The I Know Natalie Fund

We have spoken to the kind people at Golisano Children's Hospital and have established "The I Know Natalie Fund" in an effort to raise money for the NICU that cared for Natalie. We are trying to raise enough funds so that Natalie may be permanently memorialized in the only home she knew.

All donations can be made payable to Golisano Children’s Hospital. Please include a comment on the memo line of the check or a separate note indicating you would like the donation to be included in the ‘I Know Natalie Fund’ or made in the memory of Natalie Teegarden. You will receive notification that your donation was received and a tax id number.

The address for donations is:

Golisano Children’s Hospital

300 East River Road

Box 278996

Rochester, NY 14627

We can not thank you enough for considering making a contribution in her memory. The NICU was our home away from home and we know how much they will benefit from any money raised.

As for us, I keep telling myself to put one foot in front of the other. The trouble with that philosophy is first you have to get yourself back on your feet to begin with. I suppose that will take time and work on our parts. We will never again be the people we were before Natalie and now we need to figure out who exactly we are without her.

We appreciate your continued thoughts and prayers. This is of course a very difficult time for our family and we do appreciate all the ways you've reached out to us.

Services

I wanted to share some photos from her service as well as the eulogy I read. I am not up for writing anything else right now but thought those who could not attend might appreciate knowing what was said.

Also, thank you so very much to everyone who has been taking the time to send "I Know Natalie" postcards and notes of condolences. We have been reading them together each night and it gives us more comfort than you know.

Flowers from Mommy and Daddy

Flowers from big sister Anneliese

Some of her special items

Photo displays

Natalie Evelyn Teegarden left us a few days shy of her 6 month birthday. That may not seem like a life long enough for a eulogy, but there is more to say about this wonderful child than I can ever get out at once.

September 24^th of last year I was filled with anticipation and despite Annie being cranky for lunch took a pregnancy test. I carried Annie and the test downstairs. It was in the stairwell that I saw a very pink line develop and knew that we had a baby on the way. A very wanted baby.

From that moment, we have been Natalie’s parents and every day since have based our decisions on her best interest. I was as cautious as I knew how to be. Sometimes, despite your best efforts, a body can fail. Mine did and Natalie lost the amniotic fluid she needed to grow healthy lungs.

Sitting in the doctor’s office, leaning against Steve I could not accept this. I knew it was serious but somehow trusted our baby could make it. If it was at all possible for our child to survive we would fight on.

Natters was always a tenacious child. In her ultrasounds we saw a powerful heartbeat, strong growing limbs and adorable mannerisms. It is impossible to not fall in love with your growing baby, even when everyone around you warns that she may not stay. As terrifying as the pregnancy was, we did our best to treasure that time with Natalie. We knew it may be all we had.

She accompanied us on wheelchair rides, was there when we decorated Easter eggs and her sister snuggled up against the bump of Natalie for movies and stories. I read to both my girls and loved having them close. Those are memories I will always treasure.

While on bed rest, Natters was my constant companion. My buddy. My belly was not the big round one I had with Annie, but I could not keep my hands off her. I focused on every movement, took in each heartbeat check. We developed certain habits-her foot pressed out against my right side and we had a game of pushing against one another. While I was sleeping, she would relax and spread her limbs out, then startle when I first spoke or moved in the morning and curl herself back up in an instant. When I showered, one of the few bits of time I was out of bed, I would rock back and forth, trying to mimic the rhythm I would one day rock her in a chair with.

If I could, I would have kept her inside until she was ready for kindergarten. As difficult as bed rest was, I would never be ready to send her out to this world where I could no longer breathe for her. It was one of the hardest things I have ever done, going into that operating room not knowing. Yet Natalie was born squeaking, if not crying. She rallied quickly and far exceeded everyone’s expectations. The exuberance of that day is one I can never forget, yet is painful to look back on. It was so full of promise that has since been stripped away. Despite all predictions, Natalie was born with lungs to live on. I believe that with all my heart regardless of the fact we ultimately lost her.

I am not going to detail the many obstacles she fought her way through. Natalie is not a medical case, she is a daughter, granddaughter, sister, niece, cousin and her own person. We did not get a lifetime to know her, but we will never forget all the things we learned while she was with us.

