Crossing Our Fingers

Anna had a pretty good Saturday. She still has a mild fever, a nasty cough and is generally uncomfortable. She did what she needed to do to avoid another trip to the hospital: keep her breathing under control, no high fevers and eat. So far so good. We will keep our fingers crossed that tomorrow will be just as good or better than today.

For me keeping up on the medications and treatments has been overwhelming. To be exact, there are 15 different medication or treatments that need to be given everyday. It was easy to remember when things were supposed to be given while we were in the hospital but with piles of laundry and dirty bathrooms in my site it is more difficult to remember to do everything as ordered.

Home, sweet home

Anna got a surprise for her 6-month birthday... the chance to sleep at home.

We returned to the Casa Crazy this afternoon. They decided she was doing so well breathing without the oxygen that she could go home to fight the rest of what ails her.

It's an awesome feeling to take your baby home from the hospital, no matter how many times you've had to do it. It reminds you that normal isn't that far away.

She's still a little cranky and might be a handful for a couple days. But at least our family is back together at home, where we belong.

A Smile

Anna is smiling this morning. It is amazing how things can change so quickly. This morning they turned down Anna’s oxygen and then took it off. They took her off the monitors. Now all we have is the IV. The doctor says if she has a really good day she might be able to go home tonight. I am hopefully optimistic that we will be sleeping at home tonight.

Happy 6-Month Birthday Anna

Anna and her seahorse and resting comfortably this morning. She is worn out from her blood work where she screamed for quite awhile. She had an OK night. Her oxygen levels took a slow decline again over night so she had to have the amount of oxygen being administered increased again. She has been eating better and keeping things down quite well. I am not sure what changes the doctor will have in store for us today. We will have to wait and see.

I never imagined that this is where we would be spending Anna’s 6 month birthday. Looking back over the past 6 months there have been so many good moments with Anna, I simply can not imagine life without her. I am not going to try to figure out why she has been challenged medically. I do know that God is watching over her.

No Big Changes

Not many changes today. Anna’s chest x-ray showed that there were no changes. Her respirations and oxygen levels are about the same. Her temperament (grumpy) is the same. After the pediatrician visited this evening she changed her respiratory treatment to include for them to do percussion. This is where they actually lake a small cup and basically pound repeatedly on her chest. This is to try to break up the “junk” that is in her lungs. They did it this evening and she actually kind of enjoyed it.

I know that it will be at least a couple of more days before Anna gets to go home. At this point, I am being patient. I hope that I can continue to be patient but I know as she gets better I will be more anxious and ready for us all to leave and be back to our “normal” lives.

She's sleeping!

I know a baby sleeping isn't the most amazing thing in the world. But when she hasn't been for the past few days, you really learn to enjoy it.

Since Anna's been in the hospital, we've been lucky to get five to 10 minutes of peace at a time. As I write this, she's been asleep for almost an hour and a half.

That's an hour and a half of not listening to her struggle to breathe. That's an hour and a half without her squirming with what must be unbearable agony. That's an hour and a half of her doing what she needs most, resting.

So yes, I'm ecstatic for something as simple as a baby napping. She's not just "stable," as I've been telling people all day long. Now she's actually comfortable. She's happy. And I'll enjoy her that way for as long as she needs.

Frequent Stay Rewards

David asked me the other day if I thought the hospital had frequent flyer rewards. I am not sure what sort of “perks” you might get for such a program . Maybe a free starbucks, an upgraded bed, bigger softer bath towels or access to a special “club” with a whirlpool. I know that the reward I would like more than anything right now is back massage. This chair/bed is not the most comfortable sitting or sleeping arrangement..

Anna had a rough mid morning early afternoon. Her vitals are stable and breathing is improving but she is not happy and making sure that everyone knows it. I was getting overwhelmed and down when in walked a volunteer with an animal and balloons for Anna from the officials and staff at the courthouse. It brought a smile to my face and then as I was putting them on the stand in walked Father Alphonse from our Church. He has played such a vital role in Anna’s life from the very beginning. He blessed her and he and I reflected on how far she had come. I know that he possesses special power to assist the healing process so I am very optimistic that things are going to go much better from here.

