Sunday, April 25

Greetings from Gunnison-

Sorry we haven't posted anything lately. We are having internet issues at our house and don't have any way to communicate right now (we're working on it). We are so happy to be home and other than having a huge mess to unpack and organize, we're feeling good. Delaney is doing well and seems to be adjusting to her new home. The first several days in Gunnison were spent setting up oxygen, visiting with our new home health nurse, and going for our first doctor appointment. Our friends continue to take good care of us and have been feeding us well since we've been home. It was also nice to come home to a clean house, refrigerator full of food, and a nicely decorated house. Thank you.

You can't imagine how nice it is to be home.

Saturday

After 80 days in the NICU we finally managed to sneak out of there this morning without being stopped by security. Our trip to Gunnison will be postponed until this Wednesday because we have a final eye exam for Delaney and didn't want to make another trip to GJ. After we said our good-byes we came back to our apartment and simply stared at Delaney. Meredith, on the other hand, immediately ran to her toys and picked out a pile of them for Delaney to play with. Before we knew it Delaney was buried in toys while sleeping in her car seat. She's got a great big sister.

For those of you that have been trying to get in touch with us over the last several days, we apologize for not getting back to you. As you can imagine we've been consumed with our discharge. Meredith went to her friend's house tonight for one final hurrah before we head out, so we've just been laying low with Delaney at the apartment. Tomorrow we'll probably begin the process of packing and organizing for the trip home. Hard to believe the time has finally come.

From this point on, we may not be posting on our blog as often, but will try to keep it up as time allows so you can see how we fare once we make it back to our home soil. We can't thank you enough for all that you have done for us over the last several months. Your help has allowed Delaney to thrive, and the rest of her family to survive.

Friday

For several days now we have been holding our breath with anticipation. Delaney has done it, and we are being discharged Saturday morning. She is a strong and resilient little girl and has amazed us all. Wednesday to Thursday she completed her 24 hours of nipple feeds which set the stage for departure. Because she had a suspect spell of apnea on Tuesday, we were required to stay for 5 additional days to ensure that more apnea did not follow (which it hasn't).

Our last day and night at St. Mary's didn't exactly go as planned and we ended up "rooming in". The hospital has several private rooms set aside for parents that want to spend a night with their baby in a non-nurse, non-monitor setting. We hadn't planned on doing it but for several reasons that is where we ended up. Meredith and Brandon headed back to the apartment for the night (kids aren't allowed to stay the night), while Jennifer stayed for Delaney duty. Hopefully their last night will be an enjoyable and memorable experience. Delaney no longer has any bells and whistles other than her nasal cannula and is on an "ad-lib, on-demand" feeding schedule...it's sort of like having a "normal" baby. We had a great day.

Thursday

Not much of a report tonight from Grand Junction. We continue to work with Delaney on her nipple feeds and she's making progress. She's definitely getting stronger...

Wednesday

Day 77 in Grand Junction.

Delaney continues to work hard and actually ate her multi-vitamins out of a bottle today. This was quite an accomplishment for a little girl that spits up at the mere smell of the wretched fluid. We also found her today conducting her own "room air challenge" in her bed after pulling her canula out of her nose.

We have been keeping very busy these days with all sorts of odds and ends. A woman from Great West insurance told Brandon today that providers have up to 12 months to submit insurance claims... we sure do look forward to a year or more of medical bills and insurance statements.

This evening as we were leaving the NICU we ran into another familiar family from our Nucla days. It's hard to believe that in the "short" time we've been here, we've already run into two families from our past that also have babies in the NICU. Go figure. We read a prediction the other day in a hospital journal that by the year 2015, one in four babies will come prematurely. That is a disturbing figure, and one that should make us all consider the environment we are living in and how we are contributing to it.

Tuesday

Delaney continues to get stronger and had a bunch of successful bottle feedings today. Jennifer's been a little sad that Delaney isn't breast feeding as much lately, but it will come. Tonight, Delaney weighed 6lbs, 9.3 oz. On Sunday she was 18.5 inches long.