Natalie knew what she liked and what she did not. She was rarely up for compromise and mostly got her way.

Natalie loved being on her belly. She loved having hands placed firmly on her back, and as she grew older she would relax as we rubbed her back or patted her with face masks. She also loved having a hand cupping her head and eventually liked having her hair stroked.

Natalie absolutely hated being wet. I think the words “Natalie loves her Lasix” must have been uttered hundreds of times in her room as she was relieved of soaked diapers. This always amused me, as her big sister was the opposite and could have sat in a wet diaper for a week without complaining.

Natters had comic timing with her diaper changes and many times surprised her father and nurses mid-change. I have never seen one baby go through so many blankets. This secretly pleased me as doing her laundry was one way I felt a bit of normal parenting. I never had the pleasure of handling one of her explosions, but I do have a great memory of her peeing all over me while we did kangaroo time.

Natalie loved being snuggled in by “Freddy Frog” positioners and sometimes had as many as eight surrounding her. For a baby who rarely had the freedom to be held, she was a snuggle bug and enjoyed the feeling of being wrapped up. She did settle down when swaddled, but since she tended to be a hot baby did not get to enjoy the sensation nearly enough. I loved wrapping her up into a little burrito and seeing the relaxation on her face whenever we did get a chance.

Natalie loved holding fingers. She would grab on, sometimes holding still and sometimes waving her arms and taking your fingers on a ride. We have wonderful memories of each of us holding one of her hands, standing on opposite sides of her and soaking up the sight of our beautiful daughter. I may not have mentioned it, but Natty was an exceptionally gorgeous child. Sometimes we had to ease our hands away when it was time to go. This could take several attempts, as when she realized your finger was gone she would search it out again and become agitated. We would sometimes have to do quick changes of hand to relieve one another for breaks.

Natalie loved music. She mostly listened to classical, and would move her fingers as if playing a piano. I always saw her as becoming a musician and fantasized about far off recitals. Natters even enjoyed my singing, which we did not get to do often enough for lack of privacy. “You are My Sunshine” and “The Rainbow Connection” were two of her favorites.

She loved having her hands as playthings. Sometimes she would keep herself awake for the sheer joy of stroking her cheek. Those same hands would sometimes jab her in the ear and make her cry, but like all babies her age she never realized she had done it herself. Natalie loved exploring the different textures of her special pink booties and security blanket. I remember the first time her nurse placed her naked legs on the silkiness of the blanket and how she kicked with vigor I had never seen before.

Any of these new sensations and experiences were wonderful to observe. She was sometimes given just a taste of milk on her tongue or lips and we loved watching her respond and investigate.

Natters was starting to work on a real social smile. I saw many, many smirks after her trach, but only one small smile she flashed at her grandfather. She did have brilliant smiles while sleeping….smiles so radiant I felt once she unleashed them while awake we would all be at her mercy.

She did not care much for the equipment that was attached to her face. Natalie had quick hands and could do a sneak attack on her ET tube faster than you could respond. Sometimes she liked to just rest her hands around the tube, but that was too risky. One nurse had the ingenious idea of giving her a bit of IV tubing to hold onto instead. Nat would grasp the tubing, relax in her presumed victory and fall asleep. After her ET tube was removed she set her sights on the ND tube in her nose. At every opportunity she would hook her finger in behind the tube and yank. We marveled at how she knew to get at it.

Natalie had such bright dark eyes. When she opened them my heart skipped a beat. She was there. Despite everything she had endured, when you looked into Natalie’s eyes you saw her. And she saw you. Some of the last times I spent with her awake she stared at me as if memorizing my face. I remembered a story from another mama who thought their baby was remembering her face so she would recognize her in heaven. Natalie’s gaze was so intent and I hope that she did have us memorized as much as we have her engraved in our minds.

Natalie loved being read to and responded well to her “books on tape.” She also loved to look at the pages, especially The Very Hungry Caterpillar. Once when she was having trouble falling asleep I held the book up for her to see. She would finally drift off and I would lower the book, only to have her open her eyes again searching for the pictures. Our plan for Halloween was to dress Natalie as the caterpillar and Annie as the butterfly.

