another picture of Bennett

Here is another picture of Bennett. I tried to crop him off-centered just like the professional photographer did with the big kids. I thought it would make mine look like professional pictures, but not so much! He is doing well, a little fussy and gassy. He turns awful shades and has one vein on the side of his head that pops out when he gets really angry.

This week he has another appointment with the eye doctor. His eyes were not mature enough at the last visit for the dr to determine if he has some kind of condition for which preemie babies are prone. Sorry I am so vague on the details-my brain is tired from lack of sleep.

On Wednesday, I have an appointment with the physical therapist at Nathan's school to learn about his orthotics. He has been wearing them at school an is apparently doing well with them so we are hoping it improves his balance at home. One good thing about Bennett coming is that I have been forcing Nathan to do more things on his own. Today he opened the fridge door himself and took off his own shoes. Both of these things seem minor, but normally he says "I can't" and I just do it for him. He still has a cough and a couple nights ago he threw up in bed. He starts coughing and then starts gagging and eventually throws up all the food we had shoveled in his mouth for dinner. Very frustrating.

GI appt (another long entry)

So we had two appointments for Nathan today, GI and physical therapy. I took Nathan to physical therapy and Mark stayed home to watch Bennett. There was an accident on 309 and we ended up at a stand still on 309 for 40 minutes and missed the appointment. Poor Nathan was crying about missing it and poor mommy had to deal with him fussing.

Then we were out to King of Prussia for the GI appointment. As usual, we had to wait for Dr. Boyle for 45 minutes. When I complained at the front desk, they said that Dr. Boyle takes alot of time with each patient and answers everyone's questions thoroughly. To which I responded-then why not space out the appointments? I was already in a bad mood from missing PT. I also remember scheduling the appointment thinking I would be very pregnant, not home with a 6 week old. Not having Mark there made things difficult because we usually keep each other patient with the long waits. We finally saw Dr. Boyle. The dexa scan showed that Nathan's bone density is within the low end of the normal limits. Dr. Boyle was pretty vague saying that the results are not really reliable at this age. So it is a relief that nothing alarming was found. I explained our frustration about calling for the results for 2 months. He gave me an excuse about a miscommunication and thinking that perhaps endocrinology had called us with the results. He did give me his email address and the name and number of his number one guy, Mike (not sure of his title). He recommended that Nathan now get a endoscopy; however, he is not expecting to find anything abnormal. He will be under general anesthesia for the procedure. They will also do a biopsy of the intestines at the same time. Dr. Boyle explained that someone will call us within three days to schedule the endoscopy (to which I couldn't resist a sarcastic chuckle). These appointments are just so exhausting. You feel so rushed, confusing information being thrown at me, information that is way over my head. I am busy trying to comprehend the information and think of any follow-up questions I may want to ask as a result of the information received.

By the way, Nathan lost weight and got shorter according to their measurements. Obviously the shorter measurement is incorrect but he didn't get any taller. It is beyond frustrating. Every appointment for Nathan upsets me because it is a reminder of his disorder. At home I can pretend he is a normal three year old, but at the appointments I have to face the reality that he is a special needs child. Maybe it is time to stop looking at why he is not gaining weight and accept that it is due to his disorder. Dr. Boyle referred us back to feeding clinic. I took Nathan there when he was a baby and it was not helpful. They have more of a behavioral approach which is more appropriate for his age now so perhaps it will give us some ideas on how to encourage him to eat more. I guess we will not mention our timer method.

Mark and I disagree about whether or not Nathan is eating enough to gain weight. He seems to think he is eating enough to gain weight and is still not gaining weight. I believe if he ate more, he would gain weight. The calorie count supports Marks theory, but I also do not believe it was an accurate representation of his eating habits. When you are counting calories, you tend to encourage more eating to get the numbers up. I think we just had three good days.

Bennett received his Synagis shot today, the vaccine for RSV. Mark worked with the pharmacy to have it sent to Dr. Lockman's office although we do have a $1000 hold on our credit card while we try to get the insurance straightened out. I am relieved that he got it on day 29 and hopefully the next time it won't be such a hassle for Mark.

feeling anxious

So I am feeling very anxious about a number of things. For some reason I am paranoid about SIDS which I know I can't do anything about. I looked up risk factors and Bennett has two already, preemie and a boy. He also likes to bury his face in blankets. He somehow manages to work his face down into the blankets and sleeps best that way. Anyway, that is what is keeping me pumping and bottle feeding because formula feeding is also a risk factor for SIDS. Anyway, I know I am crazy and need to calm down.

