Sunday, May 31, 2009

Discharge me!

Adam entered the NICU under Dr. Makwon's care for the first 29 days of his life and received a green light for discharge from him today as the weekend rotational doctor. 60 days has been long enough. If we had been able to get a home monitor from Apria, he would have come home today. Apparently they only do emergency situations on a Sunday so we will call first thing in the morning. In the meantime, we are keeping up on the schedule to be at the hospital for every feeding. The last thing we need now is to let down. If he would have too many times reverting back to less than the minimum range, the doctors would consider putting his feeding tube back in. And since we will be caring for him at home and not the nursing staff, we'll ride it out to see it through to the end. Kudos to Grandma Marilynn for coming down on short notice to help feeding Sara while we napped. Without her, it would not have been possible to keep up the crazy schedule that I think made all the difference in getting our kids reunited.

Saturday, May 30, 2009

Adam has achieved orbit!

It's official - Adam finally gained enough momentum to reach escape velocity and make it to the lofty heights of 100% nippling. He finished his 8th consecutive bottle. And not just finished, but finished at a sprint of 8 minutes with Dad feeding him (I've not had the best success rate until this 24-hour bottle-thon began).

The home page has a chart for the detail-oriented people who are curious about exactly how many mLs he drank each time. babies.mollenhauers.us

I'm tired even though I just ate a plain chicken sandwich and a sixpack of chocolate donettes. Need to find a quiet place to nap where the chainsaws of large snoring people aren't running.

Committed

So far our commitment to be here at every feeding for Adam is paying off. He has accomplished the minimum requirement or better 6 feedings in a row now and I'm getting ready to go for 7. The nurses are all rooting for us. It's a challenge, that's for sure. I got 3 hours of sleep last night and headed back to the hospital at 4:40am. Shannon had just gotten home and climbed into bed. He had napped a few hours in the truck in the parking garage during his 11:30pm and 2:30am shift. They have a recliner in the parent waiting lounge but I guess it was already taken and the snoring was too loud!

I'm glad our kids will know we are totally committed to them. Hopefully when all is said and done they won't have to have us committed!

Friday, May 29, 2009

We're movin' in!

Adam seems to struggle with consistently taking a bottle due to the rotation of nursing staff. Some don't know that it is his personality to be laid back while eating. Or they don't give him focused attention. The location of the slit in the custom-modified nipple is key, as well. If it is horizontal, it closes when he sucks and he wears himself out and gets nothing. He needs 8 feedings in a row getting at least 35mL of his 35-45mL range in order to have his feeding tube removed and give his car seat test a go. And he needs 16 in order to be discharged. So this morning Shannon and I decided that we are going to commit to being at the NICU to feed him as much as possible. We have to learn how to feed him in the long run anyway. Maybe he just wanted more time with mom and dad. You should have seen him look at me tonight as we talked. I think that is the most alert and wide-eyed he has been in a while.

So Shannon took the 11:30am and 2:30pm shift, accomplishing 41mL at the latter and starting a trend that we will see if we can continue. I came on for the 5:30pm and he took 41 again. As we speak, I am sitting in the wonderful (?) St. Francis cafeteria munching on cold fries and a cheeseburger that would be better if it wasn't the end of day product. But the turtle cheesecake on my tray is going to make it worth it. I'll do a little work and then stick around for the 8:30 feeding and we'll go from there. After a last minute phone call, my mom hopped in the car to come down and help with Sara duties for the weekend so Shannon and I can nap from time to time as we trade places and babies.

We may be crazy and wear ourselves out but it will be worth it in the end if we can get him home in a few days. If he's not ready, then he's not. But we want to do everything we can to unite the family if he is ready. Short-term commitment for a long-term pay off, right? Now for that cheesecake...

Wednesday, May 27, 2009

Adam eats a cookie...Sara gets invited to LePeep

Adam - My boy has had a whirlwind of craziness the past few days. After getting a surprise visit from a feeding therapist on Sunday, we changed to a blue nipple and made the hole a slit for the rice mixed with breast milk to flow through better. It has made all the difference! I guess it has been more about the nipple all along. Once the change was made, Adam took over 75% of 5 bottles in 18 hours. Come on now, who's excited with me? Even Dr. Clark says Adam has been teaching her patience! The nurse decided to put Adam on a "queue" schedule, which means they give him a bottle any feeding he seems interested. I arrived Sunday night hoping to continue the streak and found that he was getting a blood transfusion. It's always hard when they find a good vein in his head. At least I got to hold him and we rocked, which we usually can't do after a meal unless you want to clean up a mess! His hematocrit levels had dropped and made him anemic. That may have also been the culprit of some of the higher heart rate and his increased irritability.

Yesterday he had a "cookie swallow" test that Shannon was able to observe. One final exam to make sure nothing is going on inside that is hindering his nippling ability. They gave him 3 different bottles that had liquids of varying thicknesses, ranging from breast milk to honey. A radiologist and feeding therapist then watches on a monitor how he swallows and whether the liquid goes in his stomach or gets routed to his lungs. All functions are normal...so it's just about the blue nipple. I was able to give him a sponge bath last night,which he certainly doesn't enjoy as much as his sister. I did learn that when Adam gets irritated, he doesn't just get red in the face but his entire body turns red - like a little jalapeno pepper! Not sure why my calm little man has this cranky side that he didn't used to have. The mama in me says he is tired of being poked and prodded and just wants to be home for some lovin'.

Speaking of that, we are headed in that direction. Now that it is confirmed there is nothing major wrong and we are moving positively with drinking bottles, we are in the initial stages of working through the discharge checklist. He has been changed to a range of 35-45ml of breast milk. The last test to pass will be his car seat test once his feeding tube is no longer needed. We are hoping he will hit the 5lb mark tomorrow and will be able to fit in his car seat rather than a bed like Sara.

