Happy Birthday to my precious Ilse Joy

Today was Ilse's birthday. She is a big one year old girl now. She and I had a strange kind of day together. I think she knew that I was having a very hard day.... just from remembering last year. Truthfully I have been having a very hard couple of weeks. I hope it will right itself after today, but I am betting I will be emotional all the way through June 3 or so, since last year that is the day she got to come home. Tomorrow will be the day she was transferred to Med City. I still have a voicemail saved from Kara of the transport team. The Sixth will be the day I escaped the hospital without a baby in my arms and crept slowly up to the NICU at Med City. The Eighth will be the day I got to hold her for real the first time. I am so thankful I have a video of me holding my precious Ilse for the first time. (I don't count in the OR.) It was mother's day last year, but I don't claim that as my first mother's day. It was way too awful. This year is my first mother's day. The dates march on, each with its own significance-- the day Tim suspected SLOS and convinced them to test (boy was I mad at him), the day we insisted on egg, the day we agreed to the surgery, the day (our anniversary) that we had her surgery. What a horrible day. That was the day the nurse told me that Ilse was just going to be in pain and cry. Then, finally, June 3... The day we brought Ilse home. We stopped three times or so on the way home to make sure she wasn't barfing and choking on it. So many memories. This year we will experience many changes. My bottle washing days are about over, since tomorrow we will start transitioning Ilse to her new food. It has a twelve hour hang time, which means I can put the boys to bed, start her food, put it on interval feeds, and then *go to bed.* No more staying up till all hours to get all the food out of the bag so I can add fresh. No more setting my alarm to get up to turn the pump off so it won't feed her rotten milk..... And then there are the times I am so tired I don't even hear my alarm and do feed her the rotten milk... Whoops, I have done THAT three times already. Yuck! Soon, no more. Ilse will also be getting a new therapist, and hopefully will be having physical therapy two to three times a week after that. Ilse needs to learn to sit. We had a party tonight for Ilse, and the game we played was called Ilse's Stats. People had to guess which category went with which number. Jess got nine out of nine correct. Unbelievable. Hyde, or as Luke says, Hyden (lol), got eight out of nine, and the numbers got worse from there. Some people got none right..... Hahaha. Here are the stats for your marveling and enjoyment. In the last year since coming home from the NICU... At least 41 hours of driving to and from doctors appointments. Doctors that have a large part in Ilse's care... Not including NICU doctors.... 10 2 soon to be 3 therapists. (again, since the NICU. She had two in there.) 6 ER visits, 1 of which resulted in a hospital stay. 330 food bags. 25 lab visits where we actually got blood. 2 surgeries. 70 driving hours during the NICU stay, and we only counted the 26 days I did the driving. 5 kinds of insurance. Wow. This year, Lord willing, will be much MUCH different. For starters, tonight I am not strung out on mag and I can go see my baby any old dang time I want. And I can touch her without gloves. And she won't be alone these next two nights like she was last year. This year she KNOWS her mommy loves her and she KNOWS I am always there for her. The Lord deserves all the praise and honor for this year. He has taught us so much, some of which we learned kicking and screaming. That pump was awful at the beginning.... On June 3 last year I sat in Ilse's room and cried because I couldn't get the pump to work and (cue crying wail) *I can't even feed my own babyyyyyyy!!" Not this year. Ilse now weighs 15lbs., 2 and a half oz. She is not starving usually. Just today when I accidentally fed her back pack when we were at party city.... Happy, happy, happy birthday, Ilse Joy. Your mommy loves you very much.

Yes, that happens at my house: Confession Time

Ilse is a barfer. That's just all there is to it. It was a moment of priceless forethought and intelligence when I decided to buy her two mattress pads. Nevertheless, I don't always have one clean and neither do I have time to wash it between her naps. There is just too much laundry. Ilse creates an unending stream of barf laundry. During the night if she barfs, I don't take her sheet and mattress pad off her bed. Instead, I pretend we live in the middle ages and just cover the barf up. Of course, I don't put reeds on the floor, I am talking about using blankets to cover the barf bed. Sometimes there are four (or more) layers of barf covering blankets, burp rags, and water proof pads on Ilse's bed. And if she barfs again, I just add more, until we either run out of blankets or it occurs to me that it is way past time to change Ilse's bedding, and maybe it has only been two days or so. And then my husband goes to help me change it and says, "this is moldy under here." Yes. That happens at my house.

