tag:blogger.com,1999:blog-19509040742222284092024-03-14T05:31:20.464-05:00Lillyann ElizabethWe set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome.
Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.comBlogger104125tag:blogger.com,1999:blog-1950904074222228409.post-35596543814073811852016-02-08T11:14:00.000-06:002016-02-08T11:14:05.847-06:00Heart WeekSo today is the first day of my CHD awareness week of posts on Facebook. Looking back has been a fun, yet hard, time; reviewing memories and heartache. As I look back on the last almost 7 years, I am grateful for all of the memories that I have got to experience with Lillyann. Every year I celebrate her birthday and enjoy looking over pictures of her as she grows.<br />
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Today I tapped into the "what is it" kind of thing. I explained HLHS and what the process is. Over the next few days I will continue to post my memories and the pain that we have endured as a family.<br />
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I am grateful for her doctors who have supported my decisions over the years about her care. Who can ease my fear with a quick 10 minute check-up to assure me that she is okay. The nurses that take that extra time to give both Lilly and myself a hug after every appointment. Doctor Julie Dietz that hugs me and assures me that I am doing a great job as her mother.<br />
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Sometimes I seem like I have it all together. I know everything that I have mapped out in my head doesn't always work but I still try to keep a calm head. I still need that little boost of confidence that allows me to cry out my worries and fears to begin the next step and move on.Anonymoushttp://www.blogger.com/profile/08181050273977103804noreply@blogger.com1tag:blogger.com,1999:blog-1950904074222228409.post-33731236810053630402016-02-01T14:34:00.001-06:002016-02-01T14:34:46.428-06:003 Years Later...Ok, yeah, I know it's been a while. No news is good news though! Nothing major with Lillyann over the later 3 YEARS! So... Let me tell you what has been going on...<br />
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After the Fontan, and the few incidents here and there, nothing serious. Let me think that far back. Lilly is still a little peanut, I think we just hit 28 pounds at her 6 year check up. We have had a string of random sicknesses, nothing hospitalizing. Her O2 stat is starting to lower ( I think we are around 78 right now), we are just monitoring at home. She was in dance two years ago and now it is horses. She has George (the pony) and Rebel (the horse) and is actually really good. She rode in the <i>Light Up the Town </i>Parade in Chippewa Falls for Christmas. And held herself in the group well.<br />
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Boy is she a ham! Loves water, animals, us and everything about life. She lives life to the fullest and does not skip a beat.<br />
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Dylan is now in 3rd Grade and I ask him how old he is a lot, because I can't believe how fast they are growing. he loves football, hunting, and archery. I think with all that happened to him when he was younger (having mom away and being a big boy with Lilly) he is mature for his age but has very strong feelings. He does not to be in trouble or see someone he loves get into trouble.<br />
He had a spout of some learning problems but has come out strong, like I knew he would. I am proud of the young man is is turning out to be.<br />
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And the newest member, Gage Mathew. A raging ball of demonic cuteness. Wow... He is a spitfire. Like a sour-patch kid. He is definitely his own person, wants to do his thing and no, you can't help. But, then he wants to cuddle all night long.<br />
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As the family, it hurts me to say that Paul and I are no longer together. Surprisingly, the divorce was an easy adjustment for the kids and we are all happier now. I am with a very nice guy (Chris) with two kids of his own (Dylan and Mia)(my Dylan we call 'Buck' just to keep the boys straight). Chris and I added a couple more to our "Full House". Mac (the dog) and Cheese (the cat). The two of them make the family really complete. Welcome to our crazy life and we love every minute of it. </div>
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<br />Anonymoushttp://www.blogger.com/profile/08181050273977103804noreply@blogger.com4tag:blogger.com,1999:blog-1950904074222228409.post-3017766853461847622013-01-09T13:45:00.002-06:002013-01-09T13:45:55.485-06:00Great Post Op Appointment!Even though our Post Op appointment was suppose to be in December, we went to Marshfield yesterday to see how Lilly was doing. We had to wait there all day because of some surgeries that tied up our Cardiologist but it was worth it!<br />
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Her Echo was "beautiful" in the words of Dr. Dietz. Lilly had developed a cough due to her Lisinopril (which is common in older adults on heart medicine.) We had planned to switch her medicine to another 'type' to eliminate this. However, after looking at Lilly's Echo, Dr. Dietz decided that she does not need it at this time. Let me tell you, I think my heart stopped! I took her doctor in my arms and embraced her. For those words, for a heart family, are words that we never hear.<br />
