October 14, 2009

OK, so I am a terrible blogger... totally forgot to update! Gabi is doing so well, I just forgot. Guess what? Gabi finally figured out what her legs are for and is standing!! She never wanted to before, but now she wants to stand a lot! We are so excited for her! She is getting so big. She is over 12 pounds now, and is starting to eat solid food. She loves to bite with her 2 teeth. She has a very strong bite, and likes to see if she can peel Grandma's fingers. :-( It hurts!! She has been very fussy the last few days... I think she grasped the fact that if she fusses Mommy comes and picks her up and gives her attention a lot more. She loves to be held and snuggle. Unfortunately she likes to fuss at night, so Grandma is very far behind in her sleep.... Zzzzzzz. Oops, sorry about that! Very tired! She is doing great otherwise, and we are thrilled with her steady progress. She goes in to be evaluated for prosthetic hands and feet next week and it will be interesting to see what the Dr's decide. I hope she won't have to have much in the way of surgery... she has already had enough of that!

Sept 11, 2009

Gabi is getting to be such a big girl!! She has been pretty fussy the past few days, and even had a trip to the ER due to bleeding around the g-port, (not serious, just her skin was rubbed too much by the port)... and guess why she's been fussy? She has her first new tooth coming in!!! She beat her brother to the first tooth. I can't wait to see how it looks once it is in all the way. I know I am terrible about putting in pictures... I promise I will download new pictures soon!! She is growing slowly but surely. Pray she keeps up the good work and that her tummy would settle down. Growing teeth seems to make the rest of Gabi kinda miserable. :-(

August 24, 2009

Gabi is getting to be quite the verbalist. She likes to sing along when her musical toys play, and gets quite indignant if you interrupt her while singing. It really is too cute for words. She is getting stronger by the day, but still doesn't want to support her weight on her legs. Her legs are strong and she kicks well and often, but standing on her heels is not her idea of a good time. She scoots well though. If you put her down on a blanket, she will happily scoot herself off agan.She is trying to learn how to roll over like her brother Caleb, but so far no luck. We are hoping she gets it soon!
Jessica tok Gabi to the eye doctor, and she will need glasses when she gets a bit older. She is near sighted like her mom... she's going to be SO CUTE with glasses!!! I can't wait!

August 8th, 2009

Gabi is doing great! She is up to 10 1/2 pounds, and is so talkative! She will coo up a storm if you give her attention, and she is finally learning to fuss a bit when she wants you to pick her up. Caleb was getting a lot more attention just because he demanded it, and Gabi was so mellow. Now she makes sure she is not overlooked! She will smile and coo and melt your heart at the least provocation. :-) We love to spoil her rotten. Her appetite is getting much better too. She is getting so strong, and loves to kick and bounce. Her bloodwork has been coming back just fine, which means the dialysis is working well. We are so glad she is doing so well. Her hair is finally growing in a bit too... she is so fuzzy after a bath ... it is adorable!

July 23rd

Well, we had an interesting day!! Gabi's gastric port has been a bit troublesome of late, and tonight it popped right out, allowing Gabi's stomach to empty quickly all over the place. She was a human volcano! Not good, not good at all. Fortunately Jessica was able to reinsert the port quickly, then off to the hospital to get a port that would stay put. Her old port's balloon that helps hold it in place kept deflating, allowing gastric contents to leak out, but just minimally. Once the port came out though, it was quite unnerving to see her dinner again... all of it in about 3 seconds flat. Scary!! All's well that ends well, however. Gabi is once again a happy camper. She is doing great and growing well. We love her so much!!!

July 20th

Gabi is one cranky baby today. She is plagued by occasional bouts of gas and cramping, and boy does she howl!!! Poor Jessica gets quite upset when Gabi seems inconsolable. Gabi burps or toots and then calms down for a bit, but soon she is crying again. No fun for mom or Gabi!! Fortunately it does go away after awhile.
Gabi is getting so big! She is 9 1/2 pounds now, and both she and Caleb are growing out of their clothes at a rapid rate. They get cuter by the minute. They are both cooing and learning how to grab things, and they are both getting pretty good at sitting up and holding their heads up well. Gabi is a little behind, but catching up quickly. Caleb is super strong. He reminds me so much of his uncle Brian, and Gabi has her moms beautiful big eyes. Their personalities are very different too. Caleb is very demanding, while Gabi is calm and laid back. It makes for an... entertaining household. I am really looking forward to an empty nest!!!

July 11th

Well, Gabi just gets cuter every day!!! She is gaining weight well again. (thank you so much for your prayers!!) She is over 9 pounds now, and has really gotten the hang of eating her bottle! She coos now, and it just melts grandmas heart when she does! It is so adorable! She and Caleb are finally sleeping through the night... so very nice and quiet. We are all enjoying the rest!

She is completely healed from her infection, and Jessica is keeping a very close eye on all her exit sites and cleaning them carefully. Gabi is doing much better about not spitting up a lot, and she hasn't vomited for days.... no wonder she is doing so well with her weight gain. :-) We are so pleased with her progress, and can't wait until she is big enough for a transplant, and no more tubes hanging out of her little body. Only 15 pounds to go before she is big enough.