Sara - My girl had another pediatrician appointment. Dr. Neese has invited her to a local restaurant, Le Peep, for an omelette since she is eating so well. He would be happy with 3/4oz weight gain per day. It had been 8 days since she had seen him, which would calculate to a 6oz gain. She blew past that and posted a 12oz gain since the last visit. Exciting signs that she is a healthy baby girl, especially for still being 4 weeks out from her official due date.

Her biggest news to report is that she hates the home monitor as much as we do. We went to the health care office yesterday to download the results from the past few weeks. After calling the sleep lab this morning to check on it, the technician quickly scanned through and reported that all the events were false alarms. She then explained how to correctly place the pads to get better results, which was pretty much opposite of our training from the monitor company. How frustrating! We will certainly be passing that information along.

Other than that, she eats everything in site, including her outfit, blanket, burp cloth, hand, whatever is in site. The other day she tried sucking on her hand at the same time as the bottle. And this morning I wish Shannon was here to take a picture of her hand helping me hold the bottle. God only knows what we have in store for this firecracker!

Saturday, May 23, 2009

52 days and counting

52 days. Think about that. What else in your life can you say that you have done exactly the same things in your day for 52 days straight. Now I'm not talking about brushing your teeth before you start the day or always putting your pants on the same. I mean everything about your day. No weekends off. No holidays. It's like the movie Groundhog's Day. 95% of the time we have gotten up at the same time, made milk for the babies, let the dog out, had breakfast, made more milk for the babies, showered, left for the hospital, had lunch, made more milk for the babies, napped or worked on chores, made more milk for the babies, had dinner, left for the hospital, made more milk for the babies, went to bed, got up in the middle of the night to make more milk for the babies, went back to bed. And do it all over again. Obviously with Sara home we are trying to adjust to a new schedule to take turns feeding her and doing split shifts to visit Adam in the hospital. It is so odd to be able to peek in on one of my babies any time I want and the other I have to drive 20 minutes to see him once a day. It will be so nice when we are all under the same roof as a family.

Baby boy Adam is hanging in there considering all he has been through. Last week he had an EKG, blood work, echocardiogram, eye test, and circumcision all within 2 days. That would wear just about anyone out! His heart tests have all come back normal so we are pretty sure that his high heart rate issues last week were, in fact, due to an intolerance of the caffeine. He has now been off caffeine completely since Tuesday and only experienced 1 bradycardia in that time. That is stellar performance for Adam! Adam's eye test revealed some signs of premature eyes and will be examined again in a few weeks to see if they correct themselves on their own. He is recovering from his circumcision as best as can be expected. Tylenol eases the pain. A feeding specialist has evaluated him a few times to offer suggestions for improved nippling. She feels as though his reflux may be hindering him a bit as he has episodes while trying to eat. Who would want to swallow when it feels like something is coming back up? We are mixing a little rice with his milk to act as a thickener so the breast milk won't come back up as easily. Yesterday he consumed more than 50% of both bottles but did not repeat today. Still tired and a little under the weather from the "procedure" I'm sure. Nurse Ratchet didn't help this morning - offering her opinion as to how what we were doing was all wrong and the doctors don't necessarily know what they are doing. Let's see, Dr. Clark has been with Adam 32 days of his 52 alive but clearly your 4 hours of observation during the only shift you have been assigned to him outweighs that. Don't get me started...

As for Sara, she had a visit from the home health nurse on Thursday last week. 4lb 6oz on her scale, up 4oz from her previous visit 4 days earlier. Friday she had a follow up eye appointment and Dr. Reddy said she has no issues that require further visits. Both babies should see a pediatric opthamologist in a year as preemies are more susceptable to vision impairment. Today has been an exciting day with a weekend visit from Grandma Marilynn (my mom). And this afternoon was bath time! Can you believe we didn't hear a peep out of her? Maybe she is going to turn into a little fish and love the water as much as I do. To top it off, Ashley Rae swung by to help with some much needed cleaning. Well, she didn't really help - she did it. What a wonderful way to serve us when we had been getting so behind.

Speaking of Groundhog's Day, time to go make more milk for the babies...

Thursday, May 21, 2009

Monitor madness

May 19...
6:42pm, 6:44
7:39
8:05, 8:06, 8:07, 8:09, 8:18, 8:20, 8:22
9:47, 9:56, 10:09, 10:11, 10:12
11:02, 11:12, 11:13
12:28am
12:44
6:12, 6:20, 6:23, 6:27, 6:31, 6:46, 6:50, 7:13, 7:16
7:52
9:31, 9:35

She can't be not breathing when you go check on her and she's sucking a pacifier. The leads had been changed earlier that day so we thought it wasn't a problem with that. If she is seriously having breathing issues, we would definitely want to hear the alarm going off as many times as needed. But if it is a malfunction, well, it's just plain annoying.

Ladies, it sounds like an oven timer going off but MUCH louder.
Guys, think an annoying backup alarm and you've got the idea.

I changed both leads (2 sticky pads stuck to her chest with a snap that connects the wires going to the machine) yesterday morning and thankfully, we had a monitor alarm free day!

Wednesday, May 20, 2009

Too much caffeine?

It was my turn at the hospital last night with Adam. I undressed him to take his temperature and change his diaper. He seemed quite irritated, much more than usual. The nurse came over, concerned, to help calm him. His heart rate was above 230 and she decided to let the neonatal nurse practitioner (NNP) on duty know what was going on. While she pulled up his monitor at her desk, the nurse at his bedside and I decided to pass on his bottle feeding. Instead, I opted to kangaroo him to provide comfort and try to get his heart rate to settle back down. To look at him, he appeared extremely relaxed. But his heart rate remained in the high 190s or low 200s. Very unusual for him - it is typically in the 150s or 160s while we kangaroo.