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She also is going to be taking off one medication every few weeks. So... in about four months Lilly will be off all of her medications! This is a miracle as we knew that medications were going to be a major thing in her life that she would be on them forever. I guess Lilly had other plans! <br />
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Our daughter has always been a person who saw herself as amazing, always changing her own body to make up for her heart disease. Although this made for interesting surgeries, God and Lilly had a plan. <br />
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Although I know that this change will more than likely be a temporary thing, I am loving this moment, knowing that my daughter has beaten all odds throughout her life and is a wonderful person, A real gift from God (not that all kids aren't). <br />
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My new prayer is for our heart friends, that they may, at one point, have a doctor that looks them in the eyes to tell them that their child will have the chance to be a normal kid, without needing medication. It is an amazing thing, and I don't mean to brag or make anyone feel bad, I just never thought this day would come and with my strong girl and God we have accomplished a feeling that I wish everyone could feel.<br />
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Many prayers to you all and I can truly say that everything will be okay!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com3tag:blogger.com,1999:blog-1950904074222228409.post-62628846879560410242012-12-24T11:37:00.003-06:002012-12-24T11:37:58.043-06:00Merry Christmas!Santa came early for our family... yeah, he texted us to let us know. Dylan asked a billion questions but they both thought it was awesome that he came early. Lilly got an LeapPad2 and is loving taking pictures of EVERYTHING, from the kitten to the t.v. Dylan is loving his Xbox and Kinect. He was rafting with Lilly all night (very hilarious to watch). <br />
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I am grateful that the year is almost over. It has definatley thrown us some curve balls but we hit them out of the park! Paul is completely healed from his heart surgery and is back to his normal self. We both have not seen any change (with his stamina) as they said we would but I know that it takes time to recover. <br />
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My Grandma has fought the big C and has been in remission a couple months now. She is getting stronger everyday and is recovering nicely from her broken back. Her strength is contagious and her smile is as well. Seeing what she has gone through has made me remember how strong we can be when times get tough. <br />
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Lillyann is back to driving us crazy! She is a dancer, singer, doctor, mechanic, and anything else she thinks of at the moment. She has a cronic cough due to her heart med, so we are switching it around the first of the year. It has not slowed her down by any means. <br />
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Both of the kids are loving the snow. I hope that you enjoy the new pics!<br />
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<tr><td class="tr-caption" style="text-align: center;">Dylan enjoying the mound from the snow plow</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lilly and our friend Mason, sledding on our hill.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Dylan's Christmas Concert (yeah he's not paying attendtion.(Black shirt in the middle)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">As always...posing for the camera</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sitting pretty (yeah it took a few takes)</td></tr>
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<span id="goog_663701062"></span><span id="goog_663701063">Merry Christmas to all of our friends and family near and far away. Wishing everyone a healthy New Year, </span><br />
The GeslersNaomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com1tag:blogger.com,1999:blog-1950904074222228409.post-72541897519728557232012-09-21T22:08:00.003-05:002012-09-21T22:08:58.445-05:00Fontan Update Day 10Hi Everyone, <br />
Sorry that I did not post yesterday but wow..! Lilly's lab and x-ray went awesome Thursday ans they decided (with Lilly's help) to let us come home. Yes, I said it...HOME! We got here around 6pm, just in time to surprise Dylan. He was so surprised! <br />
So, for the first day home we were kind of lazy. Her and I stayed cuddled on the couch until 10 this morning. It was great! She has developed an attachment and has not wanted me to leave her sight for a minute. Paul shot a deer tonight and both kids were going to stay at my brothers while we went to look for it. She cried so hard, it made me feel bad. Needless to say, we never found the deer. But, I am worried how long she will be scared to leave me. <br />