Nathan has his GI appointment tomorrow. I am so anxious about the results of the dexa scan. Some guy named Mike called from his office today and left a message saying that Dr. Boyle will discuss it with us tomorrow making me even more anxious. I just can't imagine what he will say and don't want to know what it shows about Nathan's bone density.

I am also feeling especially anxious about Bennett having what Nathan has. Nathan has no belly button what so ever which is part of his disorder I assume. I decided that when Bennett's umbilical cord fell off we would be able to see if his belly button is similar to Nathan's. Well that happened last week and I can't really decide if it looks like Nathan's or not. I just can't wrap my brain around the possibility of going through this again and having two children with this mysterious disorder. I feel sick to stomach when I think of it. I feel like I will die if he does, but I know I won't. I will just want to bury my head in the ground and never come up again. This is part of the reason I don't want to know. Because I feel like my life will be over when I find out. I feel like my fate will be sealed, my life will be carved out for me. There will be no more children for us so this is our last hope of some normalcy in our lives. This is our last chance to enjoy the baby stage. With Libby it was difficult because we did not officially adopt her until she was 9 months old and with Nathan, well the stresses are well documented.

6 pounds!

Bennett is 6 pounds even this morning! He is eating very well these days-almost 3 ounces at least every 3 hours. Nathan gained weight very nicely for the first couple months as well. We looked back at his baby book and at two months old he gained a whole pound in two weeks! If I remember correctly his weight gain slowed at about 6-7 months of age. I had already stopped recording in the baby book by then unfortunately. On thursday it will be four weeks since Bennett had his vaccine for RSV while he was in the NICU. He has to get his next one between 28 and 32 days after that for it to be effective. There was some mix-up with him being officially added to our insurance, so Mark is straightening it up today so there is no delay. Nathan's vaccine was late by a couple days when he was four months old. In that time he did get RSV and ended up in the hospital. Needless to say I am very anxious and worried that Bennett won't get it on time. Mark said worse case scenario is we can pay for it and get reimbursed, but I don't know if the pediatrician's office just has it on hand. I think you have to be on "the list." Plus it is somewhere around $1000.

My boys!

Well, the update on the boys is this. Bennett continues to gain weight. Yesterday at home he weighed 5 pounds 12.8 ounces! He had a check up on Tuesday and Dr. Lockman prescribed Zantac for reflux. He arches his back a lot while eating and sometimes after a feeding, he seems like he is in pain. We will see if that helps the situation. It does not seem like he will be able to transition to breastfeeding. We have tried repeatedly and he is just not getting it. We both end up frustrated. I am very sad and frustrated, another casualty of prematurity. I would love to know if he has pycno but don't want to know either. We will probably wait until spring to have him seen by genetics. Like I said, part of me can't wait and another part of me hopes it doesn't come too soon.

Nathan has a cold with a nasty cough again. He began on Wednesday so I think it was two days that he went without being sick! We are trying to keep him away from Bennett without being mean, but it is not easy. Last night he coughed right on him. Mark called twice on friday about the Dexa scan to no avail. We have the GI appointment on Friday in which we will learn the results, but I really don't want to wait until then. Although it is only a few days away, I don't want to be a nervous wreck that morning and waiting in the waiting room with my stomach in knots.

I feel badly leaving Libby out so let me just say that she is great as usual. I can't believe she is going to be 6 years old in a couple of months. She has no loose teeth yet and is disappointed that some of the other kids in her class have already lost them. She is doing well with her reading and not complaining as much about school, so that is a step in the right direction.

One Up One Down

Well, one of our boys is gaining weight and one is losing. You guessed it! Nathan has lost weight, down to 22 pounds and Bennett is up to 5 pounds 6 ounces. I thought Nathan's pants have been falling down a lot more. I get so discouraged with him not growing out of clothes and not getting bigger. It makes me wonder how big or small he will be when he is an adult. His eating has been a little better lately or so I thought. At least Bennett is growing out of his clothes-preemie clothes but it is still a good feeling that they are getting snug. He is doing well, fussing as we speak. He wakes up every three hours almost like clockwork and eats about 2 ounces. Right now he is getting breast milk in a bottle. I've tried to get him to transition to breastfeeding but have not been successful thus far. I'm not sure how long I can keep up with the pumping and feeding because it is so time consuming. If I can't breastfeed, I will be sad to have conceded one more thing to prematurity. I was looking forward to having a full term baby and breastfeeding right away; however, if I cannot it is definitely not the end of the world.

