Home and Feeling Great

Walking out the door and going home.

In the Riley Wagon, on his way out.

Dance! Dance!

Eating any solids he wants!

We got to take Jamie home on Thursday the 18th, and got home late in the day. Jamie did so well! He rode in the car and was a happy boy. He slept for a while, played by himself for a while, and I played with him for a while, so the 2.5 hour drive went by pretty quickly. He got a little fussy in the last 10 minutes or so, but I was able to distract him until we got home. He had a messy one, so it's not surprising he was cranky. Then he went to sleep without fussing. Amazing.



Since we've been home he's been a new boy. He's calmer and happier and not so fussy. He likes to snuggle now. We can sit with him on the couch, just holding him, and he is happy. Before, he'd just have a fit if we weren't walking him around or at least bouncing him while sitting. And he goes to sleep for naps and bedtime without having a fit. I rock him and out he goes. No crying! Nothing! And then when he wakes up he plays by himself for a while until we hear him and get him, and he's not upset. Before, he'd always wake up from naps crying piteously. Only in the mornings would he wake up happy. It's just amazing. He has a lot more attention for play now. He will amuse himself with his books and toys for up to an hour now! Before you'd be lucky to get a half hour. He also wants me a lot more. He loves his Mama. I hold him and he's totally calm.

It seems like before I could hold him and it would help, but he'd still be miserable. I thought and had been told that he was just a fussy baby, a "high needs baby". The truth was that he was in pain because his innards were jumbled. But you know what's the strangest part? I had wondered if everything was "where it should be" inside his torso. I even asked the doctor once at his 6 month check up, and she said yeah. She had no reason to think anything so rare was going on with him, and it's pretty hard to diagnose without a chest x-ray, so I can't blame her for not finding it. But it's so weird that I just kept wondering that since he was born. I mean, seriously, who questions whether or not their child's organs are in the right places? He sometimes had breathing problems, but the doc said he was healthy and that it was probably a virus or allergies or something like that. I just chalked it up to being a paranoid first time mother. That's what I've always heard about mothers who constantly question about the things their child is doing, and I didn't want to be unreasonable. FORGET THAT! From now on, I will absolutely trust my own instincts. I will trust my mother's instinct.

Oh, and he still is a feisty boy. He is still my child, after all. ;)

Off Tubes and Feeling Fine

On Saturday we got a room in the Ronald McDonald House. Since I'd slept with Jamie Thursday and Friday (while Michael slept in another room in the hospital) and didn't get more than a few hours each night, Michael insisted I sleep in the RMH that night. After that we switched off. Jamie had some bleeding through his NG tube. They say that happens when it's on continuous suction because it'll grab part of the stomach sometimes and cause it to bleed.



On Sunday, his pain was a lot better. He still had to have his meds on time, the morphine every 3 hours and the Tordal every 8. He was a bit more awake, but seemed unhappy and bored. I it occurred to me to play with him, and he played a little. It made him very very happy. And the nurse brought him a stacked rings toy that lights up when you up the rings on the pole (whatever that thing is called). He didn't smile or laugh, but he was happier. Respiration Therapy puts him to sleep and makes his coughs more productive. He had another bleed in his NG tube. I just hate that. Blood should stay in the body. Oh, and he tried to pull out his NG tube. I don't know what came over me, but the moment I saw him grabbing it, and it was out about an inch or so,I just pushed it back in. And then I wondered, "what was I thinking?" I just shoved a tube back in his body, and did I hit anything? Well the nurse came and checked it out and it was fine. And the doctor said the next day that that's all they would've done, and I should sign up for nursing school. :) We went to mass at one of the chapels and the priest was wonderful! He gave a moving sermon about looking to the cross (or crucifix) and giving up our burdens to God and looking at it not as a sign of suffering (as in Jesus' Suffering, or a symbol of our own suffering) but as a sign of Victory. It's a sign of Jesus' Victory over death, Victory over Sin, and it's a sign of our victory over death and sin and suffering and faith in God. It was something I needed to hear.




