Thursday, November 27, 2008
Emma had quite the morning today. I went in and commented to the nurse that her beautiful hair was looking kind of greasy. The nurse took a look at Emma's Gtube site and decided that it had healed sufficiently for her to have a bath.
No, seriously. You're telling me that there's a hole in Emma's side through which a tube travels directly into her inner organs and we're going to submerge her in a normal infant bath tub?
Apparently it heals very much like a pierced ear and doesn't let water into her insides (which baffles me), so we gave Emma her first real bath today!
So why am I thankful for poop and puke?
Well. I don't know many parents who can say their infant loved their first bath, and Emma was no exception. I took her diaper off right before the bath and it was very wet. I'm naive. I've forgotten how little their bladders are at this point. So I picked up a naked little Emma. It felt so normal and nice to just pick her up like that, so I snuggled her for a minute. OF COURSE she peed on me. But I was so happy to just be holding a little Emma that I really didn't mind. No, seriously. That sounds like I'm lying. I know the novelty will wear off. But seriously, I was just holding my little girl and she was so cute and naked and soft (and I have these hormones or something) and I laughed and enjoyed a thrillingly NORMAL new baby moment.
So then we put her in the tub. And she hated it. And she pooped. Again, no infant has ever done anything so wonderful and sweet in my mind. Again, I'm not lying when I say that I SERIOUSLY rejoiced in the normal baby moment of having to refill the bathtub. Her digestive track is working!
So then, when the bath was over and she was all clean and soft and good-smelling and snuggly, I sat down in the rocking chair to rock her to sleep. Now bear with me, here, this next part requires some technical explanation. Because of the way they re-attached her stomach and esophagus (again, anyone out there know how to spell that?), when her stomach fills up and expands, it works as a one-way valve (not sure how, doesn't matter, though) to keep her from getting terrible reflux. Which is great, but anyone who's fed a baby knows that what goes in must somehow come out and sometimes gas and urps need to make their way back up, right? Emma is unable to do that for the time being (she'll outgrow this eventually, we're told). So there is a port in her Gtube that leads out for gas and urps to escape if necessary. This has been empty for Emma until today because her stomach feedings have not been big enough to start this process, but now whenever we hold Emma we have something clipped to our shirts that needs to stay above Emma so gas can escape. Today, of course, just as Emma was falling asleep after the bath, it leaked. On me. I looked at the nurse, just to clarify that I was understanding what had just happened, and she nodded and said, "yup, what is now on your shirt used to be in her stomach."
So in the course of 2 hours, I got peed on, pooped on, and puked on.
And I'm not lying when I say I walked out of the ICC unit with dirty clothes and a big smile on my face.
Wednesday, November 26, 2008
I think that last one deserves a caption, but I'm having trouble ... something along the lines of "what? little old me?"
And for those who are curious, the yellow tube is her feeding tube, and that's what she'll come home with.
In the middle picture she's got some therapy equiptment on her hands. They are working on some upper body strength with Emma right now, including neck strength and hand grasp. I was pretty proud of her today, though, she made eye contact with her therapist and followed her with her eyes when the therapist moved her head. Good girl!
And her oral stim program is going really well. It's like a little face massage, and I think she's actually kind of enjoying it, which is really rewarding for Mommy. At the end of the program, she gets a finger or a paci dipped in milk to practice sucking on (since she's not eating from her mouth yet) and after that she's usually sleeping like a little lamb. And then Mommy gets her snuggles! Love it!
And it's been awhile since I have posted anything about my son that should be used for future blackmail, so I thought I'd get the camera out this morning and wait for him to do something cute. :)
It didn't take long.
This is how potty time goes in our house. I promise the video doesn't show anything inappropriate, but if you're in a sporting mood, find someone else to watch with and take bets halfway through about whether or not he falls in!!
Did you win any money? :)
And how am I doing, you ask? Well, I'm not gonna lie, this sucks. I feel SO torn between my two kids, and Charlie asks several times a day if he can go and see Emma at the hospital, which breaks my heart as well. Pumping is ... well, let's just say not nearly as nice as breastfeeding and leave it at that. We're getting into a routine, but as often as people say completely true and well-meaning things about how Charlie needs me, too and I can't neglect my own health ... you tell me if you wouldn't feel any guilt about the fact that you are either not with your son or leaving your daughter alone in the hospital 25 minutes away! I HAD A BABY AND SHE'S NOT HERE. Yeah, this sucks.