July 1st

Darling Gabi is feeling better today, and is spending most of her time sleeping and healing up. As you can see from the picture on the right, Gabi has a LOT of medical equipment... and you should see the garage!!! Boxes and boxes of medical supplies. Our kitchen counter is covered in medicines and syringes for measuring out all the meds. I feel like I live in clinic... but Gabi is so worth it! She is the cutest little punkin!!
Pray that she starts to gain more weight... she is not growing like she should. Thanks!!

June 29th

Today we had a little scare... Gabi has an infection around her p-d catheter. She had a fever, and was really miserable. She had to have a trip to the ER for some intravenous antibiotics, and will be on oral antibiotics for a while. She is doing much better now, but still gets pretty uncomfy. She is so darn cute, even when she cries. She sounds like she is talking even when she cries... so adorable. As soon as I figure out how to get her new pics to post, I will post them. She is getting cuter all the time!! :0)

June 11th

Well, Gabi has been home for two days now, and she is doing great! Our home looks like a hospital ward, with all the boxes and boxes of medical supplies, machines and medicines everywhere, but we are managing ok so far. Jessica is doing a great job of making sure Gabi gets all the care she needs, and is a pro at hooking Gabi up to her dialysis machine, continuous feeding machine, and flushing her broviac central line. It's so nice to unplug Gabi from everything and be able to carry her around and take her places. She really is enjoying finally seeing the sun, feeling a breeze brush against her skin, and not being stuck in the same place all the time. Gabi is getting very chubby, and she gets cuter every day. We need to take more pictures so we can show you how adorable she is... but we've been a bit busy.

June 10 Gabriella is home!!!

Gabriella is finally out of the hospital and home with her brother Caleb and mom Jessica.
Her bedroom is a little crowded with medical equipment and suplies but at least it's home.

June 3rd

Gabi is doing super... Jessica calls her "chunky monkey" now because she has a double chin! She has really packed on the ounces and looks cuter than ever. She is just gearing up to go home on the 9th!!! Grandma can't wait! She has made it to 2 months old, and is off the monitors, and gets to go on walks regularly because she has only one tube in during the day!! She will be able to be free of all tubes during the day once she comes home, and only 2 tubes at night... I bet she will love experiencing something other than the hospital finally. Gabi got to be held by her great-grandma Venetta for the first time last night... she had all her grandparents and great grandparents visit her last night!! They were all in town for Uncle Brian's graduation. She charmed their socks off of course!! She is so dang cute. Mommy Jessica is getting trained this week in all things dialysis so she will be ready for all the care Gabi needs. Pray that she learns quick and remembers everything!!

May, 17
Gabriella is just shy of 6 pounds now and eating mostly from the bottle. She is up to 90cc on her dialysis fluid so only 10 more to go before she can begin using the machine. That is the last step before she can come home, the tentative discharge date is June 3rd; which is also her two-month birthday.

When she is awake she is very alert and her big bright blue eyes soak in her surroundings.

May 14th

Gabi is doing so well!! She's really gotten the hang of eating now that we know how to help her achieve suction by pinching her little cheeks when she eats, and she is gaining weight quickly. She weighed 5 lb 13 oz tonight, and looks wonderful. The dialysis classes start on May 26th, and Grandma will have to miss a whole week of work... not so good for the pocket book!!! At least Grandma has some medical background, so hopefully she will do well and maybe graduate early. Jessica and Caleb move in with Grandma and Grandpa on the 16th, so pray we all get along ok!! Gabi should be out of the hospital by the first week of June, Lord willing. Life just gets more interesting all the time.... :-)

May 10th - Mothers day

Gabi is doing well, but she is not gaining any weight, so they are going to do continuous feedings at night. She will be getting 20cc's per hour for 12 hours, then fed every 3 hours during the day. Hopefully that will start packing on the ounces!! She is actually losing a little weight right now, and she needs to get to 6 pounds before she can leave the hospital. She is up to 80cc's dialysis fluid, only 20cc's to go before she can use the machine. It will only be another week or so before she gets there. Every step is a step closer to coming home for the first time!! Grandma can't wait!!

May 6th

Gabi is growing.. she is up to 5 lb 4 oz! She's gained a whole pound so far. She is doing really well with her dialysis, and they are up to 70 cc's at a time every 3 hours. Hopefully she will be up to 100 cc's soon, and then they can use a machine to do it,.. right now it has to be done manually. I'm sure the nurses will be glad when she gets to that point. Gabi is very alert and calm... Just don't change her diaper and outfit!! Then she gets pretty cranky. Her lungs work just fine!! She is sucha sweet baby.

Grandma is missing her babies... grandma doesn't feel well so she can't visit. :-( I can't wait to get better!! The babies auntie has a sinus infection (poor Grace...) I guess this is the season to feel crummy!! More updates as soon as I get better!!

