Monday, July 16, 2012
Tuesday, July 10, 2012
Chest tubes
I'm sort of stressed tonight but not too bad-this is nothing I haven't done before. When I saw Whit today based on how she was doing I had a sneaky suspicion she might need her right chest tube replaced (based on her own history/patterns and how the tube was slipping a little and the tube output was less, her retracting slightly, etc..) and sure enough when I called tonight she's up on her oxygen needs back to 4 liters and between 30-40% and breathing faster/retracting which means her tube is coming out-luckily they finally caught on and ordered an x ray. So they'll probably replace it tonight. ): either way they'll let me know. I swear I will make an excellent NICU nurse...but that can wait until my babies are older. For now, I will just say I have pretty jut Mother's intuition!
Sky-bee
I posted about Gavin the other day and today I've been thinking lots about my sweet little Sky. She is such a joy to have in our family. She's soo smart, chatty, independent, and kind. I love talking to her and spending time with her. I love watching her interact with her brother (when they get along!) and her Dad-they can have soo much fun when they play.
Lately I've been worried about her with all that's going on. Gavin is young enough that he has adjusted to Whitney pretty well in addition to me being gone a lot. Sky has struggled more the past 7 weeks. Gavin naps three hours a day and before Whit came, those three hours were usually time I had to spend with her one-on-one. Since Whitney came, I am usually gone at the hospital during nap time so my individual time with Sky has decreased. We have had to bounce the kids around to soo many different family and friends to watch them while we're at the hospital.
Sky has really struggled with her attitude and emotions-way more so than usual since her baby sister arrived and shook our world. There are times when I'm out of patience with her, and times when I have an overabundance of patience because I understand how stressful this all must be for her. I always feel guilty-when I'm at the hospital and away from the kids, or when I'm home and not with Whitney. I struggle constantly to deal with all the different emotions that our situation is causing me to feel. I can't imagine how my sweet daughter must be feeling and she can't express all her emotions quite like I can. I breaks my heart when I see her struggle. I pray that she will be okay through all of this and we will be able to have the necessary patience and to help her learn to express her emotions. For now, we'll take it day by day-the good and the bad!
Here are some recent photos of my adorable little sweetheart!
Lately I've been worried about her with all that's going on. Gavin is young enough that he has adjusted to Whitney pretty well in addition to me being gone a lot. Sky has struggled more the past 7 weeks. Gavin naps three hours a day and before Whit came, those three hours were usually time I had to spend with her one-on-one. Since Whitney came, I am usually gone at the hospital during nap time so my individual time with Sky has decreased. We have had to bounce the kids around to soo many different family and friends to watch them while we're at the hospital.
Sky has really struggled with her attitude and emotions-way more so than usual since her baby sister arrived and shook our world. There are times when I'm out of patience with her, and times when I have an overabundance of patience because I understand how stressful this all must be for her. I always feel guilty-when I'm at the hospital and away from the kids, or when I'm home and not with Whitney. I struggle constantly to deal with all the different emotions that our situation is causing me to feel. I can't imagine how my sweet daughter must be feeling and she can't express all her emotions quite like I can. I breaks my heart when I see her struggle. I pray that she will be okay through all of this and we will be able to have the necessary patience and to help her learn to express her emotions. For now, we'll take it day by day-the good and the bad!
Here are some recent photos of my adorable little sweetheart!
Breathing better
Whitney is breathing much better! They took her intubation out yesterday so now all she has is the tiny feeding tube down her throat. Once the intubation came out they put her on a bubble cpap machine at 5 liters. After a day on that and doing really well, try moved her from the cpap to a high flow nasal cannula at 4 liters (today at 12:30). She's done soo well the last few hours that they are moving her down to three liters right now!
We are very glad she is breathing so well in spite of the chest fluid-it still hasn't slowed down a lot, but it has slowed a little. We are giving it two weeks to see if the fluid will slow down and hopefully dry up. Since feedings (even fat free feedings) can aggravate and increase the chest fluid, they stopped feeding her for a week or two again until we know for sure the procedure worked and that the fluid is going away. Let's all keep our fingers crossed that the fluid will dry up! As for now, here is a picture that makes me smile!