With the low-cal diet, yeah... let me just say "crazy". She has been living on high fat everything. I was the mom that walked through the store checking labels for the highest fat and calorie count and she got used to it, not to mention she could eat whatever she wanted (granted candy and soda were treats) anytime she wanted. Now, I have to tell her what she can't have, I think that is the hardest part. <br />
Overall she seems to be loving being home with Daddy and Dylan although she is so tired. Her O2 has been in the high 70's- low 80's and she takes a lot of naps and a lot of breaks. I guess as the weeks go by she will be back to her normal self but now, I am just glad to see her smiling again!<br />
We have a Warfarin/Cumadin blood check Monday and a Post-op with Dr. Dietz in Marshfield on Wednesday of next week. Talk to you soon. Hugs and Love, <br />
Mommy, Lilly, Daddy and DylanNaomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-36311613896918677452012-09-19T19:47:00.001-05:002012-09-19T19:47:25.135-05:00Fontan Day 8All things are going as expected for Lilly. Yesterday we had her up and walking for most of the day. By mid-afternoon her stats had dropped and we needed to go back on oxygen through the night. Last might we also tried Roxiset (kind of like Tylenol with Codeine) to help Lilly sleep and it worked wonderful! She finally got a full night sleep and woke up in a happy, cheerful mood. <br />
On rounds we decided that Lilly needed a day off. She did not need to do an x-ray or and blood draws today (YAY). We took her off oxygen again and the goal was to keep her off for the day. PT came and we walked up half a flight of stairs and down to the cafeteria for lunch before she started to get tired. After a nap her blood pressure seemed to drop a little so we limited walking around. Dr. Sadock (Cardiologist on the floor) thinks that we will need to adjust her Lasix tomorrow when we look at her x-ray. <br />
If we can keep her off the oxygen and fix her meds, they said that possibly Friday we may be able to go H (you never say the word until you walk out of the hospital, not even the doctors say it). We may leave with oxygen, just as a precaution if her stats don't stay up tonight. <br />
Other than that we are giving her the first shower she has had in over a week later tonight. <br />
P.S. It has been a crazy week both here and back home and we may need some extra prayers sent out. I met a beautiful 2 year old boy this morning named Jake who was diagnosed in July with Cancer. He is here getting a chemo treatment and got a bladder infection as well. Please pray for him and his parents for the strength and hope. Also my grandmother Donna, who has just gone into remission a few weeks ago fell. We found out that she has a hairline fracture on her spine. Please pray for a full recovery. Thank you to all who pray for us as well!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-92103744120241313892012-09-17T10:59:00.000-05:002012-09-17T11:06:29.033-05:00Fontan Day 6....I think.I forgot how the days seem to blend together when you are here at Children's. It seems like we have been here for a month at least and it has been less than a week. Yesterday Lilly seemed to be "Done". She wanted to go home and be out of here so bad. She is starting to get mad at the world. <br />
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We have had to go up and down on the O2 from .5 L to 2L currently we are sitting around 1L and have been hovering around the upper 80's for her oxygen stats. <br />
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Lilly actually gained weight a little from yesterday, she was at 10.3kg (22.7lbs)and we are at 10.4kg (22.9lbs)today, surprising as she really hasn't eaten much.<br />
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She has learned, because she is too smart, that the people that come in in the blue long coats (lab coats) are not fun and can not be trusted. She can be such a drama queen and often screams at them when they walk in. It actually is kind of funny. <br />
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She is still struggling to move around too much and mostly begs to be held. It breaks my heart that I need to tell her "no" so much this trip here. "No, you can't have peanut butter toast", "No, I can't carry you all the time", I find myself laughing to keep away the tears sometimes.<br />
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I do feel very blessed to be here at CHW, I know that both her and I are in the best hands possible and they are doing everything in their power to get us home quickly and safely. Besides, I know which strings to pull to get the result that I want and my voice and opinion heard. Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-79314828944034607422012-09-15T13:07:00.000-05:002012-09-15T13:08:09.259-05:00Fonatn UpdateHappy saturday everyone. Yesterday afternoon we were moved up to East 8. The view is nice and we don't get bothered as much by the nurses. She is in room E875 and loving the fact that Mom and Dad can lay with her in bed. <br />