Hoping the market does not crash

As I attempted to sleep in the hospital last night, I could not help but compare Anna’s oxygen levels with the stock market. Over the past 12 hours Anna’s oxygen levels have continued to decline. She has a monitor on that shows her level at all times. 100 is ideal but the nurse told me anything above 94 is alright. The levels kind of bounce around a little so you are just looking for the average. Somewhere around 2:00 AM her levels dipped into the 80’s and stayed there. She was given an extra breathing treatment and steroids. They continued to watch the level hoping that it would rebound. Just like the stock market she had some good moments and some bad but continued to struggling to get to a good level. At about 4:00 AM she was again given another “package” of treatments that seemed to help her come back up somewhat. I hope that was part of her stimulus package that is going to keep her levels on the rise.

Resting Comfortably on the Magic Pillow

When I went how this afternoon to take a much needed shower, I brought some more of Anna’s stuff with me back to the hospital. Most important was the pillow that she sleeps on and her. This evening she is sleeping very well on her pillow.

I believe that at this point Anna has had every major organ tested and examined. I believe somewhere in this hospital there is a composite picture of the inside of Anna pasted together from all of the different tests that we have gone through in the last 6 months. Today Anna had an ultrasound of her kidneys. David actually got the joy of being the parent who was here for the test. The good news is that her kidneys appear normal. She will have additional tests on her kidneys as soon as she gets over the infection. She is struggling to breath because of the pneumonia and remains on oxygen. She is now getting breathing treatments every 4 hours by the respiratory therapist. We are just in waiting mode to see if she starts to get better, she stays the same or if things continue to decline. It has been kind a day of ups and downs. She will do well for a while and then she gets uncomfortable and very irritable.

I spent the afternoon with the older girls. Lissie had a ton of homework to do because of missing school on Tuesday. We worked to get a good portion done. We ate dinner at home and then went hospital for the exchange but first we stopped in the gift shop to get Baby Anna a gift from her sisters. After a quick visit, David took the girls home for the evening. As Lissie left, I could see the tears in her eyes. She was so brave as she left holding back showing her emotions. I know that I have repeated many times that I hate having my family torn apart but it truly is the worst part of having a sick child because I always feel like I am playing favorites and not able to be there for my family.

Mr. Seahorse, what are we doing here?

Yesterday I grabbed Anna's favorite toy. It is a seahorse that plays ocean sounds and soft music. Today it appeared as if Anna was asking her toy "Mr. Seahorse, what are we doing here?"

The reality of hospitals is that you do not get to sleep. They have to wake you up I think at least 10 times per night. It must be a rule. The other thing that has to happen is that the crazy people from the lab have to come before 6:00 AM to draw blood. I felt so sorry for Anna this morning. We were both sleeping well at about 5:30 AM when 2 people came in to “poke” her to get some blood. It was our wake-up call this morning. I know that they have to get the labs results before the doctor comes in the morning but it is just not convenient for those who are trying to sleep.

Anna is resting well today. She is definitely uncomfortable and not happy when she is awake so I am happy when she is sleeping. The pediatrician was in already this morning. It seems that Anna’s lab work from earlier indicates that things are getting a little worse (not better as expected) On top of the pneumonia she has urinary tract infection. Today she will have an ultrasound of her kidneys. Also Anna is having a slightly more difficult time breathing today so the doctor is going to have respiratory therapy get involved to check her out and give her some breathing treatments and steroids. Looks like we are going to be here for a couple of days. The doctor stated that we will be here till at least Friday but for now I am just going to focus on one day at a time.

Hot, Hot, Hot

I thought that my next entry would be the occasion of Anna turning 6 months, it seems that Anna had different plans. Anna has made today very interesting. She started with a mild fever last night that quickly turned to a really high fever and respiratory distress. I did not want to over react so I waited till the Dr. office opened this morning (I regret that decision now and I wish I would have gone with my gut and taken her in over night). After a phone conversation with a nurse and then the doctor we were instructed to go to the ER. By 9:00 AM we were in Lima. The ER knew we were coming and we were quickly taken to a room. At that point her temperature was 104.5. That is actually the highest fever I had ever seen or ever want to see again. She was grey. Her respirations were really fast. It was very scary.

David had planed to stay home today because Lissie was sick, but the Dr told us to both drive to Lima or we needed to go by ambulance. This meant that poor Lissie had to tag along and she was quite the trooper today. She has a special understanding and patience for her little sister.