We are very glad she is breathing so well in spite of the chest fluid-it still hasn't slowed down a lot, but it has slowed a little. We are giving it two weeks to see if the fluid will slow down and hopefully dry up. Since feedings (even fat free feedings) can aggravate and increase the chest fluid, they stopped feeding her for a week or two again until we know for sure the procedure worked and that the fluid is going away. Let's all keep our fingers crossed that the fluid will dry up! As for now, here is a picture that makes me smile!
Sunday, July 8, 2012
Poor Gavin!
Gavin had a cold a couple weeks ago and has gotten better, but last week I saw him tug at his ear a couple times. We tried to use our otoscope to take a look, but he had WAY too much wax in his ear to see anything. We even cleaned his ear with hydrogen peroxide and water (supposed to clean out the wax) and still couldn't see anything. This morning we woke up and as I was getting ready or church, Gavin was tugging and sort of cupping his ears non-stop. Luckily there is a Wee Care Pediatrics in Layton open all the time so Kyle took him in before church and met us there once he got done. The doc put a liquid stool softener in Gavin's ear and that seemed to break up the wax and sure enough he has a double ear infection. Poor baby! No wonder he has been crankier! We got him an antibiotic that will hopefully clear it up. It hard to believe this is his first ear infection and he is almost 26 months! He is such a sweet, funny, smart little boy and we are soo blessed to have him in our family! Here are a couple cute pics of my sweet baby boy: PS (pardon the nude photo-it was too funny not to post-We'r had to start putting onesies on him to avoid h undressing at night!)
Success!
Success!! Dr. Arnold was able to find the thoracic duct and embolize it ( close it off with glue!) He found that there was an obstruction at the top of the thoracic duct that was causing all the lymphatic fluid leakage. We're not completely out of the woods yet, but this is AMAZING news! Heavenly Father has definitely answered all of our prayers! We'll watch her chest tube output and it should decrease by half within the next few days and hopefully her intubation and chest tubes can come out soon-within a couple weeks! He did this same procedure in march and the chest tubes were out within two weeks, so this is the best outcome we could have expected! This is only the second time he has ever done this procedure, and he has only ever seen the condition three times (and he is an expert). We are soo thankful for modern technology, Dr. Arnold and Heavenly Father for saving our daughter!
Tuesday, July 3, 2012
A little scare
We had a little, well a major scare with Baby Whitney yesterday. Here is my note about it that I wrote: I have been at the hospital all day and we just left. Things went well at first and I was able to hold her, but her intubation malfunctioned and her o2 saturations dropped into the 40's while I was holding her. She went blue, then purple and then while they were trying to bag her she passed out and went limp on me. I was bawling this whole time obviously-it was
way traumatizing because I thought she was dying...well, she would have died if it weren't for my amazing nurse and respiratory therapist who responded so quickly. That really shook me up. They don't even know what caused it-I did nothing different and had already been holding her for an hour. Gosh-it was so unbelievably scary. Once she was back to normal, I held her for two hours and she was fine.
At this point we're okay waiting until Friday for the lymphangiogram at this point because it will either be good news or REALLY bad news and I don't know if we're ready to hear the bad news...
way traumatizing because I thought she was dying...well, she would have died if it weren't for my amazing nurse and respiratory therapist who responded so quickly. That really shook me up. They don't even know what caused it-I did nothing different and had already been holding her for an hour. Gosh-it was so unbelievably scary. Once she was back to normal, I held her for two hours and she was fine.
At this point we're okay waiting until Friday for the lymphangiogram at this point because it will either be good news or REALLY bad news and I don't know if we're ready to hear the bad news...