There are blessings. I have met some wonderful people. By definition, the other parents and family members I meet in the ICC are going through crappy stuff, too, and it's an interesting community. The girl in the bed next to Emma's has been there 7 weeks and her mom (who I've had lunch with and really have enjoyed talking to) just got the news today that she gets to take her little girl home tomorrow! I got goosebumps and hugged her and was almost as teary-eyed as her mom was when I heard the doctor tell her the news!! I'm so happy for her.
And I guess the rest of my emotions about the experience can be summed up in my experience a LIFETIME ago when I had the MRI test. God's here. I got to snuggle with Emma for a really long time today and God was there.
Yea, though I walk through the valley ... thou art with me.
And really, I just need to keep reminding myself that that's all that matters.
Tuesday, November 25, 2008
Emma is doing great and making progress towards coming home. In fact, I think she's doing the best out of the four of us. She has constant feedings, so she never gets hungry, and if she's sick of what you're doing to her, she falls asleep.....sounds nice. I think it's safe to say the other three of us are hitting the wall in our own way.
Charlie cried hard tonight over the tiniest of things. He repeatedly got worked up to the point that he couldn't breath. It's been a good 6 months since he's gotten that worked up. When we were going through his bed time routine tonight, and he and I were snuggling, I tried to put him down 5+ times before I finally got him down. Every time I tried, I got a "*sniff*snuuuuggle....sit down chair*sniff sniff*". How do you tell that little boy no, especially after he's been crying all night and has just settled down? After 30 minutes of this, I had to say "5 minutes buddy", the line we use when we need him to do something he doesn't want to do. And as usual, when I said "ok, time to go", he got up without whining and climbed into bed.
Becky was coming home from the hospital the other night and thought she was on a one way street, so she was driving in the far left lane. Turns out it was a two way street, as evidenced by the car coming the other way in her lane. Let's just say Becky isn't going to visit Emma at night any more.
And me, I'm trying to balance seeing Emma and being there to learn how to take care of her, spending real time with Charlie, helping Becky work through the after effects of pregnancy hormones, and putting enough time in at work to get done what I need to do there. Sleep....what sleep?
Thankfully God knew what he was doing when he brought Becky and I together. So far we've done a good job of not falling apart at the same time, and therefore being able to hold each other up during the other times. As we head into week three, we're definitely getting into survival mode. We're hoping to have our little girl home by Christmas.
Thank you for all of the support. We REALLY appreciate it and can't start to express what's it's meant to us.
For a little while, anyway ... :)The outfit she's wearing is a "newborn" size. We got her in a preemie sleeper today and it fits MUCH better. I can't believe how little she is!
Saturday, November 22, 2008
So he went!
That girl has her father wrapped around her little finger already and she's not even old enough to know it yet!!
Men, take note, there is NOTHING more attractive to a woman than a man who is a good father (in my opinion, anyway, but then again washboard abs are just not in the cards in our house so ...).
Anyway, before I get all gushy (too late? sorry) ...
Both our little ones are doing really well. Emma is handling her tube feedings nicely so they are increasing steadily. One nurse today was hopeful that maybe Emma can be off the IV feedings as soon as tomorrow! This would be a really exciting step, if for no other reason than she can finally wear some of the adorable outfits we've got waiting for her!
I do have a prayer request, however, and I hope you'll be ok with me not posting details. I'm struggling with worry about Emma's genetic testing. Please pray that God will grant me peace?
Charlie is cuter than ever these days! He's actually carrying on the most BIG BOY conversations. Tonight, for example:
C: "Daddy read me this book?"
J: "Sure! Are we reading in Charlie's room or on the couch?"
C: "On da couch"
J: "Ok, come on over."
C: "I get blankey a lovey and make a nest?"
C: "Ok, Daddy, I go get it and den I come back a read a book" (run away to carry out his plan)
Seriously? When did my baby boy start expressing all of this? I mean, for those of you with older kids, I know the above conversation is nothing profound and all, but when did MY Charlie get old enough to form sentences and make requests and all that? He's still my little boy who wears footed pj's and sleeps with a paci and needs "kisses make it all better" at least twice a day! When did he become so independent and confident and all those things we are so proud of and dread all at the same time? (again, for those of you with older children, I know this is nothing compared to driving away to college or the prom or something, so just smile and nod and let me have my cute little "young parent" moment:) )
life is good with little ones.