The most significant event of the day involved Meredith Mae. For awhile now she has been talking about getting her hair cut short. We've also been talking about donating her hair to "Locks for Love" for a kid in need. Well, the day came and she is a whole new girl. We think she looks really good and is now ready for summer. To donate, you have to give at least 10 inches so it was a bunch! Meredith thinks she's pretty hot stuff...

Monday

The only news that mattered to us today was the result of Delaney's head ultrasound. Thankfully, everything was normal and her brain appears to be in good shape. You can not imagine how relieved we are.

Sunday

Delaney had a good day today with several successful feedings. She must have felt a little better because she let her family hold her a lot more than yesterday.

During rounds this morning our doctor informed us that he has ordered our second head ultrasound for tomorrow. This one is not looking for bleeds, but will look for cysts in the brain called periventricular leukomalacia (PVL). These cysts may form in areas of the brain that have been injured during prematurity. Apparently areas of damaged brain tissue do not heal like other tissues due, but instead form pockets (cysts) that are devoid of healthy brain cells. Send us your positive thoughts; as you can imagine this test has us on edge.

Saturday

We had another nice day in Grand Junction complete with a picnic at the park (it's getting hot for us Gunnison folk). This afternoon Jennifer was left to do a bath on her own because her two teammates apparently slept through most of it-oops.

Delaney had a pretty good day today but still seems to have a belly ache. We didn't do much holding today because she was so uncomfortable and kept having de-sats as she held her breath and squirmed around. It's just a matter of time before she works it out.

This morning we had a nice visit from Teresa Anderson (Meredith and Delaney thank you for their treats). She had perfect timing and was able to watch Delaney work on a bottle. Other than the upset belly Delaney continues to be alert and more energetic during our care times.

Some of you have asked about her high blood pressure and what it means. The doctors could talk your ear off on the topic, but here's our interpretation: Preemies often will have transient bouts of high blood pressure and it is not clearly understood. What the doctors do seem to know is that it is not necessarily an indicator of life-long blood pressure issues and that it is likely to subside at some point. Certainly it is something that we will be watching for years to come but at least (based on all our recent tests) she appears to be mechanically and physiologically sound.

Friday

Spring has sprung in Grand Junction.

We sure don't want to jinx it but Delaney seems to be a little more like her old self today. She doesn't seem so wiped out and has been more alert. It is amazing what an extra week will do for a preemie. She seemed to have an upset belly today, but otherwise did a good job breast feeding and ate a bottle for her dad. Tonight we assembled her new bassinet and can't wait to get her home.

To recap this weeks events:

Gunnison visitors=good

IFSP meeting=good

Eye exam=good

Hearing test=good

Echocardiogram=good

Blood work (kidneys)=good

How to tame a Dragon=good

Mary Kay's cooking=good

Tonight, young Delaney= 6 lbs, 2 oz. (hard to believe)

Thursday

Tonight we finally heard that Delaney's heart test was normal. Whew. Those results, however, will be followed up tomorrow with some blood tests that are aimed at her kidney function. Another day, another test to worry about-life in the NICU. This morning we also confirmed that Delaney has a sporadic heart murmur. It must not be of great concern though because apparently she's had it for some time now and several of the nurses seemed to be aware of it. We've still been giving her plenty of time to rest between feedings and today she had several successful breast feeds with Jennifer. It's always more fun when she's wide awake and keeping her eye on everybody. First thing this morning Brandon was pleased to find a notice (pictured above) in Delaney's bed. She passed her first hearing test!

Today we had a nice visit with the Thorpe's, who had made a trek to the big city. Many of you know what a huge part of Delaney's birth they were so it was nice to see them and have a chance to show off Delaney. Meredith was at a friends house for most of the day and sustained a battle wound in the afternoon. That changed our plans and we ended up in Palisade on a pick-up run for a sad child. When we arrived, of course Meredith had changed her mind and wanted to stay for dinner. It worked out well though because we all ended up invited to a big family feast with our new friends. All in all a good day.