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Lilly had an exciting morning today; she had her other two chest tubes taken out along with her pacer wires. Dr. Mike from CV Surgery is the sweetest, he enjoys letting Lilly know what is going on at all times. Now with them gone, she looked at her "Friend" Dr. Mike and said, "I'm free!" I am not sure if I care too much for the Cardiologist on this floor but... he thinks that she needs to stay until Tuesday. I don't want to rust her into letting her come home, however, I think that three days is a little overkill. We will see on the X-ray tomorrow and maybe it can be sooner. We were able to leave the room and see the fish tank on the 1st floor and she was able to pick out her own movies. The Child Life lady on W3 make Lilly a sticker chart. Every time she accomplishes something like, a tube comes out, she stands, or walks, she gets a sticker. Every 10 stickers she gets a prize. She picked out a princess doll today! The sticker chart is really helping to motivate her to move around. She is slow going but everything helps. Right now we are on room air and have been anywhere from 75 to 85 O2. Yeah that is a big difference but what can you do? Thank you to everyone for all of the prayers and we look forward to coming home soon. Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-86777440037871062302012-09-14T10:32:00.001-05:002012-09-15T13:08:44.968-05:00Fontan Day Day 4Lilly had a great night! She was able to get some much needed sleep and only woke up once at 3 AM. Then all of a sudden at 9 am I had to make my first plea and demand to the nurses and doctors. Her Foley Catheter was leaking and she was screaming when she urinated. The nurses that are here are newer and thought that because we are in a study (to see about kidney function with cardiac patients) they did not want to take out the Foley. I, of course, ran down the hall and found any doctor that would listen and demanded that the nurses take it out NOW! When they finally agreed I sat and cried, holding her hand while it was removed. Until Lilly looked at me with tears in her eyes and said, "Its okay Mom, they're all done". I couldn't help but laugh. <br />
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On another note, we have decided that the two remaining chest tubes will be divided to see which one is still draining. The Central line and left PIC line will be removed today as we are now off all IV medications and have been for 24 hours. <br />
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I am hoping that by tomorrow we will learn how to address the chest tubes. I have relived over the last few days how miraculous my little girl is. She has the heart of a soldier and feels the pain in others like an angel. She is one of a kind and will always be. There are so many things that Lillyann is and every one of them show how brave and kind she is. <br />
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This was taken yesterday afternoon. <br />
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Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com3tag:blogger.com,1999:blog-1950904074222228409.post-18079845917081708662012-09-13T08:59:00.001-05:002012-09-13T08:59:42.348-05:00Fontan update!!The day after the Fontan was very difficult. Lilly was sedated but would only sleep for an hour at a time. It was hard to watch! She would wake up and talk (somewhat) to whoever was close. She told us that she wanted to be held quite a bit, which was really hard to tell her "no". I forgot the pain it causes to see your child in pain and not be able to help.<br />
Her Epinepherine (a med that keeps her heart rate up) has been weaned completely off along with her Dexmedetomidine (a sedation medication) and now she is awake most of the time but has trouble falling to sleep. Although she is finally sleeping now!<br />
Dr. Micheal said that we will be weaned off the Milrinone (a medication to help the heart squeeze better) as we are down to 0.6 mL now. We are also on Spironlactone. She had been on this Lasix drug in the past and will help 'take off fluid' or help her 'dry out'. We started her on oral medication today when before it was via IV. <br />
About 20 minutes ago Dr. Micheal came in and gave Lilly some Versed (sedation med) to pull two chest tubes. She was awake and kept telling Dr. Micheal that he was doing a great job and actually did better when she was seeing what he was doing. <br />
Nurse Jenny then was able to pull her ART line (IV) and once we get off the Milrinone we can get her Central IV out. <br />
She has been on an ice and water diet and after the ART line came out Nurse Jenny allowed her a little treat of a sip of my white chocolate frappe. Now I will need to get Lilly her own as soon as she can eat because she liked it so much! <br />
This morning has been a great day already, even if the weather is gloomy today.Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com2tag:blogger.com,1999:blog-1950904074222228409.post-4310921864639856652012-09-11T21:34:00.002-05:002012-09-11T21:34:48.292-05:00Fontan Complete!!!As of 6:30 pm Lillyann is out of surgery. She has been doing great and is back in her room on W3. We are in 323, which is one of our friends old rooms. tonight has been hard for all of us as we are trying to make her comfortable. <br />