Natalie has a very proud and sweet big sister. Annie had been anxiously awaiting Natalie’s arrival before her birth. All along she has had big plans for Natalie-taking her to the zoo, teaching her to walk, letting her sleep in her room. Annie was able to visit Natalie several times in the NICU and always remarked on how sweet and cute “little Matawee” is. The last time we visited as a family I rocked Annie and we read Click Clack Moo Moo, Goodnight Moon and The Runaway Bunny. Annie then sang “I see the moon and the moon sees me. God Bless the moon and God Bless me” to Natalie several times. Annie is 3 years old, so understanding this loss must be so difficult….even as adults it is impossible to comprehend. She speaks of her baby sister throughout the day and we have had long talk about what has happened. The other night she told me “My brain send me messages and I send the messages to heaven so Matawee can read them.” I know she will continue to be a loving and devoted sister to Natalie in death just as she was in life.

I must also mention Natalie’s faithful companion Sophie the giraffe. A gift from her Aunt and Uncle, Sophie was always by her side. Natty was drawn to her dark eyes and spots which earned Sophie a permanent spot near Nat’s head. She made a wonderful mascot and

She left the NICU twice, once on the incredible day she was freed from the oscillator, and once for the incredible day she was freed from the ET tube. Both times she was alert and taking in the sights. Despite normally liking her world quiet and dim, when out in the hallways she wanted to see everything going on. She always knew when there was a change in viewpoint and we loved watching her face respond to new sights.

Natalie never grew up and away from us as children are supposed to do. In that way, we still had the mother/infant closeness where it is hard for me to know where I ended and she began. When I held her in my arms it was always like being put back together again. My missing piece was returned.

We had always known we were up against incredible odds, but Natalie had a way of rallying and fighting through obstacles few people thought she would manage. I think this gave us a sense that while the road would be hard, she would persevere. The day we lost her I did not walk into the NICU with any more fear than usual. Even as I saw her as sick as she was, I thought we would find a way through. Sometimes, despite your best efforts, a body can fail. Hers did. The body failed, but Natalie did not. She was more than her respiratory status, more than the nearly perfect baby that held her soul.

From pregnancy until the end I gave Natalie the same pep talk during our private time. The words never really changed, and when we had these heart to hearts after she was born it was clear she remembered and relaxed to the cadence of my speech.

“Natalie is a good girl. A strong girl. A fighter. Mommy and Daddy are not giving up, don’t you give up. People will tell you you can’t do things. They are wrong, don’t listen to them. This is the hardest thing you will ever do in your life, the hardest thing I have ever asked of anyone. It will be worse before it is better. But I promise you, I promise that we are right beside you. You are not ever alone. When I am not here, you are in my heart and always always on my mind. If you can get through this, I promise you that there is a wonderful life waiting on the other side. You are so loved and wanted. We will make this up to you. We will make this fight worthwhile.”

We will not have that chance. We did not get to shower Natalie with all the pleasures life has to offer. I had told her of chocolate chip cookies and ice cream, of riding on swings and playing with her sister. Snuggles without wires and the feeling of being outside on a warm day. All the simple things I wanted her to know. That is lost now and is a void that can never be filled.

The pain of losing our daughter is searing. It can bring me to my knees. It is impossible to understand. While there is no sense to this loss we want her memory and her name to go on. We want the spirit of Natalie to bring good things to this world. It was a place she deserved to live in, a place we will strive to make better because she no longer can.

When you think of Natalie, think of the baby whose eyes lit up the room. Think of the sweet soul who made so many people fall in love with her. She is more than what she went through, more than what she endured. Natalie Evelyn was a warrior and a charmer all at once. She is the strongest person we have ever known and I hope we can take strength from her example as we move forward.

We must continue on, but not past Natalie, not ever leaving her behind. She is coming with us, not in the way she should have, but in the best way we know how.

Balloon release at the cemetery

Details

There are things that we don't want to happen but have to accept, things we
don't want to know but have to learn, and people we can't live without but have
to let go. ~Author Unknown

First of all, your comments have brought such comfort to us and every time I see the words "I know Natalie" I feel so blessed. Thank you so very much for loving our daughter. Your taking the time to write us is appreciated more than we can say. We have reread the comments over and over and are always overcome with emotion.

