive too.
I sometimes think about whether we will ever try again for the fourth child we've wanted---it's in my mind because we recently got the placenta report, and it's possible that I have a *treatable* condition which gives me hope. And then I think of the NICU experience, and I tell myself I am completely NUTS---no way I ever want to do NICU again! I may dream about having a �text-book� pregnancy---but the reality is that for me a text-book pg is all pie-in-the-sky! One look at my history, and you know chances of ME having a perfect full term pg are about 1 in billions! I have to remember that problems are likely for me (though we don�t know all the reasons why), and realistically we have to be prepared for stuff like this to happen again. So maybe it�s not worth the risks to try again. I AM very happy with the 3 lovely boys I�ve got, especially Julian after all we went through to have him! Yet it�s still hard to make the decision final for no more kids�..talk about being crazy!
I never would choose to have a baby in NICU, but he is alive BECAUSE he is there! So I accept it. At the same time I can�t wait to have him home---and just maybe we won�t have to wait much longer! Because today they started talking about DISCHARGE!!!! The dr called it the "D" word.
Tuesday this week they were saying they thought at least 2 more weeks for him. Now they are saying, maybe by the end of next week! WOOHOO! So maybe he will still come home in March instead of April!
But the fact that they really are talking discharge now is a big step! Late last week, Julian was on 3 liters of high-flow O2 with the percent hovering in the 30s and 40s. He had had some fluid in his lungs so they gave him meds to help him get rid of it. Then they gave him a course of oral steroids to reduce inflammation in his lungs. He responded to this very well, so then they started turning his O2 flow down half a liter at a time. By Tuesday, they said he was down to 1 liter flow, and still maintaining the same percentages. Once the baby gets to 1 liter on high-flow, then they can try the "low-flow".
He is now on about 1/4 liter of low flow, and the percentage is staying in the 30's and low 40's! This is just wonderful, because it means he can come home soon! The plan is that he will come home with a little bit of O2, mainly because just moving home is a big change for baby, and they don't want him to relapse. So they prefer to send him home with some low-flow O2 and then take him off it after he is settled in and doing well.
So now getting him off his feeding tube is the next big thing. I really think he will do that in about a week or less. I am judging by our experience with our older boys---they started out with tube feeding, and suddenly one day they no longer needed it---they could handle all feeds orally. Julian is making progress with oral feeding. He will take a bottle every other feed when I am not there, and he is taking the breast when I am there. We will stay at David's House again this weekend, and see if he can do more at the breast. And next week, I think we should make sure we go up every day, so I want to reschedule Truman's PT appts. I really want to make sure Julian has every opportunity to BF---and Truman seems to be in agreement on this. We want him home so bad---let�s make it work! :) He will likely come home on both breast and bottles. Then I can work on getting him to breast more until he is completely breastfed.
So fingers and toes and arms and legs and eyes and ears all crossed that everything goes well and Julian comes home before April!
Julian has been going to breast at least once each day I can be there for the past week. He usually stays on for about 10 minutes, sometimes as much as 15 minutes. I can feel when he is properly latched. Then I watch his sucking and swallowing. He often sucks only 3-4 times before I see him swallow. Often times he pauses briefly before he continues. When he lets go, I can usually get a burp out of him. I try getting him back on, but usually he is a bit tired by then. If he won't go back to breast, then we tube feed him.
The nurse told me that he should suck at least 6 times per burst, and 10 times or more would be even better. They said they won't cut back his tube feed until he is sucking consistently 10 or more times per burst. So we are still giving him the full amount.
My gut feeling is that we are trying to make him take too much. He will get about half to three quarters of the way through his tube feed, then he acts like he has a tummy ache. Then he throws up, and it's usually a large amount. The nurse usually makes him take the rest of his feed after giving him a break to let his tummy settle again. This makes me think that he is getting more at breast than we think he is, even if his sucking bursts are shorter. I asked the LC about test-weighing him, but she wants to observe him first.
