Whoops March 23, 2010

My goodness how time has gotten away from me! I had no idea it had been so long since I updated this place.  I dont think anyone has missed much, what with my facebook page and my other journal.

Once we got home, we had many many doctor visits to deal with. We had the stomach issues, which DID turn out to be a dairy allergy, and then both the baby and I had the whooping cough (of all things!), and basically the whole first 3 months I just felt like I was on a merry go round spinning way too fast.

Then, when I finally got my feet beneath me, I finally felt solid again. And, solid often means boring, which is not a bad place to be.  What I didn’t have time to do was sit down and string a few sentences together to make a coherent paragraph, let alone do a whole post about anything. I was lucky to have a complete conversation with Keith without being interupted and having to strain to regain the thread of it afterwards.

We are now past the half-year mark.  I have adapted mostly to living dairy free for Evan’s sake.  I’m still nursing him despite our still having difficulties.  I have a really good barometer for knowing if I’ve had even a drop of dairy–besides the return of green diapers, he clamps down and pulls when he’s nursing. Nothing like negative reinforcement for dietary vigilance!  I have found a non-dairy substitute for most foods I crave, except cheese.  I finally found some really good rice milk chocolate bars even–Score!!

His temperment is evening out some the closer we get to having a good sleep schedule. That has been a long process as well, but he’s getting there, after many months of him not sleeping more then 30 min at a time.  When he’s not being held (which is still pretty often) he is content at one of 4 “stations”.  He still enjoys the swing, a blanket on the floor with toys (for tummy time and rolling around), his exersaucer, and his johnny-jump-up which he’s gotten the hang of pretty well.  He also just started sitting in a high chair with us at dinner and we are able to all eat dinner as a family again. He seems much more content to just sit and be a part of things even though he’s not on solids yet.

He’s around 15 lbs and getting nice little leg rolls. His hair is long enough now that it no longer sticks up funny. I would still call him high needs, esp in comparison to Alex and Emme.  He still favors Alex in looks and physical things. I highly suspect that he is SPD of the form that Alex has (seeker).  He does not show any mirroring at all, which is a blessing!

As for the rest of us, it’s been a slow winter for the farm, although we did have hens that started laying so we are able to sell our fresh eggs here and there.  Nick has improved his grades tremendously, and Alex continues to thrive academically. He is nearly finished with third grade work and I’m having to find stuff to keep him busy. Emme loves preschool and has finally agreed to try being at home next year so that we can continue to take trips during the week and spend time together.  Once I told her that her best friend was not going to her school and that they play much less at kindergarden then they do at preschool, she decided she’d rather stay home with me anyway.  She’ll still see her friends thrice weekly at church and will take co-op one day and have gymnastics, so she isn’t going to want for social activities!  If Co-op doesn’t offer a ballet class, we’ll probably pick that up too. She just had her birthday, her first party with friends at a shop in Johnson City that was like Build a Bear. She loved it, and I didn’t have to party clean, so it was good for everyone!

Keith’s health remains as it has been for a long while, (good days and bad days) although he is discovering that at least some of his headaches are migraines and do respond to Maxalt when he can get some. His medicare does not cover this drug, so he has to ration out the samples he can get from his neuro. He has good days and bad days and more bad days when things get stressful. His mental functions decrease under stress as well, and recently I made the analogy of his brain being like a cistern. It can only hold so much information and when he needs to remember a lot of things or concentrate on detailed things that cistern fills up and any additional info will just spill out and be lost.

It took a long while for me to recover from the whooping cough. My voice is not the same and I’ve had to drop down to singing alto in the choir. Last week was the first week for that and its going to take some doing to retune my ear down.  Other then that, I don’t have much to report on myself.  I am out of crisis mode and into the day to day job of holding all of this together.

We are looking ahead to the coming market season and planning and planting. We have 25 chicks due to arrive next week. We are not planning to keep all of them, but that was the minimum order. We’ll just sell some of them outright we hope.

Hopefully that brings it all current.  No telling when another post might come, my life really is not that interesting at the moment.  I had hoped to get 6 mo portraits done, but my photographer friend has moved away and now I don’t know where to take him.  When I find something, perhaps that will become a post.

How’s Little E? October 24, 2009

Well.  He IS cute, anyway!

Evan is very high needs.  I believe this to be mostly due to near constant intestinal distress.  I am not positive what it is that is causing his stools to be abnormal for a breastfed baby, but he has diahrea, green stools and has had blood.  The stool sample we sent in came back “negative”.  Don’t ask me to clarify that, I have no idea what that means.

