Julian did ok, but he did have a very hard time settling to go to sleep. He was over-stimulated and very tired, and just fussed and cried, but he kept fighting sleep. I finally got him to go to sleep, but then he was disturbed and awakened before he was really rested. So he was major cranky-pants. He slept pretty well at night thankfully! I was able to keep ahead of him with pumping, and didn't need to use any formula. I couldn't take frozen milk with me, because I didn't have a good way to keep it frozen until I needed to thaw it, and then heat it once he needed to eat. I took a little bit of fresh refrigerated milk with me in our cooler, but didn't even have to use it! So I warmed it for him this morning and put this morning's first pumping into the freezer.
Now that we are home, Julian has been sleeping most of the day! I know for sure that it will be best for him to stay here with my mom when I go to AZ for my conference. He will be able to sleep in his own bed, and be in his familiar surroundings, and he will have his daddy and brothers for part of the time so there are familiar people too. I think he will warm up to my mom quick enough.
I too am glad to be home. When I was a kid I loved going on road trips. But now I dislike traveling. It is so much more complicated with children. My business trip will be better without kids along, but I am sure I will be glad to get back home again! I know I am currently over-tired from our schedule change due to Truman going on day-shift, so maybe I will get some extra sleep when I don�t have to wake up and feed Julian!
September 5, 2006. I took Julian in for a check up today with our pediatrician. He weighs 5.6 kilos or 12 pounds 6 ounces. Can you believe that he has gained just over 10 pounds since he was born? :) They measured him at 25 inches long, which is 1.5 inches longer than the measurement taken at DHMC 2 wks ago--so I think maybe one of those measurements is incorrect! LOL He is growing longer, but he still wears some 0-3 mos. clothing.
The dr listened to his lungs. She said they do sound a little wheezy, so we are going to start him back on Flovent (a mild inhaled steroid). He needs to start fluoride because his teeth should be coming in soon, so she is giving us a prescript that contains iron, vitamins, and the fluoride. This will be easier to give him everything at once, instead of a bunch of different meds. Julian HATES taking his meds or vitamins. I can no longer put them in his milk---he refuses to drink the milk! I shoot them towards the back of his mouth, but he still spits at least half out again! But only 1 time a day is better than 4 times. We are stopping his pepcid too. I often forget to give it to him, but he seems to be fine with out it. He still spits up some, but it doesn't seem to bother him much if any.
We can also stop giving him any fortified breastmilk (pumped milk with formula powder added)---he doesn't need it any more! Oh, and we don't need to weigh him every week either, so the dr will cancel the order for the visiting nurse who was doing the weight checks. I'll miss her visits, but it's great news for Julian that he is doing so well he doesn't need her services! :)
The dr looked at Julian's lower gum where it appears his teeth might be pushing through down at the base of the gum instead of at the top where the teeth should be. She said all we can do is watch it and see if they move to the right place. They aren't through the gum yet, but they are very visible through the gum.
Julian sees the respiratory dr at the end of this month, she wanted to see him before RSV season starts on October. Then Julian will have his 9-month check-up with the ped in mid-October (and he will get his first RSV shot then). The dr said we should also have our entire family get flu shots this winter to help protect Julian.
September 15th. I am getting ready for my trip for Phoenix, AZ, for the WIC BFing conference. I am not taking Julian with me, but I have to keep pumping breastmilk for him. I still have a lot in the freezer, but I have to keep my supply up while we are apart. At first I was not sure if I could bring my milk home, but now I think I have figured out what to do. I am going to be gone 5 days total, and if I pump my normal amount per day, I will have nearly 5 quarts of breastmilk!! I decided I really wanted to try to bring it home. And if for some reason it didn't work, I haven't lost any more than dumping it anyway.
First I checked out the SW airlines website, and also the TSA website. There was not anything specific about breastpumps, and the only mention of breastmilk was that a small amount is allowed only if your baby is traveling with you.
So earlier this week I called the airlines and talked to a very nice woman. I told her I was going on a business trip without my breastfed baby, but I needed to be able to pump milk every 2-3 hrs while I was away from him. And If possible, I also wanted to bring my breastmilk back home.
She said that an electric breastpump would come under electronic devices and I can take it as a carry-on, no problem. I just can't have any liquids (not even fresh breastmilk) or gels with it when going through security. So I asked if there was any problem bringing out the milk I pumped in the plane, and she said no. I mentioned we have a lay-over, and she said as long as we don't leave the secured area, there is no problem taking my milk on the second plane, but if we leave the secured area, they won't let me bring it back through security. Ok, at least I know.
So what about bringing the milk back home at the end of the week? She said if it's frozen, it's no problem if I put it in a *leak-proof* container and check it with my luggage. We talked about how to keep it cold. Dry ice has to be used according to certain specs; besides I am not sure if I can get it easily while I am out in AZ. She strongly recommended that I get some re-freezable gel-packs---those are ok to use with perishable items in checked luggage. BUT not having access to a freezer will be a distinct disadvantage for me. However, since I am planning to meet April S. from one of my online groups, I am asking her to get me some cheap gel packs and FREEZE them for me, and give them to me when we meet the night before I leave to come back home.
Southwest Airlines does NOT allow Styrofoam coolers, so I got a hard plastic picnic cooler to take with me. I got one big enough so that I will have room for all my breastmilk (in those little milk freezer bags of course), plus ice and freezer packs. We can use the cooler for our family afterwards anyway. I am taking my own frozen freezer packs and whatever I pump in the car on the trip to the airport I will put in the cooler with those packs, before we check our luggage on the way out.
I then called the hotel and asked for a refrigerator in our room---I explained I was a BFing mom attending the WIC BFing and Nutrition conference there and I need a way to keep my milk cold. We can have a small refrigerator at no charge. With any luck, it will have a tiny freezer in it. But it might not, so I also plan to get ice and see if I can't use that to help my milk freeze. It won't be deep-frozen, but I'll get it as cold as I can! I think my freezer packs will thaw during the week in the little refrig.
When I come home, I will put my bags of breastmilk into my cooler to be checked on the plane. My milk probably won't be completely frozen, just because I won't have access to a freezer. I will get the frozen gel-packs from April to put in my cooler. And I am taking some large Ziploc bags, and if I need to I can seal ice in them for putting around my milk. The airlines woman said it's very important that nothing (breastmilk or thawed ice) leaks out of my cooler. I am taking packing tape as well, and a strong luggage strap to make sure the lid stays shut on the cooler. But I won't be surprised if security wants to check inside. I will not be able to fit that much milk inside my one suitcase with my clothing, so I think the cooler will work best.
Anyway, that's what I figured out.
September 23rd. I am back from my trip to Phoenix, all safe and sound! I spent the entire week before I left just getting everything ready for me to be gone. I cleaned the entire house, got groceries, paid bills, and did up all the laundry. I also made lists for my mom, so she knew what food was available, what the kids� routines are, and how to thaw and warm Julian�s breastmilk from the freezer.
The Friday before I left, someone stole a truck-load (approx 8 cords) of log-length firewood from off our property. We called the police and they started an investigation. I spent Saturday taking pictures, writing notes for the police, and talking to some neighbors about it. I also let our Pastor know what had happened. It was hard to think about going away with something like this having just happened, but we prayed that I would have peace of mind. I was able to go on my trip without worrying about anything, not even the safety of the children. I had complete confidence that God was watching over all of us.
Sunday before I left turned into a rather crazy day, as I finished all the last minute stuff in between pumping and feeding Julian. My parents came to take care of the boys while I was gone, but I felt I had to make a nice dinner (ham with butternut squash and pickles). I finally put the last of the washed laundry into the dryer and crawled into bed around midnight, only to get up at 3 am and get ready to leave.
Our trip was fun! I really enjoyed flying. I took lots of pictures. I took my WIC breastpump on the plane with me, and pumped several times. On the first plane, we sat in the front row, and one of the flight attendants said I had to put my breastpump in the overhead compartment during take-off and landing. But she helped me get it down to pump once we were at cruising altitude. She then told me she was pregnant (about 3 months along), and she wanted to know more about pumping for a baby! You know me, ever the helpful BFing Peer Counselor, more than willing to give out BFing info! :)
Arizona was awesome! I'm native to NH, and the southwest is a very different landscape! But it was nice. The vegetation reminded me a lot of south-central Florida where my Grammie lives. The weather was sunny and just perfect....80-90 degrees during the day, but high-60's at night. Much nicer than 60's during the day and 40's or less at night like it was here in NH. LOL
We were in conference from 7:30 am to 5 pm, but we had two shorter breaks and one lunch break. Of course I had to pump at every break, but I quickly learned how to plan so I could still grab something to eat. I also hand-pumped during some of the classes, and I was able to keep my supply about where I wanted it. I didn't do as well pumping the days we traveled. But I was still able to bring home 118 ounces of breastmilk for Julian! Of course, he did eat more than that while I was gone---I think he was missing me, so he ate more than he usually does! LOL Now I know why I have all that extra milk in the freezer from when he was in NICU and not eating so much.