Weekend of March 25th and 26th. We had reserved a room at David�s House for one night, and I planned to work with Julian on BFing for as many feeds as possible. Last night, my cat had kittens---seven of them! Holy cow! I really wasn�t expecting them so soon, and I never dreamed there would be so many! But Julian is our priority and we had to leave for the hospital.
Saturday night, I actually slept in a room near the NICU, and the nurse paged me every 3 hrs to go feed Julian. Truman and the boys stayed at David's House for the night. We did NOT make much progress on the BFing, especially at night. At least we tried, but I was a bit disappointed that Julian just wasn't able to do more. I was also exhausted from not getting much sleep.
We worked with him more on Sunday, but he is still not doing much at breast, and he only did a little with the bottle. He just seemed so tired much of the time. I'm beginning to think unless things go better soon, then he won't be off his feeding tube by the end of this week---and that means he can't come home by the end of this week either. This waiting game is SO FRUSTRATING!
So late Sunday afternoon we headed home. The kids were all excited to get back and see our new baby kittens. Before we left Saturday morning, I set Rosy up with food, water, and a litter box, and shut her into our bedroom with her babies in the closet. She has always liked to move her babies around, so I left her a cardboard box with a small soft blanket in it. I also knew there was room under our bed, and sometimes she puts her babies under there. We arrived home, and first thing I did was to go to my room to let Rosie out and check the babies. Rosy was happy to see me, the room was a mess, and I could not hear the kittens. Right away I knew something was wrong, and I began looking for the kittens. Truman came down and I asked him to help me move our bed out because I couldn't see well enough under there. And that's when I found all 6 babies laying on the floor under the head of my bed, all strangely quiet. I picked them up one by one and they were all dead. Some were stiff but not all of them, so I think they had died with in the last few hrs.
I could NOT believe it! At first I thought that Rosy had hurt them, but when I looked closer there were no signs of foul play, no evidence of mauling or biting. Then I thought they must have starved to death. We were all very very upset, especially Eric, who wailed loudly and inconsolably for a long time. I ended up calling the vet, who calmly told me that it was likely that something was wrong with the kittens---maybe they could not nurse effectively, maybe they were weak or sick. Of course if I wasn't home, I wasn't here to know what went wrong or to intervene and try to save them. He said we should not blame the mother cat for "refusing to feed them". He was very matter of fact, and said that since they were dead the only thing left to do was to get the mother spayed in a few weeks.
It took me a while to process what had happened. I felt simply terrible, and I blamed myself ultimately for the situation. We had been going to get Rosy fixed after she weaned the last litter near the end of January, but then I had Julian and things were just too crazy to get the paperwork done so we could do it (we qualify for a reduced rate for low-income people). By the time I finally got the paperwork done (it takes several weeks), then I realized that Rosy was pregnant again. I did call the vet to make an appt for our male cat to be fixed first, and I told them I would have Rosy done after her new babies were old enough to wean---they agreed that was the best way to do it.
The whole timing of this is bad. Judging by the date the babies were born, Rosy must have been bred around the time I was in the hospital after my c-section. I wasn't intending for her to have kittens again, but the kids and I were still pretty excited to have more babies in the house. Even though I was a little worried about having new kittens right about when we hope to bring Julian home. And now I feel guilty because of how it turned out that the kittens died.
I talked to the vets and I also read some info someone sent me on something called "fading kitten syndrome"---it's where the kittens die usually within the first week and it's more common than I knew. Now that I consider it there were lots of risk factors involved here. Rosy has been either pregnant or nursing for the past solid year. There really wasn't enough space between her litters, and it must have been hard on her poor body. Then she had 7 kittens this time---I never imagined she would really have that many. But it's very possible that the babies were born anemic or even sick. Even if I had been home, I may not have been able to save the poor little kittens. It seems it would have been better if Rosy did not have this litter of babies in the first place, but I was too involved with Julian to stop and think about what I was allowing to happen to my cat. Losing all her kittens seems like such a high price to pay. :*(
Eric had the hardest time with the death of the kittens. But several days later he came to me and said, �Mommy, I�m sad about the baby kittens, but maybe God knows best.� I was so amazed I could have cried! He really does listen to me! I told him this very thing in one of our talks after Lucas died last year! Things happen that seem so bad and we can�t understand why, but we do have to remember that God is still in control and HE does know what is best for us!