Confession Time

I was just emotionally able to take down the formula instructions for going home from the NICU from where I had posted them in the kitchen. I have wanted to for a couple weeks. I would think I was ready, but then by the time I could get over to the cabinet to pull them down, I had lost the nerve.

I also took down the sweet sticky notes my sister Ellen brought with a meal.

Some hurts take strangely long to heal. Why were those things so difficult to take down? I haven't used those formula instructions beyond the first month or so that Ilse was home. They were terrible instructions.

Maybe I kept them up there to remind me of a few things...

Like, don't be arrogant. Why (?!?!) did I have the dietician give me formula instructions in grams instead of teaspoons? Because I had a scale and I wanted to be exact. Arrogant.

Like, how hard it was to get up in the night and pump, mix a stronger dose of milk, clean up barf, stay awake with a screaming baby and not know what to do, be angry at Tim because he was asleep... :)

I don't know. Taking them down is a definite sign of healing. My baby is almost a year old. It is time to let a few things go. I have systematically been making piles of clothes to hand to baby Livvie, and if I keep the piles around a few extra days instead of rushing them out the door, I inevitably find myself able to add clothes I previously had decided to keep as memories. That nightgown that I bought especialy for Ilse.... I had Marcus bring it to the hospital thinking we would dress Ilse in it and come home. She was never able to wear it, but more than likely little Livvie can, and now I am ready to pass it to her.

Healing comes at the strangest times. Maybe it's when God thinks you need an extra dose of His grace and mercy. Maybe that's when He takes some pain away. Maybe all the pain will never be completely gone, but this is certain, cuddle time with Ilse is more important to me than time spent organizing her old clothes or even pumping milk for her, even if the loss of those things hurts just a little.

I am a recipient of God's generosity on a grandiose scale. His gifts never cease to amaze me, even when the gift is something as simple as the ability to take down formula instructions.

He is an amazing God and He heals all our hurts in His own time.

A toof!

My baby is a big girl today.....

Ilse has been abnormally fussy today, and I just thought that she was tired since she was awake in the night, and she didn't want me to touch her button, so I thought that her tummy might be hurting too.

And then, lo and behold, I looked in her mouth like I have many times lately as I asked her, "do you have any toofies today? Doooooo you have any tooooooofies today?"

And she does! A tooth has come through and is super sharp and....

I lost it. My poor baby! She is growing up!

The boys didn't understand. Christopher remarked that she needed to get big so she can play in the yard. And so she can play in their room with them.

I tried to explain why I was upset. (I don't know why I bothered.)

"She won't cuddle with me anymore when she is big!"

Tim tried to comfort me reminding me that she might not ever be able to move out. Friend of Job.

Christopher also didn't care how sad I was. His perspective? "She's going to need a bigger bed."

Wahhhhhhh :(

Here she is after some Advil and gum numbing medicine.

On second thought...

She looks like she's wearing a turban.

Lol.

Bows!

I decided recently that Ilse needed some super cute bows, and when I went to look for some, I was quite disappointed. So I decided......

Make 'em yourself, Emma!

So I did.

I am going to make a different kind as soon as I can figure out how. By these, in my opinion, certainly make the grade for super cute, and they will look adorable on this little Ilse.

Healthy Living, Clean Living, Regular Living

Tim and I decided earlier this year to live in a more frugal manner, and for the most part we have done really well. I no longer plan to get a Starbucks drink the fight before I am going to drive by that well beloved place, and now, if I am going to get a drink, sometimes I forget and pass the joint. That always give me a bit of a happy feeling, believe it or not.

I have recognized the same old problem with myself, and I would bet that it is a human wide problem. The more tired or stressed I am, the more I waver on my commitments not to eat out and not to grab a coffee. The number of nights I get up in the night to feed my baby is directly proportionate to the likelihood that I will go to Starbucks on my way home from taking Tim to work.

That is a terrible failing.