As usual, the sedation wears off quicker than expected and she had already tried to sit up on her way to her room after surgery. The doctors and nurses are being very helpful with monitoring her every mumble. We have Melissa tonight and she has not left the room since our return. <br />
Paul is relating to her as he was right where she is about nine months ago. Which makes it harder on him to relive all of his pain as he sees it in her. <br />
It is difficult to tell your child "No" when all she wants is a drink of water and she can't. Talk about heart breaking. <br />
Any who, Dr. Tweddell thinks that everything looks good and said that, as usual, the next couple nights will be hard. <br />
She is on seven medications and some Platelets for now and hopefully soon we will be back down to our two (wishful thinking). Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com3tag:blogger.com,1999:blog-1950904074222228409.post-52512070172353031452012-09-11T16:24:00.001-05:002012-09-11T21:31:42.662-05:00Fantan UpdateBridgette, Dr. Tweddell's nurse, came out and updated that they are done with the procedure! They are going to start patching up and waiting to make sure there is no extra bleeding. We have another hour and a half before we get the word form Jim Tweddell so we wait some more. He did not feel like making the pulmonary artery bigger was necessary so it was not done. He finished her valve and we will see in a few days if it has improved. <br />
Overall good so far and looking forward to the end of a long surgery day!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com2tag:blogger.com,1999:blog-1950904074222228409.post-32152751586374553212012-09-11T14:15:00.002-05:002012-09-11T14:15:51.193-05:00Fontan Surgery DayWell, the day has come and Lilly was taken back to the OR at 11am. The last update that we got was that they were still preparing her for surgery and 'opening her up'. <br />
Last night was eventful! She did her MRI and we found that her Left pulmanary artery is smaller than normal and will be added to the "TO DO" list for Dr. Tweddell. She woke up afterwards and wanted peanut better toast and coffee at 6pm and again at 10pm. It is amazing how funny everyone thinks that is because that is just one of her strange eatting habits we have handled for the last two years. <br />
She made her Courage Bead necklace provided by Wings of Endowment, and had a blast placing each one on. They are beautiful and a great keepsake for her to see all that sh has accomplished. <br />
I made that mistake to tell Lilly taht all of her nurses were her friends and were going to stay up with her at night and play. Needless to say, she took it seriously and was up until around 11pm. <br />
She in some what crabby but can you blame her!? <br />
I will update as soon as I hear more news. Prayers be with her today!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-2505572348936669232012-09-05T15:26:00.000-05:002012-09-05T15:26:02.587-05:00Fontan less than a week awayWith Lilly's Fontan pre-op on Monday the 10th, things are starting to finally sink-in. We are hopeful and nervous waiting for the day to come. Lilly was going to be 1st case Tuesday the 11th but has already been pushed back to 2nd. As always this can be frustrating, but we know that another kiddo is needing something before Lilly. We are hoping that we can take her out for a good supper and activity after the pre-op so she can be exhausted on surgery day. <br />
We are still running around the 78-80 O2 Stat which hasn't changed. Her spirits are high and Dylan is really supportive. He was bragging to her that this will be her last surgery before the doctors have her all-fixed-up like daddy. <br />
I don't even think there is a fear or doubt in her mind right now so we hide ours. I will be sure to post more over the next few weeks until Lilly is back to her normal (driving us crazy) self. Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-76672881214921762242012-06-13T18:27:00.000-05:002012-06-13T18:27:31.311-05:00Surgery is in our futureHi Everyone! Sorry it has been so long... no news is always good news in a heart family! Paul found out last week that he can be off all of his heart meds, but needs to keep some cumidin on him for those "just in case" situations. Being Paul he thinks that his scar is a "battle scar" and trys to make everyone laugh about it. <br />
Lilly went to see Dr Dietz May 15th and she decided that for one, Lilly is just small and always will be, no matter how much calories we stuff her with. She also decided that Lilly was ready for the Fontan. Just hearing that word brings tears to my eyes. The stress and hurt that we have been blessed to be away from for two years is now back. We have decided to wait until this fall to give Lilly the summer she so much deserves. CHW has been in touch but nothing is on the books at this time. <br />
Paul is having a hard time with this surgery, as he has just done this in January. Now he knows how strong our girl is, how much she has accomplished. But slowly he is realizing that this WILL happen no matter what. <br />
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Dylan is out of school and wow! I think the year went way too quick! I am back to being a stay-at-home mom because the kids need me....or wait, maybe I needed them. Anyway, I am home. I have started college at home for Psychology online and loving every minute. <br />