An internet search has pointed me in the direction of food allergy, most likely dairy protiens. Dairy protiens are in nearly everything and it’s been an adventure (to put it nicely) for me to try to adjust my diet so drastically.  It takes 2-3 weeks for the proteins I’ve ingested to clear our systems, so it will take at least that long to see improvement.  Just when I think I’m doing everything right, and I think his stools look better, then he gets a bad day  of fussiness and a bad diaper or two and I realize taht I’ve tripped up somewhere and the 2 weeks essentially starts over. It’s discouraging to say the least.

I had hoped that changing my diet would help, but over all, it has not. I’ve decided to try to get in to the ped next week if possible, even though I’m sick to death of drs appts.  At his age, the only way to determine an allergy is by elimination, but I want to see if there are other tests that can be run, or if there is some medication that can heal his gut faster so as to stop the bleeding.  My fear is that he is allergic to other things as well like eggs or wheat and THEN what will I eat?  I’ll have to go vegan I guess .

He seems to get the correlation that eating causes his stomach to hurt, so most feeding sessions are a battle. He knows he’s hungry, but he knows what is going to happen if he does eat so he’s not too keen to do it and often is just fussy and refuses completely.  WHen he does this, I have to put him down or hand him off and pump a bottle which he will then take pretty well and then spit 1/4 back up.

As I type this, we’ve had a rare relaxed normal feeding session that is a huge relief and a nice way to end a very bad day.

So if you’ve wondered where I am, or when I would update, I can tell you.  Attempt to feed, swaddle, change, rock & wrestle. Lather, rinse, repeat from 7 am until 9 pm when he goes down for the night.

But he is really cute, even when he’s wailing.

New Day September 24, 2009

Updates will have to be short and to the point now, as well as probably infrequent. (sorry!)

Our first day home was predictably rocky. It always is, no matter how many day’s old the baby is!  Evan had his first day of homeschooling in his class Breastfeeding 101.  He’s a faster learner then I anticipated as he is MUCH improved today. He is also more awake today which is making a big difference in his feeding. More teaching opportunities! He’s no longer needing supplementary bottles–a good thing.

My pain levels are much better today as is my stamina.  I am beginning to feel a bit more human.  We all slept well last night which made a big difference for us all.

Keith is out on the tractor, quite happy I bet to be doing something more within his norm.

The church has brought us our first two meals last night. They are AMAZING. Wow.  I don’t know how those without a church family manage it, quite honestly.

Evan is bigger then some of his cloth diapers and outfits!  I had one special diaper I was saving to put on him first (as soon as his stools changed to yellow) and it nearly didn’t fit! How disappointing…and then he promptly dirtied it within the first 5 min, so there goes that!

Off to try to wake and feed, just wanted to give a quick update!

Wheeee!! September 22, 2009

We’re Going home!!  Hooray!!

picture September 22, 2009

So much…. September 22, 2009

The “dailies”

Evan is fine. Really.  And, as his dr points out every day “too big to be in here”.  We were told that his chest is totally healed–”don’t even worry about it”.  His bilirubin did not change since yesterday. His platelets did go down a touch, but that could just be a lab variance.

On more then one occasion over the last two days I have asked about having his fluids cut or stopped so that he would nurse better. I was told that they would discharge once they saw how he was feeding. Well, when he’s interested, he does well–but he’s not very interested because he’s being supplemented with fluids.  Finally, today someone listened and they did change him to plain saline and turned it way down. His feeding frequency is improving dramatically.

They also wanted to run another platelet count in the morning to make sure that they were still climbing or holding steady.

Personally, I feel these are poor reasons to keep him in the NICU, when he’s doing so well.  I placed a call to Dr. Fuller (who cared for him at the hospital in Greeneville) to see if he would consult with the dr here and get him to agree to let us go home today and monitor the platelets and bilirubin from Greeneville.  Dr. Fuller did make that call, and Dr. Devoe told him that if things continued as they had been, he was planning on releasing us tomorrow–which is not what Dr. Devoe told us when he was here for rounds.

So while I won’t get to wake up in my own bed on my birthday, perhaps I can at least be home.

9/20/09 September 20, 2009

1:14 pm

All quiet here in the NICU.  The children have been for a visit and met their brother. He was completely unimpressed with them.  They were a bit more impressed with him. Emme, in particular seemed in awe. She just stared and stared, not saying much.  I can tell that Nick is wanting to hold him. We are going to wait until we’ve gone home for that.  They are now going to stay at Nana and Papa’s here in JC until we are released.  Their house is about 2 min away from the JCMC so it will work out well.

