Baby Abigail Grace Update

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Note: This post is updated from the top. If you are just starting to follow the Baby Abigail Story, start at the bottom of this post. Click on enbedded links for explanations of stuff. And send up prayers and good thoughts every time you see a photo, ok? Donating to the Go Fund Me Campaign to support Abby and her family is another way you can help.

December 31, 2018

Look who came to visit Local Care Midwifery today -Baby Abby! She played with Michelle, took a nap with Mr Kevin, then woke up to flirt and play some more. She is such a big girl -getting her mommy’s milk from a bottle (no more NG tube -yay!), babbling and cooing, holding her head up, being curious, heck down right nosy. Abby, we are so proud of you!

 

December 2, 2018

BIG NEWS!
Abby is back in NY! She is currently residing at Albany Medical Center on the Pediatrics Floor. She did so well getting her breathing under control, her medication needs straightened out, and learning how to eat from a bottle, that CHOP just had to send her home. (Ok, that was a LONG story SHORT.) Soon, any day now, for the very first time since her birthday on July 30th, Abby will actually go home. Whoopee! (Yes, I cried a little. You?)

There is still lots of work ahead for Abby -getting rid of her hated nasal gastric tube, resolving her still large cystic hygroma, getting off the rest of her medications, learning to eat breastmilk with the fat still in it…. But first things first: HOME!

Michelle
May all babies be born into loving hands

 

Friday November 16, 2018

Maybe I’m writing this too soon, but it looks like Baby Abby just might be home for Thanksgiving. Or at least back in the Capitol District (instead of the CHOP NICU in Philly).

Currently, Abby is using nasal cannula or CPAP to help her breathing. (And it would be so much better if she stopped needing the CPAP). She has been making steady progress weaning from the CPAP. The next step would be to go down to 4 liters high flow via the nasal cannula from the 5  liters she is currently at (then 3L, then 2L). Her edema is stable, not really a problem right now (go figure!). The hygroma , the cyst under the skin of her neck, is big and nasty looking but not getting bigger or impeding her breathing. Abby is tolerating feeds of skimmed and fortified breastmilk through a nasal gastric tube -no plan to start oral feeds until she is off the dang CPAP and down to 2L on nasal cannula. 

To get Abby home the following is needed: 

Albany Med Pediatric Care Unit (PICU) to 1) accept her care and 2) have an empty bed.

The insurance company (CDPHP) to approve a flight for Abby since the docs in Philly say that an ambulance ride would take too long.

Abby to stay medically stable, (Or to improve. That would be fine!)

So, whether you do good thoughts, prayers, or high level medical insurance negotiations, your help is welcome! :-)

Michelle
May all babies be born into loving hands

 

Sunday October 21, 2018

The big news on Baby Abby is that not much has changed in the last week. She is still off the ventilator -yay! And various tubes and lines have been stopped and not restarted -yay! Abby is still living in the NICU at Children’s Hospital of Philadelphia -meh. (CHOP’s NICU is needed, and it’s great that she can be there, but it is too far from the home in Cohoes that she has yet to see). And there is a light at the end of that particular tunnel: discharge planning is now an active part of the medical discussion.

Breathing support: 

Abby is alternating between a high flow nasal cannula (little plastic prongs blowing air) that she hates and a nasal mask CPAP (a mask for her nose that pushes air in) that she tolerates. The oxygen setting is at generally at 21% the same as room air which is great. It will be even greater when Abby can tolerate just the cannula at 2 liters of air per minute or less. And even better, when she can breath comfortably without this support.

Nutrition:

Abby is getting her mom’s milk, which is then skimmed of fat and fortified to replace some of the good stuff that goes out with the fat. (Consumption of even ‘good’ fats like the ones in breastmilk and living with a lymphatic disorder is a constant battle. Good fats can lead to both chylothorax and generalized body edema.) Abby is currently getting 70 milliliters (2.3 ounces) feeds of fortified milk into her stomach through a nasal gastric tube. Once she is able to tolerate breathing with the nasal cannula at 2 liters or less feeding by mouth can be tried. (Come on Abby. You can do it!)

