Nine Months!

I am tired so rather than do a full update on Emily, I took a passage from my journal from a couple days ago and thought it was a pretty good synopsis of where we are right now. It is not meant to be sad or anything, just an honest look at our lives. Hope you enjoy.

"Well it has been nine months since Emily made her debut onto this planet and I have to say that I meet this milestone with excessive joy and gratitude and yet huge fatigue and frustration. It is a mixed set of emotions to say the least. On the one hand, I see the miracles God has performed and the grace he has shown us and Emily and yet immediately following that, I feel so tired. These have been the longest nine months I have ever experienced, even if you took separate incidents…like the first few months K was home, the utter aloneness of the months in BP and dealing with Bells Palsy in our first year of marriage…and lumped them all together, it would be like putting a lighter next to a bon fire. I just can’t compare it to anything that would do it justice.

The endurance of this episode is what is finally wearing me completely out. I believe that anyone can handle anything for a short period of time. That is part of what makes us human. We endure and push through and eventually things change for the better. When I think of this, I wonder, “Will it EVER end? Will I EVER get to look back and say – wow, I am glad THAT is over!”?

I have been working on Emily’s scrapbook and each time I do, things strike me. Mostly, just how sick she was in those early days. I can’t believe she is alive today. EVERYTHING was wrong with her. I decided to organize her problems by making cut out shapes of different organs so she could keep track of one problem at a time instead of getting overwhelmed in all of the medical jargon. Well, at the end of the first week, I have a cut out of a heart, lungs, intestines, brain, and blood (used a transfusion bag)… and we haven’t even gotten to her eyes. It is overwhelming to realize now that NOTHING was working in her. By all rights, she should be dead.

But then as I continue, you would think, “Okay, that’s the worst of it. It must get better from there”. But it doesn’t. She just kept having troubles and they got worse and worse. Finally she has surgery on her heart and she stopped getting worse, but certainly didn’t get better. It just seemed like she floated along…on prayers is my guess. Seven weeks in, I get to hold her and about a week later, she starts to improve and we really saw our first signs of true hope. But that was short lived with the broken arms and the news about her eyes. Now we are off to another hospital because she is going blind. The agony of deciding if an experimental procedure with unknown side effects is worth her vision…after months of making decisions about stuff we previously knew nothing about, now we had to make a blind decision that would deeply impact the future of our child. I still wonder about that. Will it come back to bite us 5, 10, or 20 years from now? We won’t know. Same thing with everything that is her life and has been ours for nine months.

And then slowly but surely, inch by excruciating inch, she started to stabilize. Finally, over four months after she was born, she began breathing on her own and a couple weeks later, she came home. You would think that would be a great and joyous event, but ironically, it was also one of the scariest things we have ever done. Bringing Emily home was a nightmare with the hopes of a good ending. I always say that the day she came home, M and I became Emily’s nurses and parents (they should have given us an honorary RN when we left the NICU!). We had SO much we had to know and there were so many things we had to do. Her crib looked like a hospital room. She was hooked up to her apnea monitor 24/7. We had to get a thousand medicines down her amounting to one every hour of the day and keep the food down using her feeding tube, which we knew how to insert into her nose, down her throat and into her stomach. Looking back, I know why the hospital was nervous to send her home. It is crazy to me that they let us have her! What were they thinking? My mom was here and it took all three of us to care for the two kids we had. I am so glad she was here! If she hadn’t been here, I think I might have taken her back and asked to them to wait until she was a little better.

We finally transitioned, mostly because M was such a HUGE help. He was totally hands on and jumped in with both feet, helping in any and every way he could. We really became a team trying to balance all of Emily’s issues and still make K feel like she was the apple of our eyes. We were just getting into a groove when the drs appts started. What a nightmare that has been. I counted it once for the blog and over a 47 day period and we had 41 drs appt in that time. I feel like my life is drs appt after drs appt and that is all I do. I plan time out so often that even though I have a bottle fed baby (with a million medicines) and a toddler, I can get out the house for a full day trip in about 15 minutes if I need to. Don’t get me wrong, I like to take half an hour when I have the time, but three months ago, that took me an hour to do.