Because of this failing, the last couple weeks have not been a boasting point for me. Not that I should last about it anyway, and I am not, but for sure these last couple of weeks I absolutely cannot boast. No reason for boasting here.

What I have been doing well at these last few weeks is my housecleaning. I have rearranged my room and that always involves a good old fashioned clean up and and clean out. We aren't done with it because we have just both gotten so incredibly tired. I have wondered if I have Parvo or something since I am so achy, or maybe I am just spending too much time on the floor with Ilse. Whatever the cause, we have been too tired to finish the room, but it certainly does look nicer.

I also cleaned some blinds, mopped some (very) dirty floors, and have been keeping up with my laundry. I am very happy with how all of that is going.

I have also been spending a lot of time teaching the boys some things we have been quite lax on, like how to respond to a question about something they did. The answers tend to involve other people, like blaming parents or each other, and we are working on having them begin their explanations with the personal pronoun 'I' and not use anyone else's name in the explanation. Adam and Eve would have benefited from that lesson, so I want the boys to have it. Their wives will appreciate their ability to take responsibility, too, I am sure.

We are also working with one son on the difference between trying to be bad and not trying to be good. (I know the words bad and good in relation to children aren't very popular, but there's no getting around it, sin is bad and no sin is good.) This one son doesn't try to be good. He thinks he lives in do-whatever-he-wants world, and he doesn't care if it is good or bad. If he wants to do it, he will. I had a long talk with him today on how important it is to be an active obey-er instead of a passive naughty boy. He needs to TRY to behave. I think this road with him is going to be very long.

Update:

Last night I broke down and took some ibuprofen for my aches, and I feel so much better today! Hopefully this will be a day of getting some good things done.

All in all, we are happy around here, and we are waiting on the doctors appointment for Ilse's blood. Hopefully that will be soon.

Good and Bad, Happy and Sad

Today was a day of happy moments and also sad news. I am really struggling since the bad tends to overshadow the good. My poor, poor little baby.

First the good:

Today in therapy Ilse ate squash, off a spoon. I punctuate it that way to give the words 'off a spoon' the weight they deserve. That is huge. We started Ilse on just tastes of milk when she was in the NICU, and she didn't do well. Her upper lip would turn dusky, which told the hospital OT that Ilse was struggling to keep her O2 sats up when she had something in her mouth. We progressed from tastes to drops of milk, to small syringes of milk, and then to trying a spoon. She couldn't do the spoon without horrible gagging. Then we tried letting her eat off my finger, and for some reason she didn't gag that way. Then today we tried a different spoon, and she ate squash off it. She ate squash off a spoon. I am so praising the Lord about that. It is truly momentous for a child like Ilse to eat squash off a spoon.

Also in therapy today Ilse sort of sat. She actually totally sat! Our therapist put Ilse's legs a bit bunched up, and leaned her forward resting on her arms, and Ilse sat that way, leaning forward on her hands. She was sitting on her bottom, leaning forward on her arms. Amazing.

Furthermore, Ilse decided today that she would put weight on her forearms in a crawling position. Ilse participated today to be able to do all of this! She didn't hang her head during her therapy today at all. Usually she just hangs her head, won't talk, won't smile, and won't participate. But today I guess the Lord knew I would need some encouragement.

The bad news is that we got the results of some bloodwork we had done on Monday, the day of upwards of ten blood pokes and horrible bruising. While Ilse's metabolic panel came back normal and her cholesterol is up ten points (YAY!), her immunological testing came back all messed up. I believe what the pediatrician said is that Ilse seems to have an IgG deficiency. I confess, when I heard what she said next about bone marrow and a hematologist/oncologist, I had a hard time remembering the exact word that went with IgG, but deficiency is really the only word that makes sense. They are referring her to a hematologist/oncologist for a bone marrow biopsy, because the blood testing has gone as far as the immunologist can take it, and now deeper testing needs to be done. I know the doctor stressed the fact that Ilse is going for the hematology side and not the oncology side, but the minute I heard those words my heart just got so heavy and I cried. My poor little baby. If they have to actually do that biopsy, she will have to be anesthetized which likely means an intubation, which any SLOS mom knows could result in oral aversions, which is what we have been working against all this time. That made me cry. Thinking about a needle in my baby made me cry. Tim just had his MRI with contrast, and the spot where they injected that dye into the joint is all bruised and sore. He was hurting, and I don't want my little baby to feel like that. And as I sat there with tears on my face... It's not like I was sobbing or anything, just teary.... all I could say to the therapist was, "God made her blood. GOD made her blood."

