What a way to start the day----I'm already feeling rushed to get ready for work, the kids ready for school etc. And it is about -1 degrees outside! Ugh! Well, on the bright side, Julian gets to wear his fabulous new snowsuit today! Woohoo! And thank you Jenn and Bryan!
In the afternoon, I made Julian's cake. I used a vegan recipe because I am not introducing eggs to him for quite a while yet. Since he was a preemie, I am adjusting his age for most things, and that includes most food. I am waiting on giving him eggs, especially because my oldest reacted badly to eggs even though I waited until he was 1 yr old to introduce them. My oldest did outgrow the egg sensitivity, but I am not going to give Julian eggs yet, and that includes cake made with eggs! I did use cow milk in the cake, but I plan to introduce cow milk soon anyway. Cow milk will not replace breastmilk at this time, but it will be an addition to his diet.
For dinner we had deer-burgers, french fries, and steamed peas and carrots. I put some of the cooked veggies into a mesh feeder for him, but he didn't really want to work on that; so then I gave him a few pieces to finger feed. He was interested in tasting them, but generally pushed them back out with his tongue, before stuffing more into his mouth. LOL He did eat a french fry or two, but I did not give him meat.
I took a pumping break and gave Julian one present---a Noah's Ark Peek-a-block set. Then we gave Julian his cake after that. He loved playing pat-a-cake with his cake. He sampled the frosting and tried a little bite of cake, but it seemed that he didn't care for the texture and spit it out! After he had played with the top of his 5-inch two layer cake, we ate the bottom section. I thought this cake was a bit bland, but it was intentional to have as few ingredients as possible because it was Julian's cake. However, we put the strawberries on our cake....and that was a winner!
Later after he had his bottle of breastmilk we let Julian open his other birthday present, a set of circus Peek-a-blocks that goes interchangeably with the Peek-a-block train he got for Christmas. He had lots of fun with these--actually ALL the kids did! I'll be posting some pics later on. At once point, Truman was watching Julian while I did the dishes, but Julian flipped backwards from sitting and rolled right off the bed! He hit the back of his head on the handle of Truman's flashlight that was lying on the floor, and got a bit of a goose-egg. It all happened so fast. Truman felt horrible, but this can happen with even the best parents. Julian did cry immediately, which is a good sign.
Many friends sent birthday greetings for Julian! And kind words for me too! I can feel the love as I read through the emails today. :) I was going to print them all for Julian's memory box, but Yahoo adds a lot of ad stuff and it makes a mess. So instead I am copy and pasting each message (without all the Yahoo junk) to a word document, and I'm including who each message is from and the date. Then I can print the word doc for Julian's book!
Thursday morning it was obvious that Julian was not feeling well. He kept throwing up, and it wasn't just spit-up---this was real retching and vomiting. He was very fussy and irritable all day. The only good thing was that I was able to freeze 12 ounces of breastmilk that he didn't eat! But I would actually prefer him to feel well and eat plenty to grow well.
I worried a bit that his vomiting could be connected to his falling and bumping his head. But I did a little research online and concluded that there was no need to rush to the ER. The best thing to do is watch the baby, and that's probably all they'd do there. Also contributing to my decision was 1) the fact that we had a dr appt already scheduled for Friday, so she could check him then if I was still worried, and 2) Jamie had been sick the previous weekend with an upset tummy and fever and headache, so this was likely the same bug, although Julian was not feverish until the evening. So why make an extra trip in to the hospital where there are plenty of other germs?
Julian did sleep quite a bit Thursday, and I worked on eBay listings while pumping and during his naps. I had been cleaning up my junk room to make space for his crib, and found unopened packages of bottles, milk bags, and more that I don't think I'll be using, so why not sell them if I can? I also have some girls clothing, much of it NWT that I bought on clearance a few yrs ago---I didn't get them listed yet, but it's one of my projects for this spring (it's mostly dresses anyway so better for warmer weather.)
Friday was Julian's 1 yr check-up. Although, because he was vomiting all day yesterday and today he's running a low-grade fever, it became a sick visit too. The dr agreed with me that his upset tummy and fever were likely NOT from hitting his head, just a coincidence, and she was happy with how I handled the situation. He did get his RSV shot, but we agreed to wait until next month to get the rest of his 12 mo shots---he has to go back for another RSV shot (given monthly 5-6 times) so we can do the other shots then as well.
He now weighs 15 pounds 10 ounces! His length is 27.5 inches. His head circumference is 44 cm. Other than being a little under the weather today, he's doing very well. His ears looked great and his lungs sounded normal for him---which is with a slight wheeze, but not bad enough to need a breathing treatment. He was very happy to sit nearly naked with just a diaper on while the dr examined him. We surmised that he liked cooling off since he was feverish. :) Oh, and he also pee-christened himself, the scale, and the floor when we weighed him, so we know he is hydrated in spite of being sick!
After his RSV shot, we had to get a finger stick so they can check his iron and do his lead screen. He was exhausted by the time we got home and took a long well-deserved nap!
I had just barely gotten the reports from his assessment at DHMC last week, so late Friday night I finally got some time to read them. I had left that appointment feeling pretty good about how Julian is doing, but the reports were a little less positive than I was. The drs both say that he is further delayed than what is explained by his prematurity. If his delay were just due to prematurity, then he should act about 9 mos old. However, he acts at a 6 month level. So it's logical to assume that he is following along with the family history of developmental delays for other reasons. I have mixed feelings about this. I was hoping that he might turn out to be my normal child, but OTOH, I was prepared that he might have similar issues, especially with speech. At this stage, I did think that he was still within normal range of development, although at the lower end of normal. For example, he has mastered sitting unassisted at a corrected age of 7 mos 3 wks, and that is still WNL. I don't expect him to cruise or walk yet, though he is working on trying to crawl now. Again, according to WHO charts, this is still well within the normal range, even if we did not correct his age for prematurity. I guess the real difference is that the evaluations done by the specialists at DHMC is more specific and they may use tighter parameters when determining if development is "normal" or "delayed".
On, the bright side, I do get to enjoy this baby stage a bit longer than most parents do, and that's cool because the baby stage goes by all too fast! :) I am so loving having a baby around. I don't know if we will have another one. The drs advise against it, but we just aren't ready to close the door on it. Truman won't let me get rid of all the out-grown baby clothes just yet, although I did donate ones I really don't think I would use again. One thing is for sure, I MUST finish the addition before we decide to have another. If getting rid of all your baby clothes is a great way to get pg again, I ought to keep mine as a back-up for birth control---LOL
Saturday we spent the day doing grocery shopping and a few other stops such as one at the bank. We had to deposit the $5 check that Truman's parents sent for Julian---we put it into his savings. It came several days late, but at least it came. They sent money to the older boys for their birthdays and we thought that they had either forgotten or were ignoring Julian. Truman is very upset with his parents because they refused to acknowledge Julian for a very long time. We sent them a birth announcement, and later mailed them portrait pictures, but they never said a thing to us. At Christmas time, they did finally mention him in the Christmas card they sent, along with a $30 check that was written out to Eric, Jamie, and Julian. Not that I care about the money---it would be nice if they could act decent and show more interest in their grandchildren. After all, they begged us to provide a Howard grandson, since Truman was the only male left to carry on the family name. We've had three living boys now, so you'd think they'd be super happy! But then again, maybe all the boys are to them is a way to keep their branch of the Howard line going. Maybe they really don't see them as little people worthy of their grandparents love and attention. Our kids don't understand who they are, because they are not at all like my parents *who are involved with them as grandparents*. It's sad really, but long ago, I came to terms with the fact that Truman's parents are not like my parents, and we can't change that. It's their loss really, my kids can still be happy well-rounded people without them in our lives---in fact that may be better so the kids don't learn to act the pathetic way they do. I know it's easier for me to deal with this than it is for Truman.
So anyway, Saturday was a long busy day, but Julian was feeling a whole lot better
January 26th. Julian is not yet crawling, but he gets his knees under him and rocks. When he tries to move forward, he slides down onto his tummy again. He loves his crib because he has so much room in there to practice trying to get up and crawl.
January 29th. Julian has just started scooting himself backwards, on his tummy and hands. Not really crawling, but at least he is in motion! LOL Today, I just caught him as he scooted off the bed feet-first!
