Wednesday, December 31, 2008
Hope has had a good "maintenance day" today. She is maintaining her feedings well, so those have continued. She is still off the Dopamine, and maintained her blood pressure all day on her own, which is great!!! She had another x-ray of her lungs and it showed good news: her right lung has expanded!!
While Hope did not have forward progress today, she also didn't have backward regression, so today was a great day for maintaining. Daddy has rated today a 6 or 7 on the Hope Day Scale.
Hope's Mom & Dad had visitors today, Paul & Kristy Worfel for the morning and lunch then cousins Hester & Kathy in the afternoon. Great to have visitors, but unfortunately Hope hasn't seen any of them, but it is good for her mom & dad, and grandma & grandpa.
As you can see, the fashion show has resumed. Hope is sporting a green and pink hat, courtesy of her fashionista Aunt Em. She looks like she enjoys this hat, it goes well anytime of year, can be worn alone (obviously), or with a pink camisole, or a green tank, the list can go on and on.
While we are passing from 2008 to 2009 I have reflected upon all the good (and bad) things that have happened this year and decided, without a question, that Hope is the best thing to have happened. While personally I'm pretty excited about our President-elect Barack Obama, Hope has won out. If you are out and about celebrating the New Year, please take a moment and make a toast, a simple toast: To Hope.
Tuesday, December 30, 2008
As you can see in today's Daily Dose, Hope is posing, Vogue style, for the camera. Either that or she is sick of that old hat and wants a new one for the fashion show. She really should complain to the staff about that!!!
Last night Hope had kind of a rough night. Her ET tube came "dislodged" which caused her heart rate to drop significantly, requiring chest compressions and "bagging", a little bit scary. But the doctors and nurses say that happens sometime and not to be worried about it. Easier said than done. But.... the good news is that Hope had a great day today. Her blood gasses were better than they have been, she is finally off the Dopamine again, and her oxygen has been weaned so she is almost back on room air. Hope continues her feedings which have been going well, so that is great.
Again, Hope complains that she misses her Aunt Em. So Aunt Em WILL be making an appearance at the NICU within a week and a half, hopefully. In the meantime, Grandma & Grandpa Robinson have been keeping Hope and her parents company. Cheers to Hope as we look forward to an incredible year!!
Monday, December 29, 2008
The Daily Dose today is a picture of Hope's Dad helping to reposition her. Hope resumed her feedings today, which is great because that means she can get bigger and stronger!! The feedings are going well so we pray that continues. She is back onto room air with the ventilator and has continued to be weaned off the Dopamine (for blood pressure) but still has to take that. Her chest x-rays showed some regression, but overall things were doing better than yesterday.
According to very credible sources (Hope's mom and Grandpa), Hope misses her Aunt Em; however, she allegedly also misses Christmas Bear and Kwanzaa Zebra. Hope can live without Aunt Em, but take away her little friends and she gets mad!! Grandpa said that Hope was very active today, kicking and moving her arms around. In my opinion, she was totally throwing a temper tantrum because Aunt Em wasn't there. Yes, that's definitely what was going on. Aunt Em must go back very very soon!!
Sunday, December 28, 2008
Hope did not have as good of a day today, but she is still holding her own.
The good news: yesterday's feedings went really well, she digested everything, had good "output", and seemed to go well.
The not as good news: today, Hope was having more problems getting her pH to balance. It was coming back up a little, but still has to level off a ways. Her lung seems to be doing much better, but.. She was put back on the jet ventilator. The settings on the jet vent were weaned back a little bit, but with all the other stuff going on, the jet vent seems to be the better option right now. Hope's blood pressure was a little off, so back on the Dopamine she goes. Because she's on the Dopamine, she isn't feeding anymore, and probably won't for a few days until things get normalized. We don't want to overwhelm the little one!!! She had two more blood transfusions today. They keep drawing her blood and when you only have a little to begin with it makes a big difference, so she gets transfusions so help her feel better.
