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Post by petee on Apr 22, 2012 21:47:04 GMT -8
Anna and I had another full day at Doernbecher's, Mom and Dad and Anna's mom Ann came up to eat dinner with us and visit with little miss Hattie. Our girl looks very plump they are keeping her fluid levels very high to help with her blood/oxygen saturation . The good news for the day was she is draining a lot of fluid out on her own and the Doctors are very happy with that. She had a few more ruff spots last night which caused the nurses to raise her o2 levels back to where they were yesterday, however by the end of today they had lowered them back down a bit. One of the doctors had warned us that this is often the case. Kinda the two steps forward one step back kind of thing. All in all today had small improvement but improvement non the less. We spoke to the Doctor for tonight's shift right before we left and they had decided to just leave everything alone tonight. Let her be stable and see how she reacts to some adjustment in the morning. Of coarse we want to ween her off everything as soon as possible so we can bring her home but it is going to be a long process. We have been warned that Doernbechers NICU will be our little girls home for several weeks or longer. We believe the staff is doing all they can for our little angel and have only her best interests in mind. Again thanks to everyone's kind words and we feel your thoughts and prayers.
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Post by petee on Apr 24, 2012 21:51:08 GMT -8
Yesterday was an interesting day, Anna had a chance to give Little Miss Hattie a sponge bath, I got a little jealous but all was forgotten when I was instructed to chance my first diaper…..ever. Now I must toot my own horn here cause I don’t think people understand how difficult of a feet it is to be 28ish, have 15 nieces and nephews and maintained this record with the statement “I did not make it therefore I will not change it” and theory and it worked. I was a Diaper virgin until yesterday. Back to the bath not only was it about time someone scrubbed that kid down but the docs had also decided to drain her abdomen again because the fluid they had drained a few days ago had returned. 396cc’s of fluid to be exact and it went everywhere. So a good bath was needed. Until now we had not felt it appropriate to make known a possible diagnosis for Hattie. But now that we have received a Cytogenetics Preliminary Report we feel it is a good time to share what we know. Hattie has tested positive for two normal copies of chromosome 21 for a total of three within each cell which is consistent with a diagnosis for Down syndrome. We don’t really know what to expect from this diagnosis as we were unaware of this possible condition before her birth. AWESOME day today!! Anna and I had so much running around this morning that felt like we would never make it to our little Miss Hattie. We ate in the Yukon on the way and almost flew through OHSU to the elevators. Pushed the ^ button and waited for what seemed like 12 minutes. We finally made it to her side, all the nurses were smiling and it almost seemed as though they were holding back saying something to use, the anticipation was killing them. We were so excited to see her we didn’t even notice the elephant that had left the room since the night before. Earlier this morning the staff of Doctors decided they were going to see how Hattie responded to being removed from the Hi Intensity / Osculating Ventilator that she was moved to Doernbecher for and place her on a traditional ventilator. She responded very well, they think now that the HI-FI has had an opportunity to work it magic that she needed a rest for the “intensity” of that machine. We are so pleased this is a big step in her healing. Obviously she is not better but its one step closer to weaning her further off the O2 and the Nitric Oxide. They were able to lower her O2 again today so we are praying that she has a nice calm, quite night to rest, relax and heal more. And we look forward to see her progress tomorrow. Thank you for your prayers and we’ll update you more soon.
Love Paul, Anna and Little Miss Hattie.
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Post by bchutchens on Apr 25, 2012 14:27:55 GMT -8
Glad to hear about what is going on, please keep us posted. I know everyone is saying it but if you need anything just ask. Our prayers and thoughts are with you guys!
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Post by petee on Apr 27, 2012 20:51:58 GMT -8
Wednesday and Thursday flew by in such a blur they almost run together. Anna pumping is staying very steady and I am very proud of her for staying so consistent. We were extremely excited Wednesday that we were just in time to see the nurse start feeding little Miss Hattie small amounts of Anna’s breast milk. At first her little stomach wasn’t quite sure what to make of it. Her eyes opened, her back arched and her arms started to wave as if to say WOW that some good stuff mom, Thank you! Very cute! She did not accept all of it right away, but after each feeding she was giving less of it back. They continued to wean more of the NO and O2.
Then on Thursday the magicians at Doernbecher really started working. They lowered her NO at just the right time and watched. Then a little lower on the Oxygen and watched. Up a touch on the sedatives and watched. A little lower on the NO by mid day they had her completely off the Nitric Oxide and showing great vitals. This was another very big step for our little girl and one step closer to coming home. While Hattie was visiting South West Washington Med center the staff had inserted two IV lines into her umbilical cord arteries. These made for a very stable and large locations to infuse all of her medication and nutrition. However these are only safe for 7 – 10 days and we were on day 9 I believe. So the call was made to find more suitable long term (30 day) IV locations. They call these PIC lines. This procedure was fairly quick and simple they gave Hattie a bump of Morphine to keep her calm and still. By the time we return to her Friday the Umbilical cord line should be out and everything switched over. Little Hattie is peeing great which is good cause she has a lot of fluid to give and I never thought I would type this in my life but we had a very exciting diaper yesterday Anna and I were walking back to Hattie’s side as one of the nurses saw us she lifted a soiled diaper and with a big smile opened it and said “we have poop!” what a relief they had been feeding our little girl but nothing was coming out. They warned us it can take a while with all the narcotics she’s on they have a tendency to slow the system down a lot. Then we had another one a few hours later and Anna got to change it, Fun. I guess. Little Hattie is still very sick but making progress, the staff are all just as in love with her as we are and many of them stop by and say “I hope I get her again tomorrow.” Keep praying, thanks for the thoughts we’ll share more soon.
