The Premie Roller Coaster...

Yes, all my titles end with a horizontal ellipse... :)

Jen called the hospital before going over this morning (14 Apr) and learned that Ben's temperature was fluctuating a bit so they ordered a blood-draw and culture. His hema-crit was low (in the 20's in stead of the 40's) and so he received a transfusion--like mama, like baby, right? :) We hope that will help him.

To further help him, they put him back on the respirator (yup, the roller coaster), some heavy-duty antibiotics, and some morphine, because his spells have just been so frequent and quite severe (bagging, even). Right now they are just letting him rest and he is riding the ventilator which is exactly what he should be doing after working so hard for the last few weeks. All of this is well within the norm for ultra-premies, so there isn't really cause to worry or think the worse of this situation. Today marked the end of his 28th gestational week, tomorrow we start at 29 1/7.

Looking on the bright side, he is so tired from working so hard on his own for so long. What a little fighter. He also continues to gain weight and tipped the scales at 1110 grams (2 lb 7 oz)! We are praying hard for our little guy and for Jen's emotional strength as she is right there in the middle of it all.


In other news, the kids have had a lot of fun with our ward members who have taken them in while I work. We are so blessed to have a good lot of neighbors and children! After dinner today we braved the sub-freezing (or at least it felt like it) Idaho wind to attempt kite flying. We were right on the edge of what those little kites could handle and it shows in their condition :) It was fun to see them aloft for the short time that it lasted. We all came in and enjoyed some warmth and books and a chat with Mama before heading to bed.

After Nathan said goodnight to Jen, I said, "Okay Buddy, time for bed!" and he toddled right into his room, climbed into bed, and laid down. I covered him and haven't heard from him since... Wow... small blessing, eh?

We are doing well--all things considered. Joel's eyes "get blurry" when the emotions swell, we do get touchy about different things and need our outlets, but we are very blessed and grateful, indeed!

Another picture

I was on Skype with the kids the other day and they snapped these pictures. We also have some of the children today in new Easter Sunday-Go-To-Meetings garb, but that is another evening's project :)

He gets his looks from his Mother... Just cute, cute, cute!!!

BTW, he is out of the Giraffe and into a "normal" isolette (for more on the cool equipment we have seen, and some we hope to never see, see http://www.neonatology.org/tour/equipment.html). The Giraffe is an incubator that the top lifts up and three sides drop so you can get at baby without barriers... pretty fancy. But Ben has graduated and someone else can "enjoy" the Giraffe.

Happy Easter!

Easter is upon us!!! We can probably be more thankful for Christ's resurrection, but sometimes it is hard to imagine how. Over these three weeks we have met so many parents who are happy, at peace, and loving their children; and their troubles make our trials look ridiculously simple... Some children are on their 4th surgery, some have another 4-6 surgeries left. Some have lost one of their twins, others have children who are near vegetables and yet they love and laugh and live life to the fullest... The inspire me and lift me when, really, it should be the other way around. The beautiful thing about all of this is Christ's Atonement covers the pains and sorrows we all feel, and that these children will live again and are saved... how beautiful!

The older children came home last night. We were late getting out of Boise, so we were just starting to put things away when they arrived. It is so good to have them back! They had a wonderful Easter and all could tell us the true meaning of the celebration--even when loaded on heavy doses of sugar and chocolate! (speaking of, they are all in bed and the malt-eggs are calling my name... :)

We were all able to be at church today, a nice attempt at normalcy :) Things went well. I didn't know how much I had missed my Sunday School class... they are such a bastion of spiritual strength and love; some would be scared to enter a room of 17-yr olds, but with the Gospel and such wonderful youth, there is every reason to rejoice. I just feel badly that our Churrasco fell through yesterday, but we are rescheduling!

We had a great Easter dinner with Jen's parents and then they were off to home... they have been just fabulous! And, while I haven't really spoken with her, I think Carlynn and family are recovering well from my children (except they may miss them terribly!!! :)

The local Ward is gearing up to help us. The Relief Society Presidency came over tonight and we went through the schedule: Jen with Ben, me with the other children. I'll take them to some very kind families for the mornings while I work in the office then I'll pick them up and work from home and at night. We'll be with Jen and Ben on the weekends (or other days where we'll need a break) to go to the zoo, Discovery center, or any other activities!