The link for Natalie's obituary is on the funeral home website. You can find it here and here. It will appear in the Democrat and Chronicle tomorrow. There was a great deal of confusion surrounding it as I somehow attached the unedited version when I sent it in. By the time we were made aware we were 30 minutes from home and trying to pick out Natalie's clothes. There was no time to return before the deadline. Writing my daughter's obituary was a near impossible task so I suppose I am grateful that it is done at all. It would never have been perfect enough to match her regardless.

Clearly this is not a position we knew we would be in and there are many details to attend to. We are in the process of starting a non-profit organization called The "I Know Natalie" Fund. This requires the assistance of a lawyer and some time. Our intention is to collect money and provide a large donation to the NICU that was Natalie's second home. In the coming months we will be doing some fund raising efforts through the non-profit account as well.

Some of my dear friends surprised me today by setting up a donation site in Natalie's honor. Without us discussing it beforehand, they called the website "I Know Natalie." Great Snoogle minds think alike.

Thank you again for helping to hold us up. Losing Natalie hardly seems real yet at the same time will hit me with great intensity out of nowhere. I keep wanting to call the NICU for an update or drive over to visit her. Twice I have caught myself reading what others have written about her and thought how wonderful it will be when she can read it someday. Then I remember there is no longer someday. Our future is not at all what it should be. The first night I would not fall asleep because I could not face waking up and realizing it all over again.

There are a million things to say, and at some point I will share the story of Natalie's last day. Right now I don't know what to keep to myself and what to set in print. We are moving through this very strange process....as everyone says, you are not supposed to lose your child. Choosing a burial site is all at once precious, surreal and agonizing. These are some of the last concrete things we are able to do for her and we want it all to be the best it can. We have to find ways to endure the unendurable.

Saying Goodbye

Natalie Evelyn Teegarden passed away unexpectedly the afternoon of October 16th. She was in my arms and in no pain. I suppose that is the most one could hope for.

I so appreciate all the love and affection people have shown our daughter this year. Our family is blessed to be surrounded by the strength of others.

If I could, I would like to ask that when people share with us in the days to come that it is not suggested that there was a reason for her loss or that God needed her more than we did. Natalie was a very loved and desired child, she would have shared a wonderful life with us here on earth and that is all we wanted. Please forgive me my candor. It is just that I am broken in a million pieces right now and do not have it in me to nod along and agree when I do not. My child should still be here in my arms looking forward to an abundant life. I know it may be hard to find words, so please do not worry trying to find the perfect thing to say. What we need is to know that Natalie is loved, that she will be remembered and that her life meant something to others.

I have one other request. Over the past several months, we have been humbled and amazed at the people who knew Natalie, cared for her from afar and supported us. If you think of her in the coming days, please consider sending a postcard with the words "I know Natalie" to

Natalie Evelyn Teegarden
120 Parkwood Rd
Rochester, NY 14615

As I am here trying to make myself understand that she is physically no longer with us, I am so afraid that our daughter will be forgotten, or that proof of her life will not be known to others. It would mean the world to me to hold in my hands evidence that Natters is still in the hearts and minds of others.

Thank you thank thank you for never letting me think we were on this journey alone. I am so very sorry.

Boomerang

was nervous last night when Steve stayed at the hospital so late. I thought she wasn't doing well and he was waiting for her to stabilize. I worked up the courage to call for an update and Natalie was doing very well. Just during our conversation she went from 84% FiO2 down to 78%.

I called this morning and overnight she went as low as 60%. Wonderful. During the morning she was as high as 75%, but that was mostly when she was upset. The nurse mentioned that she was fussy and her temp was up (38.2). They thought she was agitated due to the new meds and attributed the temp to the agitation. Despite hearing that she was cranky this was the best update we've heard in some time. Certainly it was light years better than yesterday.