Please keep all of our heart families in your prayers as Caden is now home where he belongs. This is a tough journey but we take it one blessing at a time.Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-299472316136559182012-04-11T10:09:00.000-05:002012-04-11T10:09:10.400-05:00Time sure flies!I can't believe it has been so long since I have posted. Well no news is good news with Lillyann. We went through the winter with no major illnesses. Lilly had her appointment with Dr. Dietz (her Cardiologist) on March 9th. She said that Lilly is doing amazing except for her weight, what else is new! With two weeks before her third birthday Lilly was still at 22 lbs. She gave us until March 28th, the kids' yearly check up, to get her weight up. Otherwise we would need to put the G-tube back in. With "super pediasure" (pediasure/carnation instant breakfast/chocolate syrup) We were able to get her up to 23lbs 6 oz. <br />
We go back to do an Echo on May 9th in Eau Claire I will let everyone know how it goes. Right now we are pushing the Fontan back as far as possible to let her get bigger.Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-42270595040149965202011-11-21T22:51:00.000-06:002011-11-21T22:51:32.053-06:00Winter is hereIt is hard to believe how fast this year is going! With Dylan in school and me back to work, very few doctors visits for Lilly and more for Paul, it is hard to believe that Christmas is right around the corner. Well, let me get to it and update eveyone what has been going on in our crazy lives!<br />
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Dylan absoulutly loves school! His 4K teacher, Miss Welhofer, is new to the school and has been a great asset to the Bloomer District. Sometimes he gets home and surprises me with all of the new things he learns. Sometimes I wonder how he got to be so smart! Tomorrow they are actually making all the 4K families a Thanksgiving Feast! It should be very interesting!<br />
Lilly had a little scare a few weeks ago. Her O2 stats dropped, around the mid 70's, and we could tell she was getting tired out easily. Dr Dietz did an Echo and thinks everything is going better than expected and has pushed the surgery back until next winter... just to get it done before she starts school (gulp). Unless she gives us real signs that she needs it. Lilly has graduated from the Birth 2 three program and is learning more everyday. I think that it is so cute when we are in the car and she starts to sing whatever is playing or she will sing Twinkle, Twinkle, Little Star that ends with the ABC's. What a personality she has!<br />
Paul went in to the doctor ro have his hip checked out, we had been having problems with it for over a month. They noticed a heart murmer and thought an ECHO was needed, it turns out he has a hole in the upper chambers of his heart about the size of his thumb and his Aortic valve is "sticky". A Catheter and a Heart MR was done November 9th and Lilly's Cardiologist was called in by me for a second opinion. He will need a heart surgery to repair the hole and to balloon open his valve. Dr Dietz is very invoved, which is great that she takes such care of not only her patient, but her Daddy too. She is wanting to have Dr. Twiddle (Lilly's surgion) perform the surgery on Paul soon. We will know more after the "Meeting of the Minds" with Marshfield Cardiology and Milwaukee Hospital. <br />
We count our blessings daily and thank God for all he has given to our little family! I hope that you have a wonderful Thanksgiving, and remember that those little things are sometimes the things that matter most!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikiMWrLptRZ1ehAj6eIXLfAhEbukqP_cI50hE_yiFgkvUjgaBStc9HxZbJihbQITmMXxVoeSMg70NRZbqF1lsSDuHiB-Xu0y9D5hz5ckjKCfo8FAjImOG6lMhPkAfefim9Prs2tIGsP4Y/s1600/halloween+2011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hda="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikiMWrLptRZ1ehAj6eIXLfAhEbukqP_cI50hE_yiFgkvUjgaBStc9HxZbJihbQITmMXxVoeSMg70NRZbqF1lsSDuHiB-Xu0y9D5hz5ckjKCfo8FAjImOG6lMhPkAfefim9Prs2tIGsP4Y/s400/halloween+2011.jpg" width="300" /></a></div><div class="separator" style="clear: both; text-align: center;">Halloween- Dylan the Woody Cowboy and Lilly the Princess</div>Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-69305656298416368732011-07-11T20:42:00.000-05:002011-07-11T20:42:35.765-05:00UpdateLilly is doing wonderful! She final hit 20 lbs- the at home scale. Her eatting has not improved she can go through 2-3 days of barely eatting and then 2 or 3 days where she will eat all day long?! Sometimes she boggles my mind.<br />
I starting working at a local auto shop and the kids were placed in daycare. They did very good however it is so expensive I dont know how long they will be able to stay in there.<br />
dylan is so excited to be going to school this year! Everytime we go into Walmart he tells me he needs a backpack. <br />