On my way out for the evening, I spoke with the NNP to let her know my input regarding Adam's caffeine lately. Last week they were administering a level of 18 to stimulate his brain and keep his bradycardias at bay. On that level, he was already having periods of high heart rate while he was awake. Dr. Clark was considering reducing his caffeine or possibly administering it twice a day. Unfortunately, she took a well deserved weekend off and the on call doc did not read the notes in the chart. Instead, he followed typical body weight protocol and increased Adam's caffeine to 20. He had now had 3 doses at the higher level before she came back and reduced the level to 15 yesterday. I told the NNP I didn't understand why the rate would be increased when he was already showing signs that his body didn't like the current level.

Shannon relayed our concern and irritation to Dr. Clark over the situation this morning. Professionally and respectfully, she can't slander another doctor to agree with us. Irritation is putting it lightly.

Dr. Clark ordered Adam's caffeine to be stopped completely this morning, as well as an EKG administered to make sure there is, in fact, nothing going on with his heart. We are waiting for the results to be analyzed. She also ordered a blood test to check his hematocrit levels to rule out another episode of anemia. At this point, Dr. Clark is making sure there are no negative issues going on. If it is due to an intolerance of the higher level of caffeine, we will have to wait a few days for his body to wean itself off.

Adam currently has his crib set up as a fort - receiving blankets draped over it to cut down on noise and light to keep him as calm as possible. Sorry, buddy.

Tuesday, May 19, 2009

Silly doctor...

Adam: "Silly doctor! I told you I didn't need another head ultrasound. You must not have understood my squeaking."

Dr. Clark came back from her weekend break and verified that a follow up head ultrasound for Adam was unnecessary. In his hurry, the weekend on call doc must not have seen that he had just gotten one on Thursday. And we wonder why health insurance and medical costs are skyrocketing! It was a pretty uneventful order day for Adam. Just a little routine blood work, which all came back normal. He did get weighed yesterday and held steady at 2080 grams. Shannon will talk to Dr. Clark about that today and if his calories need to be increased. Adam's oral stimulation exercises continue and we may ask for a feeding specialist to work with us to bring him along. I worked with him last night and got him to take 28mL of his 39 - another feeding over 50%. Goody boy, Adam! Now if we can get him to do it consistently.

As for Sara, yesterday was bath day for the first time at home. I think it was harder for us figuring out logistics, warmth of water, and changing the leads on her home monitor, than it was for her to be naked and wet! She then had her first pediatrician appointment and weighed in on their scale at 4lbs! No major concerns. He will download the information from the home monitor next week and assess how she has been doing. It seems like it went off less yesterday so that was nice. It amazes me how the normal for us as parents of preemies is different than the normal for parents of full-term babies.

"Little Sara" then stopped by my place of employment for a quick visit to say hi to my boss, "Big Sara". Everyone was amazed at how small she was and off course she made sure to look cute while she was on display!

Monday, May 18, 2009

Chug, Adam, Chug

Since Sara left the NICU, we have started Adam on an "oral stimulation" routine. It is a set of about 7 exercises performed before each meal time, whether through his feeding tube or a bottle. You use your finger to stimulate his cheeks, his lips, his gums, and end with pressing on the roof of his mouth and his tongue, causing him to about suck your finger out of its socket. I think he has made great strides just over the past few days with it. I have noticed he is less sloppy and closes his lips around the nipple of the bottle better and he has stayed awake the entire time both nights I have tried this and then given him the bottle. Last night I got him to hit the 50% mark, drinking 21mL out of his 39mL feed! Hopefully this is the start of him getting the hang of it.

I am slightly frustrated that Dr. Clark takes weekends off, though! We had just talked to her Friday about Adam's head ultrasound results and she indicated his Level 3 bleed was regressing as expected. There has been no major increase to his head size, which indicates the brain is draining well of fluid rather than building up and swelling. She would consider another sono before he would be discharged. Yesterday a weekend doctor that has never seen Adam before ordered another one today as follow up and to keep him on that routine every few days. Are there any causes for concern? Has there been any change? Is he showing symptoms of a problem? The nurse couldn't answer any of those questions because he dropped in like a seagull (pooped all over and flew off). He left charge notices laying by bedsides and no one even saw him come and go to discuss orders with him. I understand a fresh set of eyes sometimes is very helpful but I would have at least liked to get feedback about it, or have the nurses relay the information to me. We will be discussing this plan with Dr. Clark today. Not every single experience we have can be a positive one.

Saturday, May 16, 2009

We have an extra occupant

Well, after much scrambling during the week to accomplish our requirements for discharging Sara from the NICU, she held up her end of the bargain and we arrived home with half our twins yesterday at 2:30pm.

The morning started with last minute organization of the nursery and arranging items in preparation for bottle making. We had our parental monitor training at 10am and then hung out with the kids for a while. Sara was awake for an extra long time - nurse Carrie must have been telling her what was going on! Dr. Clark was a little delayed in making rounds so we grabbed lunch in the cafeteria before chatting with them about any concerns.

Adam is ready to graduate to a big boy open air crib and he is on full breast milk with fortifier, 37mL per feeding. No signs of tummy problems creeping back up - I can't tell you how exciting that is! And his bradycardia episodes remain in the 0-2 range, which is excellent for him. We celebrated with the staff over how far he has come in the past few weeks. Dr. Clark indicated that preemies don't usually learn to suck until 35 weeks of gestation. Considering that they are just past 34, Adam is very typical and normal for his age. Sara just rocked it early!

Sara passed her hearing test and her last head ultrasound came back normal. Dr. Clark gave us tips and suggestions for her care and signed the discharge papers.