Patience
Okay people...here is the deal. The scan (which I found out is called a lymphangiogram) will take place on Friday at noon. We are frustrated that once again we have to wait for five days, but apparently the Lord is trying to teach us patience. At least we have a set time. We got the kiddos back from Paula and David tonight so we can enjoy the fourth tomorrow with the them. I was soo excited to see the kids again that I put up streamers and got them balloons-to celebrate their arrival and the holiday! We are spending the Fourth with my sisters Esther and Sarah in West Point like last year-they have bouncy houses, climbing walls, lots of other activities and a playground-the kids will love it!
Saturday, June 30, 2012
A much better impression
I'm sitting here by little miss Whitney's bedside and I'm feeling much better about everything. Let me explain. We have been in the NICU at the U for the last 5 1/2 weeks. It has been out second home; it was familiar, I had all
Our primary care nurses taking care of Whit that we loved, I felt comfortable and knew everyone-we had great support (the March of Dimes parent support Tauna, Whitty's social worker Jeanette, and all the medical staff).
Coming here last night for the first time was unnerving to me-I didn't know where to go and the whole routine was different (even scrubbing in!) then when I came in to see Whitney, I felt so out of place! This was NOT Whitney's room. To add insult to injury, the nursing staff last night was NOT friendly. It was as if I don't exist-not the usual friendly, light conversation I was use to with the sweet nurses at the U. Whitney's hair was gunky from her head ultrasound and her mouth was dry and crusty. Her old nurses knew that I like her with clean, cute hair and that her mouth needs washed and occasionally wetted (the intubation makes her mouth soo dry!) but none of this was done and I felt uneasy to do it myself not knowing where anything was.
To my surprise, I thought, "I hate it here. I miss the U." I even texted Kyle that and told him why. He told me to be proactive like I usually am and to ask if I needed something. I did, but Whit's nurse last night did not have a fabulous attitude. She didn't even know a lot of the answers to what I was asking her! I wasn't a huge fan, and I tend to give them the benefit of the doubt because my hubby is a nurse. Needless to say I asked that she not be my baby's nurse again.
I stayed until 11 pm last night and almost cried on my way home. O how I missed the U!! I was anxious to come see her today but I called to check on her first thing this morning and spoke to her nurse Gail. She was soo friendly and kind and answered all my questions. I was already relieved once I got off the phone. I got here a couple hours ago and all the day staff here has been so professional and friendly and Whitney's nurse Gail is SOOOO great! She has taken excellent care of Whit, but in addition she has answered all my questions, given me my notebook with all the info I need to orient me and she has been so kind and friendly as well! She is already our very first primary care nurse here at PCMC. I'm getting more and more used to our new environment and I think we are actually going to love it here
I spoke with Dr Yoder today (he is the head of neonatology-we love him! He has been off Whit's case the last few weeks and Dr. Beachy has been on.) I updated him on our surgical options and we spoke a little more about the radiological and surgical options for Whitney. We're thinking the scan will be Monday, but Tuesday at the latest. I'm feeling soo much better and more comfortable here today. I think I just needed time to adjust to our new setting.
P.S. the head ultrasound showed a slight cist/possible grade 1 brain bleed but it is resolving and they said it is nothing to worry about. Her chest ct showed nothing out of the ordinary.
Our primary care nurses taking care of Whit that we loved, I felt comfortable and knew everyone-we had great support (the March of Dimes parent support Tauna, Whitty's social worker Jeanette, and all the medical staff).
Coming here last night for the first time was unnerving to me-I didn't know where to go and the whole routine was different (even scrubbing in!) then when I came in to see Whitney, I felt so out of place! This was NOT Whitney's room. To add insult to injury, the nursing staff last night was NOT friendly. It was as if I don't exist-not the usual friendly, light conversation I was use to with the sweet nurses at the U. Whitney's hair was gunky from her head ultrasound and her mouth was dry and crusty. Her old nurses knew that I like her with clean, cute hair and that her mouth needs washed and occasionally wetted (the intubation makes her mouth soo dry!) but none of this was done and I felt uneasy to do it myself not knowing where anything was.