Evan Ryan has no further tests planned for today.  Everything that was done over night and this morning is looking very good, with the exception of a little jump in his bilirubin–which is still well within normal limits. I tried to speak to both the dr and the nurse about our kid’s history of bilirubin, and tried to impress upon them they might want to consider being more proactive with treatment, but that was met with resistance. They aren’t going to check again until morning. I hope they have not seen a big jump. I don’t want to have to say I told you so, and I don’t want to have to stay extra days to fight the bili numbers back down or go home on lights again.

He’s a pretty chill little fella.  He is content to lay in his layette and even if he is awake he is able to drift off to sleep. I hope this is  a skill he can maintain.  He seems to have some trouble with reflux, so I guess that makes him officially a Foster boy.  As long as he is not being messed with, or he needs to burp, he’s pretty content.

The dr that came in today anticipates him being here through tomorrow, and possibly discharge on tues.  That would be all the birthday present I need. I am soooo ready to go home and sleep in my own bed!

Keith is pretty tired and stressed out with the logistical things that I usually manage. THings like packing for the other three, and coordinating animal care at home, and dealing with the childcare aspect, and handling phone calls.    He needs to relax, but I don’t think he will until we all get home safe and sound.

Well, little one is waking up. I”ll go and try to feed him.  Things are slowing down now, so I probably won’t be updating nearly as often.

9/19/09 PM Report: Nothin but good news! September 20, 2009

What a wonderful evening I’ve had! We were able to come to JC and are now staying in a private room with Evan.  His chest tube is gone, and we are holding and nursing and everything!  I even am able to get on Facebook and have just uploaded a new profile picture on my page.

He latched on immediately and nursed right away.  We had several sessions and then after his vitals were checked and he got changed, he had a really good feed and then has been sleeping for over two hours. It’s my understanding that’s a record. They say he’s been unhappy and fussy the whole time–I’d say so when you’re separated from mama and getting only fluids via a stomach tube. I’d be unhappy too!  We all have a sense of “Aaaaahhhhh” relief!  Even my pain has been relieved by the balm of getting to hold him and snuggle to my hearts desire. I definately still need my medication, but the breakthrough pain is much much less.

We are still awaiting some test results. We’ll have to wait for the dr in the morning. I am hoping they will see how well he is feeding and let us go home tomorrow night.  Earlier today, they said Monday at the earliest, but that was before we started nursing him.

We hope to bring the sibs here tomorrow if we don’t get to go home.

09/19/09 September 19, 2009

11 AM

We have spoken with the nurse at JC twice this morning. Evan is still doing very well. He will be having another CT scan, this time on his kidneys to again rule out any internal bleeding. I am sure this will be negative as well, as was his head CT from yesterday. The hole in his lung appears to have sealed, his chest x-ray this morning showed no air in his thorax.  They will turn off the suction tube(but not remove it yet) to  make sure that there are no leakages.  They have not yet written orders for feeding, but will let me know right away if he gets to feed and I will discharge then.  So far his blood platelets are at 120000 (this is since the transfusion) they will check it again at 3 pm. So far he has not needed the IVIG as yet.  THe OB wrote orders both ways for me, so it’s my decision. As soon as I can hold and feed him, I will go, but if not, I will stay in the hospital as long as I can. My body is still really really hurting and the pain meds really only take the edge off.  The idea of leaving and having to do things like walk further then a few feet overwhelms me.

Nana Brenda reports that after his bath, you can see that he really does have blond hair. From the descriptions I’m hearing, sounds to me like he might just look the most like his Papa Allen!

I do have a few pictures that are not very good because of the paci, but I’ve been asked to post them anyway. We’ll try to get better ones up as soon as we can.  They are small, but if you click on them, it should load up on a separate page. If they don’t work at all, email me or comment and I’ll figure something else out.

3 am:

I was awakened by the nurse, and decided to pump while I was up.  Pumping does not go well, I am not very good at it.  I am hoping to be with Evan later this afternoon and maybe even get to try to nurse him.

Keith came by about 11, after having sat with E a while.  He said he is very strong and acts just like normal.  He is not in an isolette, so we can touch him as much as we want unencumbered. Brenda (MIL) was with them as well.  She thinks he resembles Nicholas, and K thinks he reminds him of his own baby pictures. He has deep set blue eyes and sharp cheekbones, which does sound like Keith. His coloring might be like Nick’s though, they say he has light brown hair.  Keith says he has big hands and arms and looks pretty strapping. He did take a couple of pictures, but he has a huge paci in his mouth and they don’t really show much of his face.  He must have the paci so that he does not damage his chest tube with crying, despite it causing one more hurdle to get over to get him to latch properly.  It is a very good thing for him that I am such a good LC because we will likely have a long road ahead of us.  Keith said he is rooting and acting hungry and like he wants to latch which is terribly hard for me to hear.