Julian did very well with my mom. I swear she is the next best person to take care of my kids besides me. She is even better than my husband! LOL I did call in every day, sometimes twice. Julian had a bit of a cough and sniffle which worsened over a couple of days, so I had my mom call the pediatrician. We don�t take chances with even little colds because Julian is high risk for respiratory illnesses, and it was no surprise to me that the dr wanted to check him. He was ok, his lungs and ears were clear, and he did not run a fever. By the end of the week his cold was gone. I think breastmilk certainly helped him fight it off. J I am so glad I can pump for him.
I had asked for a small refrigerator in our hotel room, and lucky for me, it had a small freezer in the top corner of it. I set it on the coldest setting. I laid my bags of breastmilk flat and stacked them up each day, until the freezer box was completely full. The last four bags from Thursday, I laid on a plastic food container right under the freezer, and by Friday morning, they were frozen too!
To bring them home, I put the bags of milk into two large zip lock bags just in case of thawing and leakage. Then I put the larger bags into a soft-sided insulated bag (a really high quality one with a silver "space-blanket" type of lining) I had kept my four freezer packs in this soft-sided bag inside the refrigerator, and to my amazement they stayed frozen the whole time we were there! So when I packed my milk cooler on Friday morning, I put two freezer packs in the bottom, then I put the insulated bag of milk in, and stuffed a freezer pack down each side. April brought me another frozen freezer pack, which I put on top of the insulated bag. She also gave me three flexible cold gel packs, and I tucked those around the milk too. The cooler lid did not have a real latch on it, so I taped the cooler shut with strapping tape, and wrote "Perishable", "keep cold", and "breastmilk" on the tape. I also had a strong luggage strap, which somehow slipped off the cooler during transit, so it's a good thing I had taped the lid shut too. When checking my luggage, I told the airline person that the cooler held frozen milk for my baby at home, and they never batted an eye. There was no sign that they ever undid the tape to look inside, it was exactly how I put it on, and my writing still lined up perfectly where tape overlapped. Friday night, when I finally opened the cooler at home in NH, all the milk was still completely frozen solid, and I put it into my freezer---it was 16 hours since I had packed it in AZ! Only the edges of the freezer packs were starting to soften a little.
However, my breastpump did get bag-searched on the return trip! LOL. I was of course taking it on the plane, and the security person said he wanted to check inside. Actually the man doing the bag-search said he knew exactly what it was, because his wife has a breastpump! :) But his partner couldn't tell what the battery-pack was, so they had to check everything in the pump case. They make you stand right in front of them, while they take everything out of the case and run a wand over everything, but you are not allowed to touch anything while they do so. It really wasn't a big deal---you cooperate and answer questions with a smile (no fear) and say yes sir, and it was simple! Then he tried to put everything back in, but the cord was under the pump, and the lid would not close, so he let me do that part---of course I know how to make it all fit just right! :)
I did pump milk several times on the planes (we had another plane change in Nashville on the way home), so I put that milk in milk bags and kept them in a plastic Rubbermaid box inside my knapsack that I carried on the plane. I would put my ice cubes from my drinks on the plane into a separate milk bag to help chill the milk in the Rubbermaid box. :) My milk from the trip was fine on my arrival home, and I put it in the refrigerator for Julian.
My family was extremely happy to see me. Actually, I was very glad to be back home again. The trip was fun, but I missed them, especially Julian! I had his scrapbook with me, and several times a day, I got it out of my bag and got my "baby fix" looking at Julian's pictures. Inevitably, I ended up sharing the pictures with whoever was near me, and people just loved it! Many people were impressed than I was pumping for him like I am. I know I made the right decision to leave him with my mom. We missed each other, but I know he would not have done well with the long days, both traveling and in conference. I'm sure I would have ended up spending half the time trying to console him and get him to sleep. He gets over-stimulated too easily, and it's hard for him to relax in strange places. Also, both Billye and I had a lot of ear-pain during our plane descents, and some even during take-off, no matter what we tried. I bet Julian would have really hated that part!
After I hugged the older boys, my mom handed Julian to me. As I hugged him and said hello to him, he put his hand on my face, and felt my mouth and cheek----it was as if he was saying, "is it really you, mama?" And then he smiled sweetly at me, like "it is you---for real!" It was priceless! Tonight, I offered him my breast when he was rooting a bit. He took my nipple in his mouth several times, and sucked a bit before he gave up. That's more than he has done in many weeks, so maybe he will be willing to try BFing again! I plan to keep offering it and see what happens.
September 25th. Julian's therapist from EI was here today. She is concerned about how misshapen his head still is. He has a very definite flat spot on the back right side, and a protrusion on the back left side. I have been concerned about it, and I asked our ped about it several months ago. Our ped was not concerned saying we just needed to keep putting him down in such a way that he will turn his head to the left and even things out. Well that is much easier said than done! Julian will sometimes stay looking to the left for a little while but then as he sleeps he will turn back to the right--it's like his head just falls that way. The flat spot and the weight of his head make it easy for him to turn to the right, and at the same time it's hard for him to keep turned to the left, though this would put pressure on the protruding area and help it flatten.........if he could just keep his head that way---it's like trying not to roll back down a hill! I tried using a sleep positioner, but he just moves his body around till he can turn his head to the right anyway. The therapist has been doing exercises with him weekly to help him stretch his neck muscles and help him turn to the left more easily. But his head shape has just gotten worse. She said we will have to look into a special helmet for him, and we should do it soon while his head is still soft enough to reshape. I asked her to call our ped, because I think if the PT says it, it will get more attention than if I ask again---I'm just a worried mom not an expert on baby head shapes! lol Don't get me wrong, I love our ped, and I can understand why she did want us to try simple positioning solutions before rushing off to get a helmet for Julian. Insurance requires 3 mos of PT before they will consider paying for the helmet. But if positioning and PT exercises just don't work---and they haven't since last May---it's time for more drastic measures, and soon before it's too late.
September 26th. Julian had a follow-up appt with the respiratory dr. He is doing just great. He weighs 12 pounds 15.2 ounces, and he's 24.5 inches long. His head circumference is 42 cm, which they are very happy with. And we are getting referred to "the noggin clinic" for his lopsided head shape. The nurse is also going to authorize Keene Medical Supply to come get the O2 therapy equipment and monitor, since Julian does not need it anymore. Yay!
The dr was surprised that I haven�t started Julian on cereal yet. I had told her before that I wanted to wait until he is 6 mos corrected age, because the AAP now recommends waiting until baby is 6 mos. Today she insisted that he really should be on cereal. What made me really chuckle was when the dr said that Julian is ready for solids because he puts his hands in his mouth---in her words "he's eating his fingers, so he wants solid food". Ok, I'm just a mother, but I thought that it's just the age that babies put everything in their mouths, including their fingers, toys, burp cloths, etc. I didn't know that was a sign of wanting solid food, especially since Julian will chew and suck on his burp cloth right after taking most of a bottle of breastmilk! He stops eating when he is satisfied, whether or not he finished the bottle. I would even venture to say that he chews on things because he is teething and it feels good on his gums, NOT a sign of hunger. Julian still appears to have a tongue thrust, and he does not show interest in what I am eating, so those are other reasons I think he isn�t ready for solids yet.
Well, in 3 weeks he will be 9 months old---corrected age 6 months, which is what I am going by---and then the drs can be happy that I started him on cereal. Maybe he won't even like it! LOL Jamie was 6 months old when I started solids with him, and he hated cereal. It was all I could do to convince him to take one teaspoon a day. But then again, maybe Julian will like it like Eric did---you just never know. But whenever we start solids, Julian will still get mostly breastmilk as long as I can possibly give it to him. :)
October 1st. Yesterday afternoon, I was in the kitchen and Jamie comes running in. "Mommy," he announced, "I want you to have another baby soon!" "You do?" I asked. "Yes," he replied, "I want a girl baby!"
Surprised, I said, "Well, I don't know if that can ever happen. I wanted you to be a girl, but you came out with the wrong equipment. All of you did."