Medication management:

Like too many Americans, Abby has to be weaned off opioids. Pain relief is important and opioids like morphine are great for that. But they are addictive and coming off can be very uncomfortable. Abby is a little ’squirrelly’ some days -could be from the opioid weaning, or could just be that she is more aware and opinionated!.

Lasix, a diuretic, has been a big component of Abby’s medication management. Like opioids, it is useful but has definite draw backs, like electrolyte derangement (Lasix can make you pee but not just extra water leaves the body; you can also lose too much potassium, calcium, sodium, and magnesium.

Besides being weaned from morphine and lasix, Abby needs to get off hydrocortisone -steroids like hydrocortisone are great for reducing inflammation and edema, but are not great for long term use.

Social: 

Biggest news is in this area.

Abby is getting held a lot and is liking it, especially if her mommy holds her facing the room: Abby is really into checking out the world. She gets visits from the Occupational Therapist to work on things like sitting and playing with toys. She gets to listen to music and her folks read her books.

Abby is wearing real baby clothes most days. This is a big deal not just because she is extra cute in her outfits but because it means that various lines and tubes are no longer needed. The umbilical lines, the PICC line, the arterial line, and the chest tubes are all out! (PICC line came out this week -yay!)

Abby is giving smiles on a regular basis now (just not always for the camera.)

Her big brother Jack came to visit her this weekend. And he got gifted with not one but THREE halloween costumes thanks to his little sister’s NICU stay.

While Abby’s mom is working on getting a new apartment (more secure and less cigarette smoke than the last place), a nursing license and part time job in PA, Abby is working to make those plans unnecessary. If Abby keeps improving at this slow, steady rate, they might be back in NY within a month! (Abby and her mom could be home (or at east at the AMC NICU) for Thanksgiving. Fingers crossed people!)

Michelle
May all babies be born into loving hands

 

October 11, 2018

Big news: Abby is breathing on her own. No more ventilator. Wow!

After much preparation, negotiating and careful planning, Abby was extubated yesterday. While most of us are thrilled at this development, Abby is not so thrilled. The high flow nasal canal is not her idea of fun -hopefully she won’t need it for much longer.
Good work, Abby. You’ve come a long way, Baby!

Michelle
May all babies be born into loving hands

 

October 4, 2018

Things may have been quiet on this page recently but Abby has not been slacking off! She has gotten rid of almost all of her extra fluid. Various medications and tubes have been stopped (Arterial line and chest tubes for example). She is now playing with toys, and even practicing sitting up like a big girl ! If she keeps up at this rate, the ventilator (breathing tube and machine) may finally be stopped next week. Wow!

Abby’s family continues to support her daily -Mom is ready to start applying for part time jobs in PA but Abby may just have a different plan: she might just do well enough in the next week or two that they can come back to New York!

Michelle
May all babies be born into loving hands

PS: Abby’s mom hates when I do this, but, oh well. Please, please, please consider giving a small donation to this family via Abby’s Go Fund Me page.

From Abby’s Mom Leslie on 10/3/18:

Chest tubes came out 9 days ago after 2 weeks of no drainage. She is so much more comfortable now. Pleural effusions have not reaccumulated. Vent settings and oxygen requirements remain low. Chest Xrays remain hazy. Secretions are copious. Body edema is minimal, primarily located in abdominal wall.

Feeds are being advanced fairly quickly now. Currently she’s receiving (via her Nasal Gastric tube) skimmed breast milk fortified with a special low-fat formula. She receives 21ml every 3 hrs with 3ml increases every 12 hrs. 50ml per feed is current goal as she is still being fluid restricted. Goal may increase as she tolerates it. Once she reaches goal feeds her TPN and lipids can be discontinued.

She still receives 2mg/kg lasix twice daily. Dilaudid is being weaned slowly. Hydrocortisone is also being weaned slowly.

If feeds are tolerated from a lymphatic perspective (no pleural effusions or edema) extubation should occur next week.

Her hygroma is still present but mostly remains stable in size. The consensus is to leave it alone for now. There is some concern that if they were to sclerose it now, the resulting local inflammation may negatively effect the anastomosis. However, if there is any concern that the hygroma may be affecting her ability or breathe post extubation, then it will need to be addressed in the near future.

Typical two month vaccinations were given today.