January 30th. Julian saw the respiratory dr again. She is very pleased with how well he is doing.
January 31, 2007. Julian's first tooth broke through his gum today! It�s on his bottom jaw, the right center one. A couple weeks ago, at his 1 yr check up, we could see the white line in his gum where the tooth was, but it had not broken through until today! I have been checking his gums daily, and this morning when I put my finger there on his gum, he hollered at me! I could feel a bump there that hadn't been there, so I knew it must be almost to break through. I checked again this afternoon, and it was through, I could feel the sharp edge! He's been pretty good-natured about the teething experience. I mean he chews on everything he can get into his mouth, but that is to be expected. I would not say he has been overly cranky or anything. I have not used any teething remedies or Tylenol for him either.
I was wondering when he would get teeth, because his older brothers both got theirs around 4 mos old! They take after Truman who got teeth early, but Julian decided to take after me---what a good little boy! Moms says I got my first tooth around 10 mos old, so Julian is just about right on track....his corrected age is about 9.5 mos. :)
The story that NH Chronicle did on David's House aired tonight at 7:30 pm. We were interviewed for part of this story. I was on pins and needles to see how it turned out! The story turned out just GREAT!!!! We did tape it with the VCR, but we will also be getting a DVD of it from Chronicle. :)
February 1st. I finally found a girl who I can hire as a mother's helper on a regular basis! She can come most every week. She is 16 and home-schooled, so her schedule is flexible. I am having her come for 3 hrs one day a week. She comes early afternoon and takes care of Jamie and Julian so I can focus on work in the addition for those 3 hrs. I am currently designing and building the closet in our new bedroom, and it has built-in shelves in it---lots of shelves!
Tuesday, February 6th. After Julian's 1 yr check-up on January 19th, I finally received and had a chance to review all the various reports on the assessments we had done on Julian. There were the reports from the developmental pediatrician and OT who assessed him in a joint appointment. Then there were the reports from the SLP and the nutritionist who saw him back in October to do the oral assessment I wanted done---I had to ask again for these reports and finally received copies by the end of January!
As I read the reports, I was a little disturbed to find that these professionals indicate that Julian is NOT doing as well as we would expect. Of course, I have to remember that I am looking at him from the point of view of being his mother who nearly lost him at birth, so I think he is doing famously now! But when the various professionals asses him, they find things that concern them, things that we should try to do something about.
1) The developmental Pedi noted that in general Julian is further delayed developmentally than his prematurity accounts for. At one yr of age, he acts at a 6 mo level, rather than the 9 mo level of his corrected age (the age he would be if born full-term). Family history of delay will seem to account for the further delays, so she recommends that he continue with Early Intervention therapy as we have been doing. Ok, not really a big deal there. But she did make a few suggestions for getting Julian to eat more solids. And she also said he really needs his vitamin supplement since he takes so few solids. When I told her that it is very hard to get Julian to take his vitamins (what he does not spit out often makes his tummy upset), she suggested giving them with an ounce of white grape juice, so I'll try that.
The OT noted the same global delay that the Pedi did. She also noted that Julian has a disorganized suck, and suggested trying a faster bottle nipple. I did try that, but I thought he choked more on the faster flow. She then gave more suggestions for finger feeding since he seems less resistant to finger feeding than spoon feeding.
2) Then I got the report from the nutritionist. That was the one that really threw me. Basically it said that breastmilk alone was no longer sufficient nutrition for Julian. She said his fluid intake was enough, but he needed more protein and calories, plus other vitamins and minerals that babies normally get from solid foods at this point. Now I am a CLC, and I am sold on the benefits of breastmilk (which is exactly why I am still pumping for Julian), so I find it hard to believe that breastmilk is no longer enough nutrition for him! Realize too that this report is from a visit done 3 mos ago, when Julian was 9 mos old---and also when we had just introduced solids to him. I think we should correct his age for prematurity when it comes to feeding, and this is why I waited until he was 9 mos (6 mos corrected age) to start solids. This would give his gut adequate time to mature. My belief (based on research) is that Breastmilk IS adequate nutrition for the first year, and solids are just to give a baby some exposure to other foods and give them oral experience with tastes, textures, and chewing. I found it hard to believe that if my baby isn't taking solids at 9 months, he is somehow being deprived of something ESSENTIAL to his overall nutrition!
But when I talked with the nutritionist on the phone recently, she was even more concerned that Julian was still not taking much solid food (he is now a yr old). She gave me some more suggestions for ways to encourage Julian to try more foods. (Now my mind is spinning with all the suggestions I'm getting, and Julian still doesn't want to eat any better! :P). She also strongly recommended that he should have his breastmilk fortified like we did in the early months when he couldn't tolerate much milk volume. She also insisted that it was vital that he get a complete vitamin/mineral supplement with zinc and folic acid. Apparently breastmilk doesn't have enough of those for a baby who is 1 yr old. She said that most 1 yr olds are eating enough solids to get those nutrients, so it is a problem that Julian doesn't take much solid food. This nutritionist is also an IBCLC and a respected member of the NH BFing Task Force in my state, so I guess she should know what she's talking about. It just goes against my gut---how can Breastmilk be deficient in any way???
3) And finally I got the report from the SLP who also saw Julian when he was 9 mos old. She had noted his tongue thrust. She also taught me a technique she calls chin support, which is supposed to help Julian suck more deeply and effectively. However, the deeper sucking increased his problems with choking on his milk. It's like he loses his suck/swallow/breathe pattern, and begins to cough and splutter---the disorganized suck noted by the OT recently. He already does this routinely, but I thought the chin support made it worse, so I did not push it.
The SLP had said at the time she was here that she believed that Julian had failed to master breastfeeding due to his breathing issues. A baby has to coordinate breathing and eating. If they feel they cannot, they will choose breathing and refuse eating. However, Julian figured out early on that if he sucked shallowly, he could better control the milk flow and still maintain his breathing. He was getting both breast and bottles at the time. The problem with his sucking pattern of choice is that though it works with a bottle, it is not effective for removing milk from the breast. It appears that he finally figured out that he was therefore wasting his time at the breast, and then he began refusing the breast altogether. If I had known about chin support back then, I possibly could have taught him to suck at the breast more efficiently, but if he could not maintain his breathing, he likely would have stopped eating at all. This is the answer I needed as to why Julian was unable to breastfeed.
The one other thing the SLP mentioned at her October visit was that Julian probably should continue on Pepcid. He had been on it for reflux, but we had stopped it when we thought he no longer seemed bothered by reflux. The SLP insisted that he could still have problems due to reflux, and she thought he would be better off still taking meds for it. I had asked our dr about that, and she called in a new prescription for him since he had grown and needed a new dosage. We gave it once daily or as needed.
When I spoke with the SLP recently, I told her that we had not made much progress with getting Julian to eat solids. She was concerned about that, and felt that he really should be on more reflux meds, twice daily rather than as needed. She said that many times she sees kids with feeding disorders because they have reflux and eating hurts them. Even if they don't actually spit up, they can have reflux irritating their esophagus, and this can contribute to food aversions. As for all the suggestions I have been given to try convincing Julian to eat more....she said none of that will help if Julian knows that eating is uncomfortable. He still loves his bottles, but she says that is because refluxed breastmilk is less irritating than most other foods. I guess that would make sense.
4) We also took Julian for a follow-up with the respiratory dr on January 30th. She is generally pleased with how well Julian is doing. She's happy with his growth---for his corrected age he is continuing right above the 5th percentile. His lungs are doing pretty well although there is still that slight wheeze he's always had. When I mentioned that he doesn't take much solid food, she said," well keep offering and some day he'll get it!" She was quite impressed that I am still pumping milk and she commented that Julian is a very lucky baby to be still getting breastmilk! (She is very supportive of BFing, but she rarely sees a mom exclusively PUMP breastmilk for as long as I have!)
Regardless of what all the assessments and reports and doctors have to say, the fact is that getting Julian to eat solids is definitely a challenge! I have noted that Julian still has a strong tongue thrust---which I am told is supposed to disappear when the baby is ready for solids. It is hard to try to get him to eat when he really doesn't want to. I am not really sure if it is that he cannot eat well (due to oral dysfunction?) or that he just doesn't want to (due to reflux issues?). He's a bit of a complex child, and hard to figure out. I really couldn't figure out why he wouldn't breastfeed---after all that is why I applied for the oral assessment!