Anyway, when Em was in the NICU, M and I had a hard time relating because we never saw each other. Visiting hours were from noon til 6pm. So, I would put K down for her nap at 11am, take a shower and leave with a packed lunch to eat along the way. M would get up with K and spend the afternoon with her while I spent the afternoon with Em. I would get back by 4pm so M could go to work. And this was how we spent his work week. On his weekend, we would just stay in the groove, since it worked and he was also working overtime on most nights to pay for our mounting medical bills. So we saw each other for a couple hours two or three times a week. And you can imagine how much quality conversation happened during those hours. As tired as we were, the TV went on and we fell asleep together on the couch.

I thought this would all change when she came home. I thought we could get back to normal. Now our lives are quite similar. His days off are when we have all the drs appts are so we divide and conquer. Usually I take Em to all her appts since I have the most knowledge of her day to day activities and know more of what is going on with her and M takes K to her appts. It is a rare day when we are together all day as a family cause when the drs are off on weekends, M is working his 12.5 hour shifts. That leaves me alone on weekends, although I have learned to find solace in my alone time. I spend it recovering from the week and sometimes writing. I don’t want to forget all that has happened so I write or at least blog so I will have an abbreviated version from which to make my scrapbook someday.

We have also now added working out back in to our schedule…please don’t ever say you don’t have time to work out around me…work out time is made, not found. Tonight, we will work out instead of sit down and relax for an hour before bed. It was hard for me that Bible study stopped for the summer as all my natural connections were through that. And with everyone going on vacations and having family in town, I have seen very little of my friends from around here through the summer. At least with all the driving, I keep up with my ‘phone friends’ (old friends who now live far away).

Now, I am tired. I just want it to be over. I want Emily to not have a monitor. I want her to breathe normal. I want her to gain weight so making her bottle doesn’t take 10 minutes and getting her to eat it take an additional 30 minutes. I want to not have to feed her every three hours (or less) like an infant. I want her not to cry when I give her food. I want to go on adventures where K gets to see animals and nature, not on more trips into the city where we get to sit in waiting rooms and see another dr.

At least Emily gets the “Oh how cute” now instead of the excited person coming up to the stroller, followed by a pause and “Hi, there, little one” (back when she was not the cutest looking thing)…people are not so discreet as they think they are. I do know that people are total liars about babies though. Even when she was in her ugliest phase, people would try to convince me she was adorable. I don’t understand the obsession with our kids needing to be cute. I knew she was ugly and it didn’t bother me one bit. I loved her as much – actually maybe more – because of it. I think I knew the world was not going to treat her as well because she was not as physically beautiful as others, and it made me want to love on her even more so she wouldn’t ever feel that rejection until I could no longer protect her from our cruel culture. Rabbit trail. Anyway, I want to have a life where on ‘weekends’ we get to plan to go places and do things as a family. Where M and I get to sit down and talk for a couple of hours and rekindle that friendship that has carried us through so many difficult times and out on so many different adventures. So we can remember together that life isn’t all work and hard times. So we can remember what it is to play. I dream of the days when life gets back to there."

And so we persevere...why? Because, "...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." (Romans 5) AND HOPE DOES NOT DISAPPOINT US. I don't know that I am rejoicing right now, but I know that I have come to understand this verse in deep, deep ways since this started.

I feel like my life right now is like a distance runner who is in the middle of a very long run. I have come so far and yet I have so far to go. Every once in a while I think about being done and then I realize it only makes it harder so to cope with the pain, I stop thinking, duck my head down and just keep running. I often long for a finish line, but the only one promised is at the end of this world. So I will duck my head again and continue to run.

Until God gives me another water break.

Sucking Results

Ok, so I was totally skeptical going in for this test because of all the radiation Em was going to be exposed to, but had I known it was this informative, I think I would have pushed for it sooner. Basically, we added barium to her food and watched through an x-ray as she ate.

So, in my best layman's terms: We all have a flap (epiglottis) in the back of our throat that blocks off our airway when we swallow. In normal babies (and adults I guess), the instant food or liquid hits the epiglottis, it snaps shut and they swallow. It turns out that Emily's reflex does not work properly and there is a significant delay from the time food hits it to the time it snaps shut. As a result, food collects in the back of her throat (up against the epiglottis) and sits there until the epiglottis finally closes and she swallows.

The problem is that during the delay, milk seeps up and over the top of the epiglottis and drips into her lungs. This is why she often chokes and coughs while she is eating...but more worrisome is the fact that it happens all the time and she doesn't seem to notice. She actually never coughed the entire time we were there and it was still very obvious in the x-rays.

