A better day.

Well Bennett is doing okay. He is still hooked up to oxygen and the feeding tube, but taking most feeds by mouth. Yesterday when I was there they tube fed him and I just cried and cried. Today I just got back from feeding him and he did well with the bottle. He still had some desaturations in the low 80's. I talked to the doctor and they continue to be vague about a plan. Dr. Snyder has no time frame but talked about decreasing his oxygen and "seeing how he does" and then sending him home when he has been off oxygen for a couple days and proved he doesn't need it. He made it seem like the dips in pulsox are not that big of a deal since he is recovering on his own. We have a different doctor every day, so they seem to see things differently. They will not be in any hurry to test him for reflux he says. To me that sounds like a long time for Bennett to continue in the NICU. He is at 26% oxygen level and they go down "a couple percentages" daily. I can't believe we have been there for two weeks already. That seems like such a long time and it is so tiring. I can't imagine him there another week or even two. I'm beyond frustrated. Dr. Snyder also said they will most likely not do the carseat test again so it looks like he will be going home in a car bed. Who else has to bring their kid home in a car bed? No one I know. Several of the other babies are going home or have gone home recently which makes it hard. It is so hard to hold and feed your child with eyes watching you and making suggestions about how to hold him or burp him etc. Hmmm maybe this doesn't sound like a better day, but it has been I guess. Bennett weighed 4 pounds 4.6 ounces this morning so lets hope he keeps going up! At least if he is going to stay there for such a long time, he can be bulked up by the time he comes home.

Pictures

I've been wanting to have Nathan's picture taken by a professional photographer who could truly capture him. We found a talented photographer in New Jersey, Carrie Steffe, who took the kids pictures right before Bennett was born. We were really happy with the pictures and I wanted to share a couple of them for those who didn't see them.

Another Setback

I have been so positive these past two weeks and where has it gotten me. I was okay with the delay from Christmas eve to the day after Christmas and then even dealt with the dissappointment of having him home on Monday or Tuesday of this week and now we don't know when he is coming home. Bennett is back on oxygen because his pulsox continues to dip into the 70's and even sometimes in the 60's now. They are not sure why it is getting worse, possibly because he is eating more and is having reflux. He did not gain weight overnight. Now we have no date for his homecoming. It feels like we keep getting knocked down. Why do we continue to have so many struggles that so many others don't have. I was accepting of the prematurity in the past two weeks and just happy to have him here and doing well. Now I am wishing I could have gone full-term and brought my baby home like everyone else I know. I can't believe we have had two premature babies, two rounds in the NICU and the other things that go with prematurity during the first years such as early intervention again. For two weeks I have seen my son for about an hour every day and I am tired of it. I miss him. I'm tired of our house being in crisis mode, taking turns driving over there, calling every morning to see how he is doing and being at someone elses mercy to visit, hold and feed him. It takes a big chunk of the day to go visit him. Yesterday we went with the kids and it was three hours from start to finish until we took turns with the kids in the waiting room. Last night I picked up my coat to hang it up and Libby got upset because she thought I was going over to the hospital. I feel like our house is a disaster because he came so early. The room is not finished, I can't find clothes for the kids, Nathan is still sleeping on a mattress on the office floor.

This is all in addition to the worry of the desaturation issue. I am not sure what will happen with that. It is just kind of a wait and see thing, which is the most frustrating part. The doctors and nurses have given us different information about whether or not they would test for reflux or give medication for reflux. The longer he is there, I worry about bonding with him and the less likely it is that I will be able to breastfeed. I have spent all day in bed, haven't eaten and haven't showered. I am a strong person but feel like I have reached my limit. I am sure I will get up again, but much more tired than before. As Mark says, it feels like we keep getting punched in the face. You may think I am overreacting to this news about Bennett, but like I said it is after a series of struggles for us that most people do not have to deal with. I think we deserve a break, a period of normalcy and it feels sometimes like that will never happen. It feels like since infertility began 7 years ago, everything has been a struggle for us.

Bennett update

So sorry Nathan that Bennett has taken over your blog. Actually maybe you'll be happy some of our energy and worry is redirected. Bennett is still not home. They were planning on sending him home Friday, but his pulsox keeps dipping into the 80's and occasionally into the 70's. It always comes back on it's own, but still concerning. He failed the car seat test so we will have to buy a car bed for him to use for a couple weeks until he is big enough. It lays horizontally on the seat so Libby and Nathan will have to go in the third row of the car for a little while. He was cruising along so nicely and now seems to be giving us some trouble. Originally our mindset was three weeks, but then they gave us indications of him coming home before then which got our hopes up. Running back and forth to the hospital has gotten old. It takes a long time by the time you drive, get in the hospital, wait for the nurse so you can hold him etc. I feel guilty about doing "shifts" with Libby and Nathan too and everything revolves around one of us going to the hospital to see Bennett. So now they are talking about early next week for his homecoming, provided his breathing resolves itself.