I’m waiting to see how extubation goes before applying for jobs. It’s possible that if extubation goes well and she’s on full bottle feeds then our stay here won’t be that much longer. I did already receive my temporary practice permit for PA so in theory I can work as soon as I get credentialed somewhere. I’m moving into a less expensive apartment this weekend.

Abby sitting up like a big girl with some help from Occupational Therapy

 

Abby October 3, snuggling into daddy s hand

September 21 

Since Abby’s surgery on 8/28/18, some things are better and some are worse. 

Better: Her edema generally improved from the neck down. Her chest, arms and hands have new definition, and she can even bend her arms to get her hands to her mouth, an important Normal Baby activity. Abby’s chest tubes aren’t draining as much -it seems that there is just not as much to drain. Last week, Abby had a Staph infection: it was treated with antibiotics and appears to have resolved. Abby is now getting nourished with 2 ml of her mom’s breast milk every hour which is great, but the feed is not going into her mouth or her stomach but straight into her duodenum. We are looking forward to a day when Abby can get the good stuff straight from the source.

Worse: The hygroma, the cyst on the left side of Abby’s neck, is getting much, much bigger. It is getting so big that her head is being forced to the right. The hygroma also appears to have a hemorrhage into it, contributing to both the increase in size and to Abby being anemic. There is talk of doing procedures to drain or sclerose (seal off) the cyst.

On the family front, to stay near Abby, her mom has rented an apartment in Philly, and is in the process of applying for a PA nursing license. The plan is for her to work an occasional shift in Philly to help with bills and still be able to see Abby daily.

Thoughts and prayers (good ones!) are greatly appreciated.

Michelle
May all babies be born into loving hands

 

 

Thursday 9/14/18 7:00 AM

Abby is having a slightly rougher time right now -she might have an infection, maybe from aspirating (a bit of her breast milk feed got into her lung instead of her stomach). Dad and mom are both with Abby right now which is great, it gives Abby extra support and allows mom to have a needed break. Plus, they really like each other! Long term medical care for any family member, let alone a child, is really hard on couples. Your support of Abby’s Go Fund Me campaign is deeply appreciated and used to support this family as they support their very loved daughter. 

Michelle
May all babies be born into loving hands

From Abby’s Dad 9/12/18: 

Abby gained 300 grams (little over 1/2 a pound) and got a fair bit puffier from Saturday to Tuesday, but settings on vent are still very good. The thought was she is getting too much fluid so they decreased her fluids a bit. She is down 100 grams today and less puffy. However, she had a slight fever this morning so they are starting antibiotics and cultures as a precaution. Chest x-ray is hazy today which could mean some fluid buildup or could be more a result of fever. They doubled her breast milk feeds yesterday in the hopes that better nutrition will help decrease edema. She is a bit agitated today which is consistent with her being sick. Also, now potentially a bit dehydrated because her blood pressure is down and her heart rate is up.

 

Abby 9/10/18

Abby 9/11/18

Monday 9/10/18 8:00 AM

 

Abby is a real baby, in the NICU, on a ventilator. She gets alert and sleepy, snuggly and prickly, cozy and uncomfortable, content and mad. She definitely has opinions about things and is old enough now (6 weeks old!) to make those opinions known.

The rollercoaster of emotions, hopes, expectations and medical events continues. This past weekend, Abby was doing so well, it looked like she was going to get off her ventilator/breathing machine. But then the edema/swelling increased again and more medication, treatments, and breathing support were needed. Sigh. 

Abby is now regularly getting a small amount of of her mother’s milk to eat. Due to the chylothorax, the milk is first skimmed of extra fat before being given to Abby. 

ABBY still gets visits daily from her mom who now lives in Philly to be close to Abby. She may apply for a PA nursing license so that she can work an occasional shift. Abby gets visits regularly from her dad who is working in Albany and caring for Abby’s big brother Jack. Jack has started a new daycare and loves it. He thinks FaceTime with mom and Abby is fun.

So… the rollercoaster continues, looks like it is going to be a long ride. 

(If you are able to give any financial support, visit this GoFund Me page).