He made her genetic mutations; He made her immunological deficiencies. He made her exactly the way she is for His glory.

I am having a very hard time, though, because all those good things that she did today tend to get overshadowed by this one very bad thing and all things that go with an immune deficiency. The having to tell people they can't touch her, certainly can't breathe on her, have to wash their hands before they touch her, etc.. I can't take her to my sister-in-law's one year adoption anniversary because it is at the germ cesspool Chuck E. Cheese, I can't let the boys go because they could bring RSV home on their clothes.... And the list goes on.

The bad hurts. I hurt for my Ilse. She hurts. But when there is good, when Ilse ate off a spoon today and when she put weight on her arms..... and when I get Ilse snuggles, then I feel God's mercy and grace. Those things are His mercy to me, and I am so thankful for them.

Please pray for us, because this is a new layer of struggle. Pray for my baby to keep gaining weight, and that the diarrhea I think is about to begin really won't, and that I will be awake enough to get up in the nights and feed her as many times as I need to so she can grow.

Here is Ilse reading a book during therapy. She was fascinated with the black, white, and red pictures. She actually turned the pages herself with no prompting. And she turned them from the right to the left, just like a true Foster descendant. :)

Ilse's Nine Month Update and Life and Boys

Ilse Joy was nine months old on February 4, and she continues to be a major source of joy in our home. Joey and Chris try their hardest to make her smile-- even though they don't need to try at all since she sees them and breaks out in a grin-- and I tell them all the time that she will know for sure that they love her. They are wonderful big brothers to our Ilse Joy.

Ilse is 27 1/2 inches long now, but as of February 8th, she was only 12 lbs. 5.5 oz., which is only 1lb 1oz heavier than she was at six months. We are pretty concerned about her weight, since in the last few days she has dropped a whole pound. She has been sick off and on for two months, really since mid December. We have had one ER visit, another ER visit that resulted in a night in the hospital, another ER visit to replace her button when it came out in the night, a surgery to insert ear tubes because of ear infections that wouldn't go away even after three different antibiotics, an antibiotic that made her scream for several nights in a row, four different bouts of diarrhea-- the first lasting for 23 days, and the latest for one day, two nights, and part of another day. This latest bout made her lose the pound I mentioned earlier.

Next week we will be beginning some deep testing on her immune system. They are going to see if her body has reacted properly to her vaccinations, do a complete metabolic panel which includes liver function, and check something having to do with protein albumin, or something like that. The reason the doctors want to do this testing is because the last immune system testing just raised more questions as some of the numbers were high and some were low.

We did have Ilse tested for allergies to milk, soy, wheat, and egg. Of course we knew she is allergic to egg, and I was honestly hoping she would be allergic to milk since that would explain the random diarrhea and barfing, but no such luck. We will have to look deeper. Of course some of her barfing is because of SLOS, but I don't think all of it is.

Ilse has really started playing. She grabs for toys without fail these days, and she brings things to her mouth also. Her fingers are her favorite toy, though. The other night when she should have been sleeping, she was instead holding one finger in her mouth, her other hand on that hand, and talking. It was super cute and kept me awake quite effectively. I bought her the Fisher-Price Jumperoo, and she loves it! She doesn't quite jump correctly. She more break dances.....





I love watching her play. I am working on fattening her up, but it is a constant struggle to get enough food in her. The last two days she has only barfed once a day. That has been nice. Also the last two nights I have gotten up in the night to feed her. I intended to get up twice each night so that she would be eating every three hours all day and night, but this tired mommy just can't do it. In fact, I wouldn't even have gotten up the first night I fed her in the night except I dropped my phone on the floor in the dark, before I got the alarm turned off. That right there got me out of bed which in turn got me to her room to feed her. I just couldn't do that twice in one night, though, so I didn't even try to get up again. Then last night the only reason I fed her in the night was because I just stayed up for it. Yes, that's right. I stayed up till 2:15am just to feed her again. I don't know what is wrong with me. I guess I am doing what I must to ensure that she gets fed in the night even though it makes me Mrs. Zombie. I generally get a little nap sometime during the day. The boys are really good at having "quiet reading time." they really do lay on their floor absolutely quietly and look at books, sometimes for two plus hours. They are amazing. I don't now now I would get through the night without that little snooze, and yes, I did just call two plus hours a little snooze... Lol.