As it is, Julian IS our first priority right now, and in one way it is a relief that I don�t have to worry about baby kittens getting into things while I am busy with Julian. Nonetheless, I�m still very sad about the kittens� death.
I had ordered the canopy for the co-sleeper the morning after the kittens were born, thinking it would help keep the kittens out of the baby�s bed. Then the kittens died, but the canopy shipped right away and I couldn�t return it without paying a large restocking charge. Oh, well, I bet I can sell it on eBay!
March 28th. Unless there is some miracle in the next couple days, Julian will not be able to come home this week. He can come home with O2, but he cannot come home with an NG feeding tube. So he has to be able to take all his feeds by mouth (breast and/or bottle). I thought he would we able to do it by now, based on his gestational age and my past experience with Eric and Jamie. But he has not made progress in the last 4 days or so---if anything he has done less at the breast than he did last week. :( This is very very frustrating! But he isn't even able to take bottles very much, though I am willing for him to have bottles just so he can come home!
He gets too tired trying to feed from either the bottle or the breast. It isn't just the sucking---he has a sucking reflex by now. But he has to coordinate suck/swallow/breathe, and the nurse says it is draining his energy. His weight is great; he is now 5 pounds 3 ounces! But his lungs are still healing from being made to breathe at such an early age, and it takes a lot of his energy to breathe even with extra O2. Then when he tries to eat too, it's a lot of work for him, and he just kind of poops out. He often just falls asleep again long before he is finished a bottle.
We have to be careful not to push him too much. It's ok to challenge him and see what he can do, but we also have to watch him and how he reacts, and back off if he isn't handling it. So he is offered a bottle for most feeds that I am not there, but he is only taking in about 28-30% of his feeds by mouth. Some feeds he can't handle the bottle at all, so he is then tube-fed. Often he will sleep while the food drips into his tummy from the tube!
The last few days, he has not done much at the breast either. Even on the weekend, when I was there for most of his feedings from Saturday afternoon to Sunday evening. Sometimes I can't even get him to wake up enough to latch on and nurse.
I talked to the LC this morning, and we think that maybe he is too tired from being offered a bottle at the 8 am feeding (during the week I get to the hospital for the 11 am feed only), so we have now asked the nurses to just tube feed at 8 am. Maybe then Julian will have more energy to try nursing at breast when I get there. The LC also thought we should try a nipple shield when we do offer the breast. I hope we are not stressing him too much by offering so many bottles the rest of the time. It's possible we will have to stick with alternate bottle feeds and tube feeds to see if that is better for him at this point.
I am disappointed that we haven't made much progress with the oral feeding. But we are still hoping that one morning he will just wake up and be able to do it. Often babies will "turn a corner" like that, so I am really hoping Julian will soon.
We plan to go up every morning this week, and then go up for the weekend again. We talked to the resident dr today, and she said we will reassess after we see how he does this weekend. If he is doing much better with the oral feeding, then maybe he can go home by the end of next week---but it is a big IF! This is hard, not even knowing when he will be home! :P
March 29th. WE HAVE A DATE FOR JULIAN TO COME HOME! :D
TUESDAY, APRIL 4th! We have waited so long for this---the date will be observed like a birthday in our family!