"But I'm a BOY!" he shouted. "Now we need a girl!" LOL
What can I say? I agree a girl baby would be nice, but with my luck it's not at all likely. Besides with my pg history, we probably are not going to have any more babies, boy or girl. :P)
Julian is such a character! He loves to eat his toes, especially when he is undressed. His other favorite pastime is waving his hands around so violently that he whacks himself (and anyone within reach) LOL. The other night he was holding a toy and he kept whacking himself with it! He hit me when I got too close, and you know, it stung! I asked him why he liked hitting himself, but he didn�t seem phased by it, even when he hit his forehead hard enough to leave a pink mark! The only time he cried was when he smacked his eye with a toy! Crazy kid!
His favorite toys are his crinkly book and his burp cloths. He also likes those plastic links, they are easy to grab and fun to chew on. His mirror is still fun to look at himself in. Sometimes he will just lay quietly and suck on his tongue (yes, you read that right, his tongue, not his thumb).
Julian is also fascinated with my mouth and he likes to put his fingers in it. Of course I pretend to eat his fingers, so we laugh and keep this game going. Sometimes I rub my nose on his nose (isn�t that what they call Eskimo kissing?), and Julian laughs and tries to eat the tip of my nose! Basically everything he has to try and get into his mouth, including my hair; he will even put his fingers in his mouth while drinking his bottle! He often sucks on his sleeves, and he also laughs and grabs his clothes when I pull his clothing over his head when dressing or undressing.
When he is awake, Julian wants to be with us. He hates being left alone---he is such a social little guy! I don't like leaving him to cry but I do have things that need to be done, so I have several ways to keep him happy. Sometimes I put him in the swing or playpen with a teething toy, and as long as he can see me he is ok with it, for a little while at least. Sometimes when the other kids are home, he will be content if he can see them, especially of my oldest makes faces at him and they get laughing! LOL Other times I put Julian in the sling so I have hands free to work while holding him. And just recently I got out the Evenflo backpack so I can carry him with me while I do things. This works just great! It's easier to work with him behind me instead of in front of me. There is a strap to attach his teething toy, plus he is up where he can see everything going on, (plus he can pull my hair and get me to react--lol). I can take him outside with me, and as long as I don't bend over I can do most yard work. I had him in the backpack at work one morning, and he did just great---he even fell asleep too----and I got 2 whole hours of WIC office work done!
Monday, October 16th, was Julian's 9 mo check up. He weighs 13 pounds 14 ounces. His length is 25 1/2 inches. And his head measures 43 cm. His head measurement finally made it onto the bottom of the chart for a 9 month old boy (not correcting his age for being a preemie). His weight and length are still below the chart, unless you correct for age, then he is hanging around the 5 %ile for weight and 20 %ile for length. Go Julian! No shots this time---they will give him his flu shot and his RSV shot on Nov 2.
We started cereal today. Julian was not all that thrilled with it. I took lots of pictures, and made a little picture show with captions explaining the story of his first solid meal. It was very cute and funny, especially the faces he made when he decided he was DONE! :)
October 18th. This morning the therapist from the state came to do his oral assessment. This is the appt I asked for 3 months ago, hoping that we could figure out why Julian couldn't nurse, and maybe we could fix it and get him back to breast. But 3 months later, my hope is draining away.
The assessment went well, and she says he is doing what she expects him to do for his corrected age of 6 months. He has a narrow palate, but he seems to accommodate for it. His sucking reflex is almost gone, which is what she expected. He now sucks voluntarily---when and how he decides to.
She told me about something I have never heard of---she calls it "chin support". The technique is so simple, I wonder why it is not well known. But it helps babies like Julian who have a very shallow sucking pattern. Very simply, while you are bottle-feeding your baby, you place your index finger firmly under his chin right at the back of the chin bone. You can also use the tips of your fingers of the same hand you are holding the bottle with (which I thought was easier). You don't push up; you just give firm support to the baby's jaw this way. You can see immediately in the baby's cheeks how he starts sucking more deeply and effectively. This works with breastfeeding too---you can place your index finger under the baby's chin to support it so they can suck more deeply.
I kind of wished I had known this when Julian was a lot younger! He has always had a very shallow sucking pattern, which is a big part of why he had trouble removing much milk from the breast. We went over his whole feeding saga, and I did feel somewhat better afterwards. Had I known about chin support I could have tried it with BFing to see if it helped him, HOWEVER she cautioned that it still wouldn't have eliminated how his *breathing issues* affected his ability to eat. Julian has always breathed harder than most babies, and she noted how he sounds rattly and wheezy (our drs are fully aware of this, and right now we give him Flovent inhaled steroid and watch him.) Breathing still takes a lot of energy for him.
The NICU LC had told me she believed that Julian sucked shallowly because he needed a way to control milk flow from the breast so he could still breathe. The therapist today agreed. Breastfeeding usually requires deep active sucking. But with bottle-feeding, a weaker baby can just let it flow; and they can even clamp it off to slow or stop the flow if they need a moment to reorganize---I have seen Julian do exactly this with his bottle! A normal healthy infant is usually in control of the breast, but things change with a compromised baby (like a baby with breathing issues), and the baby can quickly become overwhelmed at the breast.
Julian was a smart baby and figured out that he could control the bottle to eat and he could still maintain his breathing. Babies will choose breathing before eating, so if they don't feel they can handle both, they will breathe but refuse to eat. The therapist said GN tubes were invented for babies would could not manage oral eating and breathing at the same time. It�s actually a good thing Julian could handle a bottle so he was able to eat as well as breathe.
So we think it is accurate to say that Julian's difficulty with breastfeeding was mostly due to his breathing issues. It was not truly a case of "nipple confusion" or bottles interfering with breastfeeding. His nursing strike was his voluntary decision to do what works for him. Bottle feeding allowed him to eat and breathe at the same time. Breastfeeding didn't work for him because he couldn't breathe and eat as well--it was just too hard to do both. He figured out how he could breathe at breast by sucking shallowly, but then he wasn't getting the food very well. So one day he said "enough is enough" when he emphatically refused to try BFing, and that was that. The therapist knows exactly how I feel about this---I am a CLC and my baby won't BF! Well, she is a trained speech/language pathologist and her 8 yr old daughter still has speech problems. It's so easy to feel that we failed with our children somehow, but usually it is not our fault--after all we are trained to know the right things to do and sometimes it still doesn't work because of factors beyond our control!
The therapist watched Julian take a bottle. Though he is older and stronger now, he still sucks shallowly. Shallow sucking works well on a bottle, especially when you don't want to be overwhelmed with milk; it just doesn't remove much milk from the breast. I tried the chin support technique while bottle-feeding Julian today, but I noticed he had more trouble handling the extra milk flow that resulted from deeper sucking. He choked a little when he got too much milk in his mouth. I think that shows he would have had a harder time with more milk flow from the breast if I tried chin support months ago. He needs slow, paced feedings, and plenty of time to reorganize himself. He takes several shallow sucks, swallows, then audibly lets out his breath like he has been holding it. Even with the bottle (and the slowest nipple) he sometimes loses his sucking pattern, and tries to take a breath before swallowing---and chokes on his milk. He does not do the traditional suck, swallow, breathe rhythm. I think he does not know how. And I think it has everything to do with the effort he must put into breathing.
We also tried some cereal while the therapist was here. Julian is not crazy about cereal so we need to take it slow. She said to give the spoon sideways instead of point first--it's less "threatening". Julian is very sensitive, and gets over-stimulated easily. When he has had enough of anything he puts his hands in front of his face, or pulls a blanket or burp cloth over his eyes. It's how he tries to block out stimulants (light, noise, movement, etc) and we should always follow his cues and respect his no. Both his regular PT and I have noticed that Julian does not always want to be held while he is fed. He does better if we lay him down, make him comfortable for sleep, and let him close his eyes and fall asleep as he finishes his bottle. I have been doing this for quite some time, because when I held him he got very upset. When I laid him down in his bed and just sat next to him to feed him, he settled and finished his feeding. Sometimes he will let me look at his face, but many times he turns away or covers his face---he's saying that it's too much stimulation and he wants to shut it out. I have to respect him and not take it personally. He knows I am his mom and he does need me, but it has to be on his terms. If he can't handle something he sure lets me know!
It's been a big challenge having a baby who is both high-need and over-sensitive!