Mark is starting work tomorrow which makes me very nervous. I loved having him home and will miss him so much. I can't quite imagine the mornings and after school hours without him. I have been very spoiled in the last 2 1/2 months. Bennett can't go anywhere right now so it will be tricky for a few months with taking Nathan to school, physical therapy and other appointments.

Here's Bennett!!

Here is Bennett on the day he came home. He looks angry like this most of the time. The first time I held him, he looked angry. Even Nathan said, "Mommy why does he always have those lines on his forehead?" Since his homecoming, Bennett has been doing well. The first night was a little rough for us because we were so worried about him breathing; however, it has been better since then. He is a typical newborn, eating every three hours or so and sleeping in between. He does cry loudly when he is hungry and sometimes has trouble settling down after feedings. He's a grutzer as we call him. It is wonderful having him home, no longer making daily trips to the hospital and holding him whenever we want. We are so glad that part of it is over. He had his first doctor appt and Dr. Lockman was very pleased with him. He does not believe he looks like Nathan and told us he sees no signs of some of the features he noticed early on with Nathan. This is in no way a diagnosis, but did give us some comfort and hope. He weighed 4 pounds 13 ounces at the appt. Dr. Lockman recommended 8 weeks after full term for Bennett to be moved to a regular carseat which stinks. That would be three months of the car bed and it is a pain. It takes up two seats and has to stay in the car. We have to take Bennett in and out of the cold each time we go somewhere. Next week he has two appts, one eye doctor and a follow up with Dr. Lockman.

Libby and Nathan are obsessed with Bennett and cannot leave him alone. I'm happy they like him; however, it does make it difficult. We don't want to discourage them, but they don't understand that they can't be holding toys over his head, being right in his face or hanging on the bassinett.

We have cut back Nathan's physical therapy at Theraplay to once a week because I can't really take Bennett anywhere for a while. We have found ourselves enabling Nathan alot more lately just because we are busy. It's far easier to hold his hand or carry than to wait for him to get the courage to walk off a curb or up a few steps by himself. He takes full advantage of course. No word on the dexa scan. Mark called for the fourth time this week and still no response. We have an appt for Nathan with GI on 1/23 so if we will definitely know then. I think Nathan may be getting skinnier because his pants keep falling down. We haven't weighed him recently though because we don't want to know.

Thank you for all your prayers and thoughts for our family. Hopefully Bennett will continue to grow and thrive at home!

He's home!

They let us bring him home! The dr called the previous day's doctor and called us back to say we could come and get Bennett. Dr. Shrager told us he is comfortable with Bennett coming home, but he just didn't know that all his discharge paperwork had been completed by Dr. Snyder. So he is home now! He failed the carseat test again so he is in a car bed which is a major pain, but he is home nonetheless. He is so tiny. We just keep compulsively checking to make sure he is breathing. Libby is so excited to have him home! Nathan is not all that enthused.

I feel sick

So I called the hospital about fifteen minutes ago to find out if Bennett is still coming home today. It was a different doctor today, Dr. Shrager, and he knew nothing about Bennett supposedly coming home today. He had no episodes last night, but he wants to wait longer for him to be off the oxygen. He is going to look at Dr. Snyder's notes and call us back. Dr. Snyder is not in so maybe he will call him at home. I am so stressed. I feel physically sick and don't know what to do with myself so I thought I would write. I can't deal. I don't want him to come home if he is not ready, and am not looking to convince anyone. If we do bring him home today, now I feel like they are not ready. UGGHH I am so anxious and feel physically nauseous.

Still on Schedule!

So we are still on schedule for a Sunday morning homecoming for Bennett, barring any other incidents. I told Mark I want to pick him up tonight at 12:01 am before anything happens. We took the carseat in today, so we'll see if he passes the test this time. He weighed 4 pounds 10 ounces this morning so he gained less then an ounce again overnight. He did have several desaturations; however, the doctor (same doctor as yesterday) said that what we need to do for these dips in his pulsox is "get him off the monitors and get him home." He believes Bennett just gulps his bottle forgets to breath and then just has to catch up a little bit. It does make you crazy watching the monitors.

