Bittersweet

Bug also loves to share.  She will share her binkie with Daddy and I, sometimes even offer it to sister.   She will share her food, especially with Big Yellow Dog.   She likes to tease Big Yellow Dog, she will offer the food, giggle and take it away.  Mostly she just gives it to him.   Yesterday I caught him just going in and taking her cookie away very gently while she was distracted.  I gave Bug another cookie which she promptly gave to Big Yellow Dog.   Sometimes she will take a bite of cookie, let Big Yellow Dog have a nibble or lick and then take a bite herself.   Before you get excited, we try to stop her before she gets in her mouth, but sometimes, it happens before you know it.   If there is something you put in front of her to eat that she doesn’t like, she will do a sideways throw off the highchair.   I told Daddy to watch what I did the other day - I put a piec of broccoli in front of her when she wasn’t looking.   Just as I expected, she grabbed the broccoli and flung off her highchair it to the right.  She hates broccoli, so do the dogs.    She is growing up so fast.   She will walk a ways now just holding onto one hand.  She does it in a kinda side-step fashion.   Last night Bug and I laid on our backs on the dog beds and pointed to things in the room and chatted.   Then she would growl and attack me.   It’s good to be with Bug.

Today Daddy is watching Bug and Littlest all by himself while I work.  Bug has a fever, so can’t go to daycare.   Daddy said that Bug talked in her sleep a lot last night.  Too cute.   Everybody is tired at our house.  I have that cold and Bug has the fever, Littlest is just doing her being a baby thing, and Daddy hasn’t gotten much sleep because the rest of us. So we are on all on a low functioning mode.   Oh well, such is life in the two kids in the one and under phase of life.  We will live, barely, but we will.  It’s just starting to get really fun. 

Bug has been wonderful these last four months as well. She loves, loves, loves her little sister. They can’t sleep in the same room because if Bug wakes up, she is obsessed with looking at her sister and won’t go back to sleep. Bug now says “baby” and “sissy.” Bug has also become even more of a snuggler. She used to be happy in the crook of your arm. Now she has to be full body on body contact. Even if she lays in bed with me, she will crawl up and try to lay on me. I love it. She is so loving and will readily give a smile and hugs. She has been going through a bit of a tantrum stage where she will put her head down and cry if she can’t have what she wants, but usually it’s because she’s tired. She also has the fake cry down pat. I think some of her tantrums and such have to do with the fact she is getting a bunch more teeth in. She also is taking long naps (which she never does) both at home and daycare, and she has been going to sleep by 7:30 at night again (thank goodness).

It’s still not a wonderful, perfect, no problem, easy life, but it is better that Littlest is home and our little family is together finally.

If you donated to the March of Dimes, thank you!

Bug is doing well in her young toddlers room at daycare. She is one of three who aren’t walking yet. Daddy was a little worried if she would get bullied by the walkers, but the teacher said that if someone gets into Bug’s business, Bug takes care of it and crawls over and takes her toy back or whatever. Go Bug! She has been having more trouble sleeping at night, but I think it’s because she is having another wave of new teeth coming in, including molars. She drools a lot. I’ve missed my time with Bug. Littlest takes a lot of time, but Bug loves her Daddy, so they get alone well. I have been making time for Bug and we have some good snuggles and playtime.

After we got home from the negligent children’s hospital we all were exhausted and managed to sleep pretty well. Early Thursday morning, Littlest managed to pull out her feeding tube. Hmmm….seems to me that wasn’t supposed to happen according to Ms. I’m too busy to teach you nurse. We had an already scheduled appointment with the new pediatrician and so I waited until we went in to have them put the tube back in. We actually saw the new pediatrician. I love her. She is no nonsense, but yet compassionate and very perceptive. She had me crying in less than 5 minutes. Okay, I cry easy, I know that, but I’ve been very good lately about buckin’ up and suckin’ up. She just immediately knew the situation and seemed to know our stress points and where we needed help. I’m sure years of experience taught her that, but compared to our old pediatrician, there is no contest. I felt comfortable and not frustrated. My questions were answered before I even asked them. She also understood that we were constantly having appointments every week, so she said to schedule every other week so not to stress us all out. Wonderful!