Thursday. I took Julian to get his 9 month portraits done at Sears. I really wanted a pic of him looking in the mirror. We got a cute pose, but I didn�t end up buying it because the mirror had two big scratches on it that marred the reflection of his face---it was especially noticeable on the larger size prints. I did get 1 sheet each of 5 other poses. He is so photogenic, and they are all great pics!
Friday, October 20th. Today was the other half of Julian's oral/nutrition assessment. The nutritionist from the state came (she wasn't able to come Wednesday with the therapist). She is an IBCLC, and I recognized her from the NH BFing conferences I attend every year--she is on the BFing Task Force. I asked her about the "chin support" and she said it is also known as the "Dancer hold". That term sounds vaguely familiar, like I read it in an article sometime, but I couldn't tell you what is was or how it applies to BFing. I don't think it was covered in our CLC course. She said it is a way of cupping your thumb and index finger (actually the "web" part between your thumb and index) under the baby's chin during BFing---ok, now I see how that translates to "chin support". She said it probably would have helped Julian suck more effectively to remove milk from the breast---great, now I feel bad again that I did not know. BUT, then she concurred with the therapist's opinion that Julian most likely would have then been overwhelmed with milk and unable to coordinate suck/swallow/breathe. He probably would have choked on his milk and refused the breast anyway. He KNOWS he can handle the bottle, even though sometimes he still chokes and sputters on that. as it was, we still supplemented him with fortified breastmilk through August, which meant using some bottles, so she agreed that he was not a baby with whom we could try "booby boot camp" (breast or nothing) until he got it right. He had already shown us long ago that he chose the bottle because it is what works for him.
She said Julian is a bit too old to try to get latching at the breast again. She said the cut-off point is about 3-5 months of age, because sucking becomes an act of volition rather than reflex. Julian now sucks voluntarily, not by reflex, and he has made up his mind (months ago) that he will not latch on the breast. She again praised me for being dedicated to pumping milk for him long-term. I'm disappointed that I can't get him back to breast, but pumping milk for him is the next best thing.
Then we talked about solids for him, and meeting his nutritional needs. First, she wants me to start remembering to take my multi-vitamin and fish oil! I could remember it when I was pg, but since Julian came home, I always forget it. I tried putting my vitamin box in places where I should see it and remember. Somehow it always seemed to get buried by other things---in the refrig it got pushed behind other food, on the counter it got moved or covered by dishes or bread or whatever, by the computer it got covered by papers (my desk is just too small!), and there is just not enough space to keep it in the bathroom. She said that since I am making Bmilk, I really NEED those vitamins and calcium too, so that my milk will have them for Julian. Julian does get baby vitamins, but I am not much better at remembering to give them to him. I always think of them at the wrong time, like when he is asleep (as in right now!). Ugh!
She also suggests that I try feeding Julian avocado, since it is rich in the fatty acids he needs for brain growth. I have never bought them, much less eaten them, so this will be something new! And when he turns a year old, she wants me to start giving him cows milk---this is one thing she doesn't want me to correct his age and wait on. Cows milk actually has a higher protein content, so it will be a good addition to his diet---NOT to replace breastmilk though, just in addition. She wants me to skip sippy cups with spill-proof valves, and try an open cup, or a straw cup for introducing juice and milk.
Julian will be re-assessed by the SLP therapist in 3 months, and the nutritionist in 6 months. I'm not really concerned about anything. What I really wanted was to BF Julian, and I though their professional assistance might help us towards that end. I guess I just have to learn to accept the fact that Julian isn't likely to ever breastfeed at breast. I still offer him the breast on occasion if we are both relaxed, but he just plays with it like a teething toy. :) It'd be nice if he surprised me one day and latched and started nursing, but I can't count on it ever happening. It makes me a little sad---since I became a CLC I have been dreaming about nursing a new baby and putting into practice all the wonderful new things I learned about BFing! Oh, well.......
October 21st. Did you know? You can make butter from breastmilk! I accidentally made some butter today out of Julian's breastmilk! I was carrying his bottle in my pocket while we walked around the Keene Pumpkin Festival for several hours this morning. Julian was in the backpack and fell asleep, so he didn't take any milk. We got back to the car, and I pulled out the bottle to feed him, and found all these little round balls of butter floating in the milk. There were 7 balls of butter, each about 1 centimeter in diameter! I tasted one, it really is buttery! LOL I wanted Julian to have that fat. I warmed his milk in some hot water, and melted all the butter back into his milk, and he then drank it. :)
October 22nd. I was in the kitchen, and Jamie came running in. �Mommy,� he said, �when is my baby sister coming?� �Well, I don�t think we are having one,� I responded; �We have Julian.� �I know, but I want a baby sister too!� Jamie declared. Hmm, I think that would take a miracle!
October 24th. Julian is decidedly NOT thrilled with solids yet, so we are going very slowly. This week we tried mashed banana, but he does better if I mix the cereal and banana, it's a better texture for him and easier to swallow. He still only took about 1 tsp total.
October 28th. We participated in a Walk for Remembrance and Hope on today. Even though it rained, it was great. Truman kept Julian inside to keep him dry, but I took Eric and Jamie. We wore our rain boots---good thing too! They had a blast sloshing through all the puddles. :)
After the walk, we met inside for a little memorial (the kids colored pictures to keep them occupied), and then we had lunch. We also made a poster with butterflies for remembering our babies---the poster is being hung in the hospital hallway near the chaplain's office. The idea is to promote awareness of pregnancy loss.
I took pictures. At one point I dropped my camera and the battery door broke off. I was able to get it back on, but I lost my last picture. It didn't save apparently. Oh, well. It was still a great day.
I really like meeting other parents and sharing stories about our angel babies---as well as our miracle babies. :)
November 1st. This morning Julian had to get his flu shot and his RSV shot. He cried hard, especially for the flu shot, but then it was over and I got him calmed down again. He had no adverse reaction, thankfully.
November 6th. Julian had his follow-up eye check today. His eyes look great they said. He won't need to be seen for another yr, although she said he could probably even go two yrs, his eyes are so good. The only reason they check his eyes is because he was born so premature, and at one point he had ROP (retinopathy of prematurity). If left untreated, ROP may cause blindness. But ROP may resolve on it's own too, which is what Julian's did early on. O2 therapy may cause higher incidence of ROP, but even though Julian was on O2 for so many months, it was a low enough flow for most of that time, and did not affect his eyes.
The eye exam is a bit rough, and Julian's eyes are red from it---poor baby! But at least we don't have to worry about going back for a long time now. The pediatric eye dr left the practice at DHMC, so Julian had to see the adult ophthalmologist. I did not like her nearly as much, and it is SO weird having the only baby in the waiting room full of ancient people in wheelchairs and with crutches and canes! :P
We were supposed to see the respiratory dr too, but she had to go out of town so we could not see her. So instead we went over to the NICU and said hello to the staff there. We also saw the head Neonatologist and the resident dr first assigned to Julian---they could hardly believe how great he looks! They remember how small he was, and now look at him---over 14 pounds and full of chubb rolls! The nurses just oooohhhed and aaaahhhed over him. Then they took our picture to add to the bulletin board in the "visiting grads" section. :)
November 16th. Julian has a cold again. Not too big of a surprise, since Eric and Jamie have had coughs for a week now, and unfortunately I got the same cold as well. The primary feature is a deep hacking cough. Julian has been fussy the last few days, and now he�s coughing a lot. He coughs until he throws up mucus, and then milk from his tummy follows. His breathing sounds very rattle-y. It makes me think �snap, crackle, pop.� He does not have a fever, but because his lungs are fragile, I decided to call the dr. I thought they might want to see him before the weekend. They actually wanted to see him today!
The dr said Julian's lungs sounded VERY wheezy, and she almost ordered a chest x-ray b/c of his history of BPD. But first she had us do a breathing treatment with albuterol and their nebulizer. He kept trying to eat that thing---LOL. But afterwards he sounded SO MUCH BETTER that she decided a chest x-ray wasn't necessary. She called in a prescription for albuterol that we can use with the mask/cylinder thing we have (oh, they call it a "spacer"), so I can use that every 6 hrs at home as needed. Once he is over this cold virus, we can stop the albuterol, but he will continue with the flovent which he on as a maintenance thing. He does sound a lot better, and he's playing happily right now. Oh, yes, they also weighed him today, and he�s 6.45 kilos or 14 � pounds.