Anyway, I am so excited and nervous. I can't wait to make the phone call in the morning and get over there and get him home. I can't wait to hold him whenever I want. When the kids return to school on Monday and Tuesday, I plan to spend alot of time sitting on the couch just holding Bennett! I can't believe he is coming home tomorrow and hope we are not dissappointed.

Bennett and his neighbor

I was so glad to see Bennett today after not seeing him yesterday. I asked if I could pick him up and the nazi-like nurse started to say no because he was sleeping and not yet ready to eat. Mark said he thought I was going to go ballistic on her but I did not. I calmly told her that I had not seen him yesterday and could hold him without waking him up. She said as long as I was not requiring him to interact with me!

Anyway, he is as cute as ever and doing well. He is up to 4 pounds 9.6 ounces so he gained a little less than an ounce. He has not had any more incidents and is off all oxygen. So the new day is Sunday. The doctor says he can come home on Sunday morning if there are no more episodes of his pulsox dropping. They want him to be on room air for 72 hours before they feel comfortable sending him home. The doctor then went on and on for fifteen minutes about weighing the risks and comparing it to our risk of being in a car accident and then something about driving on the left side of the road....... I tuned out for a while because he is such a goofball and talks alot without saying much. Then I made the mistake of joking with him about his picture being on a billboard at the mall (it is) and that set him off on some other tangent. Anyway, if he is a good boy, he will be coming home on Sunday-just in time for the Eagles playoff game. If he has any other incidents, it will be a long time until he comes home. If he had an incident and had to go back on oxygen, they would need him to be off of it for five days before sending him home. So needless to say, that would really set us back. I believe I mentioned before, this particular doctor gives us the impression that he did not agree with the decision to put Bennett back on oxygen; just the feeling we get. I don't want to get my hopes up about him coming home. Hopefully only two more morning telephone calls in which we hold our breath to find out how he did overnight. They are also going to redo the car seat test so hopefully he would pass and we wouldn't have to deal with the car bed.

So about Bennett's neighbor, a baby girl who is a decent size baby with dark hair. We have never seen parents when we have been there. Today we overheard the nurse talking to someone on the phone explaining that the baby has been ready for discharge, but the parents have been unreachable by telephone for the past three days and have not visited recently. The doctors are not sure if they want to discharge the baby to the parents. So I know we should not have been eavesdropping, but we couldn't help it. It's a small room and she was talking pretty loudly. Then it occured to us that the baby doesn't have a sign with her name. She has no name! She has been there since 11/8 and the parents have either not named her or have not told the nurses her name! The nurses refer to her as Baby (last name). Anyway, I would love to take her home and know plenty of other people who would be thrilled to take her home. I just can't quite imagine what could keep people from their baby. I hope she doesn't go home with the parents if they are not willing or able to care for her. It just made us very sad.

Three days later

So sorry I haven't updated. Not a lot has changed for Bennett. He is gaining weight slowly but surely. Today I believe he weighed 4 pounds 8.8 ounces. He is weaned off the oxygen and doing well on room air. They need for him to do well for two days without oxygen in order to consider sending him home. I am so done with the NICU. Two more days seems like a lifetime and I don't even want to get my hopes up that he will come home in two days. I didn't go see him today, not because I don't miss him and love him, not because I am down but just because I needed a break. I was getting lots of organizing done with the boys bedroom and just felt like I wanted to be home all day. I feel guilty, because I do really miss him. It's hard because I don't really feel like his mom yet. I will go first thing tomorrow morning.

Mark has better luck feeding Bennett than I do. He always falls asleep for me and I have to force the bottle back in his mouth. It reminds of Nathan. Nathan is outrageous. This morning I made him eggs and an english muffin and he did not take one bite. He can just sit there at a meal for over an hour and just play with his food. We were wondering if would ever ask for food or say he is hungry if we just stopped feeding him. Tonight I put him in new pj's that grandma got him for Christmas. They are size 18-24 months and they are huge on him!! They have been washed and dried already too. He's almost 3 1/2 for goodness sakes!!! Having him not outgrow clothes is very frustrating.

Nathan is talking a lot more. We didn't know that was possible, but he is really talking in full sentences and coming up with lots of ideas on his own. It is fun to hear his thoughts. Yesterday we had to call him Superman all day. He has gotten a little mouthy though, demanding we do things etc. It took us a while to catch on because we are pretty forgiving with his behavior.

We will let you know when Bennett is coming home. It will be nice to have our family all together for the first time. Hopefully we can enjoy him without worrying about the genetic disorder thing for a while.

Happy New Year!