To my surprise, I thought, "I hate it here. I miss the U." I even texted Kyle that and told him why. He told me to be proactive like I usually am and to ask if I needed something. I did, but Whit's nurse last night did not have a fabulous attitude. She didn't even know a lot of the answers to what I was asking her! I wasn't a huge fan, and I tend to give them the benefit of the doubt because my hubby is a nurse. Needless to say I asked that she not be my baby's nurse again.
I stayed until 11 pm last night and almost cried on my way home. O how I missed the U!! I was anxious to come see her today but I called to check on her first thing this morning and spoke to her nurse Gail. She was soo friendly and kind and answered all my questions. I was already relieved once I got off the phone. I got here a couple hours ago and all the day staff here has been so professional and friendly and Whitney's nurse Gail is SOOOO great! She has taken excellent care of Whit, but in addition she has answered all my questions, given me my notebook with all the info I need to orient me and she has been so kind and friendly as well! She is already our very first primary care nurse here at PCMC. I'm getting more and more used to our new environment and I think we are actually going to love it here
I spoke with Dr Yoder today (he is the head of neonatology-we love him! He has been off Whit's case the last few weeks and Dr. Beachy has been on.) I updated him on our surgical options and we spoke a little more about the radiological and surgical options for Whitney. We're thinking the scan will be Monday, but Tuesday at the latest. I'm feeling soo much better and more comfortable here today. I think I just needed time to adjust to our new setting.
P.S. the head ultrasound showed a slight cist/possible grade 1 brain bleed but it is resolving and they said it is nothing to worry about. Her chest ct showed nothing out of the ordinary.
Friday, June 29, 2012
Feeding
Kyle is on his way home so I can go see her once he gets here. He just gave me more good news. Whitney's new neonatologist (Dr. digeronomo-funny name huh?!) wants to start feeding Whitney again! It's been 3 1/2 straight weeks of just iv nutrition so she will be one happy camper! I can finally start using all that breast milk I've been freezing! They will spin all the fat out of it because that's the first treatment of chylothorax-a fat free diet. But still-all my hard will will finally pay off! Soo excited to see my baby soon! P.S. My friend Ashlee brought over gifts for the kids yesterday and in Sky's gift there was a go fish princess game. Yeah she loves it! We've played it a million times already!
Great news!
We finally it news today that the interventional radiologist has agreed to to the lipid due scan at the beginning of this next week! I'm soo relieved we didn't have to wait until Monday to hear one way or another. Kyle is at the hospital with Baby Whit right now and they are in the process of transferring Whitney to Primary's for the rest of her stay. It sure is quite the process just to move her down the hall! She will get a ct scan around 1:30 so they can get more information and see more of her anatomy before her scan next week. As you can see from the picture, she is swollen everywhere and the edema has even spread to her stomach which looks scary! It is from all the fluid they are giving her-she is just retaining more fluid than she should. We'll keep you posted with more updates as we get more info. We have been soo pleased and are so grateful to all the staff on the NICU at the UofU hospital for the amazing care she has received.
Getting ready for her big move
All ready to go-this is quite the process
She is retaining a lot of the fluids they are giving her
My sweet baby and her puffy little face
Baby Whitney update from Wednesday, June 27th
**I'll add a little disclaimer here since many of you don't even know what happened when she was born on May 21st. I went in for an additional ultrasound at 32 weeks (May 14th) expecting everything to be normal and instead they found that Whitney had a lot of fluid in the pleural space surrounding her right lung called pleural effusion. This condition can be very serious in utero, so they gave me another ultrasound a few days later on Thursday. At that point, they thought her condition was sever enough that they admitted me to have an emergency c-section and gave me a steroid shot since she was soo early. Kyle gave me a blessing and 30 mins before the c-section the surgeon took another ultrasound and decided she was stable enough to let the steroids kick in and they didn't deliver me that day. We had another ultrasound Friday and one again Monday, May 21st-this time they decided she was getting really sick (bad edema/swelling everywhere, fluid around both lungs and her liver, etc...) so they sent me to the UofU Hospital and they performed an emergency c-section. They ran a million tests on me and Whitney to determine the cause of the pleural effusions and finally when she was 9 days old they discovered she had a congenital chylothorax, which is a problem with the lymphatic system that causes the thoracic duct to leak lymphatic fluid into the pleural space surrounding the lungs. All of our non-surgical treatments have failed over the course of the last 5 weeks and the email below will explain where we are at now. Sorry it is soo lengthy and detailed, but this is sort of how I am keeping track of my thoughts as well until I have the energy to actually journal everything! We are holding a fast for Whitney on Sunday, so if any of you want to add us to your prayers this fast Sunday, we would greatly appreciate it! We appreciate all your kindness and support!