Even now, it's a challenge to know what he wants. He may be fussy, I offer him his bottle, he pushes it away and continues fussing. So I try other things for a few minutes and still can't soothe him. So I offer his bottle again, and he will take it like he is absolutely starving! Don't ask me why he refused his bottle at first and then a minute later took it eagerly like he couldn't wait for it! My gut feeling is that we should NOT push him too hard to take solids. I am afraid that we could create more problems. But then again I probably should not ignore the concerns of the various professionals who say that Julian is not getting adequate nutrition without solids. At the same time vitamins will only help if I can get them into him and not have him spit or vomit them back out! :P
Oh, and then to complicate things further, when I was telling a few people about all the assessments and Julian's feeding issues, I had 2 or 3 people ask me "Why isn't he getting Occupational Therapy? They can do exercises and such to help teach the baby stop thrusting his tongue and learn to move food back to swallow it." Hmmm, no one said anything about OT for Julian, but we have a PT for Early Interventions, so I decided to ask her about it. The thing is that our regular PT went out on medical leave right before I got all these reports, so she arranged for a sub for the next month or so. However, the sub was on vacation for a couple weeks, so I couldn't even talk to her until she came back!
So last week on Feb 2nd , the substitute PT came, and I had a long talk with her about all of this. I told her that I felt like I was going in circles. I feel pressured to try to get Julian eating more solids so his nutrition isn't deficient. But he isn't willing to take much. It�s all very well to try to feed him vitamins too, but he hates taking them and it's hard to get them into him. I've been given a lot of suggestions, but so far nothing is really working. He is more willing to finger feed, but I know I can't count on him getting much nutrition out of that---it is more of a "put in my mouth, taste, feel, and push it back out" sort of thing for Julian, which is good for practice but that's it.
The PT explained that all the therapists in their office do more than just one type of therapy. So they can do OT as well as PT, and eventually they will start speech therapy with him as well. So she is going to work with Julian on mouth and face exercises, and she'll teach me to do some too. She also wanted to try feeding him and see first hand what happens. We offered him cereal and fruit as well as finger foods. He hardly took anything, and although he did put some puffs in his mouth, he spit them back out. Finally, she said, "there is a definite resistance to solids." She gave me some special rubbery textured things that we can use to rub gently on his gums and cheeks and let him chew on to give him different kinds of stimulation, and she showed me how to use them. We will continue to offer him a variety of foods, but we don't want to push him too much and create more problems. She wants to talk further with the SLP, but agreed that Julian should be on increased reflux meds to see if it helps.
Meanwhile we won't count on solids much for nutrition, but will try to meet Julian's needs through his milk and supplements. I did ask our Pedi about fortifying Julian's breastmilk again for extra nutrition, and she said to go ahead and do that. Plus we are supposed to switch him to a more complete brand of vitamin/mineral, however I have not yet found a local store that carries it. I have also introduced a couple ounces of cows milk per day, because it has more protein ounce for ounce than breastmilk. At the same time, I have noticed that Julian is eating less ounces overall since I began giving him fortified breastmilk and cows milk. Honestly, I don't know that I am getting anymore total nutrition into him!
One thing our PT from Early Interventions said was that perhaps we should ask the Pedi office for a case manager. She can help coordinate Julian's medical care between all the various professionals involved. Perhaps she can also set up a meeting for myself and all the professionals involved so we can all be on the same page so to speak. I think that would be wonderful! Like I said, my mind is spinning with all the reports and suggestions I've gotten lately! Now I am just waiting to hear back on this.
I know I am trying hard to do that best I can for Julian. It's all I can do. <sigh>
February 8th. I really have to focus on finishing our addition right now. It just hit me that Julian is trying to crawl, but I have NO safe floor space for him so he practices in his crib. Oh, yes, and he is pulling up now---I had him playing sitting in his co-sleeper beside me while I pumped last night, and he grabbed the co-sleeper side and pulled up to standing right in front of me. We were cheering for him, and he grinned, sat down, then pulled up again! I'm sure he will pull up in his crib soon too. He's really growing up, we REALLY need the new space---so I had better get cracking and finish our new bedroom! Even one room finished will make a huge difference for us. We could use it temporarily as a playroom or move Truman and me out there and make our current room a playroom for a while until we can finish the actual playroom. We also need to get heat out in the addition, but there has been a huge delay in getting our outside wood furnace hooked up---so right now we have a $5000 lawn ornament sitting out front. :P
February 9th. We took Julian for a helmet adjustment today. Afterwards, we stopped at David's House to let the kids play for a while---we took Eric and Jamie with us since I could not find anyone to watch them after school (the families I usually ask had sick kids). The kids played with "David's Toys" as they call them, and we had a snack and water to drink. Truman saw a notice in the Kitchen that they have souvenir type things that say David's House on them for sale, so he asked Dawn the director about buying a couple of coffee mugs. She went to get two for us, and when she came back she said that she wanted to GIVE them to us as a thank you for our part in the Chronicle interview! She also asked us if it was ok for our children to have some stuffed beanie baby animals and hats that had been donated, so the kids chose one each. Dawn also gave me a David's House bib for Julian. We gave David's House a small donation...just because we want to. David's House is definitely our favorite charity. :)
February 13th. It�s 3 am. Julian woke for a bottle, and I can�t go back to sleep, so I got up to pump. My mind is too busy I guess. It�s days like this that I don�t know what I would do without my journal. I usually can share things with my online friends, but some subjects are too touchy even for them. When NO ONE can really understand how I feel, at least I can write it down in my journal instead of keeping it bottled up inside. I know some people read my journal because I add updates about Julian here---but I have also told people that they read at their own risk--so don�t get offended--because this is where I express my *personal feelings and beliefs* (per disclaimer on index page).
So for the touchy subject. Life is SO UNFAIR that it really sucks!!!! I want a daughter of my own SO BADLY that I can taste it. Yet another friend has announced that she is having a girl. There have been quite a few lately---and then everyone goes on and on about how much fun girls are! Ya think? Oh, God, how I�ve been wanting a little girl of my own FOR YEARS!
I grew up as the ONLY girl in a large family with 8 children! That means I had seven brothers---yes, you read that right---SEVEN BROTHERS! I�m telling you, it was pure HELL! Boys can be SO MEAN, and they loved nothing better than to gang up on me and tease me and make me scream and cry. They got such a charge out of doing things like chasing me with big slimy frogs! They could be nice if they wanted to, but apparently that just wasn�t as fun for them. I wanted a sister SO badly, I kept asking my mother. She told me that it was out of her control so I would have to ask God for a sister. Believe me, I prayed with all my might. When my youngest brother was born, I was so disappointed I cried bitterly. I can still remember it clear as day. I can still taste the disappointment. Other people could not understand what on earth was wrong with me! I had a new baby brother, and everyone is expected to be happy about every new baby! Obviously other people have NO idea what it�s like to grow up with so many brothers making life a living hell! What�s to feel happy about yet another brother to add to it????
After my seventh brother was born, my mom told me in no uncertain terms that I was to stop asking God for a sister, because she was NOT going to have any more babies. She told me that instead I could pray to have a daughter of my own�when I grew up of course. I was nearly 12 yrs old then, but it never hurts to put in your requests early, right? So I prayed that I would have a baby girl someday. Of course, once I got married and we began ttc, my prayer changed to one of �please let me get pregnant with a girl�. Well here it is 24 years later, almost to the very day (my baby brother was born on Feb 15th in 1983), but I STILL don�t have a daughter!
My prospects are fading fast. My pregnancy history is terrible---I�ve lost 5 out of 8 babies. Due to my risks, the drs have advised me to stop having children. Besides, we simply do not have enough room in our house. IF we ever get our addition finished, we will have more room than we do now. However at the rate we are going on it, it will take years more, and then I will be in my 40�s. By then the risks will have increased even more, and it could be down-right dangerous for me to go through another pg.