Her nurse called a few hours later to say that Natalie's temp was now 39.3. It has never been that high. Now they attribute her crankiness and the temp to infection. Blood cultures, urinary cath and culture, CBC, CRP......waiting to hear back on results. They are also going to take a look at her ears. I am very much hoping that she has a basic ear infection but know better than to get my hopes up. While she is going through all the unhappiness of being poked and prodded she is back at 100%.

It's Always Something

Nat, Natty, Natters, Baby Tee, Natalata-dingdong...Natalie has a lot of names she answers to. I sometimes call her Cassius Clay in honor of her fighting skills or Natalie Evelyn because I love her entire name. Now I am adding Roseanne Roseannadanna to the list as truly it is always something (oh, and I love love love Gilda Radner).

This morning I held my breath before I called. When the nurse answered I immediately knew things were not good just from the sound of her voice. She had spent an hour trying to get Natalie to saturate above 70%. They had just d one a chest film and were waiting for results. About a half hour later Steve called-the film was awful and we needed to go in. Luckily Steve's mother was available for babysitting.

When we arrived she was doing a little better but never got a chance to rest. This part of the day is a blur to me. She was still struggling with saturation and there were no answers. They did blood cultures, CBC, CRP and trach aspirates for viral and bacterial cultures. The X-ray showed big changes that could be attributed to infection or worsening lung disease.

Over the past few days (or week?) she has been sounding increasingly tight, much like someone in the midst of an asthma attack. She does receive albuterol to help with this and always has a good response to it. They have been gradually increasing the doses she gets a day. She also gets a nebulizer of pulmicort, which is a steroid to help combat inflammation.

The pulmonologist came in to examine her and formulate a new plan of attack. Her albuterol is now given continuously through a drip into the nebulizer (she has a very nifty inline nebulizer attached to her vent). He added prednisone (oral steroid) to help with inflammation. If these changes are not enough, she may get another nebulized med and an IV drip of aminophylline.

Those changes started a flurry of activity. Then her nurse stepped out to speak with the attending and returned saying "I just told Dr. S that I love him. Why do you think I would do that?" I was so hopeful it was because the new trach had arrived. All morning I was fighting the urge to go to the loading dock and beg them to rush it through. The attending himself said "You know if I had a tracking number I would be checking it all day."

Well, the trach had in fact arrived just after Steve left to pick up lunch. One of the last things he said before leaving was "I bet the trach hasn't even shipped yet." Finally I got to call him with some good news.

Suddenly it was Christmas morning in Natters' room. Dr. S opened the box and handed the trach to me so I could check it out. A group of residents and respiratory therapists gathered outside her room to prepare for the change.

Now, here is a little lesson for everyone on advocacy when someone you love is in the hospital. While the group was assembled outside I went over and grabbed the "owners manual" for the trach. This is just me. If I buy a new microwave I will research it for hours and read the manual cover to cover when its home. Certainly I wanted to know what information came with this new trach.

Her cuffed ET tube was inflated with air. This cuffed trach specifically recommends inflating with sterile water. I went to the group and pointed this out. No, no, no....they always inflate with air. Well, you also always use Shileys. For Pete's sake, you've never used an Arcadia brand trach, why would you think you know better than the manufacturer??? I had no intention of leaving the room with them planning on using air when it says water.

The doctor laughingly thanked me for reading the book as they shooed me from her room. The change went very smoothly and her air leak is almost completely gone. In some positions it returns a little but by far it is a huge improvement.

From there her day slowly improved, in part because she was finally left alone. One of her primary nurses developed a position that she loves to sleep in. We have been teaching it to other nurses over the past few days. In general if you get her set up this way and then pound on her back with a face mask (the cushy kind used in hand bagging) she will saturate better.

When I left she was at 90% FiO2 and saturating in the low 90's. This is considerably better than 100% FiO2 and saturating at 50-70%. I am sad that this is what we need to see as good news today, because 90% FiO2 is A LOT of oxygen, and not what we were hoping for post-cuffed trach. On the other hand, it seems she has picked up some other complications in the past few days so we need to be happy that we are still here and fighting.

The blood work shows no evidence of infection and the viral cultures will take a long time to come back. There is also very little more they can do if this is a viral infection. In a way her having an infection would have given us a clearer path to recovery. As things stand now there are no easy answers.