Hello everyone!
Sorry for the lack of updates this past couple weeks. It has been a really rough past couple of weeks with our sweet Whitney. She is 5 1/2 weeks old now-hard to believe! We spoke with the surgeons yesterday and they gave us a couple options. Our first option is through interventional radiology-they will do a radiology scan (like a live x ray) with a lipid based dye into Whitney's lymph node to see where the dye goes and if they can spot the leakage(s) or problems with the thoracic duct. If the thoracic duct seems like an easy repair, the radiologists might be able to insert some chemical substance that would clot off the thoracic duct and hopefully resolve all the leakages. The problem is that since Whitney has a PFO in her heart, there is a small chance that the lipid dye could travel to her brain and cause a stroke, so the Radiologist is very hesitant to do the scan and keeps 'consulting' his colleagues and mentor to try to decide whether or not he will do it at all. He will decide and let us know on Monday his decision and if the answer is yes, he will do it next week. Depending on what the ct shows, and if the radiology intervention (with the chemical) is not an option, there are two surgical options. But first, he will have to do a surgery to biopsy a piece of the lung. They can't get the biopsy with a bronchoscope, so they have to go in from the outside, which is more invasive. The biopsy is so they can test Whitney for a disease called pulmonary lymphangectasia, which is a fatal disease and there are no treatments for. If she has lymphangectasia, there is nothing else we can do. If it is not lymphangectasia, and depending on what the scan shows, the surgeon will either do a thoracic duct ligation or a chemical pleurodesis. Both of these surgical options are risky and have major potential side effects. These surgeries are definitely not ideal, but they are the options available to us right now. We're frustrated that we have to wait until Monday to know whether or not we can even do the ct, but we are trying to be patient. Basically, if she has lymphangectasia she will not survive. If we don't do surgery she will die since none of the other treatments have worked for her condition (congenital chylothorax), the surgeons have said that the surgical options are risky and she may not even survive surgery, and there is a good chance surgery may not be successful in which case there is nothing else they can do for her. This means that there is a chance she will live, but there is also a good chance she may not survive. This is such heartbraking news for us since we have been soo hopeful from day one that she would live-we just thought she might be in the NICU for a long time. We are still trying to be hopeful (even though we feel hopeless) but we are just trying to rely on the Lord and see things from an eternal perspective. We know that no matter what happens, sweet Whitney came to our family for a reason and there is obviously a lot we are to learn from this experience. For the time being, apparently Heavenly Father needs to teach us (mostly me!) patience and long-suffering.
My sweet sister Angie has just been here taking care of our babies for three days so we could spend lots of time with Whitney. She just left and Kyle doesn't work again until Saturday so we will take some time to spend with the kids since we haven't seen them much since Saturday and we will take turns being at the hospital.