Why is it that other people can have daughters, but I can�t? It certainly cannot be for lack of wanting, or lack of trying. I can�t think of any thing I have ever wanted more. Whenever I make a wish, it�s ALWAYS for a daughter of my own. I never waste a wish on anything else. We have even researched and followed books that give tips for helping you conceive girls. Maybe it works for other people, but it sure didn�t work for us! For whatever reason, we fall into the small percent of people that don�t have success with such methods. Our first try resulted in our 3rd boy, and then every other try resulted in a miscarriage. Finally we gave up trying such methods---and got another boy! Talk about frustrating!
I have no idea why it should be that way for us. It�s just not fair! I try not to think about it too much, because it just makes me upset. Other people give all sorts of ideas based on what they think worked for them. I�ve had people suggest variations of the so-called pre-selection methods, but we�ve tried them all with no luck. The theories make sense (girl sperm lives longer than boy sperm), but it just does not work for us! We�ve tried less scientific ideas----THINK PINK while ttc! Ya right, like that works! NOT! I mean, we tried it time after time, but no amount of thinking and wishing or even praying made any difference. And that is what brings me to my greatest source of pain.
As a Christian, I believe God ultimately is the one who controls our lives and what happens to us. Praying is how we communicate or talk with God. I know of many cases where praying has actually influenced the course of events. Case in point: Julian almost died after his premature birth, but today he is almost 13 months old and healthy; I KNOW for a fact that it is largely due to the many prayers prayed by us as well as by our family and friends. For that I am truly grateful. But when heartfelt prayer goes unanswered for many years, it's really very distressing. :(
I�ve had people tell me that they wanted a daughter, so they prayed for one, and wa-la, they got one! If only it was that simple, I should have lots of daughters by now. I have been praying for nearly 24 years, BUT I still do NOT have even one! I have asked God many times why. I�ve read the Bible---how it says to ask in faith---but that is not supposed to be some secret formula to get what you want! I really do not think I lack in faith---I know for sure God is able and He could give me a girl if He so chooses. What I don�t understand is WHY He does not so choose to give me a daughter. According to our pastor, wanting something *too badly* is a good reason for God to withhold something we ask for. He says that we need to submit our desires to the will of God---as in making sure we want God�s will more than the other things we want. So I have prayed and prayed to be able to give my desire for a girl over to God, and submit to His will. I have also prayed to be able to be happy without a daughter because wanting what you can�t have is a sure recipe for being miserable! :(
Most of the time, I can accept that I don�t have a daughter. I have three lovely little boys, and I love them to pieces---well MOST of the time. I mean, they can be very challenging and drive me crazy, but then again I should know---boys are always a challenge!
But it�s extremely HARD to see other people totally over the moon because they badly wanted a daughter and now they�ve got one. It�s a blatant reminder that I have been praying for a daughter for 24 years and *I* STILL do not have one, plus my prospects are basically nil. It�s a slap in the face all over again. It brings all my buried hurt back up to the surface. It feels like I must not be good enough to deserve a daughter or something. I mean, why does everyone else get their daughter, but I don�t???
Don�t get me wrong, I love my boys. But by and large I have to think of them as CHILDREN and not specifically as boys. When I think of them as boys, I see all the short-comings of males. Guys think on a completely different plane than us gals do. They are slower than girls at just about everything. This of course is compounded by the developmental delays my boys all struggle with. :P And their interests are generally so masculine and crude, and not at all feminine and nice.
Which is why I find myself desperately wishing all over again that I could have a daughter. Of course she would be normal like me, and a nice break from all the therapy and appointments my boys need. But since I can�t just order up a daughter like I can order the paneling I want for my bedroom, I find myself fantasizing new ways to get a daughter. Like maybe I could order a sex change for one, or better yet, all of my boys. It�s such an age of technology, many things are possible now��� I know, I know, now you are thinking that I should be locked up in a mental institution. Maybe I should be, living with too much testosterone quite possibly could send a person over the edge. :P Seriously, I�ve spent my life literally drowning in a sea of male hormones. Ugh, what a horrible way to die!
BTW, don�t even think of telling me I just have to wait for my boys to get married so I can have daughters-in-law----that is so NOT the same! You don�t get to raise your DIL. I want to be able to dress my daughter in cute little frilly pink dresses with bloomers and bows and the whole nine yards---you sure can�t do that with a DIL. I want to have mommy/daughter dates, but a DIL is already an adult so cannot be related to in the same way as your own child. I want to make matching dresses like my mom used to make for her and me---but that would be down-right weird with a DIL and you certainly cannot do that with sons either! I know I am missing out on something terribly important and it�s just eating me up! :(
I don�t know if writing this made me feel much better or not. I�m still in such a funk. OTOH, I no longer feel like my top is going to blow any moment.
Wednesday, February 14th. Valentines Day. Not that it matters. We got a nor�easter that brought a lot of snow and even some freezing rain. School was cancelled, and Truman decided not to go to work either. I did not go in to the WIC office as I normally do on Wednesday mornings. But in spite of the best intentions, I didn�t do any WIC work at home either. The kids played in the snow and Truman snowblowed throughout the day.
EBay was having a listing sale, so I decided to take advantage of it and get some stuff listed. I have 2 banana boxes of girls clothing that I have managed to accumulate over the years. A lot of the clothes are either new with tags still on them (clearance finds) or in very nice condition. After Julian was born, I was sure I would not have another baby so I thought I would try to sell the best stuff on eBay. I just hadn�t gotten around to doing it yet.
I don�t feel that there is a whole lot of point to hanging on to this stuff indefinitely; it just reminds me of what I want but don�t have. So I sorted through the boxes, and got out all the stuff that looks good enough to sell---the equivalent of one box! There were a couple of special outfits I couldn�t bring myself to part with yet, so I�ll give it a little longer on those. There were also some dresses that are pretty old and have some small stains or loose stitching. I don�t think they will sell, but they are not bad enough to throw out. I�ll keep them for now and decide what I will do with them later. I may fix them and then donate them, but I don�t know yet.
Anyway, I took photos of the saleable items, down-loaded them to the computer, and edited as needed. A lot of stuff is summer clothing, so it�s a bit early to list them yet. But I listed other items that I think will sell now. Then I started writing descriptions for the summer clothing. This way I will be ready when the time comes to list them, and it should go quickly.
I�m kind of sad in one way, but I think it was good for me to do this at this time in my life. If the girl clothes don�t sell, then I�ll have to rethink what I�ll do with them. But I think it�s necessary for me to try��
One week later: all I sold was two velvet shirts and a hat/bootie set. Oh, well, next listing sale, I�ll try one more time. Later in the spring I can try listing the summer clothes too.
Eric, my oldest son, told me that he still wants a baby sister---BUT he will not pray for one anymore, �because praying doesn�t work,� he told me. �From now on, I�m only going to *wish* for a sister,� he said. I can�t blame him there. He started praying in early 2003 for a sister. Since then we had 2 miscarriages and two more boys. I remember what he said after Lucas died. I asked him if he was upset, and he said, �no, I don�t care, I wanted a sister anyway.� I guess it is my fault he feels like this because I was the one who told him he should ask God for a sister, because it is out of my control. And now he thinks God must not care and praying for something obviously does not work. I know I�ve told him that sometimes we have to wait for answers, and then sometimes the answer is no---but you can still ask. The Bible says, �Ye have not because ye ask not.� But this is definitely lost on my son. So far I�ve obviously failed to teach him the meaning of faith. It doesn�t help either that my own faith is being severely taxed. :(
February 23rd. Julian is not crawling although he scoots himself backwards quickly by pushing with his arms. He is almost done with the orthotics helmet. His head has improved immensely! He has an oral assessment in about two weeks, and we will be meeting as a group with our Pedi, the therapists, and the nutritionist. We finally got a nurse assigned as a case coordinator and I saw her at Julian's check-up and RSV shot visit today! This will help us get everyone working together, and hopefully we can work on Julian's feeding issues without all the conflicting advice I was getting from the different people! Since he's not taking much for solids, I am still pumping 6 times a day and supplementing a little with formula and cows milk.
Julian says dadadadadadadadadada and mumumumumumumum but he does NOT apply them to either of us (he's usually looking at the toy he is playing with). :) He�s also saying nininininin, long �i� with a bit of a �y� sound to the �i�. No waving or clapping yet.