We then had a 2:30 appointment with the home health nurse to learn to insert the feeding tube. Once again, I was not really impressed. Mainly what we did was paperwork. She was one of those slow motion people, nothing happened fast. What could have been done in half an hour, was done in almost two hours. She would be writing something down, then slowly look up and over at Littlest, then make a little noise and then go back to her paperwork. Then she very briefly said what to do to insert the feeding tube and that we weren’t going to actually do it because it seemed to be in fine and no use stressing out Littlest. Well apparently Littlest decided I needed to actually do it because she pulled out her tube a few minutes later. It really isn’t any big deal. The hardest part is getting the tape on her face to make it stay. I’ve re-inserted her tube about four times now and it’s not so bad. So, if you ever need an NG tube inserted, I’m your man. The home health nurse finally left, slowly, and we took the rest of the day off for good behavior.

Friday was Bug’s 12 month checkup and shots. She is such a good girl. She only cried a little bit. She slept for about three hours afterwards though.  Her height has finally reached the 52nd percentile and her weight is still in the 30th, but her head is way up there.  She is doing good, reaching milestones, and just an all around joy.   Daddy took her to her appointment with the old pediatrician since the appointment was already scheduled. It will probably be the last time Bug goes there. Even though I really like the doctor and I’ve seen her for years and years, but since she went into her own practice, she is always too rushed and I feel like she’s out the door before I even get to ask my questions. Oh well, time to move on.

Saturday I took a couple hours all to myself. I took a Knifty Knitter loom knitting class at Craft Warehouse. It was fun. I think I could “knit” using the looms and it’s easier on the hands that’s for sure. 

So that rounded out the week.   I have to add to my previous post about the stay at the lack of care hospital.   When my child is in the hospital, I want to be there and help care for her, I just didn’t think I would be doing most of the care.   I had more monitoring and watching when I had my gallbladder out as an adult than she did as a preemie on a peds floor.  Very unacceptable.  

The resident informed us that they would be admitting Littlest One, but not to the Baby Factory, but instead to the peds floor at Doernbecher. Oh this was going to be great because we could stay with her and there was a family room with coffee, etc. So when they finally got Littlest in a room at about 2 am (we had started this whole ordeal in the ER about 5:30 pm), I figured they would be monitoring her and have someone checking in on her fairly frequently. Who wouldn’t think that, she is an ex-preemie who was turning blue. I was wrong, very wrong. First the nurse wasn’t going to hook Littlest to their monitors, she was just going to leave her on our apnea monitor. I told her that I wanted her on their monitors and besides that, ours was running on battery and had been doing so since 11 am and only had a 20 hour battery. How on earth would THEY know if she was having a spell if she wasn’t on their monitors? I also had to tell her that it was time for Littlest to eat and what she ate and how many k/cals it was and that we could do a tube feed. I also had to tell her what we used for the tube feeds and ended up using what I had broughtn(syringes, etc) . I also had to use the blankets we brought from home. After a while, I realized that the monitor wasn’t working properly, it was alarming all the time (and no one responding) and the heart rate monitor wasn’t even registering most of the time. The nurse finally adjusted that, I fed Littlest, and I got her snug and asleep by about 4 am. During this time, two residents came by to assess her. One had known Littlest from the Baby Factory, so I didn’t have to give any history, just the current situation. They examined her and went on their way. Daddy had gone home while we were still in the ER and I told him just to stay home, there wasn’t anything he could do at the hospital. I finally got a couple hours of sleep before the resident came in.

The resident came in and took a detailed history and told me what their plan was and wanted to know how I felt about that. Fine. Then she said another resident would come in and take the history again because he was presenting it in rounds that morning. While I was waiting for the second resident I had to track down the nurse to get more food for Littlest. It was past time to feed her. When she finally came in, she had to ask me what we were giving Littlest and how. Once again I had to tell her and then ended up feeding her myself with my supplies. I didn’t see the nurse for hours after that. I think it was the next feeding when I had to track her down again (feeds are every four hours). None of Littlest’s feeds were on time, usually half hour to hour late. I also had to tell them to give the medications, etc. I usually give everyone the benefit of the doubt when I first deal with them. I rapidly found out that if anything was going to be done, I couldn’t depend on the nurse or the CNA to help us. In fact, I was terrified to leave Littlest alone because no one seemed to be checking in on her. I took care of her, changed her, fed her, watched the monitor, weighed the diapers, made sure she was warm and her color was good. Basically everything I did at home. So why did I even bring her here? Because the Baby Factory was so wonderful, I expected more.