And my Prince Charming is home, so I'm off to hear about our little Princess.
Here's a pic after Mom worked her hair into a frenzy last night.
We hope to bring our little girl home soon. She's up to 5ml of breast milk every hour through her feeding tube. It doesn't sound like a lot, and it's not, but it's more than the 1ml/hr she started with. It's being fed straight into her intestines, and that's going well, so soon we should be moving to putting it into her stomach and hoping that that works as well.
Thank you for the continued prayers!
Thursday, November 20, 2008
The only possible explanation for the state of the Watczak house at the moment is that Dave, in an effort to REALLY make the point sink in for us, snuck into the church nursery on Saturday night and ...
But Mama and Charlie are still sick, in case you haven't guessed.
And I can't go and see my Emma while I'm sick.
But I did get to hold her for a really long good snuggle before I felt so icky, so I'm looking forward to that again.
Praise God for grandmothers taking care of Charlie so I can rest.
She's doing well, though. They are feeding her through her tube at the moment and backing off on IV nutrients. This is an exciting first step to getting her to eat. The road ahead of us is still long; first she had to thrive getting her calories pumped directly into her intestines with no IV feedings. Next she has to thrive with milk getting tubed into her stomach with nothing going straight to the intestines. It's a process of sort of "waking up" the system, we're told.
But for right now, she's our beautiful little princess, and I'm anxious to get to hold her again.
Wednesday, November 19, 2008
Tuesday, November 18, 2008
And here's sleeping beauty.
For those of you looking really close, that's her big brother Charlie watching over her.....OK, actually, it's a picture of him that we taped up in her isolet.
I, however, have caught what Charlie had.
Charlie's better, still not eating great, but better. Mama is sick.
Thank God Josh's mom is still here, but I'm sad I can't go and see my little girl tomorrow.
Please pray for speedy recovery for all of us and especially pray that Emma doesn't catch anything!!
Monday, November 17, 2008
HOWEVER! The Charles Monster is vomitting every 20 minutes.
One in NICU and the other home sick ... ok, deep breaths ... I can do this. Ready, go! :)
I apologize to any we may have infected at church this weekend, and I'm praying that we haven't carried anything in to little Emma.
She's recovering from her surgery really well and has been off narcotics all day now. Her pain is being managed with Tylenol. They watch her face, heart rate, and blood pressure to assess pain; we've been pretty impressed by how in-tune they are with keeping little Emma comfortable. We are thanking God for the gifts he gives the medical community to care for our little girl.
So they are hoping to take the breathing tube out tomorrow morning! Praise God! If that goes well, we may get to hold her again for the first time since the surgery. I'm so excited. She woke up for a little while today and we got to at least have some good eye contact. This was, of course, after they gave her some caffiene to really make sure her lungs were ready for tomorrow. Josh said he was jealous that she got her first "Mountain Dew" so early in life and wanted to know where he could get something that put caffiene directly into one's blood stream!
Our "care coordinator" nurse also came to visit us today. She is the one who gave us our tour of the NICU when I was pregnant and sat in on our consult with Emma's neonatologist that day who described the multiple heart surgeries he anticipated Emma having and the long road ahead of her. She said she would never have guessed that Emma would be doing as well as she is right now. "Miracles do happen," she says. We agreed.
Saturday, November 15, 2008
Both our kids had rough nights last night. I had the alarm set for 2:00 to get up and pump , but at 1:30, I heard Charlie screaming. I ran downstairs and he screamed through tears "I BONKED! Big boy bed together?" His big boy bed crib rail had fallen off somehow (although I have to say I'm not sure how it would have happened without a little help from the monster, so I'm not feeling too badly about it). It was kind of nice, however, to see the little dude and comfort his tears (obviously not injured) when he was sad because he was already in bed when I got home last night.
So we got the crib put back together and Charlie back in bed and I went up to pump. We can call Emma's nurse at any time, so I called when I was done and she hurriedly told me into a speaker phone that she was "in the middle of something" and would call me back. Fighting the urge to get in the car ...
It turned out Emma's breathing tube had come out as they were trying to do some adjustments with her. It's kind of a fiasco when that happens because of her small jaw and her small size in general; it took them quite awhile to get it in for surgery and she needs it during recovery as the pain meds she's on have the side affect of causing little ones to forget to breathe ...