What's hysterical is that he is so fascinated with my teeth, he keeps trying to grab them and pull them out of my mouth so he could put them in his. When that didn't work, he tried to lunge for my mouth and get his mouth on my teeth. Once he got my chin in his mouth, and the second time, he French kissed me! LOL Yup, he stuck his tongue right in my mouth. I nearly died laughing! ROTFLOL
February 25th. We have some forward motion with the creeping now. Still not quite up on his knees, but almost there!
February 26th---he did it! He got up on his knees and crawled forward! He crawled across our bed, and we pulled him back from the edge�..only to have him crawl across again! I think he thought it was a fun game!
EEK! This really means we NEED to get another room finished ASAP. I have nowhere to really let Julian crawl, though he does it in his crib too. Our floors are just not safe enough to put him down---I can�t guarantee that the older kids keep everything picked up enough and we definitely don�t want Julian eating Legos, crayons, etc. We need to dedicate a room either to Julian�s play space or to the older kids� play space.
February 28th. I'm in big funk. I'm overwhelmed, stressed, tired, worried, and possibly also depressed. I hate the cold weather we've been getting and can't wait for summer to come. I've gained weight this winter and now weigh more than I did right before Julian was born---ugh! But I'm still pumping for Julian so it's not the time to diet.
I'm hoping that soon we will get it figured out what we need to do about Julian's feeding issues. We weren't able to find a local retailer that will order in the vitamins Julian is supposed to take, so we have to figure out what to do about that---with the drs ok of course. We could maybe order online, but insurance won't cover it. We have a team meeting with our Pedi, a nutritionist, and several therapists next week to discuss all these things. I just hope we have the necessary time to really cover all the issues and come up with workable solutions.
Julian has begun hands-and-knees crawling---but I have nowhere safe besides his crib to let him crawl, so we HAVE to get a room finished in our addition ASAP---like I AM trying but I just don't know how to do it any faster (it's slow at best!)
And then I have WIC work----I am so far behind that I don't think I can ever catch up. But today I was informed that I am supposed to be calling clients that are assigned to other peer counselors, but that is just plain stupid and I am upset about it---like I don't already have enough work????? Argh! The person I really need to speak to about this is out on vacation, so all I can do is leave her a message and wait. If it comes to it, I will have to quit my job, which I don't really want to do because it means we'll have even less money coming in.
Of course I also need to redo our budget and figure out how we can finish our addition without going even further into debt---but it's not like I even have time to work on this either. I am spread so thin, I probably need a personal secretary! Or maybe what I really need is a personal psychiatrist because I am going crazy.
I've started cutting back on pumping a little---instead of 6-7 times a day, I'm pumping 5-6 now. But I have to make sure my production doesn't fall below a certain number of ounces until flu season is over (like will this nasty weather ever end?)
Well, there is my personal pity party (had several of those lately). I just want to crawl into bed and sleep until summer comes. :P
March 7th. Today at 4 pm, I took Julian to our Pediatrician's office for a team meeting and oral assessment for Julian. As I have mentioned, Julian doesn't eat much solid food. Our Early Intervention therapist has been working with him on this, but in her words, "he does weird things with his tongue". LOL But seriously, he isn't using his tongue like he should to be able to handle solid foods. He humps his tongue a lot and pushes his food back out, but it appears to be because he can't seem to do different.
Our team consisted of: The SLP (Denise) and the Nutritionist (Michelle) from Special Medical Services (a state program). Our therapists from Early Interventions (yes, two of them, our regular one (Terri) who is healing from her surgery and the one (Becky) who is filling in for our regular therapist until she's back full time). Our pediatrician (Dr Marni). And our newly assigned case manager (Deb) from our Pedi office. One of Dr Marni's nurses asked to attend as well, since she is studying SLP. Of course Julian and I were there.
The SLP fed Julian and watched what he does.
For one thing, he won't willingly open his mouth for the spoon, so we have to give him a second spoon to hold. He wants to chew on the spoon he's holding, so when he opens his mouth, we have to sneak the food in with the spoon we have. He seems to be generally ok with this. If we give him very tiny amounts of baby puree, he seems to be able to handle getting some of it back to swallow. But he still spits a lot back out. Also he can't seem to handle thicker food than stage one fruits and veggies.
We also gave him some Gerber fruit puffs, which he really loves. He tends to stuff them in his mouth, and probably at least half of them come back out, but he keeps on eating them. His other favorite finger food is arrowroot crackers. Again, about half of the crackers wind up coming back out of his mouth, but he so enjoys them---he gets excited when he sees the package! LOL The SLP noted that he puts the crackers against his mouth and leans forward, effectively breaking the cracker in to smaller pieces which he then puts in his mouth! The arrowroot crackers dissolve really easy. Smaller pieces wind up in his lap and on the floor, but these are a great choice for him.
The SLP wants me to keep offering purees and the finger foods he loves. She showed me some specific techniques for how she wants me to put the spoon in his mouth---bring the spoon in from the side, just barely over his bottom lip, and tip the food onto his tongue, rather than pushing the spoon into his mouth. If he has his own spoon in the side of his mouth, his tongue is usually in the right place for a little puree to drip onto it. He'll move his own spoon as he closes his mouth to taste the food. He swallows some but definitely not all of the puree as some comes back out. Also she said NOT to scoop food off his chin with the spoon---which of course I�ve always done that instinctively so now I need to remember NOT to do it! She said too much touching the front of his face is too much stimulation and distracting him from learning to move food back to swallow.
We just have to keep trying, and hopefully he will finally figure out how to eat without spitting out half. The SLP also wants me to try giving Julian foods like hard strips of bagels or slim-jims or similar things that he can hold in his hand and chew on without actually biting pieces off, so it will help him exercise his jaw, tongue, and facial muscles. I'm hoping that given time and some OT exercises, Julian will figure out what he needs to do with his tongue. Our EI therapist will continue working with us on this as well. One thing that is amazing to me---our regular PT went out on medical leave in January for some surgery, and the therapist assigned to fill in for her working with Julian is also very experienced in feeding issues. She still wanted to get direction from the SLP who is the real expert here, so of course she was at this meeting too. But I think God knew we really needed help with the feeding stuff and the timing here was perfect to get the best therapist to work weekly with Julian. No offense to our regular PT---she's a wonderful woman but her strengths are in areas other than the feeding. It's amazing how it's all worked out. Like the Bible says---God knows our needs before we ask, and I think He knows our need before we even realize we have a need!
One big point the SLP made was to always be careful not to create any food aversions. If sometimes Julian is not interested in eating food and shows resistance, then back off and don't push it. I don't anyway---if any thing I may be a little too laid back about trying to get him to eat solids, mainly because I sure don't want to have any food battles. It just isn�t worth it! He already won the one of bottle versus breast. :P But heck, pumping and bottles of breastmilk are working pretty well for us both right now, and it's hard for me to spend a lot of time fruitlessly trying to get solids into him. Plus it's hard to work on feeding solids when we are out going to appointments, work, or grocery shopping. So if he's interested--and we have time--he gets solids; if not, then fine, there is always next time. Seriously, he rarely shows interest in what I am eating. Pretty much he just likes his puffs and his arrowroot crackers and his veggie sticks (the healthfood kind). Meanwhile, I may end up pumping longer than I had planned, although I can cut back some. We have introduced cows milk, and I can give him that to replace some breastmilk, plus I usually give him about 4 oz of formula per day and I could increase that some.
I think the SLP wants to review her notes and think things over a bit, and then when she makes her report, she may have some more ideas and recommendations. I am interested to read her final report. She did mention something about maybe Julian's trouble with BFing had to do with this oral dysfunction that we are seeing. She originally thought it was due to his breathing issues, but now she thinks it's more than that. Oh, yeah, one more thing----although she had talked on the phone with me about Julian possibly needing a swallow study, now she thinks we don't need to go that far at this point. He does have some reflux, but his pepcid seems to be helping with it. I guess we keep an eye on things for now.
Of course the Nutritionist who attended this meeting is concerned about getting a properly balanced diet into Julian. If he doesn�t eat much solids then he really needs the complete vitamin supplement. We can't seem to get it locally, so we may have to buy online. I had not done so because we wanted to try to get the supplement covered by insurance as medically necessary. Now they tell me that there is one more option we can try where I can buy the supplement and submit my receipt for reimbursement---so I�m waiting for our case coordinator to get back to me on that as it has to be done the "proper way."