The bad news: (brace yourself).... The fashion show did not continue today!!! GASP!!! I know, shocking, but... they didn't change her hat, so.... it is my hope (pun ABSOLUTELY intended) that the show will commence tomorrow with a new little number =)
Aunt Em left today around noon. It was very very hard for me to leave my precious little Hope behind, but I didn't think it would be good to take her with me. I would have preferred to stay with her, but Grandpa and Grandma said something about Aunt Em having to pay bills, or something silly like that. Hope didn't understand that either. But... Aunt Em will be visiting very soon, hopefully within the next two weeks. It is very hard to be away from Hope for too long. She has this contagiousness about her, the good kind of contagious, the loving kind. If you saw her, you'd love her too!!!
Hopefully tomorrow will bring new fashion and a good day.
Today's rating on the SCALE:
Hope's Day rating: 5
Daddy's stress rating: 5 (says Daddy, however, I think that is averaging the overall day together)
Saturday, December 27, 2008
Hope had a great day today (rating from the scale will begin tomorrow). Last night she was getting too much oxygen, hard to believe, so they took her off the jet ventilator and put her on a conventional ventilator. She responded very well and today was eventually weaned off the oxygen and was breathing room air by the end of the day!!! These were really great steps. Being on the conventional ventilator, Hope is much more active again, moving her arms around, being cute and everything.
Hope also had her first feeding of breast milk today! Her first feeding was 4 cc's. She took it very well and as far as we know, digested it well. She had another feeding tonight, so tomorrow we will know how that went.
As you will notice, Hope has begun her fashion show. Her first look on the runway (aka bed) is a red hat with a green ball on top. Rather Christmassy, but also matching the ladybug blanket her isolette is donning. Overall the matching hat and blanket were a big hit on the runway. The next look will be featured tomorrow.
Today, Aunt Em read Hope her first book: The Grouchy Ladybug. Hope really liked the story. She was a little scared at the Grouchy Ladybug and didn't understand why the Grouchy Ladybug was so mean. But at the end when the Grouchy Ladybug and the Friendly Ladybug ate together, Hope was happy that they could get along. Overall, the book was a big hit!! Kwanzaa Zebra & Christmas Bear also made appearances today.
Tomorrow will be another great day, I know it. However, it will be a little sad for Aunt Em as I am forced to go back to Chicago. I don't really want to leave Hope behind, but I know that she is doing great and I will be back in just a few weeks. Plus, the Daily Dose will continue with pictures.
This new and improved version of the "Universal Pain Scale" used by medical facilities around the world, has been revamped to accommodate Hope's Daily progress and her Daddy's daily stress. We will be referencing this scale daily when describing how the day went. You will notice this is permanently affixed to the bottom of the blog, for you, the reader.
Friday, December 26, 2008
Today was a very good day for Hope. She was weened off the Dopamine (for blood pressure) and did wonderful, keeping her blood pressure right where it is supposed to be!! Hope also had a very demanding respiratory day. The respiratory therapists were working hard with Hope today. After a respiratory treatment, they suctioned and they suctioned and they suctioned some more!! But is was very prosperous!! Slowly but surely Hope's lungs are starting to clear up. They suctioned lots of good gunk out of her lungs. And she has been reacting very well to the "aggressive respiratory treatment" today.
As you can see above, Hope has made some new friends. She now has two finger puppet friends to keep her company and tell her stories. They are "Christmas Bear" and "Kwanzaa Zebra". Yesterday, Kwanzaa Zebra told Hope all about zebras and safaris in South Africa, about how zebras run wild through the bush, and how someday when Hope is older, Aunt Em will take her on a safari and watch zebras. Christmas Bear told Hope about all the fun things that happen around Christmas time. Today Christmas Bear told Hope all about Christmas and how, just like Jesus, Hope is a gift from God.