Julian IS making progress on his feedings again. Last night he did much better with bottles (although sometimes I wonder if part of it depends on the nurse and how skilled she is as getting him to take the bottle?) Also today the LC came in, and showed me how to use the nipple shield (I knew what it was, but I have never used one before). It still took some effort to get Julian awake and then get him to open his mouth and latch. She showed me some new tricks I hadn't heard of. My CLC training is primarily for working with full-term babies, though I am aware that working with preemie babies is a bit different. The NICU LC is trained for working with preemies, and she will definitely tell you that it is different than working with full-term babies. But hey, I am getting hands-on training and experience here with my own preemie baby! We undressed him to his diaper, and got him skin-to-skin with me. We put him in the "football" or "clutch" hold and she showed me how to prevent him from pushing with his feet into the back of the rocking chair. We put the nipple shield on my breast. Then she showed me a trick to get him to open his mouth. Tickling his lower lip doesn't seem to work like it works for full-term babies. Instead we lightly brush from his nose down to his chin. Even that took a while to get him to open his mouth. I was expressing little drops of milk into his mouth to encourage him, and he would lick his lips. :) He opened his mouth a few times, but it took several tries to get him to latch deeply enough.
But he finally did it and then the LC listened with the stethoscope. She says that he sucks 3-5 times, then swallows, then takes a breather, then does it all again. This is exactly what I thought he was doing, just from watching him. Usually babies will suck deeply and swallow each suck, but he sucks a bit shallowly. However, she says he is a smart baby because this is how he paces himself and keeps control of the milk flow. A deep suck is probably too much milk for him, so he sucks only enough to get what he can handle for a swallow. She actually decided to cut back his feed by 10 cc's after he was at breast today! That is an advance for sure! Since it is hard to say how much he really gets in say 10 mins at breast, we discussed test-weighing with a special scale that can show how much he took in by comparing before and after weights! So we might try that tomorrow.
I am really encouraged. I know why they say success breeds success. It feels so good, it renews your energy to keep pushing on! :)
So then the discharge lady came and talked with us. She has ordered the equipment needed for Julian to come home with O2 and a monitor. The in-service rep has to teach us all about using it---that was going to be Monday afternoon, but now will be this Friday morning! We also have to arrange to stay over night at the hospital---they have a room near the NICU and this will enable us to experience a night of being completely responsible for Julian's care with his home-coming equipment, yet we are just a second away from the NICU staff should we need them. This will probably be Saturday or Sunday night, although I am still working on arrangements for the boys' care while we are staying over night at the hospital.
Monday night, Eric has a school play, and we want to be there for him. Then Tuesday morning Truman and I will go to the hospital to get Julian and bring him home! One of the respiratory nurses will follow us home and make sure we are all set up once we get here! Now it's time for me to start freaking out! Just kidding! LOL
Oh, and I did ask---what if Julian isn't quite able to take 100% of his feeds orally by next Tuesday?? What if some feedings he is just too tired to finish? Well, they "can" let him come home with an NG tube as long as he is taking *most* of his feeds by mouth. Because he will still be on Oxygen, they are setting up for a nurse to come to our house every day for as long as needed, so Julian will be getting trained medical care even after he comes home. This sounds great to me! And after Julian is home, I think it will be a lot better for me to work with him on BFing!
My head is literally spinning with all the details---and the excitement! <<breathe, Abby, breathe!>> :)
March 30th. We went up again today to feed Julian. The drs came in on rounds, and they were really happy with Julian's progress on feeding. The nurse who had him last night got him to take 3 bottles out of 4 feedings! And she's the one who was so skeptical about him being able to do it so soon! The decision was made to take out his feeding tube and feed him "ad-lib". That means that they will feed him orally for all feeds, and let him decide how much and how often he wants to eat. And we will see how he does with this. If he eats less, he will likely wake early and want more the next feed. A few days of this will really show if he is ready to come home. As long as he continues to gain weight appropriately, they will let him continue ad-lib, instead of pushing a set amount at set times. All the staff felt he is ready to try this, and we were very happy with the decision.
The head dr also complimented us on being dedicated parents and finding a way to show up every morning like we have been recently to work with BFing Julian---he said he feels that more parent involvement helps preemie babies make better progress. That did make us feel good, and makes us feel even more that it's been worth the effort to make all these darn trips to the hospital!