The nutritionist did say that Julian looks healthy, and not at all underfed. He�s got a double chin and nice creases around his joints. He also has a Buddha belly and baby chub on his cheeks and thighs. He is in the low percentiles on the growth charts, but his weight for height ratio is ok. He is likely predisposed genetically to be a smaller person anyway. I'm short (if a little heavy right now), and Truman though tall is rather slim build. Our older kids are also small for their ages.
Julian was weighed. He's 7.5 kilos or 16 pounds 8.5 ounces.
For the appointment, I took off Julian's helmet. I think he needs an adjustment soon, because he acts like it bothers him now. Our Pedi looked at his head and is pleased with how it has rounded out, but she thought it could use just a little more helmet time. She wants to look at it in about 3 wks when he gets his Synergis shot. We think he may be ready to stop wearing the helmet by then. Our Pedi is to give the final ok, since the orthotics guy Rob said he doesn't sign off on that. I would be ok with stopping the helmet now---I know one thing for sure, if Julian's head always looked this good, I would never have asked for the helmet. LOL I think Julian will appreciate getting rid of the helmet. I don't mean we will throw it out---I am sure we will keep it as a souvenir. :) But I think he will progress more with his development when he doesn't have to wear it. You can tell that helmet does interfere some with his vision.
March 9th. We took Julian to see the respiratory dr at DHMC. She is so pleased with how he is doing! No major illness this winter. And she was so proud of me that I am still pumping breastmilk for him! She was glad to hear about the team of people we have working with us on his feeding issues. She said we can wean off the Flo-vent (inhaled steroid). She said she doesn't need to see Julian again until September! Of course our Pedi will continue to see him in between.
Julian also got a helmet adjustment. The orthotics guy said that he thinks Julian can stop using the helmet any time now. But the final decision is up to our Pedi. He did enlarge the inside of the helmet a little so Julian can wear it a couple more weeks, but he thought we would not need to come back to him anymore. We will have Julian wear it until he sees our Pedi at the end of this month, but he is definitely showing more resistance to wearing it. Sometimes I have to take it off him just to get him to settle down and go to sleep. He moves a lot while sleeping now, rolling from front to side to back, etc, as well as moving from on end of his crib to the other, and switching which end his head points to. So it's not like he sleeps with his head in one position anymore like he did when his head went flat on one side in the early months.
March 11th. We are having Julian dedicated on Sunday, March 18th! The pastor let us know a few days ago that he was planning to do dedications for several families, and we could have Julian included too. I wanted to dress up Julian for the occasion, but I discovered that the only dress shirt I had in his size was badly stained. I couldn't bleach it either because it has a blue pinstripe design on it. So I thought I would splurge a little and buy him a new outfit just for this. I went to JC Penney and Sears and another children's store called Dilly's----they had NOTHING for dress clothes for little boys size 9-12 mos! They had racks and racks of beautiful girls� dresses, especially Easter dresses. But next to nothing in boys dress clothes at all, and what little they had was all bigger sizes like 4T and up. So if Julian was a girl, I would have plenty to choose from, but because he was a boy, I could find nothing for him. Do people not dress up little boys for Easter? We don't make a big deal of Easter anyway, but I thought that those who dress their girls in those gorgeous Easter dresses would also dress up their boys as well---but I must be wrong on that. I did not have time to order online and wait for something to be shipped, and I don't want to pay for express shipping either. So then I called the lady at a children's consignment shop and asked her what she had in boys� 9-12 mo dress clothes. She said we could probably put together an outfit, so we drove over there. While looking at what she had, I saw what at first looked like a long-sleeve shirt in off-white. It was in the 0-12 mo rack, and I pulled it down to look at it. It was actually a christening outfit, and in new condition. We go to an Evangelical Free Church, and we do dedications rather than infant baptism or christening, but I think the outfit is still suitable. With some cream colored socks and Julian's natural leather booties, I think he will look very cute! Oh, and I am going to take off his helmet for the dedication. :) I will be sure to post some pics.
March 18th. Julian was dedicated today. The pastor had said there would be a couple other families having their babies dedicated too. But as it turned out, we were the only family having a dedication this time. I should explain something: dedication is different then baptism. Some churches say that if you baptize your baby then they are saved by that for life and will go to heaven no matter how they live when they grow up. In our church, we believe based on the Bible that that is not so. We believe that innocent babies are saved by the faith of their parents, but as they get older and can make their own decisions, they will need to make their own commitment to the Lord and claim their salvation. The purpose of dedication is to make a solemn promise to raise our child/children in the knowledge of God. The church people bare witness and agree to help us with this. Our hope is that when our children grow up, they will choose to continue in the Christian faith; we hope they continue to commit their lives to the Lord, and use their talents to honor and serve God. But the decision to follow the Lord is ultimately up to each individual person, and rests between them and God. Our duty as parents is to guide and direct and encourage them and of course pray for them. As the Bible says, �train up a child in the way he should go, and when he is old, he will not depart from it.�
The dedication was just a few minutes out of the Sunday service, but I am glad we did it. I wanted pictures, and we had our camera, but things happened quickly, and I wasn�t sure how to get the pictures taken. I guess if I were to do it again, I should arrange to have a friend in the audience take a couple of shots at the right time. Anyway, after the service was over, we did have a friend take a couple pics of our family, and then we asked the pastor if we could get a shot of him holding Julian. Julian was perfectly content to have the pastor hold him, and he was interested in playing with his lapel microphone! LOL We took the picture in the entryway, which I thought wasn�t quite as nice because the coat rack was in the background. But at least we got a pic. On the other hand, a pic in the sanctuary would have the mics, wires, sound speakers, choir chairs, and other paraphernalia in the background!
March 27, 2007. It is official now�Julian is done with his orthotics helmet. At our appt a few weeks ago, Rob the orthotics guy said that he thought Julian was pretty much done with it---his head shape was almost perfect---but Rob adjusted the helmet so Julian could wear it for a couple more weeks. The big thing is that Julian was becoming resistant to wearing it. He would often fuss when I put it on him after his breaks, and he would try to get it back off. Some nights I had to take the helmet back off just to get him to settle down and go to sleep. Rob said that Julian�s head may still round out a tiny bit more even without the helmet because Julian changes position so much while he sleeps. He sleeps on his sides or his tummy, not just on his back, so he never has his head turned only to the right side like he did when he was tiny and first flattened his head. Plus Julian is awake enough hours, sitting up or standing so he isn�t putting pressure on his head. And he is getting old enough that the helmet is less effective at reshaping the head anyway. But our Pedi was to make the final decision on stopping the helmet.
Julian had to go get his last Synergis (RSV) shot today, so Dr Marni (our Pedi) saw him for a few minutes. Julian did not have his helmet on, and I explained that I had given up fighting with him to get him to wear it. He hasn�t worn it at all for perhaps a couple weeks now. But his head looks just beautiful, about as perfect as you could wish for! Dr Marni agreed with me (somehow she usually does---lol) and pronounced Julian officially done with his helmet!
Speaking of official, Julian now officially has TWO teeth! He got his first tooth about 8 wks ago, and we have been continually checking for his second one. He has his center-right bottom one, and for weeks he�s had a bump beside it for his center-left bottom one---but it just hasn�t broken through the gum yet. Today, I was checking his gums again (which of course he doesn�t like and uses his tongue to push my finger out) when I felt a tooth on his top gum! That�s right, he got his top tooth next, but it isn�t the right-center top this time, it is the left-center top tooth! I also managed to get a good look at it, and this tooth really is through his gum. So now he has two teeth, but they are diagonal to each other, which strikes me very funny. Julian is living up to his reputation of doing things his own way. :)
Friday, March 30th. We finally have heat hooked up for our addition. This also means we are finally using our new outside wood furnace! We NEED the new living space so badly! I applied to Habitat for Humanity, asking for some help to finish the interior of the addition. They called and asked to come see our house and talk with us tomorrow. We met Saturday afternoon, and they agreed to provide 4-6 people to help us finish the main room. I knew there is no way that I can do the big room myself because it has cathedral ceiling---I knew we needed at least 4 people plus scaffolding and maybe some other equipment to do it. My parents are getting older, and I knew I needed to ask someone else. The HFH people can come back in May to work on it. I am so excited! However, one man said he can come on Thursday, and help me work on the bedroom trim. I do have a bunch of work to do to get ready---I need to put away a bunch of stuff that was moved for installing the heating system. I also need to varnish the trim boards and paint the closet. Once the closet is painted, I can put some stuff in there to get it out of our way too.