On Monday, he smiled! The priest who gave the sermon on Sunday came over and performed the Sacrement of Healing on Jamie. In case you're wondering, it's not "Last Rites", it's for anyone in need of healing. Just because it's also given as the last of all the rites doesn't make it only for the dying. He played a bit more, and during one such time, he looked over at the crib toy and smiled briefly. Such a beautiful sight! Later in the day, he even tried to laugh. He was allowed to have water in small amounts, and managed it no problem. He got a fever late at night and they gave him a Tylenol suppository which took care of it. They also did blood work to see if he had an infection either locally or generally. (The preliminary cultures came back today and so far nothing. The doctor, Karen West who is just fantastic, said it's likely a hormonal response to his labored shallow breathing.) He was also able to go up to 4 hours sometimes before needing his meds. His x-ray came back looking pretty good. His heart had moved over into pretty much the center of his chest. The left side is still thickened, but it looks healthy, as do the lungs. They continued with the Respiration Therapy every 6 hours, which he really enjoyed and his lungs continued to get clearer. He still mostly refused to cough because it hurt to much.



Yesterday, they took out his NG tube early in the morning, and he started playing with Michael right away. Around noon they took out his chest tube. And we got to hold him! It was the first time since I handed him to the surgical nurse for surgery, and it was wonderful! It was an even happier moment than when I held him after he was born. And he tried to stand up and move around, and was much more active and alert and didn't cry every time he moved or was moved. And with those tubes out, we didn't have to make him wear those no-nose arm guards to keep him from trying to pull out the NG tube. And I put a new sleeper on him. Much better than the hospital gown! He had more x-rays, before and after they pulled the chest tube, and everything looked good. No noticeable improvement over the previous day's x-rays, but he still looks good. The lungs looked inflated.

Today, he went as long as 9.5 hours between morphine doses! He's having a much better time with the pain, but now that he can move around and we can hold him and play with him more he gets a little sore from it. They also said he could have soft food, starting slow. He's tolerated it pretty well. The doctor said they might send him home tomorrow! Seriously! Tomorrow! We are a happy family. :) He's also back to flirting with people. It's been several months since he did that! Happy happy day!

Update 1:15pm Sat. 12 Sept.

He is more awake now since the anesthesia has worn off completely, but he still mostly just sleeps. He's having some trouble breathing so Respiratory is going to come down to give him some sort of treatment with percussion something or other. Yesterday they had to adjust his morphine dose so he could get it more often. Every time it wears off he gets pretty upset and wakes up. This morning he started trying to cry, but that hurt him, so he just whimpered. It was time for more morphine. They're also going to add Tordal (anti-inflammatory non-steroidal pain med like ibuprofen) which should really make him feel better. He had more x-rays and his heart hasn't moved over toward the center like it should, and his good lung isn't fully expanded yet, and the other lung is still partially collapsed. This morning is when he started having some more trouble breathing, which is why they're calling in Respiratory for some treatment. They said it would make him cry, which is what they want so that he'll cough this junk out of his lungs and dislodge other gunk. The nurse brought in a crib toy that plays music, much like the one he has at home. I gave him his blanket, put it in his fingers, and he grasped it and went back to sleep.