The attending did say that if micro-aspirating has been a contributing factor it will improve over time with the cuffed trach. That is not an immediate fix-all as the inflamed tissue would need time to heal.

I often wonder if people find this blog depressing and are reluctant to visit. I so wish I had nice shiny happy things to report. I do have pictures, though. Pictures always make frustrating posts easier to bear.

Natters reading up on bulls-eyes and her family

Sweet sleepy face

Natalie rocking the yellow ducky look

Snuggling with my mother...her first time being held by a grandparent. We look forward to her being stable again and getting her into everyone's arms. By the way, as soon as they put her in Grandma's arms she started to saturate high!
"I'm super cute. What else do you want from me?"


Annie celebrating her birthday at preschool

The Big Bass Wheel game......So, our family sometimes does have great luck. We were celebrating Annie's birthday at a local play center and Anneliese hit the jackpot-1000 tickets. It took about 5 minutes for all the tickets to dispense. Drawn by her success, many other children came over to try their luck. Then my 5 year old nephew Keegan stepped up and once again hit the big one. The kids had a great time cashing in their tickets for prizes. There is a fantastic picture of Steve wearing a pink princess cowboy hat posing with Keegan in his manly hat. I would love to post it but I also enjoy minimal conflict in my marriage.






Tonight I also want to say that we are hardly the only family facing such a difficult course in the NICU. Over the past year I have become close to many other mothers and witnessed their struggles. Not all babies come home. There are no words to make that better and it never ever gets easier to hear of loving parents with empty arms. I think of those children daily and will never forget their strong spirits.

There are also amazing babies still fighting every day despite having incredible hurdles placed in their way. I am so blessed to know these babies and their mothers. The NICU is not an easy place for anyone to be, but some families are given especially long and challenging journeys. Thank you to the mothers who let me know I am not alone and let me lean on them during times like this. You are in my thoughts and prayers daily, sometimes hourly, and I hope one day we can all gather our miracle children together when this is just a memory.

Waiting

A week after deciding on a cuffed trach and we are still waiting. There were delays in getting all the specialists to agree and then find a vendor. This vendor works with the ENT clinic but not the hospital, so the hospital had to approve them as a vendor. Once that was complete, the vendor needed the hospital to jump through hoops to insure payment. sigh. Doctor finally begs them to Fedex the trachs already and we promise promise promise they will be paid for. They were supposed to be here today and we were very disappointed that we have yet one more day of waiting. They should be on the loading docks tomorrow morning and the neonatologist said if he had contacts down there he would have someone expedite it to the NICU.

There is no real change. She continues to struggle with oxygen saturation and no one knows why. She should be over the surgical set back, her pulmonary hypertension is no worse (according to the last echo), they even put her on an oral antibiotic for good measure after reviewing consecutive gram stains of her trach aspirates. Our last best option is the air leak, otherwise the explanation we are left with is disease progression and there is nothing more they can do.

We had a sit down with the social worker (love her) and the current attending (he has been fantastic). We wait to see what the cuffed trach does. In the meantime, we asked them to consult with some pulmonologists from larger hospitals to get feedback. We also asked for the first time if Natalie would possibly be better off in a larger institution. This is a touchy thing to suggest and the next best option for us (CHOP in Philly) is over 5 hours away. It would mean some incredible maneuvering on our part, and she would have to be stable enough for the drive. That being said, I never want to wonder if another hospital could have done more for her.

Dr. S is going to talk to people and see who the best consult is. We are waiting to see what happens when her air leak is under control. Waiting to see if the consult will have suggestions, waiting to see if another hospital thinks they can do more for her and if they are willing to accept her as a patient. Everything in me wants this air leak to be the problem and for her to make steady improvements right where we are. In the meantime, we wait.

I realize I have been talking about the cuffed trach and not explaining it. The diameter of her current trach (a basic Shiley model) is considerably smaller than the diameter of her trachea. A cuffed trach has a small balloon that is inflated around the shaft of the trach to minimize the air leaking around it. This is not without risks-the contact and pressure on her trachea can cause tissue breakdown. Developmentally it eliminates her ability to vocalize and will make tasks such as eating and swallowing a little more challenging to master. We hope the cuff is a temporary solution and that as her respiratory status improves the need for the cuff will be reduced.