no Friday update yet. Gonna hangout with my wife
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Post by racincowboy on Apr 28, 2012 6:01:29 GMT -8
Glad to hear Little Hattie is making progress. Keep the updates coming. I know all of us read them and like to know she is getting better so she can get home to Mom and Dad where she belongs.
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Post by petee on Apr 29, 2012 20:56:28 GMT -8
Oh so much to tell the last three days have been so full of twists and turns mostly good but a lot has happened I will try to keep it all straight. Friday was a big day, Little Miss Hattie is a good eater the nurses have slowly been increasing the volume of breast milk they are giving her and she loves it. They worked very hard to lower her O2 level as fast as she will tolerate the change and she’s doing well. So well in fact that one of the nurses suggested that Anna might get to hold her later in the day if her vitals stayed as solid as they had been showing. A few hours later after a good meal Pam pulled a rocking chair over to Hattie’s bedside with a big grin and asked if Anna was ready to hold her baby. What a silly question to ask a new mother. So she called over a few other nurses and the respiratory specialist and they went to work. It took quite a few hands but they got Hattie in Anna’s lap and there she stayed for almost an hour. Pretty big deal and we were pretty emotional our little family of three in our own little world for a while. Friday was a good day I think the physical connection is a big part that we have had to wait for. Saturday was another big one. The nurses kept working their magic checking Hattie’s blood gas which tells them what is going on in her blood PH, O2, acid levels and helps them adjust the amounts of meds and O2 they are giving her. Anna had another opportunity to hold our little girl which of course she jumped on. Hattie continued to respond well to the breast milk and they were able to give her larger amounts. Earlier in the week there was some concern of an infection in her little left foot where an IV had been placed early on so they started her on antibiotic just in case. A blood sample was sent down to the lab to see if anything would grow, so far no news is good news. But she’s on it none the less. It has been thrilling to see my little girl more and more awake as the nurses are continuing to wean her off the Morphine and the Pentabarb (a sedative) these have been necessary to keep her still and calm while her treatments were doing their jobs. We have decided Hattie hates tubes, IV lines, catheters, sensors and med lines. We came to Hattie’s bed side and Stacy, Hattie’s night nurse had taken a picture of my little girl with a firm, full fisted grip on the ventilator tube right in front of her mouth. A few seconds away from pulling as hard as she could muster. The caption on the picture that was glued to a piece of stock paper said “Someone take this tube out of my mouth, or I will do it for you !!!! ~Hattie” So we were very happy that she got to lose another IV line from her hand and if her feedings go well more will go soon. Sunday Anna spent about another hour and a half holding our little girl. She was so awake and vibrant. Over night the nurses had weaned her from 0.05 ml per kilo per hour of Morphine to 0.04 to 0.03 to 0.02 !!!!!! So cool. They also did not need to give her any Pentabarb through out the day, also awesome. Her O2 levels from the ventilator were around 40 when we got there and went down to about 35 when we left. These kinds of huge steps all in one day are unbelievable. The other big one is something I have not talked about much its called PEEP. The short version is as we exhale air from our lungs a certain amount of pressure remains. In adults this pressure is 4, Hattie’s ventilator has been keeping her at around 16 well not today, today she was at 5 now they must have been playing with this over the last few days but we didn’t know or care but the point is she’s really close to getting her vent tube taken out. AWESOME, which means we can hold her more. Also she has been accepting milk like a rock star she is up top 45ML (1.5 ounces) every three hours and the closer she gets to 2 OZ the closer they get to stopping her other food supplements. The nurses said probably within the next day couple of days they hope to have her off the vent, off the Morphine and off the fake food. That would mean no more lines and tubes for Little Miss Hattie. They have again warned us that even after most of the support is gone Hattie is still going to need care at Doernbecher and they still can’t give us a day when we can bring her home, but we are staying patient. And here's some picture for you
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Post by petee on May 9, 2012 23:29:51 GMT -8
Hi it’s been a while, I went back to work and the schedule has gotten busier. Hattie is doing well the RN’s have been working very hard to wean our little girl from her O2 and so far she is responding well. I’m pretty sure that she is done or almost done with her antibiotics, they still have her on steroids to help her lungs heal, and they added some med to help her liver function. Hattie is a little Jaundice and they think these meds will give her liver the boost it needs. Let’s see what else oh she’s feeding from a bottle some. We have continued to work with her on feeding from the breast and know she will get it sooner or later. I got her to eat 60ml today (out of 80ml per feeding) from a bottle which is the most of anyone that has tried. Thanks for your prayers and thoughts I’ll write more later.