My dear friend, Tiffany Jack, met us at the hospital on Sunday morning and took some beautiful photos for us. She was literally an answer to my prayers a few weeks back. I was really struggling a few weeks ago and I thought to myself that it might be a good idea to get a photographer to come take some photos of us at the hospital. Then I put that thought on the back burner because I didn't want to add one more thing 'to do' or to worry about to my plate, so I figured we wouldn't be able to do that right away because I didn't want to stress about it. That very same day, I received a message on facebook and it was my friend asking if we might want her to come to the hospital to take photos. I couldn't believe the timing since I had just been thinking about it a couple hours earlier. It actually made me cry because I knew how great a photographer Tiffany is and I was soo grateful that she received that inspiration and desire to help us out. Well, I messaged her back and said we would love to, but maybe next week when Whitney was more stable and we could hold her, etc...Well, the next week came and Whitty was worse, so it didn't happen. Last Friday evening, we were told by the docs to realistically prepare for the fact that Whit might not make it. After four weeks of really high hopes (expecting her to live-it was only a matter of time until we can bring her home) to being told she may not make it, we were DEVASTATED. I messaged Tiff that night and told her we would love her to take pics, and soon. We set it up for Sunday morning. It was hard and emotional (for us and Tiff!) but we were soo relieved we were able to take these photos. She did a beautiful job and was soo thorough and such a thoughtful, kind photographer. I would HIGHLY recommend her to anyone because she is truly talented. Anyway, she just posted some of our photos to her blog. Here is the link if you want to check them out: http://www.whenskiesaregreyblog.com/2012/06/baby-whitney.html
We are still hopeful for my sweet baby girl. How can you not be after seeing these beautiful photos of her? She is a beautiful baby who should NOT be sick! We are hoping for the best, but still preparing for the worst. The docs are still giving us some options and some hope but they really are trying to prepare us for the worst as well, which is not an easy thing for them or for us. It's such a hard, sad thing to think about-the thought of losing a child and I cannot comprehend the pain that parents must feel going through this. We are in soo much pain at just the thought of what may lay ahead. We have some fellow NICU friends with a little baby boy names Edward who came prematurely at 28 weeks (he was born 4 days after Whitney and currently only weighs barely 3 lbs). We talk to them about every other day and we each find out how our babies are doing. Well, I found out last night that they actually lost their first baby in addition to having their second child in the NICU. their first son was born with the cord around his neck and only lived four hours. After speaking with them, it seems like a miracle that any of us have healthy children, with all that could potentially go wrong.
Anyway, please continue to keep us and Whitney (and even Baby Edward and his sweet parents) in your prayers-we could definitely use them! Whitney is truly an angel and has already taught us soo much in her short 37 days of life. We have been taught, led and inspired through this whole process and are definitely feeling the comfort and love of our Heavenly Father more now than ever before. We are soo blessed and are soo lucky to have the friends, family and ward family that we do. Thank you all, and I will try to update more often as we know more. It was too hard with all that has happened in the last couple weeks, but I will try to be better!
Love you all!
Sam
Hello everyone!
Sorry for the lack of updates this past couple weeks. It has been a really rough past couple of weeks with our sweet Whitney. She is 5 1/2 weeks old now-hard to believe! We spoke with the surgeons yesterday and they gave us a couple options. Our first option is through interventional radiology-they will do a radiology scan (like a live x ray) with a lipid based dye into Whitney's lymph node to see where the dye goes and if they can spot the leakage(s) or problems with the thoracic duct. If the thoracic duct seems like an easy repair, the radiologists might be able to insert some chemical substance that would clot off the thoracic duct and hopefully resolve all the leakages. The problem is that since Whitney has a PFO in her heart, there is a small chance that the lipid dye could travel to her brain and cause a stroke, so the Radiologist is very hesitant to do the scan and keeps 'consulting' his colleagues and mentor to try to decide whether or not he will do it at all. He will decide and let us know on Monday his decision and if the answer is yes, he will do it next week. Depending on what the ct shows, and if the radiology intervention (with the chemical) is not an option, there are two surgical options. But first, he will have to do a surgery to biopsy a piece of the lung. They can't get the biopsy with a bronchoscope, so they have to go in from the outside, which is more invasive. The biopsy is so they can test Whitney for a disease called pulmonary lymphangectasia, which is a fatal disease and there are no treatments for. If she has lymphangectasia, there is nothing else we can do. If it is not lymphangectasia, and depending on what the scan shows, the surgeon will either do a thoracic duct ligation or a chemical pleurodesis. Both of these surgical options are risky and have major potential side effects. These surgeries are definitely not ideal, but they are the options available to us right now. We're frustrated that we have to wait until Monday to know whether or not we can even do the ct, but we are trying to be patient. Basically, if she has lymphangectasia she will not survive. If we don't do surgery she will die since none of the other treatments have worked for her condition (congenital chylothorax), the surgeons have said that the surgical options are risky and she may not even survive surgery, and there is a good chance surgery may not be successful in which case there is nothing else they can do for her. This means that there is a chance she will live, but there is also a good chance she may not survive. This is such heartbraking news for us since we have been soo hopeful from day one that she would live-we just thought she might be in the NICU for a long time. We are still trying to be hopeful (even though we feel hopeless) but we are just trying to rely on the Lord and see things from an eternal perspective. We know that no matter what happens, sweet Whitney came to our family for a reason and there is obviously a lot we are to learn from this experience. For the time being, apparently Heavenly Father needs to teach us (mostly me!) patience and long-suffering.