Hope definitely likes her new friends, her heart rate stabilizing and her oxygen levels going up above the numbers her dad approves of. Her friends will be telling more stories tomorrow, but Hope has a fashion show tomorrow so there may not be as many opportunities for stories.
In other Hope news... The scoreboard has started. The game is between Hope and her dad. Only the beginning of a long running battle. Today's battle was with Hope's hat. Recently she had been fighting with her dad, dad puts hat on, Hope pushes hat off. Dad puts hat back on. Hope closes all her veins so she has to have an IV in her head, which means no hat. Hope wins. HOWEVER... we didn't begin keeping score until today, and today was a hat day. So the score begins:
Dad- 1; Hope- 0
Things to look forward to tomorrow:
another great day, Hope's first fashion show, an update on the scoreboard, a new rating system for Hope's days, a new rating system for dad's stress levels....
This is a quick entry but I couldn't help but share with the world the first time we have seen Hope's beautiful face without the tape or tubes. Isn't she amazing?!? They had to change a tube and fortunately dad snapped a quick photo!!
There will be more entries later, lots to update from yesterday!!
Thursday, December 25, 2008
As you can see from the pictures above, today has been a very blessed day. To get all the presents in the picture I had to go take it from the balcony, but even then I still didn't get them all in the picture!!! We are still in awe at the incredible amount of generosity and selflessness that we have experienced. Christmas morning at the McCrib was amazing. The children that were there got to see Santa, got HUGE bags of gifts, had breakfast and lunch served, all out of the graciousness of others. It really is amazing!! Hope now has more stuffed animals than the rest of us combined, and she hasn't even left the hospital yet!!!
When we were done with the Santa festivities we hurried over to see Hope. She had another great night, but a little tougher morning. She had to have her dressings redone, and the IV in her head wasn't working out so that had to be put somewhere else. The good news: Hope now gets to wear hats again, hence the awesome Christmas stocking cap. The bad news: Hope has yet another IV site in her little veins. The nurses are taking very good care of Hope today. Watching very closely to make sure she stays stable. We didn't get to stay in very long today because she was a little agitated with all of the medical attention this morning so she wasn't settled enough to have our loving attention. But hopefully this afternoon when we return she will have had some good rest!! The nurses were very kind and took a family picture of us (which I'm sure will end up on the family calendar for 2010). If you look close in the family picture you can see Hope's little hat in the bottom.
Can't wait to see Hope later today, Santa brought her some finger puppets and you can be guaranteed that Aunt Em will be putting on a puppet show today!!! The Santa Bear and Zebra will be visiting hope shortly....
Wednesday, December 24, 2008
Today Aunt Em arrived to spend Christmas with Hope!! Christmas Eve turned out to be one of Hope's best days yet!!! She was sooo active and happy today. She has continued to be weened off the dopamine, going from 17.5 down to 5. And her oxygen levels have been great! She continues to be repositioned throughout the day and her favorite position seems to be on her tummy. Hope loves snuggling up on her tummy. It's also a little easier for her to breath and keep her oxygen levels up on her tummy, which is why everyone was so excited when her oxygen levels were going off the charts, while she was on her back!!
Hope did so good today. She opened her eyes and was looking around a little bit. Aunt Em told her some stories, but it's Dad's job to tell her the Christmas story, so tomorrow, Hope will find out about another little baby who came into the world to save us all. Similar to that birth, Hope has done her part to make our world a better place. Seeing Hope and being with her is amazing. She is so incredible. You can see her working so hard and doing such a good job.
Seeing Hope really puts things into perspective. I've always known the Christmas Story and that Christmas isn't about Santa (sorry for those of you who I just disappointed) but it is about Jesus coming into the world to save us. This Christmas I haven't been feeling very Christmassy. It is my first Christmas away from Grandma and Aunt Dawn, and I haven't been too excited about that, and I didn't even put up my own Christmas tree or set up any decorations (which is the opposite of everything I look forward to). Mom & Dad have been with Hope for the past two weeks, so they weren't exactly wrapping my presents. It may sound corny, and cheesy, but even though I know when I wake up tomorrow morning (in the hotel room that my parents have overtaken as their home) there won't be any presents and there definitely isn't a tree, but it isn't about that. It's about Hope. The hope that Hope has brought to us all. Santa delivered our gift a few weeks early and there is nothing in the world that could ever convince me to change that.