Stalled Homecoming

Bennett did not gain weight for the second straight day. He remains 3 pounds 14 ounces. To me it feels like a repeat of Nathan. It may not be all his fault though. (Isn't that a parent's job-to make excuses for their kids!) He is supposed to be on an ad lib feeding schedule; however, they have been feeding him every four hours. We have been there a couple times when he wakes up hungry after 2 or 3 hours and we have to wait a half hour or so for a nurse. Or we are getting ready to leave and he is starting to wake up hungry only to find out later that it was an hour or more until he actually ate. The nurse today agreed that he may need to eat more often and said it looked like he was waking at night every 2-3 hours and they would put the pacifier back in and he would go back to sleep for another hour. The nurse in charge of Bennett is also in charge of the baby next to him. This baby, who appears to be full-term, requires a lot of care for respiratory problems. I feel bad for him and his parents because he does not seem to be doing well, but sometimes Bennett appears a bit neglected because the other baby takes priority.

the worry

Well Bennett is doing well in the Nicu. He is off all oxygen, out of the isolete and had his NG tube removed several days ago. He is drinking about 30-40 cc's by bottle every four hours. From Saturday to Sunday he gained two ounces and from yesterday to today he stayed the same so he is 3 pounds 14 ounces. His head ultrasound showed no brain bleeds (I can't imagine for parents who have to deal with that) He has had a couple dips in his heartrate after eating, but they say this is nothing to be alarmed about. Each time he came back on his own. They are talking about sending him home the middle of this week which kind of scares us. He seems way to small and fragile so we are actually hoping they wait until after Christmas. We are anxious to have him home, but don't want him home before he is ready.

The worry about him having Pycnodysostosis or whatever Nathan has is unimaginable. We are constantly looking at little signs. Even Mark is in on the act and checked the back of his skull for wormian bones. His skull appears to be firm in the back, no soft spot back there like Nathan. That is an awesome sign, but then there are lots of typical premature things that could also be attributed to a genetic disorder. I think his chin appears recessed, he has a highly arched palate, his fingers are wrinkly and his ears look lowset. Like I said, this is only me that sees this and could all be attributed to prematurity. Then again I was the only one who kept insisting that Nathan looked different too so who knows. Plus everything I read on the internet says that connective tissue disorders cause premature rupture of the membranes. Everything just seems too similar for him not to have pycno. I have all kinds of questions for God. Is the prematurity his way of preparing us for another diagnosis? Because if he doesn't have it, then why wouldn't God allow him to be born full-term? If Bennett does have it, why did God allow us to get pregnant again? I guess I'm just confused right now.

Baby Bennett

Well I didn't make it once again and after three days in the hospital, Bennett Gerard was born on Sunday, December 14th at 11:19 AM. He weighed 4 pounds even and was 17 inches long. He is in the NICU at Abington and will probably be there for at least three weeks (based on how long Nathan was there). He is now down to 3 pounds 12 ounces and may still lose a tiny bit more until his feeds are up to where they are supposed to be. He is no longer on oxygen but is under the bilirubin lights due to jaundice. He was at 10.4 and it should be 1 or 2. Overall he is doing great, just the usual preemie things.

It has been an awful and emotional few days. I am beyond sad that we could not have had a full-term baby and gone home from the hospital with him. Leaving a baby at the hospital again and visiting him while he is connected to tubes and wires is no fun. Doing it the second time is much less traumatic because we know what to expect, but my heart is much heavier this time around. I am sad that I am not still pregnant as I was enjoying myself (for the most part). I am wondering why God said "no" again. It will be difficult for the next eight weeks knowing that I should still be pregnant.

It will be a while until we know if this baby has Pycnodysostosis so of course that is hanging over our heads. It seems like with everything playing out the same as it did with Nathan, that it is a good possibility. Bennett is very cute. He has blondish hair. He looks like a typical baby as did Nathan when he was tiny. We have examined him from head to toe looking for any sign and it is driving us nuts. It certainly is not fair to Bennett but impossible not to do.

Not to be ignored, Nathan has Pneumonia. He had a chest x-ray yesterday at Abington Hospital. Fortunately Mark was picking me up from the hospital and visiting his other son, so he could do all three in one trip. Now tonight Mark's mom has been admitted to the very same hospital due to shortness of breath so now we are worried about her.

Still no word on the Dexa Scan. Mark called again and we haven't heard anything back. It doesn't make sense that you have to track down test results from three weeks ago.

no word on Dexa

We still have not heard any news on the Dexa scan. We were told we would hear by the end of last week. We left a message with the office on Friday and they still have not called back. I am hoping it is not a wild goose chase to track down the results.

Nathan has not done well with wearing the orthotics because his skin is so sensitive. They still have not been sent home because he can't wear them for more than 30 minutes at school without serious soreness.

On Friday, Nathan had a routine dentist appt. He is still missing two teeth on top and six on the bottom (if I remember correctly).

We started a star chart for Nathan. In order to earn a star he has to eat a decent amount at mealtime. This was Libby's idea because she has a star chart for bedtime. When he fills up his star chart he is going to Chuckee Cheese. The nice thing is that if he didn't eat anything for dinner (which is often) he can still have dessert. It is also intended to cut down on the battles at mealtime, but that is still ongoing. He could sit there all day. Mark started putting on the timer for him and telling him that if he eats a certain amount within that time he gets a star, if not he can try again at the next meal. I thought this was a bad idea that will certainly scar him for life, but it does seem to be working! I can picture him in therapy now-"My parents used set a timer at dinner time...."