So, they tried a thicker milk and because it is heavier, it can sit in the back of her throat without going over the epiglottis for long enough for her brain to kick in and tell her to swallow. Also, solid foods worked well too. So, we are now going to make her milk even thicker (with rice for now) and hope she continues to mature. The heavier food should also help with her reflux as it will be harder to get all the way out. I am also hoping no more milk in the lungs will help with her raspy breathing. We don't have to do the test again for nine months as it will take time for her to mature.

A couple of questions I have been asked already:

How come they didn't do this test sooner? I have asked this about a LOT of tests but the bottom line is that babies take time to mature and sometimes they just have a hard time with certain things and most of these issues they will master over time without medical intervention. Coordinated sucking and swallowing is one of them. So there is no reason to put her through the test, much less the solution if time alone will solve it. We finally did this test because she is five months adjusted and still showing signs of being uncoordinated with her eating (choking and coughing and a lack of endurance).

Why hasn't she been hospitalized with pneumonia? God is still taking care of her. That is the short of it. The dr asked me twice if she had been back to the hospital with pneumonia. Obviously with all that milk going into her lungs, pneumonia is the greatest risk and most likely outcome.

Is it connected to prematurity or what? The dr said they see this most commonly in babies that have had heart surgery of some sort. They don't know the exact correlation but think it has something to do with the heart working harder, leading to low levels of oxygen making the reflex slow down (it happens only after several minutes and after she starts to get tired).

What do I think? This is good news as we can finally do something about her eating issues (which have been the hardest on me because it consumes most of my day). I am sad for her that she still has so many things she is working on but the more we know, the more we can help. I am also frustrated because within the answer is just another issue we have to 'wait out' and I am getting really tired of that answer. I want things to start getting better sooner rather than later.

Thank you for your prayers and please keep them coming! The pic is just for fun and I know her eye is crossing but it is cute and now you know why we are taking her in to get it checked out.

Sleep? What's That?

So I don't usually take pics when Em has a medical thing, but this one took the cake so I had to have a couple. We had the sleep study last night and I think it went well...we will find out in a couple weeks, I guess.

We got there at 8pm and they didn't start hooking her up until 10pm (troubles with the boy in the other room). She was fine with all of it until they put the nasal prongs in her nose, then she lost it. It took me until 11pm to calm her down and get her to go back to sleep.

BUT then at 2:20am, they had to come in and get her to sleep on her back (necessary to make sure readings are the same no matter which way she sleeps) and that woke her up completely so another bottle and then some restraints to keep her from rolling on to her stomach and finally we slept again...only to be woken up at 6:30am to start heading home...after another bottle.

Needless to say, mom didn't get any sleep and Em will likely take a few longer naps today. So thanks for your prayers as at least they said they got pretty good readings. Oh, they will also be able to tell if she is having seizures, or at least that they should order yet another test to watch that specifically.

In other news, K had her 18 month check up and she has grown 3.5 inches since she turned one but only gained one pound. The difference between a full-term baby and a preemie? They just looked at her, said, "She looks very healthy. Does she eat a lot?". M said, "Like a horse.". And her dr just suggested that since she is actually not allergic to milk, we should switch her back to whole milk as it will have the fats that are missing from the almond milk we've been using. We just don't brew them big, but in our world, people just don't seem to get that. Anyway, K's doing great, praise the Lord!

Still Too Little Weight Gain

So Emily only gained seven ounces in the last three weeks and this is not enough weight for the drs to be satisfied so we are adjusting her diet again. We thought she was doing really well while we were in MN but then the last day we were there and the first one back, she threw up more than she was eating and we think she lost it all. Now we are going to try to get more solids into her, increase the prevacid, and start adding oatmeal to a bottle or two each day. Should be interesting, but at this point, she is just spitting too much back up.

People keep asking why this is such a big deal, and the bottom line is that she needs the weight to have proper development of all her organs, but especially her brain. Babies need the fat.

These are just some more pics from the wedding...actually the groom's dinner. I found them as I was organizing pics and wanted to document them since it is the first time most of our family had met Emily.

Uncle Jared

Four generations pic.

Cousin Kari

Uncle Mark

Great Grandma

Great Aunt Bec was awesome with  K...she played all afternoon with her and they had a blast!

Trying to teach Great Grandpa how to have tea.