My sweet sister Angie has just been here taking care of our babies for three days so we could spend lots of time with Whitney. She just left and Kyle doesn't work again until Saturday so we will take some time to spend with the kids since we haven't seen them much since Saturday and we will take turns being at the hospital.
My dear friend, Tiffany Jack, met us at the hospital on Sunday morning and took some beautiful photos for us. She was literally an answer to my prayers a few weeks back. I was really struggling a few weeks ago and I thought to myself that it might be a good idea to get a photographer to come take some photos of us at the hospital. Then I put that thought on the back burner because I didn't want to add one more thing 'to do' or to worry about to my plate, so I figured we wouldn't be able to do that right away because I didn't want to stress about it. That very same day, I received a message on facebook and it was my friend asking if we might want her to come to the hospital to take photos. I couldn't believe the timing since I had just been thinking about it a couple hours earlier. It actually made me cry because I knew how great a photographer Tiffany is and I was soo grateful that she received that inspiration and desire to help us out. Well, I messaged her back and said we would love to, but maybe next week when Whitney was more stable and we could hold her, etc...Well, the next week came and Whitty was worse, so it didn't happen. Last Friday evening, we were told by the docs to realistically prepare for the fact that Whit might not make it. After four weeks of really high hopes (expecting her to live-it was only a matter of time until we can bring her home) to being told she may not make it, we were DEVASTATED. I messaged Tiff that night and told her we would love her to take pics, and soon. We set it up for Sunday morning. It was hard and emotional (for us and Tiff!) but we were soo relieved we were able to take these photos. She did a beautiful job and was soo thorough and such a thoughtful, kind photographer. I would HIGHLY recommend her to anyone because she is truly talented. Anyway, she just posted some of our photos to her blog. Here is the link if you want to check them out: http://www.whenskiesaregreyblog.com/2012/06/baby-whitney.html
We are still hopeful for my sweet baby girl. How can you not be after seeing these beautiful photos of her? She is a beautiful baby who should NOT be sick! We are hoping for the best, but still preparing for the worst. The docs are still giving us some options and some hope but they really are trying to prepare us for the worst as well, which is not an easy thing for them or for us. It's such a hard, sad thing to think about-the thought of losing a child and I cannot comprehend the pain that parents must feel going through this. We are in soo much pain at just the thought of what may lay ahead. We have some fellow NICU friends with a little baby boy names Edward who came prematurely at 28 weeks (he was born 4 days after Whitney and currently only weighs barely 3 lbs). We talk to them about every other day and we each find out how our babies are doing. Well, I found out last night that they actually lost their first baby in addition to having their second child in the NICU. their first son was born with the cord around his neck and only lived four hours. After speaking with them, it seems like a miracle that any of us have healthy children, with all that could potentially go wrong.
Anyway, please continue to keep us and Whitney (and even Baby Edward and his sweet parents) in your prayers-we could definitely use them! Whitney is truly an angel and has already taught us soo much in her short 37 days of life. We have been taught, led and inspired through this whole process and are definitely feeling the comfort and love of our Heavenly Father more now than ever before. We are soo blessed and are soo lucky to have the friends, family and ward family that we do. Thank you all, and I will try to update more often as we know more. It was too hard with all that has happened in the last couple weeks, but I will try to be better!
Love you all!
Sam
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