Wednesday

Today was another busy day for Delaney. She continues to work hard on her nipple feedings but we have decided to give her longer periods of rest between breast and/or bottle feeds. Delaney has already demonstrated to us that she can nipple feed so we're not worried about her. Now it's just a matter of time before she has the strength to do it at her leisure. She had her latest eye exam today which again indicated that her retinas are immature. The doctor plans to do her next exam in two weeks so hopefully Delaney keeps it up. Tonight we also learned that there was some miscommunication regarding her heart tests the other day. The doctor had not yet interpreted the results and is planning to tomorrow morning. So unfortunately, no news meant Delaney's results were in limbo, but tomorrow we will be getting the final word.

We seem to be in constant motion lately in an attempt to organize and equip ourselves for the trip home and our new life with two daughters. The grind was broken up today with a visit from the Wenum's and a trip to the movies with our dragon aficionado, and 3D enthusiast Meredith. We are now up to speed on dragon taming.

Today was our 70th day in Grand Junction.

Tuesday

Still haven't heard on Delaney's blood pressure-sometimes no news means no news.

Dreaming of Gunnison....

Monday

It was a long day in Grand Junction. Early this morning Delaney had her heart exam (related to her higher blood pressure) but we have not heard the final word on the results. Hopefully tomorrow we'll learn more. We had a lot of chores to do, and then at 1:00 we had our first "IFSP" meeting. This is the Individual Family Service Plan that is created between us, the NICU doctors, Occupational Therapists, and early intervention specialists. It's basically putting together a game plan for what needs to happen before and after we go home. Based on how things are going we still have a long road ahead of us but it was nice to talk about the idea of going home some day. Delaney still has to master nipple feeding and has an array of tests ahead of her including more eye exams, a head ultrasound, and hearing tests.

One of the nurse practitioners warned Jennifer early on that the nipple feeding phase would be one of the most challenging of our NICU stay--she was spot on. Already there has been way too much drama, confusion, misunderstanding, and tears (yes, tears). In some ways it's like a silly little soap opera that we really want no part of. Hopefully it smooths over, which we hope it will after all of our discussions today.

Sunday

Had a nice Easter day together in Grand Junction. Meredith was busy finding eggs at home and in the NICU while Delaney soaked in her tub. Jennifer and Meredith were able to enjoy a long nap this afternoon while Brandon hung out with Delaney. Yesterday Delaney was 35 weeks old.

Tomorrow Delaney will have some tests done to evaluate her high blood pressure. If it's going to weigh on us on a daily basis, we'd at least like to learn more about what is (or isn't) going on. More to follow.

Saturday

Easter is at hand and this morning we went to the St. Mary's Easter festival at one of the parks near our apartment. It was for St. Mary's employees and their families, but we probably should be included in that category at this point (several of the nurses invited us). Meredith had a good time and got a chance to visit with the Easter Bunny--she made sure to let him know where we were living so he could visit us tonight.

It seems that Delaney is as tired as her parents these days. Her first few days of remarkable nipple feeds have tapered off. Jennifer continues to do well with her breast feeds, but the bottle feedings have not been as enthusiastic during the last several days. As we've said before, we are on Delaney time and in no big hurry. She's doing a good job.

Everyone is still watching her blood pressure, and it's hard not to be concerned. If it stays high she will be seen by a cardiologist and probably undergo more tests. Time will tell.

Happy Easter everyone.

Friday

It's amazing to look back and see how much Delaney has grown since we've been here. We just moved up to a larger diaper and it's hard to believe she ever fit in the tiny preemie version (which at one time were actually big on her).

Today Delaney was tired and we had a tough time getting her to nipple feed. We were starting to get addicted to our new feeding regime, but we know it's all up to Delaney. Hopefully she'll be rested up tomorrow and we can get after it again. Some concern arose today because her blood pressure has been high lately. Those discussions led to tests, the tests came back okay, but we will continue to watch it closely-- always something to worry about. Some good news from earlier this week was that Delaney's eyes are still classed as immature by the eye doctor. That always takes a weight off of us, hope they stay that way.

Thursday

A very busy, cold, rainy, and snowy day in GJ. Feels like we're running on fumes, but all and all we seem to be doing well (especially Delaney). Enjoy some pics that we haven't been able to post. We'll report again tomorrow....