Michelle
May all babies be born into loving hands

From Abby’s Mom last night 9/9/18:

Well we had a good run from Saturday (9/1) to this last past Friday. Weight was down from 5kg to 3.8kg. Chest tubes were draining well/responding to tpa. Ventilator was weaned significantly. Urine output has remained good with twice daily lasix. Feedings were started and IV fluids were increased. Thought we would have extubated by now. But starting Friday evening ventilator settings were slightly worsening. Chest tube output has decreased. The last two days she’s gained 100g a day. X-ray is hazy. Today it was obvious we’re in a fluid accumulation phase again. Trying to determine if it is due to the increased IV fluids and starting feeds or if it’s due to the chest tube output decreasing. An extra dose of lasix was given today and IV fluids were decreased tonight. She may require a replacement or repositioning of her chest tubes if it’s determined that the lack of output is the problem. 

I plan to apply for my Pennsylvania RN license this week with the thought of working per diem shifts in the future

 

Wednesday 9/5/18 

Abby is hanging in there. The love, support and constant presence of her parents is undoubtedly a huge part of Abby’s survival so far. To be with her is a huge sacrifice -Mom is living in Philly so that she can be with Abby every day. (First she was staying in a hotel room, and now is in a tiny, furnished apartment.) Dad is traveling back and forth between Philly (for Abby) and Albany (for work and big brother Jack). These parents are working as hard as they can to support their baby girl. It is said that it takes a village to raise a child. Now is the time for Abby’s Village to come together.

After much heart searching, Abby’s parents have agreed to have a Go Fund Me campaign to help them support Abby. Please consider giving some money if you can. If you have other talents or gifts that you are drawn to give this family, please share your ideas with Michelle at kmdoyle@me.com

Michelle
May all babies be born into loving hands

Monday 9/2/18 

Abby is looking like a real baby! Often alert for an hour or a two at a time. Lost enough fluid (almost a kilo/over 2 pounds) in two day that she is easily able to open her eyes. We think she is looking a lot like her mommy (sorry Dad). Is this all because the surgery last week actually worked? Is this just a momentary ‘glitch’ in the right direction? We don’t know: we just live in the moment and keep moving forward with cautious optimism.

 

 

Saturday 9/1/18 3:30 PM

From Abby’s mother on 9/1/18

We’re at post op day 4. After a couple of days of swelling post surgery chest tubes were instilled with tpa and drained really well for about 24 hrs (longer than usual). Edema subsided a bit. Chest X-ray improved. Vent pressures went down. 

Urine output has been improved since surgery. Requiring only two doses of lasix instead of three each day. 

An abdominal drain was placed during surgery as another way to drain fluid but was removed last night since it stopped draining. The puncture site of where the drain was is continuing to weep fluid. All drains initially drained bloody fluid post op. Now all drainage is back to the normal yellow color. 

Today she is gaining fluid again. Face looks a bit more swollen. Chest X-ray looks whiter. Chest tubes are slowing their output. Vent pressures are increasing. 

Platelets are low at 49. May need to be replaced if bleeding is noted or they continue to drop. 

John held her for the first time today. She enjoyed being held. HR went down. She slept. Prior to being held she seemed more agitated waving her arms around, HR was elevated. She typically receives less pain and sedation meds during the day than she does at night.

Still can’t say if surgery had any positive effect. Although just maybe it did and that is why urine output has improved. It’s also possible this is just another day in the life of a baby with a lymphatic disorder. 

In another 2-3 weeks we may consider trying an anastomosis on the right side of her neck. 

We’re still waiting to hear results of her genetic testing. That could be months.

So…Please continue to hold these folks in your thoughts and prayers. When you feel overwhelmed and sad for them, also remember that Abby is a baby and she loves being held by her mommy, and now by her daddy. And that babies are precious. And that this family is loving and resilient. 

Michelle
May all babies be born into loving hands

Tuesday 8/28/18 11:45 PM

Abby made it through surgery, almost 12 hours of surgery. At this point she is stable and back in her cubby in the NICU with her mom at the bedside. 

The surgery team is not sounding overly optimistic: surgery does not appear to have worked, but time will tell. Abby has not only an unusual lymphatic system, but a very fragile one (the vessel walls are very thin and friable making connections to veins difficult).

Hopefully Abby and her family will get some good rest after this long, long day. And we’ll see what tomorrow brings. 