Today Ilse actually ate in therapy! I fed her squash on my finger, and she gobbled it up. I need to do it again tomorrow before she forgets how to take food off a finger. Our therapist was amazed. Ilse is also doing really well putting weight on her legs and her right arm. I have ordered her some elbow immobilizing splints that my friend Micia found. It is too bad they aren't pink, but they will hopefully do the trick of getting her elbows locked so I can help her be int he crawling position without feeling like I am an octopus holding two legs, two arms, and a tummy. I guess that would be a quintopus, but I am not one of those either, whatever it is. Something with five appendages.... Um, yeah. :)

Tonight at Walmart I bought the boys camo bandanas and sleeping bags. They will have so much fun I think.

I have been doing really, really well making food at home. We are saving so much money it is unbelievable. We just got our Sam's bill, which before was in the $800-900 range, but this time was ZERO. Yes. So nice. With the diarrhea bout I did go to Starbucks more than I should have, but since I was dead on my feet from not being able to leave the changing table during the night I think I can forgive myself.

And then today we went to Starbucks to celebrate getting our tax return. :) I can't think of a better reason to go spend $14.

Life around here is busy but wonderful. The Lord sustains us, blesses us, and gives us much joy.

Snapshots of our week

These first few pics are of Ilse exploring her world... This time her tube and her quilt.

Here is Ilse after her ear surgery. "Ah. I'm happy now!" she says.

Here is Christopher asleep in the car after a particularly long day of doctor appointments for Ilse.

Here are all three of my blessings together.

The boys run back and forth with their trucks for such a long time.

Chris's perception of his world

We were at the doctor the other day with Ilse, and I asked Chris what we were going to do with our baby who is always sick. I have taught Chris to respond, when I ask him that question regarding himself, "Love me. Just love me."

His response regarding what to do with Ilse was quite different, though.

"Take her to the doctor every day."

Really, Chris?

"Yes, that is what we do when our baby is sick... We take her to the doctor every day."

That is Chris's perception of his world, and let me tell you, it isn't far off.

Ilse and her...... Poop! Eww! Other health news, too.

Ilse baffled me today. She barely let us get out of the house for church this morning with the constant diarrhea. She had four diarrhea diapers before noon. And, amazingly, none since! I am so thankful! Hopefully she will continue to do well in this area.

I gave Ilse a gillion tons of pedialite along with almost all of her normal milk amount today. This morning I fed her a it less milk for her first feeding, but for her second I started 45 minutes early with 100 mls of pedialite and then followed that up with 100 mls of milk. For her next feeding I again gave her 100 mls of pedialite, but then I gave her 145 mls of milk. She kept ALL of it down, both times. And she had no diarrhea. Amazing. For her fourth feed I just gave her 160 mls of milk, and she kept it all down, and for her fifth meal she is getting her usually 170 mls, some of which is a third of a mashed banana mixed in with her milk.

I am so glad I thought to try the banana pulverized into her milk. It hasn't clogged her pump yet going down, (although I let it run past a bit since the bag emptied and I cannot draw it back to the bag, oh well), and hopefully it will give her some more calories that will put some fat on her bones!

Since some of that volume was banana, though, I need to give her some extra milk later to make sure she gets all her regular milk.