November 21st. We took Julian for his appointment at the �Noggin Clinic�. It�s a group appointment for 3-5 parents of babies with misshapen heads (known as plagiocephaly). After we saw a slide show and heard the dr talk a bit about plagiocephaly, each baby was then examined by the dr. The dr measures the baby�s head, and basically if the measurement from right-front to back-left is more than a centimeter different compared to the measurement from left-front to back-right, then the baby is a potential candidate for a special helmet. The other important thing is the baby�s age (corrected for gestational age, I asked!)---the baby has to be between 5 and 9 months old.
The first baby was only 3 mos old and deemed a little too young for a special helmet at this point, even though he did have an odd-shaped head. The dr told his parents to come back in 2 months if they were still concerned. The other two babies were girls who though completely unrelated to each other, were both born the same day---AND that day was also my birthday, I could hardly believe it! They were each almost 6 months old, and their head measurements were off enough that the dr gave them referrals for helmets.
Julian was seen last, and his head was lopsided by 1.5 centimeters, so we also got the referral for the helmet. His corrected age is 7 months so we still have time to correct his head shape, but we do need to do it soon. The dr said he sees a LOT of babies who were born so premature and develop plagiocephaly. They are more prone to it because their heads are still so very soft when they are born---normally they would still be in their amniotic sac where there is no exterior pressure on their forming head, but instead they are lying in an incubator, which can easily influence the shape of their growing head. By the time Julian came home from NICU, he had a very strong tendency to keep his head to the right, and his head was flattening a little on that side. As his head grew, the sheer weight of it tended to make it fall to the flattened side, and it got worse. Julian has been receiving physical therapy since May, and we have been trying to position him to help him turn his head to the left side instead. It�s very hard to make him stay that way, he wiggles in his sleep and soon his head rolls to the flatter right side.
Our physical therapist went to this appointment with us, and she found it very interesting. She talked to the dr for a few minutes about her work with Julian. He was pleased to learn that she does exercises with him to help him strengthen the muscles in the left side of his neck to make it easier for him to turn to the left---AND she does the exercises correctly for a baby. He said the some PTs do therapy with babies the same way they do adults and older children---but it has the opposite effect on a baby. An older child or adult can relax and let the PT manually stretch their muscles. But if you try that with a baby, the baby will push back against you, strengthening the wrong set of muscles. So to strengthen Julian�s left neck muscles, our PT gently pushes against the left side of his neck to get him to push back against her, thereby stretching the muscles on the right side of his neck! She also does other things with him to encourage him to turn his head on his own. He is getting better at turning his head to the left, but his head is still misshapen enough that he will be getting the special helmet. He will have to wear it for 23 hours a day for 2-6 weeks, and when he is done his head should look beautiful! :)
The next step is actually getting him fitted for the helmet and I am still waiting for the appointment time. I hope it is soon. I called our pediatrician who had to send a letter of necessity to the place that makes the helmets, and I got the usually answer that �they are working on it.� They have been saying this since the ped agreed in October to give us a referral. I told them that I had a �prescription� for a helmet that the noggin clinic dr had written out�I thought maybe it should go with the letter of necessity. They said if I wanted I could give it to them, but I made a photocopy before I dropped it off.
Wednesday, November 22nd. I was thinking this morning about what I am most thankful for this year, and well, I can sum it up in one word......JULIAN! I think back over the past year----his precipitous birth, his long NICU stay, his exciting home-coming, learning to live with him attached to an O2 tank for months (until we finally got rid of that, Yay!), our breastfeeding trials, countless drs appointments......and I look in his sweet little face and see his beautiful little smile......I just know I must be the luckiest woman alive! Especially when considering all the trials I went through before being blessed with Julian, all the heartache of losing 4 babies back-to-back in 2 1/2 years prior, it just makes having Julian so much more special. And to think we almost lost him too, but thankfully we didn't. Of course I know that God was watching over us, and I thank Him for blessing us with Julian. Ok, now I'm crying, but I really am so very thankful! What a year it's been!
I'm not forgetting my dear husband who drives me crazy, and my other two lovely boys who are growing up so fast too! We won't have any family visiting us this year; neither are we traveling to visit them. But that's ok, we can have a lovely Thanksgiving with just us. It will be Julian's first, so I will be sure to take pictures.
Monday, November 27th. I called my pediatrician�s office again to find out how the referral for the helmet was coming. They said they had just sent it to the helmet place. FINALLY! So I asked if I should call to make an appt, but they said no, I should wait for the helmet people to call me. The next day, Tuesday, the receptionist from the helmet place called. She said we really needed to get going on this to have Julian in a helmet before Christmas! Now that they had the referral from our dr, she needed to get a pre-authorization from our insurance. She also needed info from our physical therapist, so I gave her the phone number. She said that from all the info she had, we met all necessary criteria, and Medicaid should be able to give the pre-authorization within a week. We also needed to get Julian in for fitting within a week, so she scheduled that for Tuesday December 5th. One thing I was really impressed about, this lady did not wait around; if she needed certain info, authorization, whatever, she was on the phone and kept trying until she had what they needed! I told her I was so frustrated that it took my dr's office almost 6 weeks to get the letter of necessity and referral done! The receptionist said she hears that from a lot of frustrated parents. That is too bad, because there is a short time frame that you have to correct the baby�s head shape. And now we are cramming to get it done!
Tuesday, December 5th. I had tried calling yesterday to make sure the pre-authorization came through before our appt today, but the lady I needed to speak with was gone when I called. So I called again this morning, and she said she hadn�t heard back from Medicaid but she would put in another call. I asked her what we should do if the pre-authorization did not come in time, and she said she thought we should keep the appointment anyway. She was sure we met all criteria to get the authorization, and time was of essence here. I worried that Medicaid might refuse payment of today�s appt and she said, no they would not. The authorization had to be given before we received the finished helmet, and we would definitely have it by then. So Truman got out of work, and off we went to Lebanon, NH. The helmet place is called Willowbrook---it�s not actually part of the DHMC hospital. We got there quite early, so we had time to stop over at David�s House which is near the hospital. We wanted to drop off our yearly donation in person. I had already emailed with Dawn, the director, and she was expecting us, or so I thought. But when we got there, she was at lunch. We waited for a little while, then we left a note and went to our appt, saying we would come back after.
The appt was very interesting! They make a plaster cast of the baby�s head. They do the front, top and sides as one piece. Then they smear Vaseline on the back edges, before applying the back layer. This allows them to separate the back piece from the front piece even after it sets. Then they take it off and let it dry hard. The man who does this (I don�t know his title, he just introduced himself as Rob) said due to FDA regulations he no longer makes the actual helmets. He makes the cast then ships it to an FDA approved facility in Florida. They fill the cast with new plaster, to get an exact replica of the baby�s head. Then they make the special �DOC band� helmet that the baby will wear. They make the helmet the shape that we want the baby�s head to become. This means that where Julian has a flat spot, there will be some space for his head to grow out there to fill the space and round out his head shape.
It takes 2 weeks (10 business days) to get the DOC band helmet shipped back from Florida, then we will go back to see Rob. Rob will fit the helmet to Julian�s head and make any needed adjustments. He will also educate us on how to use it for Julian, how to clean it, etc. This all has to be done before Christmas, because Rob is away from Christmas to New Years. We will go back for follow-up on January 2nd. Depending on how Julian�s head is growing, we will then go back every 1-2 weeks for follow-ups, until Julian�s head is re-shaped the way we want it. Rob thinks about 6-8 weeks.
When Rob first asked me Julian�s age, I said he would be 11 mos on the 17th, and Rob said he was a little old for this treatment to work well. Then I explained that he was born 3 months premature, so Rob said that was better, and we should still be able to get good results. He said that more than 50% of the babies he treats for plagiocephaly were born premature. Julian�s case is not severe (he has seen worse), but it�s bad enough that we want to have it corrected. He looked carefully at Julian�s head and pointed out that his ears are even cockeyed---the right side of his whole head is pushed forward compared to the left side, so even his right ear is forward compared to the left! Rob is sure though that we can correct this, and Julian�s head will become symmetrical like it should be.
He said he would have liked to treat it a few months ago, it would be easier to correct in a shorter time. Well, I think so too---that�s why I was asking for the referral in September! Rob said that many parents complain about how difficult it is to get referrals for this treatment. Babies� heads are easiest to re-shape around 5 mos of age, but many insurance companies consider the procedure cosmetic, so they don�t want to cover it. Maybe technically it is cosmetic, but, gosh! It is significant, for crying out loud! This is a little person�s head we are talking about, and if not corrected as a baby, they�ll have to live with the weird shape for their entire life! But insurance wants you to try positioning, physical therapy, etc first, and by the time you�ve done a few months of that, the baby is getting older and you soon run out of time for the helmet treatment to work well. Maybe someday they will be convinced that early treatment is the best course, and many children will grow up and be thankful that they didn�t have to suffer self-esteem issues because of having a weird-shaped head!