Thanks for all the good thoughts and prayers. And keep them coming.

Michelle
May all babies be born into loving hands

Tuesday 8/28/18 4:15 PM

Abby’s mom says that surgery is still going, probably a few more hours. She knows that we are thinking of her and her precious daughter. Fingers crossed and prayers ascending!

Michelle
May all babies be born into loving hands

Tuesday 8/28/18 7:00 AM

Abby is scheduled to go into surgery between 7:30 and 8:00 AM EST. It is anticipated that she will be in surgery for 4-8 hours.

Sending love, good thoughts and prayers to Abby, her surgeon, the whole team and her entire family.
Ok, here we go!

Michelle
May all babies be born into loving hands

Monday 8/27/18 4:00 PM

Abby has been in a holding pattern -needing surgery, getting more swollen, less swollen and then more swollen again. And the surgery has had to be postponed because of scheduling issues. Was supposed to be this week, then was going to be in another week or two after that.

To have any chance of a life outside of the NICU, Abby needs to have a working lymphatic system. Time will not fix this issue but hopefully surgery will. The surgery, a lymphatic venous anastomosis, is to fix her lymphatic to venous drainage.

And….

Abby is now scheduled for surgery tomorrow 8/28/18! Prayers and good thoughts appreciated!

 

Michelle
May all babies be born into loving hands

Friday 8/24/18 9:00 AM

In the last couple of days there are signs that Abby might be developing an infection. (There are changes in her blood count and lots of oral secretions). Antibiotics have been started. Blood, sputum and urine cultures are processing. With luck, prayer and good medical treatment, this will all pass quickly and uneventfully. Infections in little babies are always a big deal. Infections in babies on ventilators and in the NICU can be a really, really big deal. 

Abby is also getting more swollen again, gaining fluid in her face, neck and chest.

Surgery, the lymphatic venous anastomosis (aka Lymph to Vein Hookup for Abby’s Fluid Management) was supposed to happen next week. Due to scheduling issues, this surgery is postponed. There are three different schedules that have to match up for this surgery to happen and right now next week isn’t looking good. But frankly, Abby laying around in a NICU isn’t great either. 

If you have any thoughts, prayers or ideas, pass them this way. This baby and her family could use a break. Miracles graciously accepted too!

Michelle
May all babies be born into loving hands

 

From Abby’s mother on 8/22/18:

Abby’s chest tubes are being instilled with TPA twice a day in an attempt to keep them draining even though the spaces around her lungs don’t seem to fill as quickly as they did before the imaging procedure.

Lasix is given twice a day now. Sometimes Abby is also given 25% albumin, a protein to help pull more fluid from her lung and skin tissues. 

Abby’s arterial line was removed on Wednesday as it had essentially stopped working. 

On Wednesday, her X-ray was overall quite hazy, and peak pressures on the vent are higher but still within normal limits. 

Sclerotherapy has been delayed indefinitely as it may result in significant local inflammation which may delay or prevent her anastomosis surgery. 

Current plan is to have Interventional Radiology place a drain in the cyst on Abby’s neck next week and then the following day she’d have her anastomosis surgery. (Fingers crossed that this plan continues and that the surgery works!)

Her rashes are believed to be from multivitamins in TPN. So vitamins have been removed from TPN. Vitamin levels will eventually be checked via blood work to assess for any vitamin deficiencies. 

I’m holding Abby daily for 2 to 3 hours at a time. She generally seems to like it and sleeps well. 

She’s displaying a harlequin sign regularly now, gets red on one side of her body. No one seems that worried by it. 

I’m moving into slightly less expensive housing tomorrow. Ronald McDonald House wasn’t going to work for me as they don’t allow food in the rooms and I eat when I pump.

 

Saturday 8/18/18 5:30 PM

Today is a quietish day with Abby. She is getting lasix twice a day now, peeing well and losing some of her extra fluid. Her swelling is down enough that she can open her eyes well. Which means she can look at her mommy!