I dozed off and on until the residents came in to do rounds. The resident who was presenting Littlest’s case did a dismal job. He had half the information wrong and the first resident and I kept correcting him. Luckily the supervising doctor examined Littlest and asked me questions and we went over the plan and off they went. What was decided was that because Littlest was doing okay, we could go home or if we felt uncomfortable with that, they were willing to keep her another night for monitoring. Heck no! Nobody but me appeared to be monitoring her, so why stay. So it was decided to discharge her and we just had to let the nurse know when we were ready. Ummm…NOW! So I tracked down the nurse and told her. This was about 10:30 or so. We didn’t leave the hospital until about 6:30!

While we were waiting to be discharged, we saw the discharge planner, social worker, and a few others. The nurse was supposed to train me on placing the feeding tube. She was not wanting to do it. She convinced the resident that Littlest wouldn’t accidently pull the tube (which she did about 4 the next morning). The nurse still hadn’t come in to do the discharge paperwork at 4 pm, so we got busy being annoying and trying to get out of there. Daddy, meanwhile, had to go back and pick up Bug from daycare. I decided I should get something to eat, but I was terrified to leave Littlest alone. I waited until she was asleep and looked okay and then ran off for 15 minutes to eat. By the time I ate, Daddy came back with Bug and Littlest ate again, we sat down to wait another hour and a half for the nurse to get the paperwork done. She gave us every excuse possible why she wasn’t doing the paperwork or helping us. At one point, I went out into the hallway to try to find someone, I didn’t see anyone in the hallways, not a soul. It was weird. It’s a big place and no one was around.

When we finally had the paperwork, packed up and ready to go, we asked the nurse for something to help us out with all our stuff. She said there wasn’t any wheelchairs or wagons available and it would probably take another hour to get one and she didn’t have time. WTF? She was the most unaccomodating individual.

We finally got home about 7 pm and everybody was exhausted. The next time we have a medical problem with Littlest, I won’t take her back to Doernbecher. Their specialty clinics and specialists are wonderful and so were the doctors and the Baby Factory too, but the peds floor was horrible.

I was furious by the time I got home. I felt that had I not been there, Littlest wouldnthere, Littlest wouldn’t have had adequate care and who knows what would have happened.  

I swear that starting Sunday Littlest was pale. She has a darker skin tone than Bug, so it’s pretty clear when she’s pale. Anyhow, back to the story. Daddy had an appointment right after the Feeding Clinic appointment, so we raced back to hometown and Littlest and I waited in the car for him. About 10 minutes after Daddy went in, Littlest started crying and nothing consoled her (which isn’t really like her). So I decided to tube feed her right there in the car. So using my best McGyver-like moves, I warmed the milk in small quanties in a little bottle using the heat between my legs and under my arm (I didn’t have the car keys with me to use the heater). I slowly allowed the milk to drip in the way I was shown and she acted like she was in pain. I stopped the feed and let her rest. She still was crying, so I decided to change her diaper. Mind you I’m sitting in the back seat of our 4Runner with Bug’s carseat on one end, Littlest’s in the middle and me at the other end. There is not enough room to change a diaper, but I managed to do it. She still was crying. The only way she was consoled was by me holding her. When I held her, she would have a spell. By that time, Daddy came back to the car and we headed home with her crying. At home I put her all snug in her basinette. She had another spell. I picked her up and held her and would sway and watch the monitor. When I did that, we had good heart rate and respirations. I would stop and she would stop breathing consistently. I finally got her to be more stable and put her back in the basinette and went over to the computer to check my email. The monitor sent off five shrill beeps. I raced over and Littlest was that dusky blue color. I did gentle and then more vigorous stimulation. It took a lot of stimulation to get her back to normal color and breathing. I put her back down finally and she promptly had another milder spell. Then she had another spell with some color change. At that point I called the new pediatrician’s office.

Given the fact that we have never actually seen Littlest’s pediatrician ever, I’m impressed with the office and how they handled everything. After the advice nurse consulted the on-call doctor, it was determined that we should go over to OHSU/Doernbecher’s ER and have her evaluated immediately. The pediatrician’s office called ahead to the ER and gave them the history we had told them and the fact we had a preemie just discharged. So the ER knew we were coming in. We didn’t get in particularly faster, but they did take special precautions and made the risk to Littlest as low as possible. Once we were put in a room, the supervising doctor came in and got a bit of history and then promptly asked us to join a study regarding RSV and we would get $50 in Fred Meyers gift certs. Sure why not. When the residents came in, we were happily greeted by one of the residents who took care of Littlest back in Pod 2. By the way, she had on the coolest Dansko shoes ever. They were black and someone had painted a white flower design on them. After an RSV swab, a chest x-ray, extensive history taking, and watching Littlest have a tube feed, they decided to admit her to Doernbecher.