A Mother's Worst Fears Become Reality

So here is my Darling Boy. He had the stomach flu and just didn't stop vomiting. So I took him into the pediatrician and saw a new woman (only appointment we could get, but she is seriously awesome I may switch to her permanently), and she recommended admitting him for IV fluids. He was so dehydrated that it took 7 tries (7 TRIES!) to get the IV in. During the 6th try they were holding his arms and legs down but one of the nurses had her arm close to his mouth and he reached up and bit her. BIT HER! He decided that if the only part he could control and use to defend himself, then by God he was going to use it! Such a spunky boy! Thankfully it didn't break the skin. They took a chest x-ray. After asking about it, they finally said the doctor would come in to discuss it with us. The x-ray showed he had a Congenital Diaphragmatic Hernia on the right side. From birth there has been a whole in his diaphragm and his abdominal organs have been able to travel into his chest. It is a life threatening condition that is caused by a congenital defect which develops during the 7th to 10th weeks of gestation and survival is 80% with modern medicine. (Which means there's a 20% mortality rate, don't think I didn't see that!) What happens is that two "flaps" of the diaphragm don't grow together properly, leaving a hole, usually on the left side. This is often found during ultrasounds or diagnosed within days of birth. With Jamie, his ultrasounds looked normal, and he was very healthy and growing normally until recently and so there was no suspicion of a defect. They think that when he got the stomach flu, the pressure of vomiting pushed the organs up farther making it obvious in x-ray. Anyway, they then flew him to Riley Children's Hospital in Indianapolis by MedFlight helicopter so they could have time to stabilize him for surgery. We followed him by car, arriving 3 hours after he did. Surgery began at 8am and by 11am they had finished. So that was the faster end of the spectrum. I don't think I've ever cried to hard from relief in my entire life. Mama and Michael had to tell people I was crying happy tears. I guess I sounded rather devastated, which I was just from the whole "I could lose him" fear. They had no complications, no bleeding issues (no transfusion), the organs looked pretty good, the lungs looked better than expected, the diaphragm had enough of it's own tissue that they were able to just sew it up with adding anything to cover the hole. The liver, colon, lower intestine, part of the upper intestine, part of the stomach, and part of one kidney were all in the chest cavity. The lung that was compressed the most was partially collapsed. I don't know how much of it was working vs. filled with fluid. The chest tube is still in and the fluid is draining out. There is a bruise on the lower intestine, but it didn't look bad enough to remove, so the doctor just left it to see if it will repair on it's own. After the surgery, the lungs and heart had moved to fill 75% of the chest cavity, which is apparently super wonderful since sometimes the "squish" is permanent. His lungs don't seem to be underdeveloped, which is again amazing given the condition. They are giving him calories via the central line to help him gain weight and stay strong since he already lost weight and hadn't eaten in so long. Okay, he'd eaten, he'd just not digested. Small difference, I know. He is now on morphine every 3 hours. Every 4 was too far apart. His fluid output isn't matching input, which is probably him building up some lost fluids. His urine looks much better than before surgery, but it's still a bit cloudy, so we'll see what the doc says here soon. A lot of people have been praying for my darling, so please continue praying. I know it's greedy of me, but I still want as many miracles for his recovery as I can get. He is a brave wonderful strong courageous boy. We need him.

A Winter Sweater in Summer, and Some Pumpkin Stocks

I finished a sweater for Jamie a few days ago. I thought about blocking it, then decided to leave it alone. It looks good as is, and is an acrylic/wool blend, so blocking is only marginally successful, in my experience. So here is the front.
Here is the back.
And here's a closer view of the back. I'm also making a hat to go with it in simple rib and stockinette. I do have a pattern for a cabled infant hat, so I may make that one as well. This was a Dale of Norway pattern (17504 Cardigan), using Patons Decor Sand and Sea. The hat that I had done earlier (it was a bit too small) was really just too cute, but somehow the sweater falls short of expectations. I do like it, and I'm particularly enamored of the buttons, but it's not as cute as I had hoped. Mama loves it, though. It worked up very fast, and was very easy to do and carry around, so I'll definitely be doing more baby sweaters. I'll probably do this sweater again, but in a solid. I'd like to do it in 100% wool but I don't have access to much pure wool yarn. I'm seriously tempted to order some online, but I'm so picky about color that it'd be like gambling. Eh. Maybe I will.

I also finished my purple scarf. I adore it! Thank you Amanda for the the yarn! I used a reversible cable pattern (here) that was very easy to do, and to memorize. It's so soft, and has a nice thickness without being bulky.