The NICU Physical Therapist came in to chat with us. She does not have any concerns about his development so far. Only time will tell if he has any problems due to lack of oxygen at birth, but so far there is nothing obvious. He acts very normal for an infant born as early as he was. And he is even smart enough to pace himself while feeding orally! She talked with us a bit about things we should do with him once we get him home. She highly recommends carrying him in a sling (this will be easier once he is off his O2 tube). Also, he needs back-time with his head facing straight to the front, to help round his head a bit---a baby swing or an infant seat is a good place for this. And he needs to be positioned to encourage him to turn his head to the left to counteract his tendency to keep it to the right (a slight torticollis). The co-sleeper is on my left side of the bed, but we can put him down with his head towards the foot, especially during the day. He should have tummy-time---on our chests is fine, or as he gets bigger he can be propped on a Boppy pillow near me. She said she really loves the Boppy for positioning babies. Another thing I can do is swaddle him with his elbows tucked in and his hands near his face instead of letting him keep his arms flung out. We will also get a referral for Early Interventions---I told her my older boys had been in that program so I was familiar with it and thought it would be best for Julian to as well.
While we were there, my friend Sue R popped in for a quick visit. She asked to, since she had an appt at the hospital clinic today. It was really nice of her to come by, though I knew it was hard for her being in the place where one of her babies had died several years ago.
When we were done with the PT, the NICU dietician came to talk with us. Because of his breathing issues, Julian requires more calories to maintain his growth at a good rate. So far he has done well for being so premature, but it is important that he continue after going home. He was in the 50-75 % range at birth, but he lost weight immediately after birth---that always happens---and since then he has stayed around the 25 % range. It'd be nice if he could get back to where he started, but more importantly, we have to make sure he at least maintains his current rate of growth. So far he has been getting my breastmilk with HMF and formula powder added to it to increase the calorie/fat/protein content. He also gets vitamins and iron.
So when he comes home, I need to continue giving him enriched Breastmilk. They want us to use Neosure Advance formula powder. After we got back home, I called around, and found out that the grocery stores do not carry it, but CVS drug store can special order it. I also called my WIC supervisor who is a nutritionist, and she found out that I can get vouchers for this formula for Julian, and the vouchers can be used at CVS for special formulas. When she answered the phone, I said, "well I need formula", and she exclaimed in surprise, "Really, what happened??" So then I explained how we needed to add this formula powder to my breastmilk for him. We will still BF him, but for several weeks he will need supplements of this enriched breastmilk. Eventually, we will get him 100% BF, I am sure of it. You all know that I am VERY pro BFing, but I also believe in doing what is best for your baby, and in this case, Julian needs more calories. I am NOT a fan of formula, but I do see that sometimes it is a necessity for some babies.
March 31st. We are working like mad on all the details for Julian's home-coming. Because he was premature, and also because he is coming home on O2, there are so many little things to have in place. Today I got all his prescriptions for meds and vitamins filled, plus I picked up his special formula that we have to add to my pumped milk to give him more calories. I dropped off the prescripts, but they did not have them ready for me to pick-up before my kids came home from school, so I had to make a second trip later to go get everything. :P All this was after we got back from the hospital, where we fed Julian this morning, met with the dr, and also were shown about the O2 tank and monitor he will come home with. Oh, and the social worker stopped by to chat a few minutes---and then she gave us a couple of NWT baby outfits!
I also had to call and verify for Truman to have FMLA leave next week when Julian comes home---there was a bit of a mix up and I had to make several different calls. Ugh, just more stupid things to deal with. We are scheduled to stay at the hospital Saturday night for rooming in with Julian. The boys will go spend the night with Julie, one of our baby-sitters from the list of David�s House volunteers, and I just had to confirm what time she will meet us to pick them up. I also had to make arrangements for the kids after school Monday, since we will get back late from our discharge meeting. My head is literally spinning!