So there's the facts of the day. Here's the heart...there were so many emotions rolled into the day. Certainly it was exciting to have a baby come home after 44 days in the NICU. There was some nervousness - you would be too if you saw how small she is riding in her car bed in the back seat. And in her crib...you could fit 5 babies her size and still have room! And some real heart ache for me as I stood at Adam's isolette and cried. Since they were 34 days of gestation, we knew we were having twins and could hear 2 heartbeats. I saw them both on ultrasounds every few weeks and after time, I felt both of them move and knew exactly where they were and which one was which. Every day in the NICU I spent time at both of their beds. And to take only 1 home to start. Hard. Really hard.

So right now we are keeping with the typical NICU schedule so Sara can continue to thrive and gain weight. It is important to keep her eating every 3 hours in order to get enough calories to gain weight. We are working through the challenge of getting her acclimated to the house temperature and knowing how many blankets to add. She is eating well. She has set the home monitor off a few times, alerting us that she may have stopped breathing or her heart rate dropped. If hearing that in the middle of the night doesn't make you jump out of bed, I don't know what will!

I visited Adam last night and worked on nippling a bottle with him. He did have a few bradycardias after being put in his crib - there will be some adjustment, especially as he is no longer in an inclined position but laying flat on a crib mattress. It was so good to see my boy, even though he almost peed on me! Shannon is visiting this morning. He's a great man, that husband of mine. We are a good team and I don't know what I would do without him!

Thursday, May 14, 2009

Maybe...probably

Sara actually had 2 car bed tests today. The first one the monitor was not hooked up properly so a few hours later, she did a do-over. And passed! What a whirlwind of a week preparing for her homecoming so unexpectedly. As long as nothing major happens between tonight and doctor rounds in the morning, we will take her home tomorrow (Friday, May 15). 6 weeks and 1 day old, 3lb 11oz.

Adam had a fabulous day. No bradycardias - yeah, high five! And tonight I got him to take 14ml of his 33ml feeding through a bottle. Close to 50%. We'll keep plugging away. We talked tonight to let him know that sister would probably be going home but we would be back to visit him as usual. He needs to focus on eating and maybe Sara will have a little pep talk with him overnight. He is up to 4lb 7oz.

Both had their head ultrasounds today. Sara's revealed no issues still. Adam's is showing that the clot is receding. We will be talking through the results with Dr. Clark more in the morning.

Wednesday, May 13, 2009

Just pull that orange tube...

I didn't even notice that Sara had nothing on her face this morning until Shannon asked me about it. The nurse walked over and said, "she made a noise this morning and I walked over to find her holding up the feeding tube she had just pulled out as if to say 'here, I don't need this.'" Since she is taking all 8 bottles a day, they just went ahead and left it out.

And then what happens? We visit in the evening and apparently Sara passed along the information to Adam. Pssstt...pull on that orange thing and maybe they'll just leave it out. Unfortunately for Adam, he isn't quite ready for that stage so after he pulled his out, they reinserted into his nose. Hopefully that will help him have better suction while drinking his bottles.

Sara did try her first car bed test last night and failed in 15 minutes. Those pop quizzes are hard. No one told her study and Madelon had gone home so she had no study partner! The nurse indicated that is typical they fail the first time because it is so different laying in a flat position that they aren't used to it. Steps were taken to adjust her crib to a flat position to prepare her not only for her next test in 48 hours but for her at home crib, as well.

Tuesday, May 12, 2009

Can we handle any more surprises?

We arrived for our morning visit early. Grandma and Grandpa Mollenhauer were visiting from Iowa and we wanted to try to catch Dr. Clark with a few routine questions we had. I had just told Shannon that morning that I thought if Sara continued doing so well she may go home by the weekend. He looked at me like I was out of my mind. Well...

Beth Mittelberg, a friend from Northwoods, was the kids' nurse and the first words out of her mouth this morning was "if Sara continues at this pace, she will be going home this weekend." Remember how I wrote about the "rules" of having 4 bottles a day and if she took over 50% of all 4 for 2 consecutive days, then she would advance to 6 for 2 days minimum, then 8? Well, Sara made up her own rules. She had 1 day of 4 bottles. And then decided to jump to "just feed me a bottle at every meal, please." I just looked at Shannon and laughed. That started the whirlwind of the day.

You need to make an appointment to have a car bed installed and tested - when would you like to do that? She will be going home on a monitor so you will need training on that and they don't offer it on the weekend. You must complete a CPR class before she goes home so I will put you in touch with someone who can schedule that. Any family or friends who may be staying with her alone should also have CPR training. You have one more training video to watch. I will get you instructions on how to mix a batch of breast milk combined with fortifier so she will get increased calories. You need to keep her on a feeding schedule of every 3 hours due to her low weight, at least until she is eating 75-90mL per feeding. You will be able to breastfeed once a day to start until she gains more weight. We will make an appointment with a lactation consultant. We will need to schedule a follow up eye appointment. She will need a hearing test before she goes home. We have scheduled their follow up brain ultrasounds for Thursday. Have you chosen a pediatrician? If she is discharged over the weekend, her first appointment would probably be Monday. Dr. Clark will schedule for a home health nurse to visit you a few times a week to make sure everything is okay to start and make sure she is gaining weight properly. Would you like to give her a bath in a little tub this afternoon so you can get comfortable with that?

If your head is spinning by reading that list, you can imagine ours! Shannon and I sat across from each other at the dinner table tonight and he said to me, "we might have one of them home this weekend!"

Now keep in mind that all of this could change. She still has some things to cross off her list, too. As of right now it doesn't seem to be too much of a push for her to take all 8 bottles. But we need to make sure she can continue at that pace and not wear herself out. Or burn too many calories with her efforts that she doesn't continue to gain weight. We need to listen to what she wants and follow accordingly. The other major task is that she needs to lay in a car bed, with a home monitor attached to her, for 1 1/2 hrs and not set off the alarms by having a bradycardia. A car bed is like a car seat but she will travel in the car laying flat due to her low weight. Car seats have a minimum weight requirement of 5lbs and she weighed in today at 3lb 11oz. So we will get all of our tasks completed and let her continue at whatever pace is comfortable.