After Julian�s appt at Willowbrook, we went back over to David�s House and saw Dawn. She was so happy to see us and see how big our little preemie has grown! We gave her our yearly donation check, which was pretty cool to hand-deliver. We also had a staff member take our picture with Dawn. Then to our surprise she gave us some toys, movies, coloring books and beanie babies for the kids! They have received donations of all these things and just love handing them out to kids! Julian got this really neat "taggie"---it's two pieces of fleece with various ribbon loops sewn around the edges---and he just loves putting those ribbons in his mouth!
Wednesday, December 6th. Rise, the organization who provides Early Interventions therapy for Julian has a yearly Christmas party and we were invited to attend along with all the other families who either receive services or work for Rise. Honor-roll students from Keene High School cooked and served the dinner. It was awesome! A student offered to help us with our kids. We all had a great time, and even Julian was very well-behaved!
Friday, December 8th. Julian had a pediatrician visit this morning. He weighs 14 lbs 10 ounces, and is 27 inches long. His head circumference is 43 � cm. He also got his second RSV shot and the second part of his flu shot. He cried a little with the second shot, but I think he did pretty well. :)
I was looking at him laying there on the table waiting for the dr. He still has a scar on his chest where he had a chest tube put in when his lung collapsed when he was a couple days old in the NICU. I was thinking how tiny he was then, and look how big he is now! He is more than 6 times his birth-weight, and he has almost doubled his length. He�s come a very long way! He will now sit unassisted for a short time. The other night at the Christmas party, our therapist was holding him, and suddenly he reached for me and yelled something that sounded very much like �Mama!�
Thursday, December 14th. I've been feeling frustrated that I can't seem to get my milk supply above approx 24 ounces per day. Some days I barely get 22 ounces, so 24 is definitely a good pumping day. The only reason I want to get more milk is that Julian often takes more than 24 ounces a day. Perhaps as many as 5 out of 7 days, he will take as much as 28 ounces a day, and sometimes he will even eat as much as 30 ounces! He hates solid foods, so solids have not yet replaced much if any milk. He has fragile lungs, so I feel it is very important that he have the benefit of breastmilk through the winter.
I have tried everything I can think of. Fenugreek seems to help me get the 24 as opposed to the 22 ounces. Blessed Thistle and Alfalfa are other recommended herbs, when used in combination with Fenugreek. I tried the combination of all three, but I must be allergic to either Alfalfa or Blessed Thistle, because it caused rectal bleeding. So I have to stick with just the Fenugreek. I try to eat plenty of protein and calcium-rich foods. I also try to drink enough. I pump 6-8 times a day, and 8 usually yields a slightly higher total than 6. So I tried adding in a couple extra pumpings to see if it increased my yield, but all I got was blood blisters on my nipples.
Finally I called the NICU LC to see what she thought about this. She told me that she thinks 24 ounces a day is fabulous! She said it is definitely enough to give Julian the health/immune benefits of breastmilk. She said I should be very proud that I am still pumping for Julian. Most 11 mo old babies are taking a fair amount of solids, so her best guess is that 24 ounces of breastmilk per day would probably be adequate. She said to keep offering solids and hopefully Julian will start to like them more. Also, healthy nursing babies are able to remove breastmilk more efficiently than a breastpump, so that could be a factor as well. But she was some impressed with my supply. I did feel better about it after talking to her. :)
Oh, she also suggested offering him up to 2 ounces of watered juice. I think I�ll try that and see what he does. I may try offering him some more finger-foods and see if he prefers them to pureed food. He did eat a couple of Gerber fruit puffs when I gave them to him last week.
December 15th. Julian is "talking" up a storm now. In addition to his vowel sounds, he is now using some consonants! He's been using the occasional "mmm" sound. But today, he very clearly said "dada". And he keeps saying it too, but usually a string of dadadadadadada. He also says "ba" and "ga" in his jabbering. Most of the time he is talking to himself. When he catches our eye, he stops jabbering and gives us a big gummy grin! He's just too cute! He still has no teeth, but he is drooling much more than before. He also blows bubbles with his drool. :)
December 17th. We gave Julian a 2-inch piece of plain Pizza crust (with no topping or sauce on it) and he LOVED it! I told his therapist, and she said, oh yes, that's a good thing to give him. She suggested that we could cut off sections of crust and put them in a bag in the freezer so we can pull one out later and give it to him. They thaw quickly, and they feel good to the gums when cold! Guess I need to buy more pizza! LOL
A few days later I offered Julian some white grape juice diluted half and half with water. He LOVED it. I suppose it won�t hurt to give him some regularly. I have been giving him more of the Gerber fruit puffs and he really enjoys them.
Friday, December 22nd. Today was pretty busy. Truman took a vacation day with FMLA (family medical leave) concurrent because we were taking Julian to get his helmet. Our appt was in the afternoon, but I could not find someone to take care of Eric after school. So we decided to get him out of school at noon and take him with us. In the morning, we put the kids on the bus (Jamie goes half day kindergarten), then Truman took the van to get his new remote entry key programmed. Our van locks are all messed up, and they tried to fix it last Tuesday, but it worked once and quit. So we have to manually unlock the doors or use the remote key---they won't unlock when you put the van in park or shut off the engine, but they should. Anyway, Truman got his new remote because his old one was bad too, and he bought bread at the outlet store on his way home.
Then Jamie came home from kindergarten, we ate an early lunch, and Truman went to get Eric from school. On our way to the orthotics place (where we get the helmet) we made a few stops because we left early enough. We even stopped by David's House to see the director who is a very nice friendly lady named Dawn. The kids played in the playroom (with David's toys, as they call them) for a while and we visited.
We had previously given our donation to the yearly Christmas fund drive for David's House, but we were talking about the KIXX radio station who's DJs work so hard on this fund-drive. To me it is one of the most amazing fund-drives and it's incredible how generous people are, from big businesses and their employees to small children who donate their allowances! When we used to live within the broadcast area, I would keep the radio on and listen in as much as I could. Now we live too far away, but the cause is still very close to my heart! We started donating in Ezra John's memory after we lost him (our first baby), and each time we have a baby, whether an angel baby or a living baby, we add more to our donation amount. I think of it as a way to remember our lost babies, and celebrate our living children! We NEVER dreamed that one day we would use David's House ourselves! But I have always believed it is certainly a charity very much worth donating to!
So anyway, Dawn suggested that if we had time, we should stop in and say hi to the DJ's, who were currently broadcasting from an RV in the Wal-Mart parking lot in West Lebanon. We still had to go to Julian's appt, but we had thought about stopping at a Wal-Mart to look for a couple things on our way home.
We got Julian's helmet, but the orthotics guy (I don't know his proper title, he just introduces himself as Rob) said we could wait until the morning to start Julian wearing it. You do it for short times at first and gradually increase the time so he gets used to it. So then we decided to go to Wal-Mart in West Leb. Oh, I almost forgot---before we left David's House, Dawn put two small envelopes in my hand. Our name was hand-written on the front of each envelope, so later in the car I opened them. They were gifts cards to Wal-Mart! OMG! I just could not believe it! The last time we visited David's House---the day we took Julian a few weeks ago to get the cast made for his helmet---Dawn had given us toys and things for the kids (area businesses and some individuals donate the toys and deliver them to David's House, so then they give them out to families who stay there).
On the way to Wal-Mart, we had the radio on and were listening to the DJ's thanking various people who brought in more donations for the fund drive. Everyone gets so into the sprit of it, it just gets so exciting, as they give updated totals. This year's goal was $85,000, but the last few yrs they generally top $100,000. By 5 pm, they were at $98,000+, and the drive was scheduled to end at 7 pm. I had no doubt that they would reach $100,000 or more. We parked and went to the RV parked there in front of Wal-Mart. There were a few people inside, and soon a whole lot more people came in. Some had money to give, and some were people who were helping the DJ's with the broadcasting. Even Dawn came in, after she finished work for the day at David's House. One lady with a mic asked Eric and Jamie who they were. They had fun saying their names over the air. The lady asked if they were giving money to David's House; they said yes. I quickly explained that we had already taken our donation to David's House and given it there in person, and Dawn pipes up, "I will vouch for them!" We had just stopped in to say hello. :)
An older gentleman had come in while we were there. He had white hair, and a limp so he was using one crutch. I soon learned that he was Dick Cyr, the founder of David's House! OMG! I just had to thank him personally for David's House. I told him we had stayed there when Julian was born premature and was in the NICU last winter/spring. It was just an incredible gift to have those few moments to talk to him!!!