We thank you for your continued prayers and kind words. I have received so many wonderful emails and notes of support. This has been a very trying time in the midst of a very long hard road and I so appreciate the kindness we've been shown.

Trying to find where we are

I may start talking in circles here, but things have been pretty hectic and confusing.

Nothing grew from her cultures, the fever subsided and antibiotics discontinued. A follow up CBC/CRP (because I begged) this morning still looks good.

Natalie started to do better Friday afternoon and overnight. In the morning she was down to 56% O2. They made a vent change (moving her to pressure control/pressure) and her O2 went up by 10%. A short bit later, another nurse was babysitting and Natalie had an event. She spit up, pooped and desatted down to 19%. That is AWFUL. The rest of the weekend was just as bad. Steve was with her until 3AM Sunday morning when she finally stabilized. She was "ok" until Sunday afternoon when things fell apart again. This time an X-ray showed her ND tube in her stomach rather than her intestines, so they attributed her event to that.

She is still not bouncing back. The new talk is that she may be microaspirating gastric juices. The surgeon came by last night and suggested we change course. Rather than G tube/nissen, which would be a pretty big hit for her recovery wise, he suggested a G-tube to drain gastric juices and a J-tube for feeding. The J-tube would go directly into her intestines.

Here's the problem....if her respiratory status is due to microaspirating and that can only be addressed surgically she has to be in a better place with her respiratory status before she can go for surgery. it is yet another awful catch-22.

As for the trach, the neonatologist thought a cuffed trach was worth a try. We are hoping that controlling her air leak will help matters greatly. There is an added bonus that it may help protect her airway if she is aspirating. It was a funny-this weekend while I was in panic mode people kept saying "Have you heard we are going to try a cuffed trach? It will be here next week and maybe that will help." Have I heard? Yes. I was the one who researched the trach and asked for it. Seriously. It is amusing that anytime we have a good suggestion the team immediately forgets where it came from.

So, this is where we are. I am desperate for this trach to arrive and hoping it will make some positive improvements. I hate where we are right now. This weekend was the worst kind of fear.

late night

I apologize for not updating during the past week. Sometimes it is hard when her status changes so quickly. For the most part she seemed to be doing better after the vent changes last Monday. She would sometimes get down to the high 50's in her O2 needs but would bounce right back to high 80's. Her O2 requirement seems very positional and possibly due to her large air leak.

Over the weekend they tried to change her diuretic again. They overlapped with Lasix but it still did not work. She once again has very wet lungs and is now on twice a day Lasix until that resolves. The past few days have been higher O2's again, sometimes getting back to 100%. There was a disastrous blood gas but that was blamed on the diuretic issue.

Tonight I went in hoping for snuggles but found Natalie to be running a fever. She tends to be a very hot baby normally, but this was above and beyond her norm. They ordered a full septic work-up and I waited around to see what came of it. Her white count is a little elevated, but no bands. Her CRP is 17, so a bit above her normal baseline of 2-5. As I was driving home I realized they did not check her ears, so I will call to remind them. That is a bigger baby issue and tends to be overlooked as a possible culprit. Maybe something brewing, maybe not. She is on IV antibiotics until the cultures come back. It was so hard to leave. She was at 100% and just not sating very well.

Tomorrow the attending is talking to pulmonology and ENT about possibly getting her a cuffed trach to manage the air leak. It will take time to arrange that even if all parties are in agreement. The hospital does not stock them and it needs to be sent in.

I am exhausted on every level. It is 3am and I need to get to bed because there is a certain preschooler who will be up before long. I just wanted to ask for prayers and some positive energy. I am doing my best to bring a happy face to her bedside and think that is what I need myself. I need to feel motivation rather than frustration.

I have nice stories of happy snuggle time with Natters and happy birthday celebrations with Annie but that will have to wait. For what it is worth, Natalie looks good and has been pretty comfortable. She does not look as though she is sick, so hopefully this is a blip and she will be rocking the under 60% FiO2 again very very soon.