I have had a couple people suggest to me that Ilse might be allergic to milk. I am going to have her tested for that and for a soy allergy. If milk allergies really do run in families, Ilse has the gene from both sides of her parentage. I, thankfully, have not evinced an allergy to my favorite go-to drink, and neither have the boys, but perhaps Ilse is different. Well, more different than she already is. :)

Along with the allergy testing, I am also going to ask her doctors about eosinophilic esophagitis. I read about that condition in our insurance policy... Wouldn't you know our policy would pay for a special formula for her if she had EoE? The symptoms are things that Ilse has! Vomiting, something that acts like reflux but doesn't respond to acid blockers, trouble swallowing, etc. Researchers think that EoE is related to allergies, which of course Ilse seems to have, and the biggest thing, viola, is that EoE is characterized by a high white blood cell count where the white loos cells congregate in the esophagus where they aren't supposed to be. I will at least ask about this condition, because it sure would be nice to be able to explain away some of Ilse's barfing with this manageable condition. And if Ilse were allergic to milk, putting her on a special formula could fix her congestion.

I will talk to the doctor about these issues when I take Ilse in tomorrow. I am thinking the doctor also might tell me to take Ilse to the ENT to schedule a tube surgery for her ears. Ilse is still yanking on her left ear, which makes me think that the antibiotic is possibly not working.

Please continue to pray for our sweet baby Ilse.

Also pray for the Bowers family, as they deal with some painful and confusing news regarding their newest baby.

There are so many people to pray for. Thankfully the Lord can handle all our needs at the same time.

Ilse's health

Ilse has been so much fun lately. She has been shrieking, talking, and smiling all the time. She has really been moving, too. She waves her arms around, holds them up, kicks, squirms, and rolls everywhere. She loves her toys now, too, especially the pink poodle that vibrates when I pull the string for her. The other day Tim caught her with her fingers in her mouth the 'Marcus way', and she was also folding her hands with her fingers perfectly interlocked. I was so sad that I didn't get a picture of either of those things!

Ilse has also discovered jumping. She was standing on me the other day, and she completely shocked me by jumping a few times! That confirms to me that it is time to consider seriously getting her an exersaucer.

Things aren't currently all peaches and cream with Ilse though. Yesterday I ran her to the doctor since she was slightly lethargic. We had just finished an antibiotic for an ear infection two days before, and it turns out that the medicine didn't fix her infection, and, what's worse, her other ear is infected now, too. Her left ear was close to bursting yesterday. I am so thankful I took her in for a check up before the weekend even though it didn't exactly seem like she truly needed to go. That further reinforced to me that I cannot wait with her. If she seems slightly off I need to get her checked. Most mothers can wait to see if the lethargy really is anything. I cannot, it seems. So far every time I have taken her in for a minor reason, like her just not seeming quite right, it has turned out to be something that definitely needed medical attention. I am not trying to pat myself on the back about it; I am just thankful the Lord has given us access to great medical care and a bit of intuition to know what to do with this sweet baby.

That intuition is what is bothering me today.... at least, I am afraid it is the intuition. I hopes it is more just unreasonable fear. The doctor said Ilse had lost weight, which is concerning, obviously, since she is so tiny already. Her face looks so thin to me today. I have been feeding her more than usual lately, which makes me doubly concerned that something isn't right. I don't think it is all her increased movement. And, she barfed up her first dose of this antibiotic, which I didn't want to give her anyway because it is in the same class as the one that made her scream for several nights. We might be making an emergency run to the doctor tomorrow morning during church if she begins screaming after I give her the medicine. Today wasn't an accurate test since she didn't keep much of the medicine in. If she has a problem with this antibiotic, the next step is tubes for her ears. I have been told that the surgery is a godsend, but I still don't want to send Ilse in for another surgery. The first one was hard enough.

Ilse is laying here now putting her rings in her mouth. She is so wondrously amazing and such a gift from God to me. Please pray for her. She needs to be better.

Ilse and her swing

I have been trying to get a video of Ilse doing this for a long time. I hope you enjoy her playful antics!

Ilse smiling at her daddy

Ilse and the shoe

More Ilse videos.... Warning, cuteness overload!

These posts might just be enjoyed by family members or fellow SLOS parents.

Although, I can't imagine why anyone wouldn't enjoy watching this especially wonderful, awfully cute baby Ilse Joy!

Ilse and mommy playin'

As you can tell from the multitudes of videos of this game, we all love it.

Ilse and her daddy

Here is a video I took last night of Ilse playing with her daddy. So many happy smiles!

Ilse Smilin'

At me!