Again, I cannot stress enough just how touched and amazed we are with the outpouring of prayer, thoughts, kind words, etc that have come our way. Tonight, a very good friend of mine sent me a message, part of which I will leave you with on tonight, Christmas Eve:
The prophet Isaiah foretold that "a little child shall lead them." Our children, be it a son, daughter, niece, or nephew, will lead us in the way of love because they are being led by the One who came as a child to show us the way, the truth, and the life. No wonder this baby is called Hope! She IS hope-- she is made in the image of God and has been sent to unite family members, to prompt prayer, and to center all of us on what is truly important in life.
Aunt Em FINALLY arrived in Indianapolis today and got to spend the entire afternoon with Hope. We will discuss Hope later, but right now, we need to take time to express our gratitude for the incredible acts of others.
Today, as Andrew & Sarah arrived at their McCrib (aka their room in the Ronald McDonald House) a GINORMOUS gift bag was waiting for them, left in their room by an unnamed source. This bag was FILLED, completely FILLED with amazing things for Andrew, Sarah & Hope. There were beanie babies, teddy bears, big stuff animals, small stuffed animals, books, toiletries, gift cards, phone cards, hats, bags, etc. It was AMAZING!!!
It really made us think about just how blessed we were growing up with the loving and generous family that we did, but also it brought us back to reality that the world IS full of good people out there. Every single day another stranger does something that may seem insignificant in their eyes but to Andrew & Sarah and the rest of our family, it is amazing and we cannot even begin to express our gratitude.
Tuesday, December 23, 2008
Because I am a FIRM believer that you can never have enough Hope, today, we get 3 doses. As you can see in the last picture, Hope is ecstatic that Aunt Em is coming to visit tomorrow. She was jumping up and down but the nurses didn't like that, so she has reluctantly stopped jumping, but insists on waving her arms in the air.... ok, so maybe that's not what is going on, but since I'm not there to know we will go with that story!
Hope has had another good day, yaaayyyy!! They have been weening her off the dopamine (for her blood pressure) and her other tests have been going well. She has a little bit of congestion in her lungs, so to make sure that doesn't sit, the nurses are repositioning her regularly. Hope goes from stomach, to side, to side, to back, to stomach. But since she loves moving around so much, she probably doesn't mind. She still really likes it when her mom & dad put their hands in so she can hold them.
In case you didn't catch it... tomorrow Aunt Em will be arriving in Indianapolis to spend some quality time with Hope. We pray for good weather so my flight can be on time and arrive safely. Hope doesn't know it yet but Aunt Em is bringing CHRISTMAS PRESENTS!!! Because that is what Aunt's do, well at least that's what my Aunt did and what I'm going to do. Stay tuned for MANY MANY MANY more pictures of Hope coming at you soon. She's our little Christmas Hope and we need the whole world to know how much hope she has brought to our lives.
Monday, December 22, 2008
Hope LOVES her Santa hat, or at least she looks like she does!! She had a great night last night. She has a little bit of a staph infection, or something to that effect, but they are working with some antibiotics and should have that contained and controlled. They are also working on weening her off of one of the other drugs that she is on, but I can't remember which one. The doctors are very encouraged by all of Hope's good work.
Hope has been a real soldier in her 15 days here. Hope doesn't even know but she has people everywhere praying for her and watching out for her. And now, she has another angel in heaven. Saturday night Hope's great-great-Aunt Shirley joined the ranks of guardian angels watching over her. She's got a whole crew up there making sure things go well!! Aunt Shirley didn't even get to meet Hope but I know that she's going to make sure everything is ok.