At this time we know that Anna has pneumonia. They did lots of test and we have not heard the results of everything yet. Right now she is getting IV fluids, oxygen, and antibiotics. She still is very hot but her fever is starting to come down. I am not excited about spending tonight in the hospital, but I know this is where we need to be and where we will most likely be for the next couple of days.

Improvement

I feel so fortunate that we avoided a stay in the hospital this time. Although we did not end up in the big house, it has not been smooth sailing at home. She is still wheezing a lot and is obviously uncomfortable. Fortunately her fever has broke and she has a little more energy. With all of the medications and treatments that Anna is on, there are 14 different things that I need to remember to give her in one 24 hour period. Sometimes it can seem rather confusing. I sometimes look at her bib to remind me of the color of medication that I have given her. She is still getting breathing treatments every 4 hours, she is so cute because at first you can tell that she is happy to get “air” but then as gets more comfortable and her lungs clear she wants to be done with the treatment. Anna and I have stayed in the house for the last 5 days. I am looking forward to getting out of the house soon.

RSV

It seems that Anna has encountered yet another bump in this road we call life. On Wednesday morning we were informed by the day care that one of the kids in the nursery had RSV, which is a virus that attacks the airways in infants. My stomach immediately sunk because Anna had been coughing for a couple of days but I also reminded myself that we were some what protected because we have received the injections to help fight this illness. I immediately called the pediatrician and we went for an appointment in the afternoon. By this time Anna was wheezing and coughing and it was pretty apparent that something was wrong. She was given a breathing treatment at the office and then we went to our favorite place the hospital to get an x-ray and test for RSV. We got to go home, by pleading and stating that I would watch her. We were given orders for the breathing treatments and to watch her close and to go to the ER is anything changed. The pediatrician called back around 9:00 PM to confirm that Anna in fact did have RSV and to top it off, pneumonia. I am home toady keeping a real close eye on her. And taking lots of calls from the pediatricians office to make sure that there are no changes.

It brings back so many awful memories to see her struggling to breathe again. I know that she will be OK but for some reason I can not stop feeling guilty that I some how have caused this poor little child to go through so much.

5 Months Old

Sometimes I look back and think it seems like so long ago when we first met Anna and all of the emotions and pain we experienced with her birth. It is hard to remember a time when she was not part of our family. On the other hand it is hard to believe that our little miracle is 5 months old.

Anna has had a good couple of weeks. We have had a few bumps in the road but we have had some progress. A few weeks ago she had a barium swallow. This test confirmed what we already knew. Anna has severe reflux. Everything else looked fine. I was concerned while the test was being performed because from start to finish the test took about 3 ½ hours. I was in the room for part of the procedure and was able to see the live x-ray that should the barium being brought back up into her esophagus. We also had an incident where another Pediatrician changed the dosage on some of the medications when we went to have them refilled. The Pharmacist called the doctors office because he felt the dose was too high for a 10 pound baby. They cut the dose in half not knowing her history. It was a long weekend until we were able to get in contact with our Pediatrician and get the dose straightened out. The evenings are still the worst time. We have become so accustomed to her “fussy” time. Anna has started eating cereal and seems to enjoy it. Late last week she weighed in at around 11 pounds.

Anna has become very interested in her surroundings. She is so observant and is taking in everything that happens. She also loves her sisters. She gets so excited when she sees either of them. Lissie loves to talk to her and she keeps a count of how many smiles she has gotten (I think she is somewhere around 200 smiles at this point). Jill on the other hand loves to harass her little sister but Anna still get so excited when Jill plays with her.
We are still trying to figure our Anna’s nickname. Jill quickly got the nickname Jilly Bean which has been shortened to Bean. Lissie which is already short for Elisabeth has the nicknames Lou and Lisser. Baba (my Mom) likes to call her Anna Banana and sometimes David calls her Belle. I am sure over time something will stick

Anna had a good day at home today. The Pediatrician recommended that we stay home today with her to make sure that she ate well and did not get sick. She spent a quiet morning home with me. I was able to catch up on a little housework while trying to do some of my job form home. She spent the afternoon with David. It was not so quiet. Anna is not the Daddy’s girls that Jill is. After about 3 ½ hours together, David called for assistance and I could hear the screaming in the background. I returned home to a smiling baby. I think that she already likes to test her Dad.