As for big brother Adam, we can't leave him out. Really, he has been doing fantastic by his own scale. For the first 5 weeks of his life, it was typical for him to have 5-11 bradycardias per day. We just got used to it. He would sleep well and forget to breathe. The past 4 days or so he has had 0-2 per day even with being off his canula. Good job, little man! He is just adorable to watch sleep - full of personality! While his PIC line remains in tact in case there are any tummy issues, so far things are looking good and he is up to his full feeding schedule of 32mL. His weight today was 4lb 5oz so we are seeing about a 2oz gain every 2 days from both kids. He is trying 2 bottles a day. Adam's biggest issue right now is with the reflux he experiences and we are trying to keep it under control with the Zantac he receives 3 times a day. We are hoping he won't be discharged too far behind sister but certainly want him to advance at a pace that is comfortable for him and won't cause any more set backs. They are already very unique in their personalities, that is for sure.

So I'm excited and nervous at the same time. It will mean change for our family again. Adjustment. A new routine and schedule to get used to. Certainly worth it. Nice to have one of them home. But part of me will ache to leave Adam behind. We'll get there.

For all of you who have prayed at some point in time for my children over the past number of weeks, my heart is full with gratitude for you. More at a later time when I might find words adequate enough to say more than thank you.

Monday, May 11, 2009

Messes all the way around

Weights from yesterday -
Adam 4lb 3oz
Sara 3lb 9oz

Sara took all of her 11:30pm bottle in 8 minutes. 5:30am in 7 minutes. 11:30am in 11 minutes. They took the feeding tube out of her mouth and moved it to her nose. This will allow her to have better suction as she spends more time on the bottle.

Not only is she eating well but she knows how to poop, too! I changed her this morning and her diaper was empty. I covered her with a blanket, waiting for the nurse to check her belly before eating, and I hear a rumbling. Okay, I guess I'll change her again. Diaper #2. I covered her with a blanket again. You guessed it - even MORE noises. Diaper #3. I looked at her and said "Sara, did you poop again?!" She put her little hand over her mouth and just grinned as if to say "maybe...giggle."

Meantime across the way, Shannon was on Adam duty. He was sleeping so sound. Even when our visitor for the morning, Ashley, touched his freshly bathed hair, he didn't even move. Shannon tried feeding him a bottle. Half of it went down...and then half of that came back up. All over his burp cloth, his blanket, his outfit, out his mouth, out his nose. This is the second time he has spit up after taking part of a bottle and getting the rest through his feeding tube. Next time if he doesn't finish his bottle, we will just hold him for a bit to calm his stomach and then put him back in bed to finish getting his breast milk through his feeding tube. Even as he was back in his bed, his hand was over his mouth. The nurse walked by and said he looked like he was holding it in. No sooner had she said that and he took away his hand and threw up some more! I guess she was right. Still, reflux issues are so much better to deal with than possible surgery from anatomical issues.

Other orders for the day - Adam goes back on Zantac and has his pulse-ox monitor removed. Sara goes off caffeine.

Tonight we will start watching some videos required prior to discharge. A sign that we are getting closer...

Sunday, May 10, 2009

I'm a momma

Mother's Day. My first one.

Gifts started last night when we got a call from the NICU that they were moving the kids. Again. Back down to 1218. Other babies went home sooner than expected. Or maybe they missed Madelon! So less than 48 hours from being moved upstairs, Sara was wheeled back down with her brother in tow.

I guess Shannon had some secret conversations with the kids over the past few days, asking them what they wanted to get me for my first Mother's Day. Adam's suggestion was to make me breakfast. Sara thought that sounded nice. So this morning I got fresh cinnamon rolls out of the oven, bacon, and strawberry milk. Good call, kids!

My next present came at the hospital. The overnight shift of nurses had left me a Mother's Day card from both the kids with their footprint "signature." I was wondering why Sara had black on her feet when I changed her the other night! So sneaky. And sweet.

Good doctor reports. Adam's bradycardias are still happening but less frequent than normal for him. They are increasing him to take 2 of his feedings by bottle. He is at the point today that his TPN IV nutrition will stop this afternoon and he will move to just breastmilk. His PIC line will remain with clear fluid running through it in case there are issues over the next few days and we have backwards progress again. No signs of a distended belly yet. Unfortunately, he did receive another suppository today. It seemed like he was trying to stool but he wasn't successful. It works quickly, though. By the time Shannon was done feeding him, he had clean up duty.

Sara is...well, Sara. Sleeping soundly in her crib bundled under blankets, looking cute, and drinking bottles. 4 times a day now out of the 8 feedings. And she was nice enough to give me 2 presents today that only she can make! :)

The last gift? Family pictures. The four of us together. Shannon holding both of his children. And me, on my first Mother's Day, holding my son in one arm and my daughter in the other. I've taken temperatures and changed diapers through holes in a glass box. I've snuggled with them skin to skin, the closest we can be since they were inside me growing. I've held them in my arms to feed them a bottle. But today, when they were both in my arms at the same time, today is when reality hit home. I have waited a long time to be a mom. It's really true that I don't just have one baby to love. God has doubly blessed me.

Saturday, May 9, 2009

Double bottle duty

Adam had been putting his hands in his mouth overnight so the nurse suggested trying him on a bottle again with his feeding this morning. So we tag-teamed...I fed Adam and Shannon fed Sara. Adam had a little slow of a start. After all, it has been a week and a half since his last attempt and he has had quite the roller coaster since then. But he drank all 12ml - good boy! His neck is pretty strong so it's a challenge to burp him when he would rather look around at the view outside his isolette. Also a challenge when he makes noises and I'm not sure if he is burping or just trying to deceive me so I'll stop smacking him on the back!