There were more people constantly coming into the RV, so we decided to go do our shopping. On our way home, we had the radio on, and we heard them saying that if we raised something like $136,980, then the grand total raised since this fund-drive was started 17 years ago would reach the $1 million mark! At first no one dared think we would reach that this year, but as the donations kept pouring in, it began to look possible! At 6:30 pm they had $135,000+! We were glued to the radio, excitement mounting! By 6:50 pm, with 10 minutes left for the fund-drive, they reached $138,000+!!!!! OMG! The people of the area should be just SO PROUD of themselves! This is just incredible!!! It is SO exciting to be a part of this! What an honor! I get chills every time I think of it. (Footnote: Typically donations continue to trickle in for a few more weeks after Christmas, so the final total for the fund drive was $142,070!!!)
I really want to write a letter to Dick Cyr. I'd like to tell him our story, which I didn't have the chance to go into when I saw him. But I also want to tell him how honored I felt to be able to thank him personally for David�s House.
Sunday, we went to church and they had a very special Christmas music program. I checked our mailbox at church and we were totally shocked to find 2 gift cards in there! One was for Wal-Mart and one was for Price Chopper grocery store! The unbelievable thing is that we were planning to give a monetary gift to the church, but I had not yet sent the check because I discovered I had made a miscalculation in our check-book, and there was no longer enough money to cover the check I wanted to give the church. so while we were wanting to give to them, they give to us instead. :-p)) Well, we can still give them a check after New Years. :)
In the evening, we let Eric and Jamie open their new Thomas pj's and one other gift. I still had not finished making Julian's photo ornament---the picture I printed out for it was too large. So I had to go find a different one. But I don't want to print only one small picture on a full-size sheet of photo paper, so I had to decide on other pictures I could print out for Julian's scrap book at the same time. In the end I stayed up late again.
So Christmas morning, the kids finally woke us at 9 am, asking WHEN they could PLEASE start opening more gifts! LOL I got Julian dressed in a cute red outfit that says "Baby's 1st Christmas" on the collar. I took pictures of him, and had Truman take a few of me holding him in front of the Christmas tree. I also took some pics of him opening a gift---he got a set of music-making toys called "bug tunes"---a caterpillar xylophone, a bee tambourine, a dragonfly rattle, and some butterfly clackers. He really loves the xylophone! We put him in his highchair and let him bang away for a while.
The older kids had a ball opening their gifts. We would let them open some, then play with them for a while before opening more, so we spread it out all day. Julian actually did not open all of his gifts yet. He took a long nap, and we'll let him open more tomorrow. The older kids did really well---they got more Thomas toys and movies; they each got a Mack truck from the CARS movie and a KITT car from the Knight Rider TV series; and they got puzzles, games, coloring stuff, and clothing. Truman and I opened some things the kids had made for us in school---Jamie made a calendar with hand-print pictures for each month (SO cool!) and Eric made some ornaments for us with fancy paper and his picture. At one point Julian somehow got hold of one of Jamie's cards and sucked on all the edges---oops!
For Christmas dinner we had ham steaks, mashed potatoes, baby peas and onions, plus pickles and rolls on the side. Of course we had my home-made apple/raisin pie with whipped cream for dessert. Everything was delicious, but I think I actually do more cooking on holidays than I do most normal days! I asked my husband WHEN I get A DAY OFF! He gets 5 days off for the Christmas holiday, but I still have to do everything I normally do and then some. Yep, I even washed laundry today, but I did not fold it or put it away. :P
Tuesday, we let Julian open his gifts from our August2005babies gift exchange. He got a cute Phillies onesie and an awesome snowsuit! Our neighbor across the street stopped over for an hour and I gave her the 8-inch apple pie I made for them.
Wednesday, I took some pics of the 3 kids in front of the Christmas tree. I tried to do it Tuesday night, but they weren't cooperative. :P they were much better in the morning, mainly because Julian was more smiley so I didn't have to try 20 times to get him smiling while the other two lost interest and started making faces or looking off the wrong direction. We let Julian open another couple gifts---some sleepers and a set of soft block/books. At the rate we are going, he might get all his gifts open by the weekend! LOL
Thursday. Julian is now wearing his helmet full-time (23 hrs a day). He seems to tolerate it pretty well, but I am making an effort to be sure he is comfortable when he lays down with it on---it appears to me that it bends his neck forward, so I put a folded cloth behind his neck and shoulders. We helped Julian open two more gifts---he got a Chicco shape sorter, a board book, and a couple outfits. He has one more big item under the tree which he can open tomorrow.
Friday, I took the boys in to our pediatrician for their well check-ups. The dentist appointment I had scheduled for them this week got rescheduled twice by the idiot dentist office, which I am not happy about, but what can you do? Quit going to the dentist I guess, since I am really not happy with any local dentist we've tried, and it is too far to drive back and see the dentist where we used to live though I think he's great! Anyway, I talked to our pediatrician about getting the neurological testing done on the boys as recommended by the development specialist---they are both old enough now to test, and at the very least I want to rule out some things if possible. I mentioned Eric's difficulties with staying on task in school, and Jamie's issues of chewing on things like his clothes and wood (and ruining those things by taking actual bites out of them---ugh). Our ped agrees that we should get further assessment done, so now I'm waiting for appointment times for it.
Julian got to open his last present---a Fisher Price Peek-A-Blocks train! It is one really cool toy, and his brothers love to help him play with it! LOL. I have more peek-a-blocks saved for his birthday. Shhhh!
Saturday, it snowed---FINALLY! The kids were so excited!
Sunday. The older kids went out to play in the snow for a while. We had been given a turkey for Christmas, but had not yet cooked it because we had ham for Christmas. So today, I roasted the turkey with stuffing, and fixed french green beans and sweetened canned yams to go with it. That turkey was one big bird, over 25 pounds!---I have enough meat left for at least 10 meals! And that doesn't count the soup broth from boiling down the bones! Between the turkey and the deer meat and trout we have in the freezer, we won't need to buy meat for quite a while!
New Years Day. The weather was lousy with freezing rain and ice so we stayed home. We stayed up late last night, but it was because Truman was watching Hee Haw. We did not do any special celebrating or anything. The only alcohol we had was a wine cooler at dinner with the turkey. We slept late again this morning. I am finding that my milk supply seems to be rebounding a bit. I think because I am catching up a bit on sleep---I have gotten naps in the last few afternoons as well. But this afternoon I made a Gingerbread Train with the kids. They had asked for a Gingerbread House, and I bought a kit for it, knowing I would never manage the time to make it from scratch. Then I found the kit for the Gingerbread Train and knowing how much they love trains I got that too. The day before Christmas, a friend gave us a gingerbread house she made, so we ate that. I told the kids we could make our own after we first ate up all the other desserts and sweet breads we had around. So today I told them they had a choice to make the Gingerbread Train first or the House first. They agreed on the train. I took some pictures.
Tuesday. Truman only worked half a day, because we had to take Julian for his follow-up at 1:30 pm with the Orthotics guy in Lebanon. Fortunately, the freezing rain had moved out and the weather was better---which meant the roads were better for our trip. Truman came home at 11 am and wouldn't you know, the orthotics office then called asking to postpone our appt to 3:30 instead of 1:30. Ok, we could still do that. Since the kids were still home on vacation I didn't have to worry about arrangements for them.
Julian's appointment went well---the orthotics guy (he's not a dr, so I don't know what else to call him) was happy with how Julian's head looks. He told us how to watch for signs of any tightness as Julian's head grows, then we should call for our next appt.
So all in all it's been a very BUSY 10 days! And I did NOT get anything done on the addition or the siding either. :P However, I have made a list of goals for 2007---it includes work on the addition as well as redoing our budget and getting caught up on my WIC work! All to fit in around caring for Julian and the rest of the family of course! Oh, and I can't forget, Julian's BIRTHDAY is in TWO WEEKS!
January 4th. The NH Chronicle is on a local station WMUR weekday evenings at 7:30pm (I think, lol). Anyway, they are doing a story on David's House.....AND our family is invited to go to the interview as people who have benefited from David's House! The interview is Monday the 8th at 10 am. Truman asked his boss for the day off so he could go to this, and his boss said, "Sure, go for it!" This is SO exciting!!!