Anna returns to daycare tomorrow. The newest challenge is how to get Anna her mid day dose of her medication. The staff at the daycare cannot administer the medication so this means that we will have to go everyday to give it to her. Since I work within a couple of miles from the day care and David works 30 miles away, I will have to take my lunch everyday and go to the daycare. I will have to sneak in past the toddler room where Jill is to avoid a “Mommy sighting” and hopefully Anna will not get too mad when I come to give her the medication and do not take her home. Not an ideal situation but it is what needs to be done.

Home, again

This afternoon we made it home, again. Anna was released from the hospital. She had lost a little more weight this morning but the Pediatrician new of my desire to get home with the entire family. We have to watch her very carefully and make sure that she eats enough. She got her new medications. One to decrease the acid production (a different one) and one to coat the esophagus so it does not make her so uncomfortable. Also her feedings have to be thickened. They are so thick that it almost looks like actual cereal that you would feed a baby. We have to cut all of the nipples on her bottles. She seems happy and content.

We were so excited to have everyone home but we quickly realized that our little adventure had worn on everyone. Lissie was tired and wanted a corn dog. Jill was in desperate need of a nap. Anna wanted it to be like in the hospital, held all the time. David and I looked at each other and smiled. We knew that this was home and this is where we wanted to be.

Another Night in the Big House

It seems that Anna and I are spending another night together in the hospital. She had a stable day but is still not taking (and keeping enough) formula down to go home. The doctor seems to believe that her reflux has just gotten worse over the past week and her inability to keep her food down has caused her to lose weight. When you only weigh 10 pounds you can not afford to lose much weight before they get concerned. Today they have changed her medications and are trying to make her comfortable. Her feedings are made with pedialyte. ½ the amount of formula normally used and are thickened with rice cereal to help to get them to stay down. Anyone who has had stomach acid issues would know the discomfort that she feels. It is like vicious cycle where she screams because she is hungry and them screams because she is uncomfortable and then eventually she loses the nourishment that she has taken. She has been more comfortable today and has for short periods of time laid in the crib by herself and slept for longer periods of time.

David and I did get the opportunity to get some dinner together. I had basically spent the last 32 hours straight holding Anna. My sister-in-law Janice was generous to come and stay with her for an hour so we could have a meal. It was a quick meal and I was very nervous. When we got back, Janice and Anna had many adventures to tell. Janice was blessed with some of Anna’s vomit and Anna was in one of her very uncomfortable periods. The nurses were trying to be helpful but Anna was just not happy. Janice looked at me and said “I do not know how you do it”. I told her that it is not a matter of how and a matter of have to. Someone has to be able to take care of her even when she is sick and irritable. The one thing that Anna has taught me is to be patient.

This evening I am thinking about all of my girls. As I lay here with Anna asleep on my chest, I know I need to be here for her but I am longing for a hug from Lissie and Jill. I am hopeful that tomorrow we will have some good news with this new medication combination and that we can return home as a family.

Waiting for nothing to happen

We're in the rare situation today of waiting for absolutely nothing to happen. And when nothing happens, it's good news.

We're waiting for Anna to drink and not regurgitate any of it. If she can accomplish that, we get to go home today. If she can't, she gets another night at the hospital.

Every time something happens, it delays our trip home.

She's happy right now, so we thought we'd share a somewhat happy picture of Anna. I read the look on her face as saying, "I've spent enough time in this hospital. Let's get out of here."

Back to the hospital

Our little puker has decided she needs a little more attention. So she's spending the night at the friendly neighborhood hospital.
We've had trouble with Anna's vomitting for several weeks. Earlier in the week, the doctor switched her over to a different kind of formula and bottle. It succeeded mainly in letting her vomit a farther distance, estimated at a foot and a half.
So in today's follow-up, the doctor decided the 6 ounces Anna lost since Tuesday wasn't acceptable. So we're enjoying the perks of blogging on the free hospital wi-fi.
Right now she's on IV fluids to help bring her back where she should be. And as long as Jessica's holding her tight, she's not too fussy.
Thanks for the prayers and concerns in the past. I'm sure they'll lead to a quick stay this time around too. It's just another bump in the road for this extraordinary young lady.
As for the parents, it's hard not to think about our last hospital stay, the two weeks after Anna arrived. It's terrifying to even think back those four months to that. But it helps to remember how different Anna is now. She's so strong-willed and full of personality, as opposed to that shell of a girl we barely knew back in August. She'll fight through it, no doubt.