Understandably, Abby’s best medicine is Mommy. She calms and settles the best when held by mom. So mom is getting a lot of snuggle time (and lots of reading done while holding a sleeping baby). Life is good. (Sure, it would be better at home with a healthy nursing baby, but hey, this is what we’ve got.:-)

Friday 8/17/18 9:45 AM

Thursday, found Abby still extremely swollen, she looks like a little Michelin Man.To deal with the severe swelling, besides the Mommy Medicine of holding and touching (see update below), Lasix (a medication to increase urine output) was given and produced several wet diapers. But the swelling continues. 

Also the lymphatic doctor recommended trying a larger dose of tpa that would not only break up clots inside the chest tube but would enter the pleural space and break up any clots there that may be preventing her normal accumulation of fluid in the chest. This actually worked and she had good chest tube output by the time mom left yesterday evening. By reestablishing her original problem we’ve provided an outlet for her lymphatic system and this should decrease her edema. 

Speaking of Mommy Medicine, Abby is still on enteric rest, gut rest -she gets no food by mouth or into her stomach, and active sucking is not encouraged. Gut rest seems to be important in healing chylothorax. For Abby, the only exception to the enteric rest is Immune Therapy: she has gotten a few drops of her precious momma’s milk. Mommy Medicine is the best medicine (but I am a bit prejudiced :-).

Mom believes that Abby is back up to her birth weight -unlike most babies at almost three weeks of age, for Abby this isn’t a good thing. She was born at 9 pounds, 9 pounces but probably 3 pounds of that was extra fluid: judging from her frame, she ‘should have’ weighed about 6 and an half pounds.

As of yesterday, there was talk of possibly doing a lymph venous anastomosis in two weeks. This microsurgery procedure is done for breast cancer survivors plagued with arm swelling. In an infant such as Abby with pervasive lymph drainage issues, it would be much more involved than this video explains.       

There is also talk of possibly sclerosing the cyst in her neck before the possible lymph venous anastomosis. Mom and dad are waiting patiently (sometimes more patiently than others) to see the surgeon and make a plan.

Medically, Abby is still in a pretty dire immediate situation with a fabulous long term prognosis, if she survives this period and if a solution is found for her fluid management issue. Good thoughts, prayers, brilliant ideas and miracles appreciated.

If you are interested in the lymph system, fairly nerdy and have 10 mins, check out this video.

Michelle
May all babies be born into loving hands

Friday 8/17/18 8:00 AM

My sincere apologies for missing a day of updates: there just never seemed to be 15 minutes uninterrupted yesterday to get Abby’s news on to the blog.

Yesterday, Abby’s mom told me that her birthday on Wednesday was great -she actually got to hold Abigail Grace. Not holding Abby’s hand or stroking her head, but actually holding her whole body. Such an ordinary act that mothers perform daily across the world, is extraordinary in the world of the critically ill newborn. When you look at the attached photos, I encourage you to look past the tubes and wires and see the grace and gentleness that Abby, her mom and her dad all have. So sweet.

Aby’s swelling on Wednesday was still quite terrible and mom suggested medication (Lasix) to bring it down. The staff said that actually Abby needed to move more to get the fluid to shift. So, mom being a smart woman, piped up “How about me holding her?” And it happened.

Wednesday 8/15/18 8:00 AM

Yesterday was a really rough day for Abby (and her folks). 

Abby blew up with edema -face, head, chest, and evidently inside her lungs as well. Breathing was hard, with ‘guppy out of water’ breathing in spite of changes in the vent settings. Thinking that the chest tubes simply weren’t draining, they checked with Interventive Radiology to place new tubes, but there was no fluid in the space around the lungs. Also peeing was not on Abby’s list of things to do yesterday. Her little body was holding on to fluid in all the wrong places. 

All these changes may be an inflammatory response due to the extensive imaging on Monday. Hopefully with a little time and extra steroids, this swelling will settle down. Hopefully today doctors and surgeons will come up with a plan for Abby’s fluid/lymph/chyle management. 

Abby also had another bout of rash on her trunk, this one much more extensive. The current thought is that this may be a reaction to the vitamins in her TPN: other children have shown a reaction like this. So TPN was stopped late last night and allergists are being consulted. 

Today is Abby’s mom’s birthday. Wishing her a generic “Happy Birthday” seems a bit lame given the circumstances. So I’ll just image her celebrating her birthday in 2021, sitting in the backyard, sharing a drink with her hubby, watching 3 year old Abby chase big brother Jack around and around a cool, new swing set. 