Well sorry this is short but we have been so busy! Thanks for the continued prayers!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-34171986180982337002011-05-31T09:14:00.000-05:002011-05-31T09:14:59.781-05:00Where did May go?It has been a busy month and looking back I can't believe that May is over already. Since Lilly's GI surgery she has been doing wonderful! I have not heard one complaint about her tummy hurting anymore and the site is completely healed. I thought that she was active before.... gosh has she been moving now. <br />
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Since the last update we and pretty much graduated from the birth-2-three program. They will just be visiting once every three months to ensure that she continues to move forward. It is a bittersweet moment when you get so close to therapists and then they just go away. You are so happy to not need the help anymore and then again it is like a friend that moves away.<br />
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Lilly and Dylan have both been enjoying the spring/summer weather. Memorial day actually kicked off our first camping trip that Lilly has ever had. We stayed local (only about 10 miles from home) just to make sure that the kids could handle it. We went to a campground and parked ourselves close to the playground so they could play and we could sit back and watch. Paul and I spent to majority of the weekend fishing for, what I now found out were Mud Guppies.<br />
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Dylan will be starting a pre-4K program in a couple weeks. The school provides this to allow children to get a taste of what the actual school life will be like. The class will only be 4 days and three hours long (just as long as school will be). He is so excited! <br />
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I will be getting a full time job before long and the kids will be going to daycare for the day. I think that it will be good for both of them to develop social skills with kids their own ages. I guess we will see how it goes! <br />
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Thank you for all of your support and prayers.Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-45825359806650460412011-04-15T20:31:00.000-05:002011-04-15T20:31:57.723-05:00Day 3What a great day! Lilly was placed on a Full liquid diet so she was able to eat as much ice cream and chocolate pudding as she wants! Boy is she a happy girl. <br />
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We also were able to get the IV removed. Lilly was having troubles getting where she wanted to go and made a fuss about it. Now it is out and she has been running around the Peds floor (literally) and finding any toys that she possibly can. So far all of the nurses have been really good with our requests which has given me a sense of comfort with leaving her there overnight. <br />
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I really thought that we had been here, done that sort of thing. What was I thinking? It has been over a year since she has been hospitalized and I forgot how mentally and physically depressing these ordeals are. We are all ready to come home and stay there for as long as possible! Maybe tomorrow afternoon if all goes well with solid foods.Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-33887136082838411852011-04-14T13:53:00.000-05:002011-04-14T13:53:35.225-05:00Post surgery day 2Lilly is doing great today. She is off Morphine and is able to have normal Tylenol to control her pain. She is still on a clear liquid diet so she has been loving eating slushies and eating ice chips. We had to distract her in order to go and eat. I would feel too bad easting in front of her when she has been asking for a cookie all day. I hope that tomorrow she will be able to eat some real food. She certainly has her normal attitude back and will only let me hold her (daddy just does not cut it)! I almost forgot how uncomfortable the chairs are in St. Joes Hospital.... I sure do remember now! <br />
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I will let you know how things are going tomorrow!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-81549612132029967632011-04-13T17:20:00.000-05:002011-04-13T17:20:08.120-05:00Surgery is overLilly was 1st case this morning and the surgery started about 9:05 am. She actually went with the Child Life lady as they counted the "funny hats" (surgeon hats). It was just enough time for us to get some breakfast before they called us and told us she was done 9:50 am or so. <br />
She has taken this whole thing very well and has been quite a trooper. She has been sleeping most of the day and has only woke up when it was time for her Morphine. She has her normal "don't touch me" attitude and I can already see her getting back to her normal self tomorrow. She is only able to eat a few ice chips (which she doesn't mind) during the day and possibly tomorrow we will be able to start foods again. <br />
Dc. McGill told us not to worry if she doesn't have appetite for a few days. All is well now and I will let everyone know how things go.Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-37045636020819076522011-04-11T15:43:00.000-05:002011-04-11T15:43:20.156-05:00GI Tract surgeryHi Everyone! I just wanted to post before we head off tomorrow night to Marshfield. We will admit her at 6:15 am Wed. morning. I will try to update as best I can throughout the rest of the week. We are hoping to be home Saturday night but we all know how that can go... However, Lilly is still really good and she even ordered her own breakfast when we went out Sunday. "Egg ummmm bacon!" So yes she got a scrambled egg and two slices of bacon and ate every bite! She has been doing really well as long as she gets what she asked for. If not, she may take a few bites and then fight with you until she can get down. <br />