April 2nd. Julian just got his third tooth---the center left bottom one finally broke though the gum. It also looks like soon he will get his center right top on�it is bulging, but not quite broken through.
But that is the least of his problems right now. :P Julian is quite sick. He came down with a cold a day or so after getting his final RSV shot last week. I wasn't too worried---Jamie has had a runny nose sort of cold for almost 2 weeks, so I figured Julian would get it sooner or later. But soon Julian had a deep junky congested sort of cough. Then Friday morning, he started throwing up. At first I thought it was related to coughing, but then he was throwing up without any coughing too. He obviously felt pretty bad, so I let him sleep as much as he would, and I fed him only breastmilk in small amounts as he wanted it. I also gave him albuterol (inhaler) which we still have from a previous cold to help with his breathing.
He seemed a little better on Saturday, and we went to get trim for our new bedroom. He was fine riding in the car and seemed happy enough to have a change. But that afternoon, he woke from his nap in his crib and threw up all the rest of the evening. He had hardly eaten all day, maybe 6 ounces of breastmilk, and his diaper was barely wet. He still had the junky cough, a runny nose, plus he was running a temp of 101.5 rectally. So I called the Pedi office and the on-call dr called me back. I explained a little of Julian's history, and I was worried about how labored his breathing was, plus he really can't afford to lose weight. She wasn't too worried. She told me to give Julian pedialyte for his tummy, and call back if he took a turn for the worse. Truman drove into town to get Pedialyte, but wouldn't you know, Julian refused to drink any.
Sunday, Julian seemed a little better. I was giving him Tylenol suppositories for the fever and also because he acted like his head hurt when he sat up. He has this weird rash on his forehead, and I think it's from him rubbing his forehead on his sheets. A few times I saw him pulling on his ear too. He would be very fussy before I gave him the Tylenol, but a little while after he would seem better. He slept a fair amount of the day. He threw up only once on Sunday morning, so I thought maybe he was on the mend.
Monday morning, I heard him fuss around 9:30 and I went to get him up. He had a wet diaper, and when I changed it, I discovered that he now had diarrhea too. This on top of everything else, poor little guy! I changed him, and then he threw up again. So I called the drs office. They had a nurse call me back, and I gave them the run-down. I explained that I was concerned about 2 things---his labored breathing from the cold, and his potential weight loss/dehydration from the tummy bug. They wanted him seen ASAP, so they scheduled him for 10:30 with another Pedi in the same office as our regular Pedi. That's fine with me, but I said I had to be back home by 11:30 to meet my kindergarten kid.
As we were about to go out the door to go to the drs, Julian threw up all over my jacket, shoes, and the floor. I had to change my jacket and quickly wipe up my shoes and the floor. We got to the drs a tad bit late, but they were running behind, and we didn't even get a room until 11 am. The nurse weighed Julian, and he was 16 lbs 2 oz. Last Tuesday when he was weighed for getting his RSV shot (the dose goes by the baby's weight), the nurse said he was over 17 pounds. (I remember giving Julian a cheer for hitting 17 pounds!) So Julian has lost nearly a pound from being sick. Ugh!
Then the dr came in, and examined Julian. She said his ears are red inside but no puss, so though they may hurt, they are not infected. She was really concerned about his labored breathing and wheezy sounding lungs. He's always had a slight wheeze but it definitely gets worse when he is sick. She wanted to give him a nebulizer breathing treatment. It was 11:30 by now and I had to call the school and ask if they could keep Jamie for me until I could get back from the drs office---the school was really good about it. Julian's breathing improved with the neb treatment, so the dr wanted to set us up with a nebulizer at home---she said it would be more effective than the inhaler.
I was worried about Julian's weigh loss, but she said that was not as big a deal as his breathing issues. She said to keep offering him breastmilk as he would tolerate it. She also prescribed an oral steroid for him, and her nurse faxed all the prescriptions to our pharmacy. I left the drs office about 12:15 with a list she wrote out for me. I figured I should go back to Gilsum and pick up Jamie from school, then come back into town to get the prescriptions from the pharmacy. It's a good thing I did this, because when I got to the pharmacy around 1 pm, we still had to wait for them to finish filling our meds.
We got home around 1:30, and I was starving, not having had any lunch. Fortunately Jamie had been given some lunch at school. I also needed to pump milk, because I hadn't pumped since 6:30 am. Normally I would have pumped between 11 and 12, but though I took my hand pump with me, there was not any time for me to be able to pump. I got Julian down for a nap after giving him some breastmilk from the refrig. I grabbed some leftovers from the refrig and called Truman at work to tell him what was going on and why I wasn't home when he called during his break (he left me 4 msgs). It was 2 pm by the time I got to pump, and I had to pump for an hour to really empty.
Around 3 pm, I got a call from the medical supply company that was to set us up with the nebulizer. At first they wanted me to come pick it up from their office. I explained that I wasn't going to take my sick baby out of the house again, so could my husband pick it up? The problem was that they needed to show me how to use it, and I would be the person using it. Not a good idea to try to have Truman be shown and then show me. So they agreed to bring us the unit later in the evening (they came about 6 pm). Julian's insurance covered the nebulizer unit 100%, and it's something we will keep for future use---it is not returnable.
Julian slept much of the rest of the day. He has continued throwing up, so I did not give him his oral steroid---only breathing treatments. I am supposed to give him treatments at night too, but he has to sit up for it, and he feels so bad he does not want to sit up (he acts like he has a headache). So I'll have to use the inhaler at night and the nebulizer during the day. I am still giving him Tylenol suppositories. He is still feverish and has diarrhea, plus the junky cough.
Tuesday he was still sick. This was the fifth day that he's been throwing up. I was supposed to go to a WIC meeting today, but I told my boss I couldn't go because Julian is sick. The drs office was to call us this morning to see how he is. I have never seen any of my children this sick. Of course the older kids did not have the breathing issues, so this part is new to me. I am very concerned though that Julian is losing so much weight. On Monday the dr wasn't too concerned about his weight, as he was 6 ounces less than his last drs visit---but that was 3.5 WEEKS ago! I guess the nurse did not record his weight in his chart when he got his shot on Tuesday last week, but I swear she said he was OVER 17 pounds! I remember seeing the scale reading when she weighed him. So in reality he's lost almost a pound already, and he still is not any better than he's been for the last 5 days.
They haven't called yet, so I'll let you know later on how things stand. I am worried and frustrated, and adding to that is the fact that I cannot work on the addition and get ready for the Habitat people to come help us. The one man called me last night to ask if he could come at 9:30 instead of 9 am on Thursday. I said sure and also explained that my baby is very sick and I'm unable to work much on the addition. But I really want their help and want to be ready for them. He was very nice about it, and said it would be ok. He said to focus on caring for my baby and he was sure things will work out ok. So I am trying to not let it get to me.
So after waiting all morning and not getting a call from the drs office, I finally called them a little before noon. The nurse I spoke with didn't seem to know what the deal was, so I filled her in. She then scheduled us to come in at 3:15. When my hubby called during lunch, I told him what was up and asked him to meet me at the clinic after his work shift so he could get Jamie from me.
We saw the same dr again who we saw yesterday. She's not our regular Pedi, but she's a very good dr. I told her that I thought the breathing treatments helped a little with his breathing, but I was really concerned about the other things going on---the fever, vomiting, diarrhea, weight loss, and the way you could tell he just feels really bad.
She listened to my concerns and she examined him again. Then she said, "let�s run some tests and find out what is really going on. Then we can determine further treatment from there." I was in full agreement. She ordered a nose swab to test for RSV and Flu---her nurse did that. Then she sent us to the lab for a blood draw to check his white blood cell count and electrolytes. After that we went down to get a chest x-ray, which we hand-carried back to the dr. Poor Julian, he did not like ANY of these procedures.