Speaking of noises - oh my gosh you should have heard him last night while we were kangarooing! I think Shannon might try to post a video clip so you can laugh with us. I say he's snoring because he is so comfortable laying on me. It kind of sounds like a continuous sigh but it's so loud the nurse could hear it across the room!

He did have 4 brady's in total over the past 24 hours. 2 only lasted a few seconds, which really shouldn't count. Only 1 needed gentle stimulation. The weekend doctor considered putting him back on a canula but they talked her out of it. Considering Adam, that really is an awesome day! His 3rd try at a feeding schedule is going well so far. He is digesting the breast milk and there are no signs of a distended belly. We are holding our breath with each passing day, hoping he will make it over the hump.

Sara was a little chilly for her 2:30am feeding so they held off giving her a bottle until 5:30am and she drank the whole thing. She took about 64% for Shannon this morning. Technically she could have graduated to 4 bottles a day today. But since she has only been in a crib for 24 hours and her weight is still pretty low, we decided not to push her and do another day of 3 bottles. It takes extra work to eat and keep her temperature, both. If she can't keep her temperature, they would put her back in an isolette. So we decided that we would rather go a little slower with bottles in order to balance out the work it takes to stay in a crib. We'll see what her weight is tomorrow morning and probably increase her to 4 tomorrow.

The nurse on morning shift today will be back tomorrow so she already has their new outfits and bed linens picked out, awaiting their bath and weight time Sunday morning. When we come in and take care of all the essentials for a feeding, it gives her a little extra time to go "shopping" in the NICU dresser for matching blankets and outfits!

Friday, May 8, 2009

Surprise, surprise!

Sara graduated to a big girl bed this morning! The nurse decided she has held her temperature quite well, been a little warm even, and her isolette temperature was room temp so she might as well switch her out for an open air crib. And she is over the 1500 gram minimum limit, weighing in at 1555 today, or 3lb 7oz for those of you can't convert in your head! With her weight gain, she could have her caffeine increased but Dr. Clark has decided to just maintain the current level. As she continues to gain weight, it will act to wean her off gradually rather than discontinue cold turkey. This may be a more preferred method for her.

As for Adam, we are taking the slow, steady pace with everything except his weight gain. His weight this morning was 1810 grams - a hair short of 4lb!! Because he has been on IV nutrition for over a week, it has put him on the fast track for bulking up. Being on an IV is like injecting a milkshake directly into your veins. His body doesn't have to do any work or burn any calories to work on digesting the food. He started a feeding schedule of breast milk today so we should see his weight decrease a little or at least slow down. Also, as long as he had no major bradycardia episodes in the past few hours, Dr. Clark was ordering for his canula to be removed. She doesn't want oxygen pushed into his stomach as he starts his feeds. That may have caused some of his prior irritation. He also has a note on his chart that if he doesn't poop every 48 hours, he gets a suppository. This will help things move through his body rather than slowing his digestive system and causing a distended belly again. We are praying this round of feedings will not irritate his tummy and force him to start over from ground zero again.

37 days of life. Quite the journey.

Reunited and it feels so good...

I stepped up to the NICU sink last night to do my 2-minute scrub in and I heard a voice behind me from the nurses' desk..."Your kids are going to be together again!"

She said, "Sister's coming up to join brother!"

"You mean brother's going down to join sister?" I thought she had the kids mixed up as the plan all along was for Adam to move down to 1218 once a bed became available.

"No, there's an opening up here so we are moving her up to Room 4. Isn't that what you want - for them to be together?"

Well, that's a very good question. Of course I want them together. But I wanted them together downstairs. It's quieter for them. And a lot of room to stretch out so we can hold them together as a family. And that was my plan...don't change my plan! I must say that in the craziness of all that is going on, a routine schedule is key for me. Shannon pulled me aside and reminded me of all the benefits. They could be together on the 4th floor tonight or we could wait who knows how long for a bed to open downstairs. I just get caught off guard when I have one thing in my head and then it changes on me - especially when I am tired! I'm sure those of you that know me well are laughing to yourselves at this point. Well, I don't care because I fully accept that I'm a bit beyond normal. Anyway...

The nurses put their heads together - you would think it was the huddle at a football game. Do we want her over here? How about this spot and we can take this baby and move him down there so they can be right next to each other and the nurse-to-baby ratio stays even? That sounds good. And off they went. One nurse moved the other baby. Another came with a disinfecting spray bottle to clean the area. Two more nurses went to get Sara and all her "stuff" - she has a lot of stuff for only being 5 weeks, you know! And then the two nurses assigned to the room talked to exchange notes about the vitals of the baby that got moved to the opposite corner to make room for my Sara.

Before you know it, there she came. Not even peeped an eye open as she was being wheeled down the hall. Hopefully she helped Madelon - her roommate in 1218 - study for her car bed test during the day. She had failed the first test, not even laying in there long enough to make a car ride out of the OSF parking deck before setting her breathing monitor alarms off. We always see the Hinkles at lunchtime as we feed our babies together and had promised them that Sara would stay up late helping her study. It's been nice making friends with people who are going through the same experience. They had gone through some of the same set backs as we were experiencing with Adam. Madelon also has a level 3 IVH, same as Adam. And her dad was looking for a job, too!

I soon forgot about all the craziness of the evening once we settled into taking temperatures, feeling tummies for that soft bread dough feeling, and changing diapers. Shannon kangaroo'd with Adam while I fed Sara a bottle. Our new normal, for a while anyway - Adam forgetting to breathe while laying comfortably on Shannon's chest, and Sara burping herself when she needs to because she doesn't like to be smacked on the back. Life is good...

Happy 5 week birthday, kids!

Thursday, May 7, 2009

Can you give me something, doc?