But she's ok. It's back in now
I think yesterday was just about the hardest day of my life, but GOD WAS THERE.
One of the nurses working in Emma's area (but not with Emma) had a break in the action on her side and was chatting with me for awhile yesterday. She heard Emma's nurse getting stuff ready for surgery and asked me what the surgery was for. I told her Emma had a DH and she was shocked. She looked at Emma's nurse, looked at Emma, and clarified, "She's got a diaphragmatic hernia?? Doesn't she need a ventilator?" I have to keep reminding myself that this could be soooooo much worse.
And then I talked to a friend of mine yesterday who doesn't have internet at home to ask for prayer for the surgery. I had lost track of who I had talked to and who I told what to, so it took me a minute when she asked "which surgery is it today?"
I said, "Oh, no, God healed her heart, she only needs one."
Friday, November 14, 2008
Becky was discharged from the hospital this morning and will be heading home later tonight. Please pray specifically that she and Josh would have peace and rest as they are having to deal with leaving sweet Emma at the hospital. It has been a long, exhausting and emotional day for the Watczak's, and I know that they covet your prayers.
Thursday, November 13, 2008
Wednesday, November 12, 2008
*Emma gained nearly a full pound between the last growth scan (last Tuesday) and her birthday. God is good, and make no mistake about it--it is through His power alone that this tiny baby, who WASN'T GROWING in utero suddenly picked up the pace and started packing on weight! Praise the Lord!
*The cardiologist made the decision to wean Emma from the heart meds that were administered at birth to "see what her heart does on it's own"...and Ultrasound tests show that her heart is pumping just fine. Can you see the hand of God here??!! This is nothing short of a miracle, and we are rejoicing!!
*Oh, and remember when Josh and Becky were told (at multiple scans, mind you!) that Emma had an "absent nasal bone" which is a marker for a variety of genetic disorders?? Well, God saw fit to just go ahead and replace that bone for Emma. So it's there now. Again, we're in awe. We serve a Mighty God!
And now, regarding the diaphragmatic hernia: The tests that they've completed to this point show that yes, Emma's stomach is in her chest cavity. This will require surgery sometime in the next few days. The doctors are in the process of running another test to determine the extent of the hernia (is it just her stomach, or is there part of her bowel being pulled up into her chest as well?). They'll be doing surgery either way to repair the hernia...these results will only provide for them the information of exactly what they'll be fixing... Also, it was learned that Emma has a cleft palate (but no cleft lip, which is again, something to praise God for!). This is a condition that will require surgery, but not until she's 6-9 months old. It seems surreal that she's actually here, and that they are talking about the possibility of her NOT NEEDING HEART SURGERY AT ALL! Seriously, I'm in awe! Thank you Jesus! Keep those prayers coming!!! I'll update as I hear more from Josh and Becky.
Tuesday, November 11, 2008
Thanks for your prayers, we're so excited to finally meet our little girl and feeling almost overwhelmed by the prayers and support of the body of Christ!
Love to all
Sunday, November 9, 2008
When you get to that time after 35 weeks when baby has run out of room and moving around less often, NEVER say to your loving husband, "Gee, I haven't felt the baby move in awhile."
I sympathize with the husband's situation; it's gotta be hard not being the one carrying the baby and feeling the little kicks and getting used to how much motion is normal for this particular child and all that.
HOWEVER, you will be dragged to the hospital whether you want to go or not before you even get to shower for the day and strapped into a fetal heart rate monitor for at least an hour and poked and prodded and I HATE THAT!
It takes a fall into a hole or CHILDBIRTH to get me to willingly take myself to the doctor, which I realize might not be the best philosophy in the world, but that's the way I am.
So you all can thank Josh for the fact that we have another perfect BPP score to report from this morning. Emma is still a perfect 10! :)
Friday, November 7, 2008
But our doctor is not a fan of the idea of leaving Emma in there until she shows distress. If she's not growing and we get her past 37 weeks, what are we waiting for? I couldn't agree more.
So we have a date! Emma will be born a week from today, Friday the 14th! (unless God has a sense of humor and she comes sooner ... )
We're so excited to finally meet our little girl!
Thursday, November 6, 2008
But, no, actually, my overwhelming emotion is wonder at how NOT panicked I am. Is the logical scientist information junkie in denial? Not fully grasping the situation?