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Dylan will spend the rest of the week with Paul's Grandma and Grandpa. Dylan is excited to be there and is hoping the Paul's dad will take him fishing Saturday. We'll see! <br />
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I will post as soon as I can! Please also put a prayer in for my niece tomorrow, she is having a kidney surgery in St. Paul Minnesota. We hope that this will fix everything for her!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-63452772497427951872011-03-31T11:23:00.000-05:002011-03-31T11:23:44.120-05:00GI appointmentIt is official Lillyann will need stitches. It is actually more like a surgery as what they told me...<br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3kHOm15oy1qhfGTlWmiScvTZP1UeGsNt_HW-FFPafiM5u3-iqSVRvxqMQoTWtAHxZ9NFhx5ttPFB81xaBtZ4kedGf98X5sDo3-WK9q456RgwkmIxN27MwKuZQXh2G6phGcUnpgaOGn28/s1600/lilly+tube.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="242" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3kHOm15oy1qhfGTlWmiScvTZP1UeGsNt_HW-FFPafiM5u3-iqSVRvxqMQoTWtAHxZ9NFhx5ttPFB81xaBtZ4kedGf98X5sDo3-WK9q456RgwkmIxN27MwKuZQXh2G6phGcUnpgaOGn28/s320/lilly+tube.jpg" width="320" /></a></div>This is like the picture they drew us. The circle is Lilly's stomach and the curved line is her skin. They will disconnect the tube from the stomach and the skin and then put stitches in each. They are more worried about the stitches going on her stomach because if the stitches do not hold, it can be very bad. We will be first case on April 13th and will remain in Marshfield for at least three days. <br />
I am confident that this is what we need to do to ease the pain and restless nights. I will let you know how everything goes and please think of Lilly on the 13th!Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com0tag:blogger.com,1999:blog-1950904074222228409.post-68469861694343448012011-03-29T15:50:00.000-05:002011-03-29T15:50:14.342-05:00Birthday Pics!<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Let me thank all of the family and friends who came to our house. It was definitely crazy but a lot of fun too! Lilly and Dylan both walked away having a great time with friends and family and a wonderful night sleep! Paul set up the Barbecue in the garage and we grilled (even though it was 20 degrees outside), while the inside of the garage still smells like grill two weeks later.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhusqHzlfImpydJboua-TFuzYb3gy2fdDRPMdPLQ1FMy-RLjihacdb6ORO0ejevn5FTN31hoS1d5g-kPkM_IjyGz9MZuNzLwQHiZHdr39Z_NTW5mTwc9f-DDegawcVWSO5g5X3yR5QD9qc/s1600/101_1383.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhusqHzlfImpydJboua-TFuzYb3gy2fdDRPMdPLQ1FMy-RLjihacdb6ORO0ejevn5FTN31hoS1d5g-kPkM_IjyGz9MZuNzLwQHiZHdr39Z_NTW5mTwc9f-DDegawcVWSO5g5X3yR5QD9qc/s320/101_1383.JPG" width="320" /></a>It is amazing to look back on all of the wonderful things happened this year. Dylan is now able to be outside and I don't need to worry to much about him, besides getting his bike stuck in the mud. He actually helps out around the house and fixes whatever needs to be fixed with Paul. We finally got our letter and Dylan will be starting 4K in Bloomer this fall. Paul and I got him a Leapster 2 for his birthday and I can already tell the difference! He can now write his name, recognizes some numbers and letters and can add. He is ready and excited!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigIFggnDtTuwzOYOiTikiLUYeyzAD5QAGb9VDOch4eo5dVPGBCWHr5MLWGXSX6qo5td7bmW5Qxd1djw4Rz8inQtJ-YFdbY614yTbKVhqiNtKtenWMdgbZZE-sbAx4inv287y33JAKl8SU/s1600/101_1375.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigIFggnDtTuwzOYOiTikiLUYeyzAD5QAGb9VDOch4eo5dVPGBCWHr5MLWGXSX6qo5td7bmW5Qxd1djw4Rz8inQtJ-YFdbY614yTbKVhqiNtKtenWMdgbZZE-sbAx4inv287y33JAKl8SU/s320/101_1375.JPG" width="320" /></a>On April 1st 2009 Lillyann went in for her first open heart surgery. We spent that day huddled around playing cards in the waiting room.....waiting to hear about our little girl. Now two years later I can look back and not cry about the struggles she has faced, but the triumphs she as overcome and excelled in. Mostly she has beat every 24 month test they can throw at her. Even her speech is at a 30 month level (putting two or more words together) and her signs have reached at least 40. Thank you Signing Time! </div><div class="separator" style="clear: both; text-align: center;">I promised to put some pictures up, sorry it has taken so long! We go in to have a consult with the GI surgeon tomorrow in Marshfield. I am a little nervous but we will keep an open mind! </div><div class="separator" style="clear: both; text-align: center;"><br />
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</div>Naomi and Paulhttp://www.blogger.com/profile/04645415716988963192noreply@blogger.com1