Today being Monday, the 22nd, means that only a day and a half before Aunt Em gets to see Hope again!! While the weather and mother nature have thrown a wrench in MY plans for traveling to Michigan before Indianapolis causing me to cancel the Michigan portion of the holiday tour, the good news is that Aunt Em will be seeing Hope sooner! Hope better be ready because there is a lot of loving coming her way on Wednesday!
Sunday, December 21, 2008
Saturday, December 20, 2008
This morning the doctor said that Hope has been in "the best state since she got there." Which was great news. This afternoon they put in a central line for iv fluids, how she gets her nutrition and everything. She is continuing antibiotics to fight infections.
Hope is very happy to see her mom & dad and holds onto their fingers. We keep praying that every day is a good day and that Hope stays strong.
Friday, December 19, 2008
Hope has a different position: she is now laying on her stomach, and she likes it!! This morning they did a repeated brain scan which showed no change and that is good news. Her lungs showed a little congestion this morning but with respiratory treatment and her new position they have cleared up. Her blood gasses are excellent but they still have her on increased oxygen. Her lab work is improving so they are monitoring that.
Hope definitely has some attitude, which I'm sure she gets from me =) When she is lying on her stomach she likes her face straight down, but the respiratory therapist keeps moving it to the side, only for her to move it back to the middle. The therapist told her: "Hope, I know you don't like it but you need to move your head where I put it." Magically, when they moved her head again she left it in that position. So she is a lot like her aunt, stubborn but when you asked nicely she complies with your requests!
Keep praying! Hope needs them.
Thursday, December 18, 2008
The doctors said she had a small series of small seizures last night, which is not uncommon after surgery. They did an EEG which DID NOT show seizure activity but DID show normal brain activity, so that is great.
They also did a brain scan. There are 4 levels of brain bleeds:
Level 1: no worries, typical
Level 2: not significant, not overly concerned
Level 3: begin concern
Level 4: very concerned
In Elkhart, on Monday, Hope had a level 1 brain bleed. When she was tested today she had a very low level 2 brain bleed. The doctors are not concerned because that is typical after surgery. They are watching her (per usual) but do not expect the bleed to worsen.
The doctors are also very encouraged. Her respiratory numbers are great. Her metabolic functions are a little unstable, however, following a surgery it can take a few days for a normal adult to get their metabolic functions back in order, so with little Hope it might take longer, and they anticipated that. They are constantly checking and adjusting accordingly.
The latest word from Grandpa is that he really likes the staff at Riley and thinks they are doing a great job. Which, for those of you who don't know Hope's Grandpa, is a big deal. He's knows his hospitals and nurses and if he approves, well then I have to agree!!!
Grandpa also said that Hope is still very active, moving around, wiggling her little arms and legs. The nurses have also said that they thoroughly enjoy Hope but that "she definitely has a mind of her own" (which Grandpa is convinced she gets from her Dad).
Look back later for the Daily Hope.
Thanks for all the prayers and support. Keep them coming!
Wednesday, December 17, 2008
Her surgery went well, says the surgeon. He also said that she was one of the tiniest babies he has worked on, but she is a fighter. She is stable for now, but definitely not out of the woods. They removed the necrotic portion of the bowel and have connected a colostomy temporarily. We are not sure how long she will be at Riley, could be anywhere from 2 to 6 weeks. Time will tell. When she is released from Riley they will fly her back to South Bend. She will continue to have the colostomy until she gains more weight, but I'm not exactly sure how much. When it is time for the colostomy to be removed she will be flown back to Riley to have that procedure done.
We have so many things to be thankful for today. We are thankful for safe travels for Hope, and the rest of the family, for the incredible transfer team, for the surgeon and his precision, and for every single prayer and warm thought. We also wanted to thank the Durham's for swinging through and spending some time us the family.