Adam had a little distended belly overnight again which required an x-ray. They gave him a suppository which led to 2 "substantial" notes on the stool column of his input/output sheet! Maybe that's all he needed to finally clean out all the stuff that has been put in his body over the past week. He had some dark brown blood/bile mixture in his stomach. The color of it indicates that it is old blood, possibly from irritation of the stomach suction he had at the end of last week. Dr. Clark is prescribing him some Zantac to be included in his IV nutrition over the next 5 days. That should coat his stomach while he starts eating breast milk again. His color does look better after his blood transfusion yesterday. But the IV is still causing a little puffiness in parts of his body. He was a little cranky this morning so we had some good snuggle time for him to rest. He also got his caffeine increased from 14 to 16 to keep up with his weight gain. Dr. Clark is confident he will push past this...he's my little trooper!

Meanwhile, sister Sara hangs out 4 floors down awaiting brother's arrival back in 1218. She continues to chug down her bottles. Have you ever seen that Pepsi commercial with the little boy drinking a Pepsi out of a glass bottle with a straw? He sucks so hard that he sucks himself into the bottle. That was Adam yesterday sucking on his pacifier so loud we could hear him with his isolette doors closed. And Sara when she goes to town with a bottle - who said she didn't know how to suck/swallow/breathe? Dr. Clark increased her feeds from 26ml every 3 hours to 28ml.

Yesterday was weigh in day (every other day):
Sara - 1495 grams - 3lb 5oz
Adam - 1630 grams - 3lb 9oz

Wednesday, May 6, 2009

Now what?

This morning I peeked in Adam's bed and saw an IV hooked to his foot in addition to the PIC line in his arm. Now what?

The nurse indicated that they checked his blood levels last night and his body is not sufficiently making red blood cells. (I thought he didn't look quite right when I visited last night.) You remember we went through this with Sara a few weeks ago and she was borderline for a while but her body kicked in. Adam's tests led the doctor to go ahead and order a blood transfusion today. So his gut priming feedings were held and an IV was put in his foot to administer the first dose of blood over 4 hours this morning. He took a 2 hour break from 12:30-2:30 and is now doing the 2nd round until 6:30 tonight. His gut priming of breast milk will start back up at 8:30 tonight. One more day of receiving only 4ml every 3 hours and then they will determine an appropriate feeding schedule to start him on.

Dr. Clark changed her mind about Sara's caffeine. She doesn't seem quite ready to go off it completely so we will wait until she gains a little more weight. She was awake for her bottle this morning and the nurse told us we didn't have any breast milk left. And then "The Mama" came out! Are you kidding me? We brought 2 dozen bottles in last week for Sara and another 2 dozen upstairs for Adam. He hasn't eaten milk in a week so there is no way he is out. Somewhere in this building my kids have milk! I don't spend hours a day pumping and buy another freezer to store 300 bottles for my kids to drink formula. Keep looking! Of course I didn't say all that but you can bet my eyes revealed it! They finally found a stash but by then Sara was a little sleepy and only took about 1/3. Survey comment...improved communication regarding volume of milk left on hand. As we left today, the nurse said "be sure and bring a lot of bottles when you come back..." maybe she would consider all 300 to be a lot! :)

Can I have some real food, please?

After being off feeding for almost a week, Adam got the green light from Dr. Clark to put a little breast milk in his belly again. This, of course, means good news from all his GI tests that were done. Radiology has indicated that there are no anatomical issues requiring surgery that are causing his digestive problems. Just a little reflux. So that puts us on the path of determining his 3 distended belly episodes in 3 weeks is due to having a preemie belly. Great news. And relief. He started on 4ml of breast milk yesterday afternoon. That course will continue for 2 days and then they will determine a feeding schedule that is a slower pace for him to handle. The nurse tried to give it to him through a bottle but he looked at her like she was a crazy woman. So apparently being back in the critical care area for a week has made him think he shouldn't have to put forth effort...we'll have to work on that!

He continues to have the PIC line in place to deliver a balance of IV nutrients until he is on a more substantial feeding schedule. His weight 2 days ago was 3lb 7oz. We aren't really taking that to heart since he has been on 3 different scales in the past week with room changes, and the barium they put in his belly for the upper GI is like cement sitting in his stomach! We'll see what todays weight update brings. Head measurements continue to be in the normal range. Both babies will receive another head ultrasound at 34 weeks - sometime next week.

The doctor also put in an order to have Adam moved back to 1218 to rejoin Sara as soon as a bed opens. Another sign that he is not needing urgent critical care again.

Sara continues to be a quick learner with the bottle feeding process. Monday she took 100% of both bottles. Yesterday she took 100% and 75%. That qualifies her to advance to stage 3, which is 3 bottles a day. She would need to take 50% of all 3 for 2 days, then 50% of 4 bottles for 2 days, 50% of 6 for 2 days, and finally 100% of all 8 bottles for 2 days to qualify to go home as far as feedings.

She would also need to be able to maintain her body temperature. Her weight 2 days ago was 1460 grams, or 3lb 3oz, so we'll see what her update brings today. At 1500 grams, the doctor could request she be moved out of an isolette and to an open air crib to test how she does.

Her bradycardias have been so infrequent that Dr. Clark stopped her caffeine yesterday. Both babies have received that since birth to stimulate their brain and help them remember to breathe. If she is off caffeine for 7-10 days before going home, she would not require a home monitor to assess her breathing and heartrate. As of last night, she had 2 bradys during the day. One more and Dr. Clark would consider putting her back on the caffeine for a few more days. Sara has always like a challenge so we will see what the overnight outcome is when we arrive for this morning's visit.