It sounds like things are going along well for him in JC. He just needs to heal up that hole. Everything else he’s ticking down the list and getting resolved.

Another battery of tests in the morning will tell us a lot.

I forgot how the second day is worse. Much like being in a car wreck, your body really feels it the second day.  I am glad I didn’t discharge last night and go to sit up with him. I am not as young as I once was when I did that for baby Nick. However, his birth was not as physically taxing either, so maybe it’s not just that I’m getting older.  I don’t have much edema in my legs or feet like I”m used to.  Its nice not to have to look at that anymore.

The food is predictably terrible.  I am promised my lobster pizza from RL tomorrow, made easier since we will be in JC anyway. (we don’t have red lobster here). Having one post partum has become a bit of a tradition, as that was all I wanted after having Emme and her hospital was right across the street from RL.  I don’t know that I’ve had one since, but I love them.  I will probably just have Keith bring me breakfast in the morning.

I’m rambling.  I meant to only come on to say thank you for all of the well wishes. Sitting and reading emails while pumping in the middle of the night may not be the best timing, but thank you. Knowing that was have friends, family, and a great network of strangers all over the country praying for us is an overwhelming and amazing feeling.

I’ll update again after I talk to the dr’s.

birth update September 18, 2009

Evan Ryan Foster 9-18-09 8 lbs 12 oz

8 pm:

I have recieved a call from the Dr in JC.  Evan has been breathing on his own since his arrival which is great news.  He is currently getting a head CT to rule out a hematoma that might be causing his platelet problem, but based upon Emme’s history, that’s likely to be negative and all of this is somehow genetic. He and I discussed a meeting with the hematologist at a later date so they can tell me exactly the cause. It was never figured out with Emme, so it will be good information to have.

When he returns from CT, he will get his platelet transfusion. If that does not make a difference, that is an indication that his autoimmune system is attacking the cells and he will need the IVIG (Which I think causes the platelets to bind to the blood better, but I”m not sure if I’m explaining that right)  Emme also had IvIg, and it seemed to fix the problem relatively quickly.  Based upon my experience with Emme, I feel certain this is going to be cleared up with not a lot of problem.

So we are working our way down the list of problems.  His blood gasses have been fine since it was touch and go here before he left,so that seems to be resolved. The IVIG I am sure will resolve that, so other then that, we’ll just have to wait for the hole in his lung to reseal and we’ll be in business. I let the dr know that it is extremely important that the baby not have bottles or formula and he said that was no problem at all. He may be stable enough in the morning, they will let me know right away if so and I will push for discharge as soon as he is ready and get myself over there to nurse. In the meantime, they will continue with IV fluids only.

I’m having quite a bit of pain myself if the meds wear off. I am going to wrap this up and go to sleep soon.  I don’t think Keith has slept at all, and he’s planning to drive home from JC and spend the night at the house so he can take care of the animals in the morning. Please pray he gets a good nights sleep as I know he’s not slept well the nights previous and has been up more hours then I can count. When he doesn’t sleep or eat properly he gets his really bad headaches, and it would be a bad time for one of those for sure.

I will update again if anything changes.

__________________________________________________________________________________________

It was an extremely rough labor. THe worst I’ve ever had, and even the MW, who has been practicing over 20 yrs said it was bad. IT is likely her last delivery before retirement, and we comment that it’s not really a good note to end on. At some point, you’ll get the whole story.

Evan is in serious condition at this time. He has been airlifted to the nearest NICU which is in Johnson City. He developed a hole in his lung which created a neumothorax. He has a chest tube. I saw him for about 15 secs before he went to the nursery for care, and then for about another minute or so before they airlifted him out. I have not held him or nursed him, and I will not be able to until sometime tomorrow at the earliest. Other then a cleft lip or something permanant, this is just about the worst case scenario for nursing.

He also has other issues. His blood gas levels were dangerously low, at one point he was in critical condition and near death. There is a possibility of brain damage, although the pediatrician is optimistic based on how fast he recovered. He has the genetic issue with his blood platelets like Emme had, with his platelet levels being around 8000. He will require an IVIG and a platelet transfusion. He will likely have jaundice, but right now that is the least of his concerns. Now, the good news: Other then the chest tube, right now he looks like a normal baby, as far as his movement, behavior and color, so that is good. He will not get anything other then IV fluids until the chest tube is out.

I’m having an extremely hard time emotionally to be honest and thinking about what a disaster this all is really makes me want to lose my grip. Keith has just left to be with him in JC, and I am going to be here alone until tomorrow. I think that is ok, I’m in no mood for small (or large) talk anyway.

We ask for prayers for a speedy recovery so that I can hold and nurse my blond headed boy.

there are no pictures at this time.