Ben is doing so very well. Tonight they are going to 14cc's of milk every three hours. He is almost 1,100 grams now http://www.google.com/search?q=convert+1076+grams+to+ounces (there are 16 oz in a pound :) OR do it yourself at http://www.mostonline.org/BirthWeightConvCombo.htm (the pdf chart is helpful). He is just growing and eating very well. They will continue to increase his feedings.

He is doing so very well on the CPAP! He still has "spells" but I figure that will just make him a good writer someday ;) *snigger* Really, they call them spells, but it is really ABCDP(and a number of severity of intervention) So...

• A is for apnea (20 seconds not breathing),
• B - Brady Cardia (or slow heart-rate, we have seen the 30s and 40s),
• C - color (is he still pink or some other not-so-good color),
• D - desat (do his O2 saturation levels drop), and
• P - periodic (does he stop breathing or breathe shallowly for less than 20 seconds).

Then, the numbers are

1. baby recovers on their own,
2. baby needs some prodding (e.g., massage, flick feet)
3. turn up the oxygen (he is on room air right now)
   
4. something more... (we hope we don't see this one much/ever!)
   

So he has some p2 or bp2 every now and again, but he pulls a 3 once a day or so. The time is coming, so we are told, where these spells become very frequent, but that by 34-36 weeks things should calm down and pretty much stop. He should be breastfeeding about then as well. So much to look forward to and seemingly so much time to wait. We know it will go quickly (in retrospect, anyway) and it will be a 'blip' in life. Right now we are just grateful for everything we have.

Feed Time!!!

Just another update from today...

Little Ben is doing so well!!!

Yesterday we were there when they did "cares" (removing the CPAP mask and massaging his head, etc.) and you would have chuckled as he just loved the caresses--much like a puppy who is enjoying a good scratch behind the ear. That CPAP is really allowing him to rest and put on the pounds (grams, actually :); he is already over 1 kg (1040 grams this morning and 1010 yesterday and 992 the day before; 30 g ~~ 1 oz), he weighed in at 990 grams at birth.

Not only is he resting and bulking up, there is nothing left in his stomach by the time he eats again--a very good thing. So they have him on 6 cc (also 6 ml and just over a teaspoon) of milk every three hours, but every twelve hours they will increase the meal by one cc. At that rate he'll be at the 'normal' "biggie-sized" meal of 21cc in about 7 days. Of course he'll be bigger then, so he'll just have to keep increasing (probably won't stop until he hits 30, eh? That's 30 years...).

Anywho, we just couldn't feel any better about this whole situation.

We know from whence the blessings come and you all have been part with every prayer. Thank you for your help. When folks ask what they can do, for the moment I say, "rest for now and just pray... The time is coming that I'll have the children at home, that is when we'll need the most help!" No, I am not afraid of being alone with my own children--quite the contrary, I cannot wait to be with them. I am more nervous about trying to balance them and work and trips to Boise...

BTW, please pray for my sister who has her five and my five all at once!!! Thanks Auntie Nin. Oh, and that pink-eye doesn't spread!!!!! :)

Exciting times - it never ends...

So this evening we were enjoying a little down time with some new friends here at the Ronald McDonald House. While chatting we heard some sirens and kept talking--near a hospital, that is kind of normal, right?

Well, I excused myself and came to the room. Jen follows not long after, a little anxious and turns on the TV and starts hunting for the local news... Okay... Well, turns out that there was some kind of a steam leak in the OR which somehow got into the air vents in the NICU and they were evacuating some babies...

YIKES!!

When I called over, the nurses were plenty happy to talk to us and let us know that it was another unit down the hall and not the one little Ben is in. He has a new roommate for the time being, but nothing horrible happened and everyone is doing well--as far as we know, anyway.