The x-ray was really interesting. I was given a big lead apron to wear so I could hold him. They had this interesting contraption for him to sit in. It has a wooden circle that looked a lot like the open seat part of a wooden toilet seat. lol! In the middle of the opening was a small seat that looked like a little bicycle seat. You put the baby's legs inside the wooden circle and have them straddle the "bicycle seat". Then there was a clear plastic cage-like thing that had two sides and opened in the back. The cage could be closed around the baby's torso, effectively immobilizing him for the x-ray. I stood in front of him and held his arms above his head while the x-ray was taken. He screamed the whole time, but I think it was because he intensely dislikes being held down!
The dr looked at the x-rays and reviewed all the finished lab reports. Julian's lungs look "ok". His WBC count was fine too. His electrolytes were just a little off, but not enough to warrant hospitalizing him with IV fluids. But he tested positive for RSV!
So that's what this illness is---RSV. We have gotten all his RSV shots this winter; in fact he just got the final one last week. The good news is that Julian has a light case of RSV, compared to how sick it can really make a baby. The shots are not 100% preventative (more like 90%), but they give the baby extra antibodies to help them fight off RSV if they do get it, so they generally only get a mild case. Julian is sicker than I've ever seen one of my kids, so if this is a mild case, I would hate to see a severe case. Thank God we did get the shots for him!
For treatment, we are continuing the nebulizer treatments to help his breathing. She said to keep giving him breastmilk as he will take it. She said breastmilk is not what is upsetting his tummy; the cause is more likely to be the mucus from the RSV that goes down his throat. She said there is no need to push him to take pedialyte. Breastmilk is really the best thing for him, and it has the added advantage that my breastmilk has antibodies for him too, because Julian and I are in close contact and we exchange pathogens (not that his RSV will make me sick, but that it triggers my body to make specific antibodies for him in my breastmilk). She did not want to give him an anti-nausea med because 1) he is already getting a bunch of meds and we don't want to overload him (I agree) and 2) anti-nausea meds sedate the baby and then they don't want to eat anyway, so they can still get dehydrated, which is counter-productive. I am just going to keep offering him as much breastmilk as he wants, and hope he keeps most of it down. Other than that, I can give him Tylenol for fever as needed.
Julian perked up a bit this afternoon, but now he is tired and I am about to put him to bed. The dr said that RSV peaks between 4 and 6 days (we are on day 5 now), so probably within another day Julian will be on the mend. I am SO glad we found out what we are dealing with here---it makes it easier to know what to do about it, and I'm no longer stressing about what on earth is wrong with my baby.
Tomorrow, April 4th, is Julian's "coming home" birthday! :)
I hope he is feeling better, but we will still postpone the cake celebration. My parents are coming to visit around April 12-13, so maybe we can celebrate then.
My parents arrived the afternoon of April 11th to visit us for a few days. Since they were here and Julian is feeling better, we decided to celebrate Julian's home-coming birthday. I made a cake, and I had a present wrapped for him. My mom had also brought a few things--actually for all of us, but she had a Gund bear and an outfit for Julian as well. :)
I took some pics. Julian loved his new toy---a Peek-a-blocks Fish. He got quite mad when he couldn't get it out of the package, so I was hurriedly trying to cut the box open and he kept grabbing for the scissors! But when I got it opened, he was thrilled to play with the fish---it plays music and he adores anything that plays music!
Then we had cake, but he was so NOT thrilled with the cake! LOL He stuck his hands in the frosting, and then started crying! He pushed it away, so I put it on the table and began cutting it up to serve. I gave him a tiny piece on a plate, to see if he would feel less overwhelmed with that. He promptly grabbed the little piece of cake and tried to throw it off his tray! Little stinker! LOL I managed to grab it before it went on the floor, and put it on my plate. Now that his plate was empty, he began happily playing with the plate. When I cleaned his hands and face, he wanted to play with the cloth.
We enjoyed Julian's cake. My mom said it was the best cake she ever had and couldn't believe it was a boxed cake mix. I knew it was a cake mix I got cheap from the discount grocery store because the box was damaged, so I looked at the box again---it was a Pillsbury "double pudding in the mix" French vanilla flavored cake. Too bad Julian didn't appreciate it, but some day I'm sure he will love cake.
April 12th, Julian got his 4th tooth---the center right on the top. My mom had fun taking care of the kids, while my dad helped me work on the addition. The kids had a snow day today (we got a heavy wet snow mixed with rain event), and there was no school on Friday (scheduled teachers� workshop). Truman took Friday off, and we hung out for a while. In the afternoon, we went to see a working farm, then we went to Pizza Hut for dinner.
April 19th. I took Julian in for his 15 mo check up. He did lose about 3/4 pound while he was sick with RSV. I found out that his recorded weight for March 27th was about the same as his recorded weight for March 7th. I could have sworn that the nurse said he weighed 17 pounds on March 27th, which would make more sense to me---but that also would mean Julian lost 1 � pounds while sick. Either way, he needs to gain it back somehow!
He was pretty much over the RSV and getting his appetite back but now he has another really junky cough. I gave Julian some formula this morning because he was hungry before I had pumped. About 3.5 hrs later, he threw up. It seemed to be because he was coughing up so much mucus. He seemed better after and willing to play, plus he took a good nap. I didn't take his temp, though he felt slightly warm. I had given him a couple of breathing treatments, but he still had quite a whistling sound to his breathing. I knew his appt was early afternoon, so I did not call the dr.
Anyway, the dr said his lungs sounded fine, so his congestion was probably in his throat and nose. She said to continue giving him breathing treatments as needed. She also said I should continue giving him Flovent in addition to the Albuterol---I thought I wasn't supposed to give both together, but she said they can be given together and may be more effective together.
She asked about his eating. When he does eat solids (ie, when he is not sick), he is getting better at willingly opening his mouth for the spoon. He will eat between 1/2 and 1 ounce of pureed food at a time. He accepts most fruits and veggies we have tried. I offered him baby meat, but he was NOT impressed! In fact, he took his fingers, scooped up some pureed meat, and threw it on the floor! When he went back to scoop up more and throw it on the floor too, I took his bowl away and wiped his hands. Then we got out butternut squash and he ate that just fine. What a little turkey! He cracks me up with how emphatic his reactions are! He LOVES Gerber puffs because they dissolve in his mouth quickly, and he will eat quite a few at a time. He likes bread, pizza crust, crackers, and veggie sticks, but I have to watch him carefully. He can't gum these things well enough yet, and will sometimes try to swallow a chunk and choke on it.
We were finally able to find a local supplier for the Schiff liquid vitamins he is supposed to have. They actually taste pretty decent, though he prefers them in his juice. I also got the report from the SLP, and his diagnosis is "dysphagia" which means he has trouble swallowing and in his case it is trouble with solid foods.
As of two days ago, I have been pumping for Julian for 15 months! 15 months was my breastfeeding goal for him, but when I realized he just wasn't going to breastfeed, I made it my pumping goal. However, I am not stopping just yet. Since breastmilk is still his primary food, I am still pumping for at least a while yet. I had to cut back some because I just don't have enough hours in the day for everything, so I give him some formula. I haven't decided yet how much longer I will pump, because if I stop pumping I will have to give him more formula, and I'm just not sure if I want to do that. Breastmilk is SO good for babies, I think I want to give him at least some for as long as he needs it. When he had RSV, breastmilk was all he would take while he was sick, so I am very glad I was still pumping.
Anyway, Julian weighs 15 pounds 14 ounces. He's 28.5 inches long and his head circumference is 45 cm. His weight is well below the chart, and unfortunately he fell off his own curve due to being sick. But his length and height are in the 5-10% *without* correcting his age for prematurity!
April 24th. Ebay had a listing sale, so I listed all the NWT spring and summer girls� clothes that I had saved. The sizes are from 0/6 mo up to 5T, but there are only 1 or two outfits of each size I have. We will see if I have any luck selling these. My rule is usually to try up to two listings. If they don�t sell, then I�ll have to decide whether to keep the clothes or find another alternative. I don�t really want to give them away at this point. It'd be nice to get some $ for them so I can buy something for Julian instead. He very well may be our last baby.