April 1st. We did "rooming-in" at the hospital tonight, so we could practice caring for Julian with all his equipment. They have a really nice room called the Koala suite and it is all set up for rooming-in. I am totally exhausted though. I was tired at 3pm, but we had to wait for the Koala room to be cleaned. Around 6 pm, we got our suitcases in the room, and I laid down for a few minutes, but then the nurse came saying Julian was crying to eat again. Then there was shift change, and we went to get some sandwiches for supper. After that Julian�s nurse wanted to go over Julian�s prescriptions with us and make sure we knew how to give them. Then they had to get Julian moved into the Koala room, and hook him up to the monitor and O2 in there---this did not get done till after 10 pm! The nurse wanted to be able to view his monitor remotely, so she set him up with an extra set of wires for that, which was rather a pain---I sure am glad he won�t have that many wires on him when he comes home! I BF Julian every 2-3 hrs, and he did pretty well. He would stir and stretch, setting off his alarms, so then I would get up and put him to breast. But by morning I was a walking zombie! I could not take him into bed with me because his wires would not reach that far.
Sunday afternoon we went to Julie�s house to pick up the boys. They had had an absolute blast with her over night. She had also made a meal for us---pasta with meat and sauce, salad, and Easter cookies for dessert! She has been such a life-saver, helping us by taking care of the boys and doing fun things with them---they absolutely love her now! Julie said she has totally enjoyed caring for the boys and now she considers us part of their family!
April 3rd. Today we went to the hospital in the morning as usual. I left Jamie with another preschool mom so she could send him to school with her son. Truman was taking the evening off work because tonight Eric has a school play tonight. This made it work perfectly for us to have our discharge meeting at the hospital this afternoon.
Around 12:30 or so, we were discussing lunch. I had brought sandwiches and fruit, but left them in the car where they would stay cold. Truman wanted to buy lunch, but I was reminding him that we used the last of our cash to buy donuts that morning, and we had not even had enough to buy him a coffee. The nurse over-heard us talking about this. She said, �stay here a minute, I�ll be right back.� When she came back, she told us that the staff was pooling together to buy us a pizza for lunch to celebrate that Julian was going home tomorrow! They ordered the pizza and sodas, and someone went and brought it up, then they put it on the table in the Koala room so we could have our little �dinner for two!� It was way cool!
Let me tell you, this just is NOT like any ordinary "bring your baby home"! I never imagined how involved everything is, but it's because of his respiratory issues and the fact that he is coming home with O2. But I still can't wait to get him home!
The drs and nurses agreed with us on a satisfactory feeding plan to make sure Julian continues to grow and gain the weight he needs to. His respiratory issues mean he needs more calories than most ordinary babies. Every 2-3 hrs I nurse him for 10-15 mins on only one breast, then top him off with about 1 ounce of pumped milk fortified with Neosure formula powder to make it 27 cals.
They have arranged for a visiting nurse to come and weigh Julian every day in the beginning. Due to staff shortage, they were not able to get the private duty nurse that they wanted for us, but I was actually wondering what a nurse would do at my house for all those hours!
There is a woman whose job is to help by setting up the appts that Julian needs. Julian will have lots of follow-up appts after he comes home---the first is with our pediatrician on Wednesday, and then he has appts with the ophthalmologist (sp?), the respiratory therapist, the developmental OT, and some others, but those will be next week and several weeks after. So I guess we won't be able to stay home for a month after he comes home like I wanted to, but it will still be so nice having him home with me. :)
One of the Nurses will be following us home so she can meet with the local EMTs at our house. This way, they can learn about Julian should we have an emergency. They can help better and more quickly when they already know where we live and what the baby's situation is (preemie on O2 with chronic lung issues).
Also, someone from Keene Medical Supply company will be coming to our house to make sure we have enough O2 tanks, sensor probes, etc for Julian. We have already learned how to use his monitor and O2 set-up.
We got home with just enough time to pick up the boys and eat something quickly before rushing off to Eric�s play. Truman video-taped the play, and the kids did a great job!