So I've been working on doula training and attended one birth. Congrats, John and Julie and baby Tommy! He's a gorgeous boy and has a shocking head of luscious black hair! I've learned a lot, and will continue doing everything I can to learn more and get better. The one birth I attended was very hard, but very rewarding. It's my opinion that no woman should give birth without a doula. Labor is a very hard process, and it's very easy to get disheartened and stress out, which causes labor to be complicated and harder than it needs to be (oh, how life is like that, also!). Doulas provide much needed emotional and physical support to laboring women and their loved ones, and gives them the tools they need to voice their wants and needs to each other and to the medical staff. The nurses at Memorial that we dealt with were wonderful, and the doctor was, too, but we didn't deal with her as much until the end. It was really hard work, and after being awake for 29 hours on only 4 hours sleep, I was spent. I tried to eat and get some sleep, but it was too late, I got a massive migraine. It wasn't until the next day that I felt better. One thing was so funny. Michael came in to check on me and went to throw out something, and stopped. He picked up the knotted off trash bag and held it up at eye level, and looked totally confused. In fact his expression said, "Dear God, what is this?" As he stood there examining it, I tried not to laugh even in my near dead state. I told him then how I'd thrown up in the trash can and knotted off the bag so it wouldn't stink. His face was blank for a moment, then said, "Oh. Okay." And then he left taking the bag with him. I found that inordinately amusing, and still do. He's priceless. Poor man didn't know how sick I was until then. The image of him standing there holding up that plastic bag at eye level, totally baffled and trying to analyze the contents, not realizing he was holding a bag of vomit amuses me still. HAHAHAHA.

I bought some new bras today. SOOOOO sexy! I weaned Jamie for health reasons (migraine management), and so now I don't need to wear the nursing bras and I don't leak anymore. I wore nursing bras or sleeping bras (a looser sort of athletic bra for nursing women) constantly, just as was recommended by the books to reduce sagging, and I my breasts are just as perky as before I had Jamie. Even so, when I went to Victoria's Secret for a fitting, I was prepared for a change, and there was a difference. Before I had Jamie, I was a 36-D, and now, at the same weight, I'm a 34-D. Yep, I'm a happy woman.

Tomorrow is our one year wedding anniversary. It's hard to believe! Two years ago Michael and I hadn't even met. One year ago we had our family and friends come together to witness our vows before God. It was a perfect day. Now we are happy and having a wonderful time together. I am even happier now than I was then. Even when the man annoys me, he is my perfect match. It's amazing how we fit together. We have so much fun just being together, just hanging out. Actually, if he didn't annoy me sometimes, I'd think he was too good to be true!

Well, sorry for the long rambling post. I know it's been a while, and it's light on crafting content, but I've been very busy. Child rearing, research, family life, doula training, the Diamond Rainbow quilt, Tommy's Garden Wall Quilt, my Garden lap quilt, Jamie's sweater, my purple scarf, three baby afghans, my first socks, etc... And so I leave you with photos of the growing things which Michael has tended so well this year.

Lots of Handi-Crafts, Lots of Work

I've been working really hard lately on pretty much everything. I got a new computer (Macbook) and spent a great deal of time setting up all of my work programs, and I still have some more to do, but it's basically up and running. I've been doing lots of research and trying to read papers. I'm notoriously bad at keeping up on all the latest publications. But enough about work. I finished the baby quilt/wall hanging for my friend Julie. Bridget and I hosted her baby shower on Saturday. I tricked her though. When I presented it to her, I showed her the back.



She said how cool it was, and I said, "Oh, wait, there's more." Then I showed her the front.


She liked it so much she almost cried.


And here is a gratuitous photo of my Jamie.


It's a weird photo, but it's from a project we're doing, and he just looks so happy. It's a great one of him. He has two teeth now, and still hates to sleep. He's finally letting me put him to sleep at night. Okay, it's worked exactly twice and both times were tonight. But the second time I put him down, he went a lot faster and without so much fussing, and no crying. No crying is a MAJOR improvement. Seriously, the boy hates to miss anything and wants to be in the thick of it. Anyway. He discovered the computer a month ago and LOVES it. Given any chance he tries to type on it. He bangs on the keyboard, and then looks at the screen. Seriously. It just blows me away. He knows the names of things and responds to verbal cues. Today, I said the name of his favorite toy, and he smiled and looked over at it. This whole learning thing is just too cool.