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Wyldman
Active Member
Safety & Education Chairman
IXOYE
Posts: 643
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Post by Wyldman on May 10, 2012 14:39:06 GMT -8
Thanks for the update. We certainly are thinking about you guys and missed you at the meeting. I'm glad to see things are improving. I've been praying a lot for you and your family and will continue to do so.
Douglas
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Post by bigstuck on May 10, 2012 17:48:25 GMT -8
Such a proud daddy!
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emjay
Active Member
Posts: 85
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Post by emjay on May 11, 2012 20:22:44 GMT -8
Hattie is absolutely beautiful. Keep us posted as I know everyone is concerned about your family.
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Post by bchutchens on May 12, 2012 14:12:15 GMT -8
Very cute picture of you two! Hope things are getting better. Bill And Cheri
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Post by petee on May 17, 2012 20:08:06 GMT -8
Update. Wednesday mid-day I headed to Dornbecher alone as Anna needed to handle a few things while I spent some time with Hattie before I went to work. As I talked with one of the nurses she mentioned Hattie heading home within a day or so. I asked her if she could verify her suspicions with one of the attending physicians. Hattie and I played with her mobile that hung above her head from the side of the crib and waited. As Ann (the attending doc for the day) turned the corner into our daughters pod I could tell that she was trying to hold back her grin. Ann is pregnant with twins and has been one of the many staff members that have lovingly walked us down that long tough road at Dornbechers. It was almost bitter sweet as she shared with me that even though she did not want to see our little Miss Hattie go, she was confident that as of Thursday Hattie would have served her time and would be free to go. I was unsure whether to thank her hug her or offer my sympathy for having to take our little angel away from her. We debated who would get to tell Anna, would I tell her on the phone or was it better to wait for an in person conversation with Ann….I won and called her immediately. They had prescribed one last med to help Hattie with blood flow to her lungs and only needed to give her three full doses and have favorable blood pressure readings in order to be released. I headed to work and Anna headed to Hattie. We reconvened at home after work about 2am and talked about all the things we felt we needed to do before her arrival. Little sleep was had by either of us last night. We got up early, ran a few errands and headed in. We meet with Nancy who walked us through the O2 equipment and what to do and when. We will meet with a cardiologist every few weeks to review her O2 levels and check her lung function until they are strong enough to take her off the last medication and the O2. A caravan of Doctors, nurses, students, staff and maybe a few random strangers that had met and been touched by our little girl made their way through to say their good byes and beg us to bring her back for visits soon. We broke all of their hearts and told them we would never step into this place again. Not really we love the staff very much for caring for our Hattie. Pam one of our favorite nurses must have pulled some strings and got assigned to Hattie even though she was not scheduled to be with her for the day. It was a treat for us to go through all the paperwork and discharge procedures with someone we truly enjoyed. I don’t feel like I can say enough good things about the staff at Dornbechers they were so wonderful to be around and knew how to make us feel safe leaving our baby in their care. If you ever get the chance to meet someone who works in Neonatal thank them for what they do everyday. Back to Hattie, she loves car rides, not so much the speed bumps we’ll work on that, her bassinette, Athena, her mom and trees. I believe God has a sense of humor, Hattie is 1 month old today and her mother and I got the best 1 month old baby birthday present on the planet and brought her home. We can’t thank those of you enough who sent your love, prayers, thoughts, and kind words our way. It made all the difference. Thank you. We will probably lock the door, turn off our phones and drop off the grid for a while and hang out with our little one for a bit.
Paul, Anna and Little Miss Hattie
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Wyldman
Active Member
Safety & Education Chairman
IXOYE
Posts: 643
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Post by Wyldman on May 17, 2012 20:46:10 GMT -8
I'm so happy for you. You guys are going to be great parents. In the eyes of God she is a precious gift in trusted to you. What a huge responsibility. Cherish every moment because you can never relive yesterday. Take the time to read Proverbs 22;6. I will still continue to pray for you guys.
In His Love, Douglas
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Post by bigstuck on May 17, 2012 21:17:35 GMT -8
Awesome news!! I got a text from anna with the cutest little baby taking her first car ride home. It made me so happy to see my two good friends get to take the greatest gift ever home today. Im sure you guys will do great and with so much love in the house she will blossom. Im sure the animals loved to meet her too but somehow on that list I see Toby missing........ Not his turn yet? HAHA!!
Congrats guys!
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Post by petee on May 18, 2012 9:42:01 GMT -8
Thanks guys. Toby.............ya.. well Toby like to "play ruff" with small things. So? ?? maybe later. I have some pix but am to lazy to post they yet.
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