January 6th. Julian's new trick is to roll over ONTO his tummy---and then SCREAM because he is so mad about being there! LOL Usually he is in his co-sleeper or playpen, and he doesn't have quite enough room to roll himself back over because he gets hung up against the side or his blanket or his toys! LOL I think his helmet makes his head a little heavier, so then it's hard to hold his head up while on his tummy and he gets even more upset!
I think I need to get his crib set up, because he's showing interest in pulling up on the co-sleeper now. He will have more room in the crib to roll over both ways. But I need to MAKE room for setting up the crib! That means cleaning out my sewing/craft room. I guess I won't be sewing Julian's blanket yet. :P
I so NEED to finish our house addition! We are desperate for the space.
Monday, January 8th. We went to David's House for the NH Chronicle interview this morning. The weather was poor, there had been freezing rain over-night, although the temps were rising above freezing through the morning; so we left early to leave plenty of time to drive safely. We got to David's House quite early, around 9:15, but the interview was scheduled for 10 am. The kids played for a while, and we drank coffee and tea while visiting with Dawn the director. Dick Cyr, the founder of David's House, was also there. I had written a letter to him, telling our story, so I gave it to him. He read it and was crying before he reached the end. Then he shook our hands and thanked us.
The interview was great. Paige Kornblue was the reporter and Chris was the cameraman. They set up in the second living room, so it was homey and comfortable. We sat on the sofa, and Paige asked questions and encouraged us to tell about what David's House means to us. The kids were funny, I think they were a little nervous, but they did very well. Julian was getting tired, and I took off his helmet to give him a little break from it; on the whole he did very well too. The boys announced that they were hungry, so we took a break and got them a snack from the kitchen. Paige and Chris interviewed Dick Cyr. Then the cameraman wanted to tape the kids playing in the playroom; they were really excited about that so they went downstairs for that. Meanwhile, I took Julian to the van so he could relax in a quieter place. He drank some milk and fell asleep while I pumped. I tried to carry him back inside while asleep, but he woke up again. He did seem fresher after his cat-nap though.
Chris went to get some video of some to the rooms at David's House. Paige played with Eric and Jamie for a little bit. And we sat around chatting, mostly just getting to know one another a little. We told Paige more details of our story, and she asked if we'd be willing to email her some photos of Julian in the ICN. We said "of course" and she gave me her card. She also agreed to let us know the air-date of the story, because we definitely want to tape it!
We were having such a great time that it was hard to leave! But we had to get to Keene because the boys needed booster shots and they had dentist appointments too! Julian was still tired so he slept almost the entire trip home!
January 10th, 2007. Julian will be one year old in one week! Yikes! Where did the time go? It hardly seems like nearly a year has passed already. Julian has come a long way, that's for sure. He was born at 2 pounds 5 ounces, and now he is over 15 pounds!
Today we took Julian for a scheduled appointment with the pediatric development specialists at DHMC. This is a regular follow-up that they do with babies who were preemies, just to see how they are doing developmentally. Julian's prematurity will explain a lot of his delays (his development is more like that of an 8-9 month old rather than a 12 mo old, which is to be expected), but I feel that this appointment is doubly important because of family history of developmental delays in all of my kids.
The pediatrician and the OT both evaluate the baby. The OT plays with the baby to see what things he can do, while the ped asks me a lot of questions about him. Julian is fairly laid back, and willing to let new people hold him and play with him. But he also "checks in" with me, turning to see where I am and then he'll turn back to the person who has him.
Julian sits unassisted, but he still throws himself backwards when he gets tired of sitting, which is often. We are trying to teach him to lower himself to the side using his arm, so his head won't crash onto anything. (His helmet is not intended to be a crash helmet!) Julian's newest accomplishment is to roll onto his tummy on purpose, but he soon tires of holding his head up (the helmet makes it heavier) and wants to roll back to his back. He can roll back sometimes, but other times he gets caught on his arm or a toy or the side of his co-sleeper, so then he screams about it! He is not creeping or crawling yet. He doesn't even get up on his knees, but that will come, I'm sure.
Julian is very alert and is constantly taking every thing in. He puts everything in his mouth, especially his toes. He jabbers and coos and grunts. And he flirted non-stop with the specialists. LOL
We talked about how Julian doesn't like solids much at all, and discussed some new things to try. He does seem interested in finger-feeding although a large portion of such food still ends up mushed in his lap after he's sucked on it a bit. Maybe he will like pureed food better if he can dip something like a piece of hard bagel into it then suck off the puree. Or we can try those mesh things that you can put a piece of fruit in for babies to suck on---I have some, just need to locate them! I may try giving him some soft-cooked baby peas, and see what he does with them. At this point, solid food is more about Julian learning about new tastes and textures, and less about meeting his nutritional needs. The dr was *very impressed* that I am still pumping breastmilk for him! He takes a little more than I can pump each day, so we are using up our freezer stash of breastmilk. When the freezer stash runs out, I plan to supplement with cows milk, but I also plan to pump until Julian is 15 mos old. I did tell the dr about the oral assessment we had for Julian in October.
I remembered that one of the NICU drs had said we should probably have genetic testing done on Julian after a yr old. We had such testing done on the other boys, and they were found to have a small deletion in their Y chromosome. Truman was then tested and found to have the same deletion. It is not known if this deletion has any bearing on their developmental delays. Jamie is actually no longer coded special ed for speech, although Eric still is. I think this shows that with the help of their therapists, they can overcome at least some of their issues. However we still have some other concerns about Eric and Jamie in areas besides speech so we are pursuing further testing in other areas.
I have also been made aware that Truman has signs of mental delay, although it is not enough to prevent him for holding down a job and living a normal life. It is more of a cognitive thing---he has trouble with concepts, changes from what he is used to, things like that. For Truman, everything has to be very black and white, set in stone, no gray area or deviation. Even the way he talks is "always" and "never", like there is no middle ground. This shows a lot in his parenting, although I do see it in his whole approach to life. I at first thought this is just his personality, but other people (professionals like doctors and counselors) who have gotten to know him believe that it's more than just personality.
Anyway, back to Julian. The developmental pediatrician is going to talk with the geneticist and we will be getting testing done on Julian at some point this coming year. And the dev. ped. wants to see Julian again in 9 mos. She will write a report on today's visit and send me a copy; the OT will also write a report. I feel that they were pleased with Julian's progress, but I will be interested in reading the reports to see if they mention anything I did not catch in today's eval. The appt is very busy, with one dr talking to me and the other working with Julian simultaneously.
Now I have to get going and decide what we are doing for Julian's birthday. :)
Tuesday, January 16th. I moved Julian to his crib ...and it was with great misgivings; but he is really getting too big for his co-sleeper. He wants to roll over at night, but in the co-sleeper he can't turn completely from back to tummy or vice versa without getting stuck on the side of his co-sleeper; then he gets upset. So I moved stuff around and made space and set up his crib. It can't fit in our bedroom, so it's in my junk room.
I was going to try him napping in it first, but a couple nights ago, he kept crying out in his sleep. He wasn't hungry and I can't find anything wrong, except that he must have tried to roll over. After being woken up about 4 times in 3 hrs, I finally just put him in the crib in the other room with the door open, and I didn't hear him for nearly 4 hrs! He also took a long nap in the crib yesterday, and he seems more comfortable.
If you are wondering, no he does not sleep through the night yet. He does not eat more than about 3 ounces of milk at one time either. It doesn't really bother me to wake 1-2 times a night to feed him because I have his breastmilk right nearby and we usually both fall back asleep quickly.
I really miss having him next to me though! He can't flirt with me while I pump here in my room. And I didn't sleep so well last night. I kept worrying if he was ok. Even though I had set up a monitor on low volume so I can hear him if he really cries (but not just a squeak), because he still eats some during the night. He woke me around 12:30 and 4:30, and I gave him a bottle each time. But I could not go back to sleep after 4:30 am! Of course I am yawning now, but Eric has school today---starting 2 hrs late due to the ice storm we had yesterday. Jamie's Kindergarten was cancelled. Maybe I will catch a nap today, but often I can't. :P
I really wish our addition was finished. Our new room will be bigger. And we really need the playroom too. I just don't have enough time to really work on it though, and I am disgusted with how easily stuff just gets dumped out there so it's really cluttered which makes working almost impossible! I feel caught in a whirlpool, just going round and round and getting no where. Ugh!
Well, my little man will ONE YEAR OLD tomorrow!!!