April 29th

We visited Gabi again today... she looks so sweet without any tubes hanging out of her nose! She was awake and batting her big blues at me... she is going to be a heartbreaker for sure!! She is eating much better and will take about 2 ounces at a time. She is not very good at eating fast, however... those 2 oz take about 1/2 hour to eat. I don't mind! She is so adorable. Her brother looks huge next to her... we hope she will soon be keeping pace and growing like a weed. Today was their original due date...my how time flies.

April 25th

We got to visit with Gabi and she was wide awake for us... usually she is fast asleep. I even got to change her diaper and change her outfit!! She was so sweet and alert. She is tolerating her feeding tube well and should get her nasal tube out by Monday if it continues to go well.
We are looking forward to having her live with us soon, but first Grandma needs to take an intensive class to learn about how to manage her dialysis. So much to do, so little time.
Anyone have a large home that they need to rent?? We really could use one!!

April 23rd

Gabi had her surgery today, which went well, but Gabi has had a hard time settling down and cries every few seconds... very distressing for her momma!! Poor little thing apparently had had enough!! Hopefully by tomorrow she will be feeling better. She gets more precious by the day. Grandma and Grandpa are so lucky to have her for a granddaughter!

April 22nd

Gabi is doing well, so they have scheduled her surgery for tomorrow at 1 pm. They will just be inserting her gastric feeding tube, so it shouldn't take too long. The Dr. says she doesn't need so many monitors, so she isn't so wired up. It's easier to hold her when you aren't keeping track of a dozen different wires! The dialysis is going well and she will get a break from it for a few days after her surgery. If she continues to do so well, she may get to come home in a few weeks. Before that happens, though, we need to be trained in the ways of dialysis so she can continue to get the care she needs at home. Apparently it takes a LOT of training... I'll have to see if I can get the time off work. Life gets more fun all the time!! She is such a sweet baby, it's easy to accept the challenge.

Saturday, April 18

I am looking forward to seeing Gabriella today. She is enduring the dialysis well as far as we can tell. She is not eating as much from the bottle as we hoped so the feeding tube remains in place for now. Jessica is able to hold her and cuddle with her a little bit every day which I am sure is comforting to Gabi.
Caleb seems to be enduring all the trips back and forth to the hospital very well, he pretty much sleeps through it all. But new-born babies do that kind of thing. We appreciate the continued prayer for both Gabriella, Caleb and Jessica.

April 15th - first day of dialysis

Gabi started her dialysis today. So far so good, and the good news is she is back to her birth weight, so she is keeping enough food down to grow. Yay! She tends to spit up a lot, but I guess that is pretty normal. She doesn't always want to eat enough or often enough, so they are debating placing a permanent feeding tube in her tummy. It would require more surgery, so we hope it won't be necessary. She is not even 2 weeks old yet! She is so precious and beautiful, with such big blue eyes just like her beautiful mommy. She can't be held for a few days, and it is hard on us to see her but not be able to pick her up to cuddle. Once her body adjusts to the dialysis, then we will be able to cuddle again... I can't wait!!

April 12, 2009

Gabriella is doing well today, she ate 24cc of formula/milk this afternoon and if she keeps up the good feedings on her own they well remove the feeding tube.

They most likely will start the dialysis on Tuesday, We pray that the treatments will go well and that Gabi will keep having a good appetite.

Saturday, April 11

Gabriella had surgery yesterday and did well. She could start dialysis as soon as Monday. She will be in the hospital for several more weeks. She will need the dialysis treatments every day until she is big enough for a transplant procedure.

Thursday, April 9

Jessica and I met with Gabriella’s doctor and a kidney specialist Thursday, the prognosis is not good. Her kidneys are barely functioning. We told them to do everything in their power for Gabriella. She is going to need a kidney transplant, but that is not possible until she is at least 20 pounds. The surgeons are going to give here a catheter so she can have daily dialysis treatments. If the dialysis begins to work Gabi can start eating again and hopefully begin to gain weight. If this goes well she will be released from the hospital in about a month and the dialysis can be performed at home. Keep praying for Gabriella and for Jessica and Caleb.

April, 8 2009

Gabriella is still in the hospital, they did some tests this morning and found that her kidneys are only functioning at one tenth of what they should be. Her potassium level was too high and her sodium was too low. They stopped the feeding tube and started I.V. fluids to help balance thing out. It took them almost 4 hrs to get an I.V. in the poor little baby. She is trooper though she hardly fusses at all, I (Jim) was there when they were trying to put the IV in and she was just looking around with those big blue eyes and putting up with everything pretty well.

April 3, 2009

Gabriella and Caleb were born April 3rd, 2009, Gabriella at 7:29pm and Caleb at 7:31pm. Caleb was born healthy and strong at 5 pounds 9 oz, but Gabi was much smaller at 4 pounds 3 oz. We knew from the routine ultrasounds during the pregnancy that Gabi had no hands or feet, but we hoped and prayed that there would be no other challenges. From the begining she had a hard time breathing on her own and needed oxygen from time to time.
At 2 am April 4th she was transferred to Emanuel Children's hospital in Portland where she is receiving excellent care.