Two steps forward, one step back

   Well, Ben took what good be considered a step back, but I chose not to see it as such. :)

  He has been having regular spells of his heartrate and oxygen levels dropping and struggling to get them back up. ( I can't remember the term, sorry.) I'm told that this is what babies at this age do. So, it is not that something is wrong necessarily, just that he needs to mature. Babies this young have trouble remembering to breathe on their own. Ben has worked hard on his own being on just nasal cannula for about 5 days now. Today they had to put him back on c-pap because he was struggling so much.  He just needed a break. They checked for infection just to make sure, and no sign of it. His ultrasound on his brain yesterday looked fine. He is tolerating his feeding well and they continue to up them every day. Right now he is at 4 ml which really isn't much, but he is gaining weight. Today he is back to birth weight at 992 grams. (about 2lbs 3 oz, I believe.) And so we forge ahead!

  Tonight Bart and I go to the Ronald McDonald House. I admit I never thought I would have to do something like this again after Joel, but I am grateful things have gone well so far. 

   I am really excited to see the kids this weekend. So excited in fact that I'm half tempted to move to Boise until Ben is out of the hospital so I can actually see them more then the weekends for the next few months. 

 Bart has been wonderful watching me like a hawk to make sure I take care of myself and watching for postpartum depression.  I try not to give him too many worries. He is looking into job possibilities but it's hard to know what to do with everything going on. Keep praying for us, only about 3 months to go............(Sorry the self-pity creeps in sometime's :))

  

A funny picture before this all happened

  My parents were visiting us right before I ended up in the hospital. These two pictures show my technological curious kids all hovered around Grandpa playing with his IPhone. 

Ben on Saturday

Thurs. -Sat.

  So here is our update for the past couple of days. 

  Nathan has been doing well up in Washington but his illness spread to Naomi. Luckily, she's still bopping around so she must not be feeling too terribly. Joel has gone from feeling badly that we wouldn't be together as a family for his birthday to completely milking the opportunity to have a birthday party with cousins, and all the family within close range, and having one with us when they return. (He's a smart kid.) I talked to each of the kids yesterday on the phone and they are having a blast. Even Nathan mumbled at me instead of just staring at the phone. 

  We will probably bring them home Easter weekend and then more adventures will begin.

   I have been growing steadily stronger physically. We had a few little scary blips like my legs swelling slightly after I was released and worrying  my incision might be getting infected, but the swelling went down and everything else looks really good. 

  We were struggling being an hour away from Ben, so on thursday we moved in with some friends in Boise until we can get into the Ronald McDonald house on Tues. They have been extremely generous to us even to the point of moving us into their room until I am a bit stronger and can do the stairs to the guest room. 

  Benjamin is the NICU "rock star." He has been on just nasal cannula for a few days and  has started feedings.  We have had lots of encouraging comments such as, "he thinks he is older then he is," and " he obviously hasn't read the premie book." You would think that this would make things easier for me but I have really struggled with seeing him. We would go to the hospital in the evening and I could barely stand being in his room for more than 20 minutes and would inevitably dissolve into tears on the way home. Of course, I would then add guilt to my plate that I have been such a wimp. 

  However, yesterday we watched General Conference for our church in the morning. Everything said spoke to us and many things spoke to me. One thing said was that Christ could have learned to understand our individual sufferings through revelation but instead he chose to suffer with us. Also said was that sometimes we have faith but it's hard to have courage. That's exactly how I have been feeling. I have faith that everything will be alright in the end but have been scared of how painful it might be to get there. 

  I came away from Conference with the desire to look beyond Ben's fragile frame and see his  powerful Spirit. I know he's an extremely Strong Being with the ability to conquer his present struggles with the Lord's help. We left yesterday to visit him during mid-day in the hopes that the time difference would also help my ability to cope. It was the best visit ever! I could see Ben for who he is, I felt great hope and we enjoyed a great interaction with him. 

  Currently, they are a little worried that he may have rotavirus and one other virus that I don't remember the name of. He is being tested for both. They are taking extra precautions when giving him care because they are both highly contagious. However, he continues to plug along and they have upped his feedings to every three hours and hopefully, if he does have them they will be gone soon or are almost gone. 

Skin to Skin

  Tues. and Wed. Bart and I each had the opportunity to do "skin to skin" with Benjamin. The closeness is really wonderful for premies development. I have to admit it was a beautiful and disturbing experience all at once.  It was beautiful to be able to hold him and do something for him,  but disturbing to feel how very small he is and feel completely inadequate in taking care of him.