Or reassured by evidence of God's hand working in the lives of those around us ...
If you haven't clicked on the MckMiracle button on our blog yet, you need to. MckMama (who I don't know in real life and will never meet but have wept and rejoiced with multiple times in the last few months) shares the story of her newborn son whom she was told would die in utero. God absolutely has the medical professionals scratching their heads on this one!
And with the news today from another dear friend who recieved a "fully healed" diagnosis for their son today, after they were also told years ago that their hope was foolish, God is surrounding me with witnesses and living testimonies of His power and desire to work for the good of those who love Him.
So when Angie over at Bring the Rain posted some verses to pray for our families to pray over our children this morning, two spoke to me deeply in our situation. I'm hoping that these verses speak to you in your lives as well, because God is moving in our world! Will you join me in praying these for all of our families?
Tuesday, November 4, 2008
Ah, the look of care-free joy on a toddler's face. Just try and be worried or depressed with this little dude around!!!
Emma was poked and prodded and scanned and discussed at length this morning and it was decided that she's staying in Mama until she tells us (by way of failing a BPP) she's ready to come out.
The heart doctor we talked to confirmed everything we saw before: still a hole in her heart and still a narrow aorta. He told us that they both needed to be dealt with but that they are mild to moderate given other heart issues he's seen. Within her first couple of days of life, Emma will have surgery to fix the aorta, which will be an incision in her side under her arm and not an open chest cavity. The heart doctor, however, felt the hernia would need to be dealt with first because those are typically more serious.
The perinatologist, though, still thinks the heart situation is more serious because our hernia situation is fairly mild. Either way, two corrective surgeries will need to be performed on our little girl in the first couple of days of her life, with a third (the hole in her heart) occuring within a couple of months if necessary.
Which brings us to why I'm still pregnant ... Emma is only 3 and 1/2 pounds at the moment. I'm almost 36 weeks pregnant and she's measuring like I'm only 30 weeks, and the difference between gestational age and actual size has gotten bigger in the last two scans. In a typical situation, this would result in Emma being delievered today because she's not exactly thriving in there. However, we have to get her as big as possible for these surgeries. She's still passing the BPP tests, so she's not in distress, so we're keeping her in until she shows signs that she's ready. Our doctor is guessing that's not far away; he said he'd be surprised if I made it to 38 weeks.
So that's the scoop.
Not really sure whether to be thankful that she's still safe in there or scared for the reason why she's still in there, but the Great Physician is keeping her safe and will continue to do so. I keep telling nurses who look at our charts and then look at me with pity that "she's in good hands, she'll be ok." ... most of them look at my cross necklace and know what I mean, which either results in a condescending pat or a sigh of relief that we are leaning on our faith. Our nurse today was very sweet and told us that God knows what He's doing. It's good to find fellowship in a hospital!
Thank you for your prayers!
Monday, November 3, 2008
I'm reminded of Ex 17, which has been one of my favorite images of fellowship and prayer for a long time. Amalekites attack the Isrealites, and during the battle, Moses goes up on the top of a hill and raises his hands in prayer to God. When his hands are raised, the Isrealites are winning the battle. He soon gets tired, but if he lowers his hands, the Isrealites start losing. So Aaron and Hur get Moses a rock to sit on and they hold his hands up for him.
Thank you to everyone who is praying for little Emma. We are so touched by the love of the body of Christ! When we're feeling a little like Moses, so exhausted and overwhelmed that we can't do more than groan (read:whine) to God, we know there are Aarons and Hurs our there lifting us up. Wow, how humbling is that???
I'm actually pretty optimistic at this point, though. We're prepared for everything the doctors think will happen to happen and maybe the healing we've been praying for will come in the form of the best care in the country for our little girl and she will be surgically healed. OR ... well, with God all things are possible!!! :)
Praise God that He's already there. He knows when Emma's birthday is, and He knows what's going to happen after she's born. He goes before us. Like Tam's verse in Dt says "God HIMSELF goes before you." Could we ask for anything more?
I was assuming that I wasn't going to be able to sleep tonight, waiting to see what the doctors are going to tell us tomorrow, but I feel a lot of peace, and I'm sure this is a direct result of the angels I know surround me because of all of you who are praying. Thank you for all your prayers!!!!