Tuesday, May 5, 2009

Blessing in disguise

It was a challenge to find out a few days ago that Adam was moving back upstairs to the intensive care unit. He wasn't stable enough to stay in the step down unit with his sister. That's a little hard to hear. But as I sat at his bedside Sunday night alone, I looked around and got a glimpse into the not so distant past. A new baby had just come in and the parents were getting their first orientation as to what all the monitors and wires were. The noise of the various non-stop alarms can be maddening at times - you constantly look up at the one assigned to your own baby and wonder if it is him that is not remembering to breathe. An x-ray machine rolled by on its way to another preemie in need. A baby was laying in an open warmer across the way, some type of casts on his legs, an IV in his head, and a team of doctors and nurses in masks performing a surgical procedure. Multiple babies had their jaundice lights turned on and their sunglasses to protect their eyes, and of course the high humidity with water running down the glass of the isolette. Sara spent quite a few days in her sauna! Another preemie in the corner in an open air crib with signs posted all over that gowns and masks were required to care for the infant. You really can't imagine. And then I look back at my little boy, dressed in a footie sleeper with teddy bears on the feet. His new body pillow that looks like a hand is supporting him as he lays on his side and his arms are sprawled out. Yes, he still has a canula, 3 wires to monitor his heart rate/reps/pulse ox, and multiple tubes for his PIC line providing IV nutrition...but I look around and see how far he has come. He just got a "bath" today and his hair is all fluffy and the softest thing I have ever touched. It is turning more blonde than Sara's. Before too long, all of this will be a memory. A life-changing experience we will never forget, of course, and something we will tell the kids about to remind them of how strong God has made them. And me.

Sunday, May 3, 2009

A little more waiting

Yesterday felt a little disappointing that it seemed we hit a weekend lull working through Adam's tummy issues. We wanted to move through the GI tests to confirm that there is nothing anatomically that needs to be surgically corrected. A phone call with Dr. Stanfell, the radiologist assigned to Adam's case, eased my frustrations. She stated again that his lower scan was clear. They were giving him enemas (2 on Friday and 2 on Saturday) to assist in removing the barium from Adam's system to prepare for the next scan. The upper GI scan was not something she would recommend having done on the weekend when only a tech would be on site to review the results. She felt we would be better served to give him all weekend to flush his body and perform the test first thing Monday morning when an experienced doctor would be on site. An x-ray this morning revealed that his body is clear of the barium so his main focus today is just to rest. Dr. Hocker indicated yesterday in rounds that probably 95% of the time if the lower GI comes back clear, there is no issue with the upper and the preemie is just experiencing a sensitive stomach from being born early. We are thankful we are covering all our bases to confirm there is nothing going on. Better to make sure we are heading down the right path of treatment for our little guy.

Adam is still off breast milk. A PIC line was inserted through his arm in order to have a better method for providing TPN IV nutrients. That made us a little nervous since the last time they inserted that, it caused his rapid heart rate issues. However, this time everything went smoothly. His weight is down slightly but he remains above the 3lb mark. He was resting more comfortably today and his tummy is looking better.

Not only was Sara's canula removed but her pulse-ox was removed, as well. What a difference it makes in taking her out of her bed with only 2 wires instead of 3 and a hose! Her bed continues to be turned down slowly as she gains weight and learns to regulate her own body temperature. She gained weight yesterday and has joined Adam in the 3lb club at 3lb 1 1/2oz (1410 grams). When she reaches the 1500 gram mark, they can consider removing her from an isolette and into an open-air crib.

It looks at this point that a blood transfusion will not be necessary. Praise God! Doctor orders for Sara today was a slight increase to the caffeine she receives. Due to her weight gain, she needs a little more to keep her at essentially the same level she has been receiving. This stimulates her brain and helps keep her bradycardias at bay. Over the next few weeks, they will try removing the caffeine to see how her body responds. If she is off caffeine prior to being discharged for at least 10 days with no bradycardia episodes, she would qualify to come home without a heart monitor. This is a normal process for preemies.

Overall it was a good weekend. The babies enjoyed a visit from my family - Great Aunt Robyn and Grandma Marilynn. I think we all napped in the afternoon. I can't wait for the day that we can do that as a family in the same house!

Friday, May 1, 2009

Waiting update

Adam's lower GI came back normal so they are "flushing" the barium contrast from his system in order to do an upper GI scan. They will take an x-ray at 3pm to confirm the contrast material is cleared out and then schedule the upper test. Hopefully they will either do the test before the end of the day or over the weekend so he can get back on milk feeding sooner. Dr. Clark said she would leave a note for Dr. Makwan who is on this weekend to push for an earlier appointment.

Sara also got her "nose hose" removed this morning because she only had one bradycardia last night. If she doesn't have a spike in apneas/bradys, she will be done with assisted airflow.

Waiting

We arrived at the hospital early this morning to wait for the results of Adam's lower gastrointestinal scan that was performed at 8am. Dr. Clark decided yesterday that since this was the third episode in a short amount of time, we should look deeper to see if there is an issue other than just a sensitive, underdeveloped preemie tummy. We are thankful that they are continuing to ask questions and try to get to the bottom of what is going on. The test injects something through his butt and then they watch how it travels through the intestines to see if there is a kink somewhere. If there are no issues, they will consider an upper GI, also to look for internal problems. His tummy is still distended but softer. He's not as uncomfortable as he was last night.

Adam and Sara continue to be on separate floors. We will wait for his test results before deciding if we want Sara moved to at least be on the same floor. If it just seems to be a short-term issues for Adam, we may just wait for him to join his sister again in the intermediate room downstairs.

His weight continues to climb - 3lb 4oz as of last night.

As for Miss Sara, she is quickly learning how to eat from a bottle. Yesterday she ate 20ml of her 25ml bottle. And this morning Shannon got her to take all of it. Since she has had 2 days in a row taking more than 50%, we expect she will graduate to 2 bottles a day tomorrow. We are also hopeful that Dr. Clark will have her canula removed today.

She is up to 2lb 15 1/2oz...so close to 3lb!