 

8//14/18 9:00 AM EST

Abby had extensive testing and imaging of her entire lymph system yesterday. She was in the Cath Lab for hours and hours (like 6 hours). And she did just fine.

What was learned? Well, like many things so far with Abby, it’s complicated, more questions arose than answers, and the next step is not exactly clear.

Abby does have a thoracic duct. But that duct does not appear to drain into the veinn like it should -so there will probably be an attempt to create this drainage surgically. (The surgeon arrives today from Argentina. Hope he is well rested!)

Abby has a cyst in the webbing of her neck called a cystic hygroma. In Abby’s case, this cyst might to be interfering with lymph drainage so yesterday the image doc drained some fluid off cyst. They may work on this more later.

One thing that yesterday’s imaging clarified is that Abby does appear to have a pretty unusual lymphatic system! And that brings up another question -what about her genetics? So Abby, mom and dad are all to be tested for genetic information. (Read this as more blood tests, more specialists, more waiting, maybe answers that will be helpful, maybe not…)

So for today, Abby is in Philly, her mom and dad are in Philly, there is a surgeon arriving to look at Abby (and all of her information), genetic specialists are to be consulted (and data to be collected). And the ventilator is still working away. And the chest tubes are still requiring interventions to drain. And Abby is still cute. And she and her family still have a glimmer of hope that this will all be remembered as the rocky opening chapter in the long and lovely book of Abigail Grace.

8/13/18 3:00 PM EST
Notes from Mom Leslie

He (doctor) just showed us the imaging.

It appears she has a Thoracic duct 

It also appears the cyst in her neck may be involved in creating an issue at the duct.

He has gone in to investigate further

Possibly the cyst is putting pressure on the duct and inhibiting flow into the vein. Possibly the cyst inhibited development of a normal duct/vein connection.

Possibly the cyst is putting pressure on the duct and inhibiting flow into the vein. Possibly the cyst inhibited development of a normal duct/vein connection.

So more waiting for us….

 

8/13/18 12:00 PM EST

8/13/18 7:00 AM EST

There are many babies and families in the world that born facing Death’s Door. Baby Abigail Grace is one. (This Welcome To The World post has general information, many explanatory links, and lots of photos). 

Two weeks old today, Miss Abby has never been held skin to skin (but mommy and daddy’s voices, scents, fingertips and palms convey love every day), she has never eaten (nourishment has gone straight into her veins), she took her first breathes on her own, since then machines have breathed for her (it is really hard to breath when your lungs are being squished by fluid and your chest weighs twice as much as it should because of even more fluid). There have been many procedures (chest tubes to drain fluid accumulating around fragile lung tissue, then fancier chest tubes, IV lines, arterial lines, picc lines, blood draws…). Procedures, pokes and prods mean risk of infection, and like other kids with lymphatic leaks, Abby’s white blood cell count is low (WBC was 3 yesterday, we’d like at least three times that). For Abby, an overwhelming infection is quite possible. Things are really serious. 

And there is a glimmer of hope -a procedure today, scheduled for 10:30 AM EST.

The procedure, a lymphangiography, is an imaging study what will show the architecture of her central lymph system. It will hopefully show that there are leaks that can be ‘patched’, by Lymphatic Duct Embolization, basically using poppy seed oil (lipiodol) as glue. If this procedure is possible, if it works, and if there are no terrible complications, Abby should have another week or two in her Neonatal Intensive Care time share. Then, finally, she will get to go home and be the ordinary miracle that we call a baby.

Michelle
May all babies be born into loving hands

Notes from Mom Leslie Sunday 8/12:

A line is out. Left Chest tube has required 2 rounds of tpa to keep draining.
She’s had a good 4 hour sleep period this afternoon.
Procedure time keeps changing. Currently 1:15 tomorrow
They say if they treat, it can take 1-2 weeks for substance to sclerose the leaky areas
Old picc was removed. New picc in left saphenous placed yesterday.
Going to get immunoglobulin levels tomorrow
White count is 3. Two days in a row it’s been low. Apparently typical for lymphatic leak kids.

The chest tube drainage from Abby is impressive!

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