I've been knitting when possible. (HA! Like there's time for anything that isn't work.) I finished my first sock. Now on to it's mate. No photos as yet. I have the suspicion that if I take a photo of it and post on it, I'll never finish it. I have superstitions already. I really liked making it, though. I'll be making more. The main problem is the shortage of sock yarn in the area. I'll have to go into Chicago to find any sort of selection. I've also been working on my new winter scarf. I have photos, but they're way old and I've posted them before. And no self respecting blogger would repeat post. ;)

Happy Mother's Day

Happy Mother's Day!  This being my second Mother's Day (first if you don't count when I was pregnant, but I do so there!) I was again reminded of all the hopes and joys and fears I have for my son as a human being and for myself as a mother.  These hopes and joys and fears are the same that mothers throughout human existence have felt, and so it's really nothing new.  I shouldn't worry about the things that could go wrong, because no matter how good a mother I am or will be (I'm counting on getting better with time and experience) I will screw up and scar Jamie in some way.  I know that there are things beyond my control, but I hope I get to see Jamie grow up, and I hope he gets to grow up.  But again, I worry.  My imagination is too creative sometimes, and parenting websites and magazines are just fodder for my worst nightmares.  In the end, all I can do is love my family, enjoy my son and be the best mother I can be, and pray that God will take care of the things I can't see.  AND STOP TAKING EXTRANEOUS SHIT SO SERIOUSLY.  

On a lighter note, I passed my oral exam and now have a Master's Degree.  Because my exam occurred 13 days past the deadline for May graduation, the date on it will be 2009.  2009!  Officially the conferment date will be in January.  Okay, seriously, why is the December graduation dated in January?  Okay, whatever.  I'm over it.  I was so worried that I would fail.  I'm so paranoid.  But in the end I passed after only 10 minutes of discussion, part of which was about whether or not some members of my committee were interested in helping us do some observations.  My friends Julie, Trevor (yay, Dr. Trevor), and Tam were there during my exam and I'm very grateful for their support.  Those in the outer room during the exam heard occasional laughter, and figured things must have been going well.  They were.  While we waited for the decision to down from on high, we heard laughter.  And I knew I had passed.  :)

Five days before my exam, my computer decided to start acting up.  I couldn't start up the linux partition and Knoppix couldn't access it to recover any data.  Totally scared me silly.  Then, very mysteriously, it decided to load up normally.  *head banging hard on the table*  So I was able to get all that I needed for my exam.  But I decided it was time for a new computer.  And so I ordered a macbook.  I like that I can do my command line coding without separate partitions and I can still have Word, Excel, and PowerPoint.  My macbook arrived on Wednesday, and I've been in love with it ever since.  I just LOVE not having to go back and forth between partitions, but I do miss the games that came with RedHat.  Oh, well.  I had quite a time getting a fortran compiler to work on here, and then I had trouble with a mysterious error that I had seen before that no one was able to fix.  So I handed the computer to My Darling, and said in a piteous voice, "Fix... it... Please... fit... it..."  And he did.  God I love that man!  He has a sexy brain.

Okay, now on to knitting!  I am still working on my first pair of socks.  Or, actually, I'm still working on my first sock.  I'm about to do the toe.  I have very little knitting time, but I take it with me where ever I go so I can try to get some knitting done everyday.  I'd go nuts otherwise.  I still have Jamie's sweater, Mama's scarf, and my scarf ready to work on, but with Jamie, research, pumping breastmilk all the damn time, and doing doula training, I am very very very busy.  And loving it!  Mostly. 

Jamie is eating solids now.  If you call baby food solid.  They're really just thick liquids.  Anyway, he loves solid food.  He's had carrots, peas, and a little bit of potato.  And he is trying hard to get up and walk around.  He'll just frantically move his legs back and forth like he's walking when you hold him on your lap.  He reaches for things all the time now, and rolls over consistently.

Jamie still fights sleep like a demon.  Some nights he will let us put him to sleep without a problem, and other nights he screams no matter what we do.  Rocking, walking, bouncing, singing, reading, feeding, breast feeding, etc.  Usually it works best to do several at once, but sometimes he just screams through it all.  All I can do is try to be consistent and comfort him and soothe him.  Oops there he is now.  I'm off to soothe the savage infant whom I love more than anything else.