We appreciate everyone's support so much, but don't stop now. Hope has a long road ahead of her, but we know she's a fighter and, personally, I look forward to introducing her to all of you!!!
In other news: I just finished my last final for the semester. Thank goodness those are done.
Will keep updated.
Update** 10.45am CST**
Hope has left the building. Her plane arrived and she is now in the hands of the transfer team. Grandparents and parents are en route via car.
Tuesday, December 16, 2008
Everyday that I'm not able to see Hope, Andrew sends me a picture of her so I can have my daily dose of Hope to help make it through the day. If I was allowed to write prescriptions I would write one that required a daily dose of Hope.
Hope will not be transferred to Riley in Indianapolis tonight. Her doctor feels she is stable enough to stay in South Bend till the morning, and the weather is not very cooperative for airlift, which would mean putting her on 3.5 hours worth of bad roads (which I personally disapprove of). Her status has not changed. They will do another x-ray series at 6am tomorrow morning to try and determine what is going on with her bowel, if it has died or if it is regrowing.
Andrew and Sarah have checked BACK into the Ronald McDonald Room so they will be staying there again tonight.
Please continue to pray for Hope as she continues to fight and for Andrew and Sarah as they try to figure out where to go from here.
(also, feel free to leave comments, prayers, thoughts, well wishes on here. We'd love to know who's out there praying for our Hope)
When I went to see Hope on Friday, the 12th, she was just chilling, hanging out in her little box, very casual.
Thank you for all the prayers, but don't stop praying yet!!
Saturday, the 13th, Hope had a rough day. They found out she has pneumonia in her tiny little lungs. She is on antibiotics and the pneumonia has started to clear up. The doctors also found a brain bleed. Fortunately a brain scan on Monday showed that it is a level 1 bleed (level 4 is the "worst", as if any bleed is a good bleed??). She was pretty stabilized on Monday and she had a very good day. She fought through that scare, thanks to everyone's thoughts and prayers, Hope pulled through.
Today, Tuesday the 16th, the doctors didn't have good news. The pneumonia is clearing up which is great news, but she had some acidosis, her pH levels weren't good, and her blood sugar was a little out of the ordinary. After some investigation into things it appears that Hope is having some problems with her bowel and that part of her bowel may need to be removed. We are still waiting to find out the details of this, hopefully today, but if surgery is required she will be airlifted from South Bend to Indianapolis.
Keep praying. I will update when we know more.
If you are in the Newaygo County area, our home church, Church of the Living Christ, will be having a special prayer gathering tonight, just for Hope. See the announcement sent out by Pastor Nate below:
Special (and VERY important) Prayer Gathering TONIGHT (Dec 16) at CLC at 6:30 (for about 25 minutes)
We’ll be praying for Hope Robinson, who is the newborn daughter of Andrew and Sarah Robinson, and granddaughter of Dave and Lynne Robinson.
Hope was born 16 weeks early on December 7th, and weighed 1lb 8oz. Baby Hope has had a difficult couple of days. It seems she has some problems with her bowels and she will be taken to Indianapolis for surgery TONIGHT with a specialized neo-natal surgeon. The doctors believe she will make it through the surgery, but we need to be in earnest prayer.
If you can make it to the prayer gathering tonight, please do so.
If you aren’t able to come, join us from home as we ask God for protection and healing!
Almighty God, our heavenly Father,
we pray for Hope as the Robinsons are preparing for surgery.
Enable the family, by your Holy Spirit, to commit Hope with perfect trust into your keeping.
Watch over Hope and protect her in the hours of darkness.
Preserve the Robinsons in their faith in Jesus Christ, who knew uncertainty and suffering.
Bless and guide the surgeons and nurses who will care for Hope, and give them success in their work, that we may praise you for your goodness.
And finally, O Lord, grant that Hope may live through this experience and grow to be a healthy and vibrant child.We pray in the name of Jesus and by the power of the Holy Spirit, Amen